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INTRODUCTION A generation consists of people who were born in a period that is marked by historical and social aspects and takes into consideration their year of birth. Considering this, each generation shares similar beliefs, behaviors, and characteristics that allow them to be distinguished . The focal point is Generation Z . This generation, currently consisting of young people, has received increased interest as a research topic as it is the latest generation that entered the workforce around 2017. Gen Z, as one of the newer generations, has received different names in research because of its characteristics. While in German literature, the term Gen Z is used chiefly , in Brazilian research, different labels such as Geração Digital, Geração Internet, or Geração Next can be found . The period of this generation also differs depending on the researcher, but a standard classification is from 1995 to 2010 . In general, however, it can be noticed that Gen Z shows shared characteristics globally with people in the same cohort in different countries . Nonetheless, even by being a global generation and sharing a common context that influences their worldview, people from Gen Z do not share the same values and experiences . Extreme events, positive or negative, are often stated to shape the way of thinking of a generation. The generation is often presented as a global one where people are more connected with technology. An element nudged for the research topic of this paper is a comparison of this generation in specific countries, Brazil and Germany. Topics that are affecting Gen Z are technology as well as their values in the working environment. Differences in specific countries might be less visible regarding values, beliefs, and attitudes. However, variations might be detected because of aspects such as the labor market situation . The research problem is based on the perspective that generations share a common behavior. However, this behavior can be shaped by cultural differences that make the generation's perspective not glob-ally homogeneous. While other generations have already existed in the labor markets globally, Gen Z is still considerably new and has particular interests that reinforce the importance of understanding their behavior related to work . This is combined with many companies facing problems filling vacant positions and pointing out a shortage of talented workers. To tackle the shortage of skilled workers, employers can, therefore, target Gen Z workers and attract them to their organization. Cultural differences between nationalities are a relevant variable for understanding generational changes . Previews of literature regarding Gen Z work values are mainly monocultural studies that focus on global values and digital immersive aspects of Gen Z . Therefore, research on cultural differences in Gen Z values and attitudes can contribute to the development of the literature on the Gen Z workforce. In this sense, it is relevant to investigate how Gen Z considers work possibilities and how attitudes toward technology influence this generation from a cross-country perspective. This research aims to analyze the differences related to work values and attitudes toward the technology of Gen Z in Brazil and Germany. The study was conducted using a quantitative approach, applying a survey with 122 participants from Brazilian and German Gen Z and comparing the results between the countries. This paper contributes to discussing attitudes that shape Gen Z in the process of entering the workforce. In addition, this research points out a different approach to this generation that is mainly presented as a global one with similarities. By comparing the nationalities of two distinctive continents and levels of development, it provides an insight into their differences regarding work values and attitudes, which can be valuable for businesses. Regarding the skill shortage both countries face, providing businesses with a deeper understanding of Brazilians and Germans of Gen Z can help them set up or improve their strategies. The research contributes by presenting cultural differences between Brazilian and German Gen Z participants and discussing factors related to work and technology that are increasingly interrelated concepts due to changes in current work boundaries. --- THEORETICAL BACKGROUND AND HYPOTHESES --- Generation Z characteristics Although influenced by events and experiences, giving the term generation a fluid dynamic, researchers try to group people in cohorts of about 20 years. Traits and behaviors are identified and distinguished from those of other generational cohorts . Ryder defines a cohort as "the aggregate of individuals who experienced the same event within the same time interval." Compared to generations, cohorts are identified by the length of their defining external event . Gen Z grew up during a time shaped by uncertain economic times, political turbulence, terrorism, and violence in different countries , as can be highlighted by the September 11, 2001 attacks in the United States, the global financial crisis in 2008, the Arab Spring, and the refugees crisis. Recently, this cohort experienced the coronavirus disease 2019 pandemic during their formative years . Regarding demographical aspects, they generally live in smaller families with fewer siblings and older mothers . Researchers expect Gen Z to be the most educated generation in the world until now . As the most diverse generation , Gen Z values women's rights, transgender rights, religious freedom, and human rights . Gen Z, as a global generation, cares less about geographical frontiers . For Gen Z, smartphones and social media have become a consistent part of their lives. They are internationally connected through technology, globalization, global brands, online entertainment, social trends, and communication platforms . As this generation was raised with technology in their everyday lives, they tend to be quick and efficient while switching between activities and expecting everything to happen fast and instantly with rapid reactions . In general, this cohort is less social and more individualistic, which can be noticed in group work at school or teamwork and in their struggles to commu-nicate personally and meet with others . They also prefer to be recognized individually and intensely tend to be independent. However, Brazil's level of individualism is lower as Brazilian people from this cohort tend to be more collaborative . Furthermore, Gen Z is open-minded and enjoys freedom by having less sense of commitment . Interaction with others often occurs in a virtual context, and Bencsik et al. additionally argue that a level of superficiality is visible in interpersonal relationships. Their interest in higher education comes from valuing innovation and entrepreneurship, resulting in many Gen Z students willing to work for themselves after finishing college . Furthermore, this generation likes challenges, flexibility, and autonomy and is used for multitasking and doing several activities simultaneously . --- Work values Work values can differ between times, considering the modern work challenges and configurations. So, work values are different across generations . Gen Z can be described as confident and entrepreneurial . When working on tasks, Gen Z gets bored of doing repetitive or standard tasks. Instead, they prefer meaningful, entertaining work that challenges them because they aspire to be innovative and entrepreneurial, giving them a chance to prove themselves. That is why they also like opportunities to work individually and independently, offering this generation much autonomy to complete tasks . Compared to other generations, people from Gen Z are more likely to aspire to hold a leadership position in a company that involves responsibility . Since speed is a characteristic that marks this generation, they also expect their careers to progress rapidly . Progress in their career should happen vertically and horizontally, and they prefer to base their performance on the quality of their work instead of working hours . In this sense, Gen Z is motivated by freedom, non-commitment, and receiving these rewards immediately . Internext | São Paulo, v.19, n. 1, p. 63-76, jan./abr. 2024 They aspire to have a good working relationship with their coworkers. However, Gen Z does not necessarily prefer to work in a team but rather depends on themselves to accomplish tasks as they are self-reliant. Furthermore, this generation wants to feel valued at work and to have their personal and organizational values lined up . According to Weitzel et al. , they value a carefree and safe work environment, satisfaction, and recognition. Growing up during uncertain economic times and instability, Gen Z thinks employers must offer job security, as Randstad stated. Since Gen Z generally does not feel very secure financially, they desire an appropriate salary, performance-related pay, and benefits . This includes immediate remuneration as a motivational factor and stability factors such as health plans, paid family leave, or retirement funds . Nevertheless, people from this generation are not very loyal to their employers and quit their jobs easier if they are unhappy . An attractive organizational culture is essential for employers to attract and retain talent from Gen Z. For this generation, activity-based engagement, a diverse working environment without discrimination, and the opportunity to build personal relationships are significant . Furthermore, this generational cohort values coworkers ' and supervisors' support . Gen Z values flexibility at work. For them, flexibility can be seen as working on "flexitime," which means working at a time they prefer instead of determined hours or working from home . In addition, Gen Z seeks open and constant communication at work and prefers communication or discussions in person in order for them to improve . That is why they like to receive feedback, especially from people in the company that delegate tasks to them . Differences regarding work values can be visible across generations. However, many similarities exist as well. Leslie et al. claim that analyzing Gen Z as a group is too general, and they, therefore, propose dividing the cohort into three subgroups. When choosing to work for a company, Gen Z pays attention to whether the organization is involved in social initiatives and cares about corporate social responsibility . In a study conducted by Arora et al. , it was found that for Gen Z students in India, cognitive and instrumental work values were seen as more important than social and prestige work values. Their priorities resulted in continuous learning and career advancement, job security, a work-life balance, and a fun working environment. Besides the many characteristics that define Gen Z and work values, it is recognized that work values differ according to contextual national culture . Weber and Urick found that differences regarding personal values are more substantial by individuals' country of origin than by generations. For this study, the differences between Brazilian and German Gen Z are evaluated regarding the following hypothesis: H1: The Brazilian and German people of Gen Z present differences regarding their work values. --- Attitude toward technology Technology and the Internet have been part of Gen Z since they were born, and they do not know a world without having access to computers, chats, or phones . According to Pichler et al. , 95% of teenagers had access to a smartphone in 2018, and almost half of them were constantly online. Being "digitally savvy" has led to researchers labeling this generation as "digital natives" . Rosen et al. also state that young people tend to use a lot of technology and that a preference for switching tasks comes from this technology usage. This generation is constantly connected to the Internet and the virtual world . Through technology and Internet access, they can quickly find all the information they are looking for online, and much of their knowledge comes from these sources . They are used to connectivity in their private and personal lives. Gen Z is actively using social networking sites, where they usually share information about their private lives. Since they spend much time online, they expect fast replies and generally demand speed in activities, processes, or their careers . Moreover, it is common for them to "like" posts or comment on Internext | São Paulo, v.19, n. 1, p. 63-76, jan./abr. 2024 them. Therefore, giving feedback is normal for them, and they expect it from others in return . For Gen Z, it is common to communicate through technology and keep in touch with people through frequent Internet use. Therefore, relationships are often less interpersonal . Çora also states that the attention span of this generation is shorter and, therefore, their communication includes many symbols, emojis, and emoticons. However, Gen Z understands the negative effects it can have on them, such as addiction or distraction. It can also be the feeling of anxiety or the fear of missing something when unable to access technology and check it constantly, making them more dependent on their technological devices . Weitzel et al. found that more than a third of Gen Z candidates in their study feel exhausted and less capable when using digital technologies at work. Their consumer behavior shows that they respond less to traditional advertisements but to recommendations from friends or influencers . Since Gen Z is used to taking advantage of technology and incorporating it into their daily lives, technological advancement makes them feel hopeful for the future . Nevertheless, Weitzel et al. discovered that this generation also regarded digital transformation with a sense of worry based on evidence that one in three respondents fears being replaced by artificial intelligence; looking 20 years into the future, more than half of Gen Z shares this fear. The debate about artificial intelligence and work replacement is a concern nowadays and can influence the attitudes of Gen Z. It also indicates that job skills of innovation, creativity, judgment, and empathy have to be developed by the workers that will find a workplace with intensive use of technology . Considering the global impact of technology across countries in the last few years, the following hypothesis is proposed: H2: The Brazilian and German people of Gen Z present similarities regarding their attitudes toward technology. --- METHODOLOGY The hypotheses proposed were tested in a survey applied to Brazilian and German individuals in Gen Z. The relevance of the cross-country study, the questionnaire, the sample, and the data analysis are presented. --- Cross-country study The literature about generations has studies comparing generational cohorts, but studies about country differences remain a research opportunity. It was selected from two countries on different continents with different cultures and contexts. The countries are presented, describing their job markets. Brazil, the largest economy in South America, has about 213 million inhabitants, and 70% of its population is of working age. Its young population, less than 15 years old, has been shrinking steadily and makes up around 20% of the total population, while the elderly population, over 65 years old, is growing to 10% in 2020 . One of the Brazilian economy's challenges is labor productivity, which has been low over the past decade, resulting in lower competitiveness . Moreover, issues Brazil has to handle are high youth unemployment and underemployment, high informality in the job market, social inequalities, low education quality , and the displacement of jobs caused by automation . Germany, as the EU's largest economy, has a population of 83.1 million in 2021 after a low of about 80 million in 2011, with around two-thirds of its inhabitants of working age between 15 and 64 years. The population under 15 years makes up 13.9%, while the elderly population reaches 22.09% of the inhabitants . Demographic changes and a shift of the population from a younger to an elderly population considerably influence the number of people in the workforce. Korn Ferry further claims that in 2020, Germany and Brazil were already experiencing a deficit in terms of labor shortages. They predict that in 2030, Brazil will even face an acute deficit of 12-18 million workers in the labor market. Comparing both countries is relevant because Brazil and Germany have historically developed economic and commercial collaboration . Germany is one of the most traditional investors in Brazilian territory and has Brazil as its main partner in South America . In this sense, cross-country studies can provide relevant insights into the country's relationship. --- Survey questionnaire The following two constructs were measured: work value and attitude toward technology. It used two different validated scales. Work values were measured based on the research of Arora et al. , which was conducted with Gen Z students in five postgraduate and undergraduate colleges in India. The authors used a 25-item scale developed by Lyons et al. in order to measure four dimensions regarding work values, namely, instrumental values , cognitive values , social/altruistic values , and prestige values . The measurement for each item based on Lyons et al. was on a 5-point Likert scale regarding its level of importance, including "not at all important," "somewhat important," "important," "very important," and "absolutely essential." Participants were asked to indicate how important each statement would be in deciding whether to accept a potential job or stay in a job. The sample group's attitude toward technology was measured using the "Media and Technology Usage and Attitudes Scale" provided by Rosen et al. . As the authors suggest this method for various research fields, a subscale of the 60-item scale was extracted for this paper. Four dimensions were included in this work: positive attitude , anxiety and dependence , negative attitude , and preference for task switching . The items were measured on a 5-point Likert scale ranging from "strongly agree" to "agree," "neither agree nor disagree," "disagree," and "strongly disagree." Participants were asked to what extent they agreed with the statements when thinking about technology in their daily lives. For the Brazilian population, the questions were translated from English to Portuguese using the professional method of translating scales. A translation to German was not found to be necessary. All questions were then transferred to the online portal, Lime Survey. --- Sample A non-probability sampling method was chosen with the assistance of convenience and volunteers, including the snowball technique. In total, 146 responses were counted as valid for the analysis. Cronbach's alpha was evaluated with 122 valid cases, while 24 were excluded. For the first variable, birth year, the results show that most participants stated their birth year between 1997 and 2000 [f=19; f=21; f=15; f=25]. For nationality, there are 60 Brazilians and 62 Germans. The study presents a balanced sample in terms of nationality, which contributes to the cross-country analysis. However, it is not a generalizable sample given the choice of the non-probabilistic sample technique. In the next step, the links were forwarded to Brazilians and Germans among acquaintances of the researcher. Furthermore, they were asked to distribute the link to friends that matched the inclusion criteria. Platforms used for distribution were WhatsApp and Instagram. Geographically, answers were mostly collected in the regions of Bavaria and Fortaleza because of the snowball technique using social connections among participants. Both regions are recognized as less cosmopolitan than, for example, Berlin and Sao Paulo. The survey was online from January to February 2023. The current global scenario is characterized by exponential growth in technology, triggering profound transformations in ways of working. The convergence of innovations such as artificial intelligence, automation, and cloud computing is redefining traditional employment structures and driving a digital industrial revolution. The rise of remote work, facilitated by digital connectivity, is challenging conventional notions of workspace, enabling unprecedented flexibility. Furthermore, the need for specialized skills in the digital era is shaping the dynamics of the job market, demanding constant adaptation from professionals. --- Data analysis Frequency tables were created for socio-demographic variables to get an overview of the number of respondents for each category. A descriptive analysis was performed for each dimension, including the mean and standard deviation. As a next step, Cronbach's alpha was calculated for the two scales' attitudes toward technology and work values to check for the reliability of the items. To evaluate differences between Brazilian and German Gen Z, a t-test was conducted for these two groups. They come from two different populations in their respective countries. Logistic regression models use a binary variable as the dependent variable and as independent Internext | São Paulo, v.19, n. 1, p. 63-76, jan./abr. 2024 variables work values and attitudes toward technology dimensions. Therefore, an independent t-test was performed. It used the software Stata 13.0 for the data analysis. --- RESULTS The results show the analysis of work values in four dimensions: instrumental, cognitive, social/altruistic, and prestige. The attitudes toward technology are also analyzed in four dimensions. --- Work values Cronbach's alpha was calculated with 122 valid cases and 24 excluded out of the total of 146. With a total number of 25 items, Cronbach's alpha resulted in a reliability of α>0.891, which is considered to be a good reliability of the scale. When items were deleted, Cronbach's alpha showed almost no differences, and it remained at α>0.80. Analyzing the work values for Brazilian Gen Z resulted in having the opportunity for advancement in their career, cognitively, [M=4.88, SD=0.324] as "being almost absolutely essential." This is followed by an instrumental value: "working in an environment that allows you to balance your work-life with your private life and family responsibilities. For German representatives of Gen Z, the least important aspects were all found in the prestige dimension, with the result that they were just somewhat important. This included, as for Brazilians, the aspect of authority [M=2.24, SD=0.935], although comparatively lower. On the other hand, the ability to bal-ance work and private lives [M=4.42, SD=0.666], was most important to German Gen Z. The mean for each nationality regarding the four dimensions indicated a difference between Brazilian and German Gen Z work values, and To measure significant differences between both nationalities, the t-test was applied. For all of the dimensions of work values, significant differences were found . Figure 1 illustrates the mean differences related to work values. Considering the logistic regression, the variables that explain the difference between Brazilians and German participants are instrumental work values and prestige work values. Table 1 presents the result of logistic regression and the mean differences. For work values, it can be stated that the four dimensions, i.e., instrumental, cognitive, social/altruistic, and prestige presented significant differences, while the dimensions social/altruistic and cognitive did not present significant coefficients in the regression logistic. Combining the results, the hypothesis H1: The Brazilian and German people of Generation Z present differences regarding their work values is supported by the sample. --- Attitude toward technology Cronbach's alpha was evaluated with 122 valid cases, while 24 were excluded. With 16 items on the scale, the result showed a reliability of α>0.659. Although this can be seen as uncertain regarding reliability, it was decided to keep the scale as it has been used in previous studies. Brazilians of Generation Z agreed the most with the statement, "Technology will provide solutions to many of our problems." [M=4.48, SD=0.624], while for German representatives it was the statement "I feel it is important to be able to access the Considering the logistic regression, the variables that explain the difference between Brazilian and German participants are positive and negative attitudes. Table 2 presents the result of logistic regression and the mean differences. For attitudes toward technology, it can be stated that two dimensions presented significant differences. Considering that differences were found, hypothesis H2: The Brazilian and German people of Generation Z present differences regarding their attitude toward technology is supported by the sample. --- DISCUSSION This study compares Gen Z in Brazilian and German contexts. It is important to highlight that these Hofstede, and Minkov's model, a largely used perspective to understand differences among national cultures, Martins et al. emphasize that Brazil and Germany present differences in the dimensions of the model. Germany presents higher scores for individualism and masculinity, and Brazil presents higher scores for power distance and long-term orientation, but the tolerance for unexpected events is similar in both countries . Smith et al. compare cultural differences between Brazil and Germany in the complex problem-solving process. Brazilians may tend to have more emotional expressiveness and are not restricted to formal communication, while Germans may be more focused on orderliness and planning . These cultural differences can also be perceived in work values and attitudes toward technology, as discussed in this study. --- Work values The results for work values suggest that Brazilian and German Gen Z differ in many aspects regarding their attitude at work. While for all the dimensions, the results show a high mean average, for Brazilians, the score is higher. An explanation for the difference could be their distinctive experiences in the labor market. The circumstances in which this generation grew up in each country are different, and, therefore, their geographical location might also impact their attitude, as Ryder commented. For Brazilian Gen Z, the most important work value is the opportunity for career advancement, followed by balancing private and work lives. Career advancement was identified as being less important for German respondents. Colet and Mozzato see a relationship between online usage and aiming for fast career development. The findings can confirm this statement, as German participants have a more negative attitude toward technology and are less interested in career advancement. Further instrumental items that show a difference between Brazilians and Germans are salary and job security, which can also be traced back to the labor market situation that is more stable in Germany with a higher employment rate and higher wages . The importance of recognition and feedback, as indicated by Weitzel et al. , could be confirmed in the findings with a higher score for Brazilians. Having a supportive supervisor is important to both nationalities and coincides with Pichler et al. . On the other hand, the fact that Gen Z likes to work autonomously and independently coincides with Chillakuri and Mahanandia . Regarding social/altruistic aspects, Barhate and Dirani's findings confirm that Gen Z prefers to work in a fun and lively working environment and have coworkers with whom they can form friendships. The difference could be detected in doing work that allows for helping people. This difference can be explained by the level of individualism in each country, as stated by Seemiller et al. . While for Brazilians, it is almost absolutely essential, for Germans, it is somewhat important. Gen Z in both countries places less importance on doing work that is highly regarded by others. Randstad indicates that this generation is likely to hold leadership positions, which the findings could not confirm. In both groups, the least value was placed on organizing and directing the work of others. Offering a good work-life balance for employees is highly regarded by respondents from both countries, which should allow them to choose hours more freely and the opportunity to work remotely or work a four-day week, as indicated by Chillakuri and Mahanandia . In addition, the findings show the importance of recognizing good performance, providing constructive and frequent feedback, and creating a lively working environment. On the other hand, social interaction at work is less important for Gen Z. As Brazilians place importance on helping people with their work, employers should find a way to either first implement this aspect in their strategy or employer branding or, in the next step, communicate it openly and visibly. Another aspect is to pay Gen Z workers an adequate salary and provide job security, which will be attractive for this generation. In Germany, social and prestige work values are less important to this generation. Putting them in leadership positions or assigning them tasks or projects where social interaction is necessary can be less attractive to them. Nevertheless, fostering a fun organizational culture that allows for forming friendships with coworkers can be a plus. Interesting and exciting work is also --- Attitude toward technology Gen Z is often presented as a global generation that shares common beliefs, behaviors, and attitudes because they experience the same historical events and are connected through technology. Evaluating the responses of the Brazilian and German participants in Gen Z shows that their attitudes are relatively neutral toward technology; for Brazilians, however, they are moving more in the positive direction. Brazilian Gen Z has a more positive attitude, stating that technology will provide solutions to problems, which coincides with the research of Broadbent et al. , which indicates that Gen Z feels hopeful about technological advancements. As indicated by Colet and Mozzato , Gen Z places much importance on having access to technology. The results also show this generation's importance in accessing the Internet and finding information online anytime. Germans show a more negative attitude toward technology because it isolates people and wastes too much time. This aligns with the findings that German Gen Z seems more dependent on their technology than Brazilians. For businesses, the findings suggest that different strategies for Brazilians and Germans should be implemented when using technology in the workplace. The fact that Gen Z desires to use technology at work, as stated by Barhate and Dirani , cannot be entirely backed up by the results. When dealing with Gen Z in Brazil, using technology in the workplace might not result in an issue as their attitude is positive. Nevertheless, it seems helpful to offer training opportunities that show the negative effects technology can have. That could help people from this generation in Brazil deal with their anxiety when they are unable to access the Internet. In Germany, Gen Z should not get overwhelmed at work by using technology constantly, as their attitude is more negative, which could also lead to worse results in their tasks at work. Weitzel et al. also con-cluded that Gen Zs feel exhausted when using technology at work. Therefore, offering tasks that can be concluded offline or having meetings and communication with coworkers and supervisors in an offline environment seems useful. In this sense, creating training opportunities that allow employees to establish a more positive relationship with technology is beneficial. --- CONCLUSION Based on the study, it can be concluded that differences are found regarding the work values of Brazilian and German Gen Z. Brazilians' work values, whether instrumental or extrinsic, are stronger. Although both nationalities are interested in having a good relationship with their coworkers and less in social interaction, they differ in terms of doing work where they can help other people. Prestige work values, especially having the authority to direct others, are more important for Brazilians than German Gen Z. Their attitude toward technology presents differences between Gen Z in both countries. While Brazilians have a more positive and less negative attitude regarding technology, Germans are neutral toward it and its negative side effects and express restraint in terms of the usage and development of technology. Differences that exist between nationalities should be explored more. While the sample size limits the generalizability of the findings, the approach provides insights on two areas that currently impact Gen Z, states their way of thinking, and contributes to presenting an understanding of the generation in both countries. Brazilian participants place high importance on most of the evaluated work values. The highest are instrumental or extrinsic work values, including salary, job security, feedback, having access to information, and work-life balance. The last two are also important factors for Germans, followed by intrinsic work values such as interesting work, freedom of choosing how and when to work, and the opportunity to learn continuously. Brazilian Gen Z puts higher value on their career advancement and the possibility to apply knowledge they have developed during education. Regarding technology, Brazilians experience higher levels of anxiety in relation to the usage of the Internet and phones. Also, both nationalities are less in favor of multitasking and switching between tasks or activities intermittently. These research evidences Internext | São Paulo, v.19, n. 1, p. 63-76, jan./abr. 2024 have practical implications for policies and strategies to attract and maintain workers from Gen Z and also have implications for multinationals or partnerships between countries in terms of adequate work conditions and feedback, as well as expectations of alignment in multicultural teams. Further research is needed as businesses implement strategies based on these findings targeting Gen Z in Brazil and Germany. Their effectiveness can be evaluated in terms of the attraction and retention of talents. Practitioners should consider conducting qualitative and quantitative analysis with Gen Z representatives in Brazil and Germany and investigating further into specific employment sectors to provide more discussion about the effect of cultural differences in multicultural teams and remote work migration. As a contribution, the findings support that Gen Z presents differences according to nationalities relevant to shaping their relationship with the work. Their relationship with technology differs, influencing how or if they prefer to use it in the workplace. Regarding work values, the importance of instrumental, cognitive, social/altruistic, and prestige values varies significantly between Brazilian and German Gen Z. The analysis of both constructs is interesting nowadays because of their interrelationship and the current changes in global work boundaries. This implies proper talent management and adapting attraction and retention strategies to tackle the talent shortage.
The aim of this study was to analyze the differences related to work values and attitudes toward the technology of Generation Z in Brazil and Germany. Method: The proposed hypotheses were tested in a survey of 122 Brazilian and German participants. The data were analyzed using t-test and logistic regression models. Main Results: The results present differences between Brazilian and German Generation Z, challenging the literature that analyzes Generation Z as a global generation and reinforcing cultural differences between nationalities. The Brazilian sample presents more instrumental and prestige work values and is more positive and less negative regarding technology than the German sample. Relevance/Originality: The paper's contribution provides evidence of Generation Z's differences according to nationalities relevant to shaping their relationship with work and technology. The analysis of both constructs is interesting nowadays because of their interrelationship and the current changes in global work boundaries. Theoretical/Methodological Contributions: The literature predominantly presents that Generation Z is a global generation. Comparing participants from two countries with different levels of development provides an insight into their differences regarding work values and attitudes, which can be valuable for business management literature. Practical/Social Contributions: Recommendations for businesses are provided to improve attraction and retention strategies to tackle the shortage of skilled workers. This implies management strategies for firms with multicultural teams.
society and the culture in which it is used. Oath is a universal phenomenon that is adopted to achieve different purposes such as the pledge to perform an action or a duty, with a promise of undertaking that action or promise honestly. In his article titled The Cultural Evolution of Oaths, Ordeals, and Lie Detectors, Mercier confirms that "oath is a culturally accepted way of unambiguously signaling a maximum degree of commitment". There are different types and styles of the oath, and they are instigated according to the situations or settings. Taking the oath depends heavily on the nature of people or societies in which the oath is taken. Assertory and promissory are two main types of oaths and they can be positive when affirming and supporting a statement or a saying, and negative when denying them . It is worth mentioning that culture contributes largely in the formation of oath terms and statements. Cultural and social standards determine the words of the oath, its structure and even the style of taking it. They constitute the oath formula in the society in which this formula is used . --- III. SOCIOCULTURAL ANALYSIS AND PROBLEMS OF TRANSLATING OATH TERMS The way of building the oath depends mostly upon the relationship between the speaker and hearer as well as the social situation. Ahmed says "apparently, all societies perform oath as a requirement for affirmation or taking responsibility and it may be considered a treason or a high crime to betray a sworn oath. Oath can be classified into two main types, formal and informal". Jordanians, like other Arabs, often use oaths to ratify a statement by introducing what guarantees their claim. So, they use a common valuable or respectable character or a thing to make the oath. They resort to Islamic values and symbols believing that any break of an oath would be a dishonor. Nothing than God, the Holy Quran and the prophet Muhammad can unite the oath of all Arabs. What reinforces this orientation is that God himself took oaths in the Qur'an many times for several purposes. In fact, God uses oath-taking to confirm His unity and absolute power, and to warn and threat people who do not obey Islamic instructions. Otherwise, they will face great punishment . According to Labov, this is what makes Arabs keep their words and promises when they oath and attempt to convince their audience and/or readers in their claims or speech . Translating oaths from one language into another is not an easy task. Difficulties of translating them stem from the social and cultural values they retain, as culture and its manifestations are a source of translation challenges . There are many translation procedures that are followed in the translation of oath terms or statements. An oath in the Arab world can generally be taken in religious elements, dear people , revered shrines and honor. To put it in Ahmed's words , "Of course, each society has its own way in taking the oath, whether in the expressions used or by some body movements that accompanied taking it. Regardless of these differences, oathing is almost always used to achieve a common purpose". Kiani mentions more than twenty aims for oathing. To him, the most important aims are to: emphasize a subject, prove the guiltiness and exoneration, make a speech believable, prove claim, assure others, warn and threat others, and excite and encourage others. In order to translate oaths from one language into another, the translator should be universally aware and acknowledged in oathing as a certain translation strategy of oaths can be ridiculous and nonsensical. Qarabesh et al. maintain that, If oathing is universal to all human languages and cultures, the translator's task then becomes easier if he is fully aware of this universality of oathing. However, since cultures diverge, in that, there are certain oaths specific to a particular culture, which are different from those of other culture, he/she should then focus more on the cultural aspects of oaths, where cultures diverge. This paper has two main objectives. It first attempts to investigate the Jordanian oath as a social and cultural phenomenon; it explores the social and cultural values when taking the oath, and how these values influence the way of fashioning it. Second, it tries to translationally analyze the Jordanian oath as a social phenomenon in order to shed light on the social and cultural challenges that arise when rendering oath terms from Arabic into English. --- IV. DISCUSSION One way of emphasizing a person's determination to fulfil a promise is the resort to an oath. The oath can be an oral statement, often taken on scared objects such as holy books and scriptures, whereby the swearer pledges to execute an act in a certain way, accomplish something, or even exert an effort to achieve a certain vow. People differ culturally in the way of taking the oath, based on their customs, beliefs, traditions, and social values. Jordanians, like many other Arab societies, take oaths on something that they highly appreciate and venerate such as the Qur'an, holy shrines, honor, family members . They can also take the oath on venerable items such as the shemagh , eqal aba'ah or bisht by taking them off, holding them, or putting them down on the ground. And since the Arabic coffee is of great social and cultural values, Jordanians take their oath by spilling the coffee pots and emptying them on the ground, implying that the coffee will not be made anymore if the promise is not fulfilled. To continue, Jordanian men can take the oath on features of manhood or virility such as moustaches while women can take it on qussa . --- A. Religion Jordanians oath by religion and sacred signs to prove their viewpoint and confirm their claim. Islam is the main religion in the country and Jordanian Muslims and even Christians take an oath in Islam and Islamic icons. Muslim scholars define oath as a sentence that confirms a statement or a pledge through emphasis and its purpose is to emphasize and stress an oath statement . As religion is sensitive, revered, and sacred, Jordanians typically take their oath by religious icons. Following are examples of Jordanians' religious oaths. Example 1: ‫العظيم‬ ‫باهلل‬ ‫أقسم‬ The most standard formula of the oath in the Arab World is ‫العظيم‬ ‫باهلل‬ ‫.اقسم‬ In Islam, it is prohibited to oath in anything or object other than Allah. In the Pre-Islamic era, Arabs used to oath on idols they established around Ka'ba to worship. To show the real intention of fulfilling a promise, Jordanians sometimes repeat the formula ‫.‪. Sirajudin maintains that, when a person does use Allah's names and attributes in an oath, it becomes obligatory to believe such a person. You may have doubts: if you are unsure of something and person swears by Allah it is fitting that you believe in him because Allah is so great that we do not doubt what is said in His name. What has made taking a religious oath common in Jordanian society is the lack of trust, doubt and suspicion among Jordanians. Formally, the oath formula under discussion is taken by putting the oather's right hand on the Qur'an and uttering it in the presence of the king, for example, in case a government is formed and ministers are assigned ministerial portfolios. Ordinary Jordanians also utter the same oath formula to reinforce their statement when holding deals, as shown in the following example: ‫قائال‬ ‫الفور‬ ‫على‬ ‫حامد‬ ‫رد‬ ‫السداد،‬ ‫موعد‬ ‫عن‬ ‫حسن‬ ‫سأله‬ ‫وحين‬ ‫المبلغ،‬ ‫وطلب‬ ‫حسن،‬ ‫جاره‬ ‫الى‬ ‫فذهب‬ ‫اردني،‬ ‫دينار‬ ‫االف‬ ‫خمسة‬ ‫مبلغ‬ ‫حامد‬ ‫احتاج‬ : ‫باهلل‬ ‫اقسم‬ ‫القادم‬ ‫أغسطس‬ ‫من‬ ‫األول‬ ‫في‬ ‫المبلغ‬ ‫سأعيد‬ ‫انني‬ ‫العظيم‬ . )lit. Hamid was in need of five thousand JDs, and he went to his neighbor Hasan and asked for this sum of money; when Hasan asked about the due time of repaying the money, Hamid immediately replied by saying: I oath by Allah Almighty to pay the money back on the first day of the coming August). In this example, the oath is necessary and is required in such situations, where the deal is mainly concerned with money, which is a sensitive issue in social relations. The current example shows the prompt reply of Hamid to repay the money to his neighbor, Hasan. Hasan has also asked about the money repayment due time. This interlocution at the time of handing over the money vividly shows the lack of trust between Jordanians in such matters, which has become very common in the Jordanian community. To continue, resorting to the oath of Allah Almighty reflects the need to convince the borrower to lend the money since the two parties are aware of the suspicion that has become omnipresent among Jordanians. As far as translation is concerned, literal translation of the current oath formula into English does not convey its social and cultural dimensions; it does not reflect the meanings of the source text. Aichele maintains that, "Every translation betrays and transforms its source text, but a literal translation is more likely to record problems and defects that appear in the source text. Such problems and defects hinder the clear transmission of the canonical message". Not only this, the formula which seems emotive and poignant in Jordanian Arabic oath is viewed as awkward, nonsense, and odd, which is a real translation loss. Example 2: ‫هللا‬ ‫بناه‬ ‫اللي‬ ‫والبيت‬ ‫هللا‬ ‫رسول‬ ‫ودمحم‬ ‫هللا‬ . Taking an oath in Jordan includes some religious associations of Allah such as the prophet and the Islamic shrines to confirm the intention of fulfilling a promise or ratifying a claim. The inclusion may come rhythmically in order to attract the attention of audience, and gain the needed coaxing. Following is an illustrative example that represents a visit paid to voters by a candidate for the parliamentary elections: ‫من‬ ‫مفلح‬ ‫المرشح‬ ‫طلب‬ ‫العشيرة‬ ‫شيخ‬ ‫سرحان‬ ‫االنتخابات‬ ‫في‬ ‫دعمه‬ ‫اجل‬ ‫من‬ ‫اقاربه،‬ ‫جمع‬ . ‫بيانه‬ ‫مفلح‬ ‫شرح‬ ‫ان‬ ‫وبعد‬ ‫قائال‬ ‫سرحان‬ ‫له‬ ‫اقسم‬ ‫االنتخابي،‬ : ‫هللا‬ ‫معك‬ ‫نصوت‬ ‫غير‬ ‫هللا،‬ ‫بناه‬ ‫اللي‬ ‫والبيت‬ ‫هللا،‬ ‫رسول‬ ‫ودمحم‬ . (lit. Muflih, the candidate, asked Serhan, the chief of the tribe, to call for a gathering for his kinsmen for support in the election. After Muflih had explained the election statement, Serhan swore to support him by saying: by Allah, Mohammed, the Messenger of Allah, and the House that Allah built, we will vote for you. In the Jordanian community, oath is needed and is a necessity when a promise is taken to do something. The manner of oath has become a norm and resulted from suspicion and dishonesty that the Jordanians began to experience in their deals. The above illustrative example is a case in point. Jordanians often religiously oath for ratifying promises and pledges. The translation of the present example into English results in many linguistic, social, and cultural challenges. The rhythmic influence shown in the Arabic oath formula cannot be replicated in English; the Arabic lexical item ‫هللا‬ in the Arabic text is assonantly essential, as it helps in convincing the audience. This persuasion is lost in translation as the assonance cannot be reproduced likewise, and thus cannot incur the same effect on the audience. Socially, the people of the source language are familiar with this manner of conversation and they can understand the function, while people of the target text have no familiarity with such an oath manner, which could seem exotic. Culturally, people of the receptive culture do not make their election in the same manner, and they usually vote on the basis of a statement delivered on the screen to the whole nation. As a result, the linguistic, social and cultural implications of the oath taken by Jordanians cannot be recreated in the target culture. According to Rubel and Rosman "The values of the culture of source language may be different from those of the target language and this difference must be dealt with in any kind of translation". Another oath formula that may have the same function and is similar to the present example in wording is ‫ودمحم‬ ‫هللا‬ ‫هللا‬ ‫رسول‬ ‫والخائن‬ ‫هللا‬ ‫يخونه‬ . The only difference in the supporting example is the reference to the traitor and the betrayal as commonly witnessed in the social interactions among Jordanians, which require the oath. Example 3: ‫والكعبة‬ ‫والنبي‬ ‫والقرآن‬ The majority of the Jordanian society are Muslims, and Islam is the religion of the state. Jordanians tend to oath by Islamic icons such as the prophet Mohammad, the Ka'ba as the holiest sanctuary for Muslims, and the Qur'an as a holy book. According to Cakmak ) in Islam "the oath can be made with the Quran, because the Quran is the word of Allah". As wariness and dishonesty may have become a trend in Jordan, many Jordanians adopt oath to prove their viewpoint in what they are saying or what they are intending to do. The oath has emerged as an echo to many economic, social, religious, and cultural changes that Jordanians have witnessed over the last few decades. The current oath formula can be illustrated in the following example that displays bargaining over the price of a sheep in the Friday market: ‫للعشاء‬ ‫بيته‬ ‫الى‬ ‫أصدقائه‬ ‫لدعوة‬ ‫الجمعة،‬ ‫سوق‬ ‫من‬ ‫خروفا‬ ‫يشتري‬ ‫ان‬ ‫مروان‬ ‫أراد‬ . ‫وحين‬ ‫قائال‬ ‫سالمه‬ ‫فاجأه‬ ‫الخروف،‬ ‫ذلك‬ ‫سعر‬ ‫عن‬ ‫سأل‬ : ‫والنبي‬ ‫والقرآن‬ ‫التجار‬ ‫أحد‬ ‫من‬ ‫دينار‬ ‫بمائتي‬ ‫اشتراه‬ ‫انه‬ ‫والكعبة،‬ . (lit. Marwan wanted to buy a sheep from the Friday market because he wanted to invite his friends to dinner. Salamah suddenly surprised him by following oath: by the Qur'an and by the prophet, and by the Ka'ba I bought this sheep by two hundred JDs. What has driven Salamah to surprisingly take the oath is the desire to sell the sheep through the oath that may help in convincing customers. Translating the above oath statement into English results in a translation loss. First, the translation does not reflect the resort to the oath as an outlet to sell one's items, for example, as in the current situation. The function of the oath which lies in the attempt to persuade the partners or the audience cannot be reflected likewise in the receptive culture as selling and buying and other issues are not based on the manner of taking an oath. Moreover, the tripartite divine connectedness between Allah, the prophet, and Ka'ba cannot be reproduced in the receptive culture where people belong to other faiths, where the secularity is followed as a way of life. To add, dishonesty, distrust and doubt as common features of many Jordanians are not easily preserved in translation. Thus, the discussion and the explanation of the oath as a common way of dealing between people can help in revealing these values in other cultures. --- B. Honor and Family Members In some circumstances or situations, some Jordanians oath on their honor to do something or execute a declaration. Believing the oather results from the intense emotional power created on the audience by uttering an oath on dearest elements and taboos such as honor and family members. Uttering the oath causes a direct emotional influence on the addressee or audience. Some Jordanians oath when they do not have things at their disposal. Almutlaq supports this idea when he is says, "One of the most important social norms and values in the Jordanian society is honor. It is considered as a taboo that causing any harm to it will lead to unpleasant results for all members of the community". Oath by honor is very common in the Jordanian society. People usually oath in what is sacred, valuable, esteemed, and sensitive. Honor in the Jordanian culture is represented family female members, who are considered as taboos; mentioning the name of a female is socially considered a shame in some regions. All societies have their own forms of honor and shame. In the Mediterranean societiesincluding Jordan society-honor is one of the constant preoccupations of people of these societies, where the case of honor is very dominant and is the highest social value of the local moral code. Honor is collective and not only personal and it reflects on the entire family or social group . In order to confirm one's intention to do something or accomplish a promise, many Jordanians utter the above oath. In Jordan as well as in the Arab world, oath in honor necessitates that one accomplishes what he is tasked in, or what he intends to do after the oath is said or uttered. The distinctness of the present oath is that it is uttered by males, and more specifically by teenagers. One's own honor, honor of sisters and mothers are highly respected to the extent that young people usually employ them to say their oath. What is more striking in this oath is that the oather may name a sister in the oath. The following example illustrates a situation, where the oath is taken: ‫الثانوية‬ ‫طالب‬ ‫خرج‬ ‫وبدأ‬ ‫للرياضيات،‬ ‫النهائي‬ ‫االمتحان‬ ‫من‬ ‫صعوبتها‬ ‫من‬ ‫الطالب‬ ‫اشتكى‬ ‫التي‬ ‫األسئلة‬ ‫تلك‬ ‫على‬ ‫يجيب‬ ‫المعلم‬ . ‫ان‬ ‫فايز‬ ‫أقسم‬ ‫الصحيحة،‬ ‫اإلجابات‬ ‫مشاهدة‬ ‫وعند‬ ‫قائال‬ ‫دقيقة‬ ‫اجاباته‬ : ‫وشرف‬ ‫وشرفي‬ ‫بدقة‬ ‫األسئلة‬ ‫جميع‬ ‫على‬ ‫اجبت‬ ‫انني‬ ‫وخواتي،‬ ‫امي‬ . (lit. The high school students got out from the final exam of Mathematics, and the teacher began to answer the questions from which the students complained. When seeing the right answers, Fayez swore that his answers were accurate saying: by my honor, the honor of my mother and sisters, I have correctly answered all the questions. Males more than females say oaths. Investigating the oath in this example uncovers that Jordanians say the oath in what is considered a taboo, such as the family female members. This oath springs from the social and cultural values of the Jordanians that necessitate the compliance of the oath utterer in what he promised. Literal translation of the oath statement into English leads to many social and cultural challenges due to the differences between the source language culture and the target language culture. Oathing by female family members is functional in the source text and gives a firm confirmation of fulfilling the promise, a sense that cannot be felt likewise in the target language. Moreover, what is socially and culturally motivating and appealing in the source culture might not be so in the receptive culture due to these differences; this causes social and cultural translation loss. The cultural translation is one of the most difficult types of translations, where the translator tries to convey the cultural context of the SL to the TL. Hron maintains that, "Undeniably, the biggest threat facing cultural translation is wholesale assimilation -the loss of one's cultural identity and social and historical roots, and the erasure of one's source cultural language". Other oath examples in relatives are made by dead people such as parents like ‫أمي‬ ‫وروح‬ ‫بترابه،‬ ‫ابوي‬ ‫وروح‬ respectively by the soul of my father in his grave, and by the soul of my mother. --- C. Body Parts Jordanians sometimes take oath in body parts and in signs of manhood such as the big moustaches. The oath in this case can have a conditional structure; the oather swears, for example, to cut his hand or shave his moustaches if what he promises is not fulfilled or achieved. Example: 1 ‫شاربي‬ ‫ومن‬ In Jordanian culture, the moustache is a sign of maturity and manhood. That is why people keep big moustaches. The thick moustache in the Middle East is not only a personal and a social style; it is deeply rooted in history and has many social and cultural undercurrents. Many Jordanian men have thick mustaches, which are regarded as a sign of manliness, masculine virility, wisdom and maturity; the luxurious mustache was traditionally taken as a symbol of considerable social status. To compliment someone with a heavy moustache, for example, Jordanians may describe him by saying: an eagle could land on your mustache. As such, the moustaches are a sign of dignity and honor; in situations of curse, a man may be insulted by saying: curse upon your mustache. Since thick moustaches are of high social values, men in certain situations take an on them as collateral for loans to be taken or promises to be fulfilled. An illustrative example of taking an oath on moustaches can be explicit in the following example: ‫لولدها‬ ‫وظيفة‬ ‫فارس‬ ‫الشيخ‬ ‫من‬ ‫اليتيم‬ ‫ذلك‬ ‫أم‬ ‫طلبت‬ ‫الوحي‬ ‫د‬ . ‫القاسية،‬ ‫بظروفهم‬ ‫علم‬ ‫وحين‬ ‫أق‬ ‫سم‬ ‫مباشرة‬ ‫بشاربه‬ ‫ممسكا‬ : ‫شاربي‬ ‫من‬ ‫شهر‬ ‫من‬ ‫أقل‬ ‫خالل‬ ‫يتوظف‬ ‫رح‬ . (lit. The mother of that orphan appealed to sheikh Faris for an employment to her only child. When he knew about their hard conditions, he immediately took an oath, while holding his moustaches by saying: by my moustaches, he will get a job within a month. The present example shows that men in Jordan make an oath on their moustaches as a way to prove their firm and real intention to fulfil the task for which the oath is taken. People in the western culture do not oath in this manner, and getting a job is based on qualifications and liability, where applicants fill forms for job vacancies. Translating the dialogue above which includes the oath formula into English is not simple for many social and cultural reasons. The Jordanian traditional way of the oath is highly appreciated in the Jordanian society and oath takers are praised for the favor they do after the oath is taken. These social and cultural values of moustaches, when used to oath, cannot be observed or appreciated likewise in a completely different culture, like the western one. There is another formula of the oath, where the moustaches are employed. This form is conditionally based on shaving one half or one strip of the moustaches or two of them. The following example illustrates the conditional oath on shaving the moustaches. ‫ترع‬ (a dispute erupted between Dalbouh, the owner of that field, and Uweither, who was working as a shepherd for sheikh Farhoud. Dalbouh got so angry and threatened Uwiethr by oathing: I will shave my moustache, if I do not make you regret. In the traditional Arab World, it is very hard to avoid the moustaches among men ranging from the leaders to civil servants and cab drivers. The moustaches are a sign of bravery, fertility, virility, manhood, manliness and one's charisma. So, in Jordanian society, when they want to humiliate and dishonor a man, his moustache is forcibly shaved. Sacher maintains that "in Arabic cultures, swearing "upon my moustache" is a quite a serious thing to do. it is used to seal business deals on a moustache, and lavishing praise on a man's facial hair is the utmost compliment. Conversely, insulting a moustache is a sure way to show scorn and disrespect". The translator is encountered with many social and cultural challenges when literally translating the above oath on the shaving of the moustaches. To express his anger upon grazing the sheep among the olive trees, Dalbouh oaths that he would have shaved his moustaches, had he not made Unwither regret for the fault of grazing in the field of olive trees. Employing moustaches in taking the oath in the original text is very functional and has a very strong message to convey; it shows determination and firmness. This strong threat perceived in the source language oath cannot be reproduced in a completely different culture, where men do not grow big moustaches, and the grown ones are not socially valued. In such cases, a translation based on paraphrasing is recommended. According to Abdellal , the translator when using this translation "attempts to produce the content of the ST without its form. It is usually longer than the original ST because it paraphrases the ST; that is why it is called interlingual translation". Example 2: ‫وكذا‬ ‫كذا‬ ‫تم‬ ‫ما‬ ‫اذا‬ ‫ايدي‬ ‫أقص‬ Conditional statements are used by Jordanians to show their decisiveness to do something. Oathing is one way of giving or showing a firm promise. The vow can have a conditional form, where the pledge taker combines between two events. The following is an illustrative example: ‫والده‬ ‫لكن‬ ‫عالية،‬ ‫درجة‬ ‫على‬ ‫سيحصل‬ ‫انه‬ ‫لوالده‬ ‫وأقسم‬ ‫مطلقا،‬ ‫االمتحان‬ ‫على‬ ‫طارق‬ ‫يدرس‬ ‫لم‬ . The conditionally taken oath in Jordan has resulted from the distrust and dishonesty that have become prevalent in the Jordanian community. At a certain period of schooling, especially in the high school, parents exert enough attention to their teenage sons to ensure getting high scores. The fact that the father, in the present example, is aware his son has not prepared well for the exams has driven him to angrily take the above conditional oath. In the western culture, where the relationship between sons and parents is clear and honest, such a conditional oath cannot be observed. Translating the above oath ‫اذا‬ ‫ايدي‬ ‫أقص‬ ‫وكذا‬ ‫كذا‬ ‫تم‬ ‫ما‬ into English seems awkward and odd because people in the receptive culture are more frank, direct and clear. The case being so, the oath in situations like the one under discussion is nonexistent or too rare. Consequently, the social and cultural values deeply rooted in the Jordanian oath formula cannot be reflected or preserved due to the sharp differences between the two cultures. A covert translation for such situations is recommended to follow by the translator, House defines this type of translation as a strategy which leads "to the creation of a target text that enjoys the status of an original source text in the target culture". House recommends the use of such strategy between cultures that have no particular ties. Other examples that are commonly used in Jordanian culture in similar situations are ‫امي‬ ‫تكون‬ ‫مرتي‬ )lit. my mother would be my wife, if so and so happens; ‫قواد‬ ‫بكون‬ ‫األمر‬ ‫تم‬ ‫اذا‬ and ‫اإلسالم‬ ‫من‬ ‫خارج‬ ‫أكون‬ ‫حمده‬ ‫بتزوج‬ ‫حمدان‬ ‫اذا‬ . --- D. Divorce Example 1: ‫من‬ ‫بالطالق‬ ‫المره‬ Divorce is another way of taking an oath in Jordan. In difficult situations, some Jordanians take an oath of divorcing the wife. Wives are sensitive and divorce results in many social problems; the case being so, and for fear of many consequences, men usually take an oath on their wives. Oathing in divorce dates back to pre-Islamic period, where men used to oath in abstaining from having sexual intercourse and considering wives as mothers and this is called ila' or Zihar . The following example explains how a divorce oath is taken in Jordan: ‫نذير‬ ‫لكن‬ ‫كمساعدة،‬ ‫دينار‬ ‫الف‬ ‫نذير‬ ‫يعطي‬ ‫أن‬ ‫منذر‬ ‫أراد‬ ‫ذلك‬ ‫رفض‬ . ‫المبلغ‬ ‫نذير‬ ‫يأخذ‬ ‫لم‬ ‫ان‬ ‫األربع،‬ ‫زوجاته‬ ‫من‬ ‫بالطالق‬ ‫منذر‬ ‫أقسم‬ ‫بعدها‬ . )lit. Monther wanted to give Natheer a thousand JDs as an assistance, but Natheer refused that proposal. Mother then took a divorce oath of his four wives, in case Natheer does not take the sum of money). What is strange in this example is polygamy, where a man can have many spouses at the same time. Translating the above example into English can result in many social and cultural challenges. In the target culture, a husband can marry only one wife, and marrying more than a wife at the same time is prohibited. In Jordan, oath takers may name one of the wives. Mentioning the name of a wife shows that she is the dearest and therefore the oath is so strong and the husband should execute the promise completely. Following is an example that illustrates such an oath: ‫حينه‬ ‫فأقسم‬ ‫بشده،‬ ‫اعتذر‬ ‫يزيد‬ ‫لكن‬ ‫العشاء،‬ ‫لتناول‬ ‫زمالءه‬ ‫رضوان‬ ‫دعا‬ ‫زوجاته‬ ‫أصغر‬ ‫وهي‬ ‫نوره،‬ ‫من‬ ‫بالطالق‬ ‫رضوان‬ ‫ا‬ ‫قائال‬ ‫وأجملهن‬ : ‫الدعوة‬ ‫تقبل‬ ‫غير‬ ‫نوره‬ ‫من‬ ‫بالطالق‬ . , addition "is a common method in translation. It involves the provision of some essential information for a better comprehension of the translated passage". To be specific explanation as a type of addition is the useful method in such situation, which can help bring out a contextual meaning of the original . The translator should be prudent when using addition in their translation. They should avoid adding too much information and deviate from the core information, converting their translations to a composition. Chen Lim explains "such a translation work is a breach of fidelity, and a breach of fidelity is a taboo in translation". --- E. Headdress Arab men have a peculiar way of dressing. The head cover is called ghutra, and eqal is used to fix it on the head; ghutra or kufiyya as a traditional headdress is designed from a square scarf, usually made of cotton or silk. The function of ghutra is to protect men from sun heat, dust, and other atmospheric elements. Example 1: ‫األرض‬ ‫على‬ ‫والغترة‬ ‫العقال‬ ‫رمي‬ In the Bedouin and countryside regions in Jordan, people put on these two clothing elements; they resemble manhood, leadership, representation, authority and chief authority given to the sheikh of the tribe. The social sacredness and the symbolism of these two head elements spring from the associations that they have in the Jordanian society; it is so shameful if Jordanian men break the promise they give to others, especially in sensitive situations. Putting one's hand on the ghuttra at time of giving a promise or holding the intention of doing something is an oath in itself that should be turned into action. To add, if the oather throws down the ghutra and the eqal into the ground, a firm and strong oath or oath is held, and promises should be turned into practice. (lit. an old women came into sheik Lafi's tent, to get her son out from the prison, after he was accused of stealing the cables of electricity from the high way. Sheik Lafi swore to her and threw down the eqal and the ghutra to the ground in the presence of his men. Translating the scene of throwing down the ghutra or the eqal into the ground would seem ridiculous in English as a target language. People in the receptive culture do not oath in such a manner using pieces of cloth such as eqal and ghutra. Rendering the scene even in a video form does not reflect the social and cultural associations of the two head elements to convey the firm oath, shown while throwing them down to the ground. Thus, enough social and cultural explanation is needed to illuminate the implications of these cultural items, and their reverence and appreciation among Arabs in general and Jordanians in particular. As recommend by Moropa in such cases "the translator may sometimes add some information which is not found in the source text so that the message can be more easily understood by the target reader". The explanatory information is necessary to convey the importance of the eqal and ghutra in Jordanian culture. Such information should not be used indifferently by the translator, who should use them judiciously according to the demands of the text . --- F. Arabic Coffee In Jordan, Arabic coffee as a primary tradition has its social and cultural values. It is served on many occasions and events such as weddings, reconciliation and other social events. Serving Arabic coffee has certain rituals, and the movements made by the coffee pourer or waiter have particular meanings . With the passage of time, the Arabic coffee traditions have constructed and established a heritage that represents the Arab culture. The high prestige that the Arabic coffee has occupied among other drinks has given it a social and cultural sacredness; spilling or pouring the coffee into the ground is considered a form of frim oath in Jordan, and that carries many social and cultural implications. When the sheikh of a Jordanian tribe spills or pours the tribe's coffee into the ground, he expresses an anger and a strictness or firmness in fulfilling a promise or an action to be taken. The way of spilling the coffee or pouring it and the social meanings are understood by Jordanians. The following example portrays how pouring the Arabic coffee into the ground or dirt is a solemn oath. ‫البيان‬ ‫المرشح‬ ‫قرأ‬ ‫أن‬ ‫وبعد‬ ‫اد،‬ ّ ‫عو‬ ‫الوحيد‬ ‫القبيلة‬ ‫لمرشح‬ ‫دعمها‬ ‫لتأكيد‬ ‫االنتخابات،‬ ‫قبل‬ ‫ما‬ ‫أسبوع‬ ‫في‬ ‫القبيلة‬ ‫اجتمعت‬ ‫الق‬ ‫علينا‬ ‫تحرم‬ ‫وقال،‬ ‫األرض‬ ‫على‬ ‫القهوة‬ ‫القبيلة‬ ‫شيخ‬ ‫صب‬ ‫االنتخابي،‬ ‫البرلمان‬ ‫في‬ ‫بمقعد‬ ‫يفز‬ ‫لم‬ ‫عواد‬ ‫إذا‬ ‫اليوم،‬ ‫بعد‬ ‫هوة‬ . . The literal translation of the Arabic coffee formula as an oath into English results in many social and cultural challenges. The Arabic coffee, as a hot drink, has sacredness in the Jordanian culture; and the confirmation and the emphasis of the oath, taken on the coffee cannot be reflected likewise in the receptive culture. Another social and cultural meaning that cannot be reflected in the translation is the size of the emotive meaning, when the oath is taken with the pouring or the spilling of the Arabic coffee into the ground. This necessitates that, the tribe one and all, stand together to achieve and fulfill the promise given in the example above. --- G. Curse Example 1: ‫ريتني‬ ‫وبناتي‬ ‫أوالدي‬ ‫وأقبر‬ ‫أنعمي،‬ One's soul or self is so dear to someone, and the same applies for one's sons and daughters. An oath is normally taken on what is dear to one and of great value. The oather's supplication against himself is known in Jordan as a way of confirming his real intention to do a task, and to give back other's dues or rights as is in the case of borrowing money. . What is surprising in this example is employing the supplication against one's self, sons, and daughters for a request. Dishonesty, doubt and mistrust are among the reasons that have driven Jordanians for oath to show real intention and firmness in doing tasks, and fulfilling promises. Translating the supplication as an oath into English results in many translation challenges. The pledge in a supplication manner is cultural and has many social and cultural values that cannot be sufficiently reflected in English. Only delving deep in the source culture and full comprehension of the Jordanian community can enable the target readers to understand why Jordanians resort to such different and strange ways of oathing. The translator lives in the target culture and traits the translated text as a foreign text, which belongs to a foreign culture. In some cases, consulting some bibliography to comprehend the source culture and its cultural terms and THEORY AND PRACTICE IN LANGUAGE STUDIES manner of expressingoaths using supplication against oneself-is indispensable and necessary for the translator. According to Haque Khan , The cognitive apparatus, ability and strategies of the translator as a necessary mediator" are of paramount importance. It is upon the translator that the comprehensibility/intelligibility of the translated text and the understanding of the source culture depend. the translator should employ such strategies, which not only bridge "linguistic boundaries" but also remove the "cultural barriers". To achieve this end, one of the key strategies adopted by many translators, is the use of supplementary information regarding the culture-specific items and activities. V. CONCLUSION This study has investigated the formula of oath terms and statements in Jordanian Arabic from a sociocultural and translational perspective. It has shown that constructing these terms and statements is based on many social and cultural grounds. The study has shown that oath taking is very common among Jordanians and has emerged as a result of dishonesty and distrust in the Arab society, as a whole. It has been found that oath is taken in many social and cultural aspects such as religion, honor, body parts, divorce, headdress, Arabic coffee, and curse. The study has revealed that the social and cultural values and aspects play a major role in the way and manner of uttering the oath terms and statements. As far as translation is concerned, the study has exposed that the social and cultural values are a real hindrance in reflecting the associated connotations of oath terms and statements in Jordanian Arabic.
This study attempts to investigate Jordanian oaths from a sociocultural and translational perspective. The study shows that Jordanian oaths are insufficiently explored from such a perspective. The paper uncovers that Jordanian oaths have many formulas and are taken in many social and cultural aspects such as religion, body parts, honor, headdress, curse, and Arabic coffee, among many other things. In order to conduct the study, examples resembling these different aspects of oaths are suggested, and some social and cultural details are given before the examples. To make the Jordanian oaths clear, each oath example is contextualized in a social and cultural setting and then followed by a literal translation. Finally, the examples are analyzed and discussed, translationally, socially, and culturally in order to give a ground evidence that Jordanian oaths are difficult to translate from Arabic into English.
Introduction Well-being stems from socioeconomic status, education, mood status, and several lifestyle factors including sleep, physical activity, nutrition, social support, connection to nature, and individual habits such as smoking [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18]. On the other hand, inadequate knowledge, improper attitude, and inappropriate practice such as unbalanced sleep, lack of physical activity, poor nutrition and lack of recreation are the mainstems of obesity epidemics [19][20][21][22][23][24][25][26][27][28][29]. As more than one-third of Indiana population is obese, Indiana State implemented the Hoosiers on the Move program with the objective to build new trails that provide pedestrian-biking trail access within 9 km for every Indiana resident by 2020, [30] with the greater goals to help economic growth, promote health and wellness, and to reduce the increasing rate of obesity in Indiana. Indiana currently offers more than 6500 km of trails, which is more than double the mileage existing 10 years ago [31]. Indiana's goals and objectives were based on studies that have shown that access to nature and outdoors [3,4,32,33] and building new trails increase the amount of physical activity in terms of walking, running, and biking. They also grow the future intention to be more physically active in people living close to the trail compared with people living far from the trail [34][35][36][37]. Similarly, research shows starting to use trails is a good habit that increases the amount of physical activity for individuals [37,38]. In addition, several studies have shown the direct relationship between physical activity and well-being among various age groups of the population [18, [39][40][41][42]. However, the positive effects of using the trails are beyond the benefits of physical activity in trails. For example, connection to nature and social interactions are among some major benefits [3,4,32,33]. The literature is unclear if using trails boosts the wellness and health status for trail users. The current study tried to document this relationship. The goal of the current study was to assess whether trail users reported better wellness and health status than the trail non-users. --- Methods The 2017 Indiana Trails Study was carried out on Indiana State trails. Details of the methods were explained elsewhere [43,44]. In summary, data on demographics, socioeconomic status , physical activity, mood, smoking, sleep, and diet were collected and compared between the users of trails and the non-users. Physical activity and trail use were assessed through Recreation Trail Evaluation Survey [45]. RTES is a valid and reliable tool, with 34 time scale, multiple choice, or Likert scale questions, that inquires about the trail use in terms of social and chronological patterns, type, time, and the amount of physical activities performed both inside and outside of the trail, and the attitudes, safety, accessibility, and concerns about the trails. For instance, it asks: What type of activity do you usually do on the trail? Walking, running, biking, and other types of physical activity are multiple choices for this question that participants were able to select from. Diet [46,47] and mood [11] were evaluated according to the Gallup Diet Questionnaire and Gallup Well-Being Index. They were asked to report number of days in a week that they had fast food, less than 4/5 serving of fruits/vegetables, sadness, no energy to get things done, anger, worry, and physical pain. Each diet or mood question had a score of 0 to 7 . The sum of scores of diet questions represented the total diet score and the sum of scores of mood questions represented the total mood score. The higher the scores, the worse the diet and the mood. Trail user opinions and use factors were determined using survey questions consistent with the past trails' studies [48]. Sleep was evaluated by Mini-Sleep Questionnaire [49]. Each question scored 0 to 7 and the sum of all questions represented the sleep score in regression analysis. The higher the sleep score, the worse the sleep quality. Self-rated wellness and health were determined as the last question of the survey, with 10 being the healthiest state and 1 the unhealthiest [50][51][52]. Ethics approval and consent to participate: The Office of Research Compliance at Indiana University approved the study protocol data collection. All subjects consented to participate in the study . --- Trail User and Non-User Probability Sampling Process The random selection of subjects and trails across Indiana was a critical first step in the research. Using a multi-stage sampling method to address multiple locations in trails, differing locations on and near the selected trails, and times and days of the week that users may prefer were carefully managed to avoid the problems of self-selection sample bias. Additionally, data collection using organization volunteers who would not be appropriately trained in the protection of human subject required detailed sampling processes based on multiple factors in a multi-stage probability sampling process. Factors considered and managed during sampling included weather patterns, regions , land use , agency capacity factors, trail counters' access, and access to the list of neighboring properties. The volunteers were located at predefined trailheads and distributed the research information and the relevant online link to the survey. Data gathering was executed in the second week of April, June, and August and the first week of October, from 6 a.m. until 8 p.m. or dusk if it was before 8 p.m. The selection of participants in the study was carefully planned to best meet the standards of a probability sample as the study's budget did not allow for placing appropriately human subject-trained researchers at each trail and non-trail site selected. The resulting use of volunteers to collect data across the state complicated the sample selection process, resulting in rigorous processes to vary the intercept location, day of the week, and time of the day for both trail and non-trail sites. Trained volunteers were assigned to intercept and ask trail or non-trail potential study subjects, using a greeting-introduction-question answering protocol, to participate in the study [45]. Trained volunteers distributed postcards directing selected participants to a website URL containing survey information or a phone number to call to receive a mail copy with self-addressed, stamped return envelope to interested subjects. Potential trail non-user subjects were offered an incentive to participate. --- Trail Selection The trail selection criteria utilized were distribution of trails among urban, suburban, and rural setting , trails with an equal mix of each desired, distribution of study trails in the Northern, Central, and Southern geographic regions of Indiana , and trails with a viable organization operating the trail agreeing to be a partner in collecting data at the trail using volunteers [53]. , land use , agency capacity factors, trail counters' access, and access to the list of neighboring properties. The volunteers were located at predefined trailheads and distributed the research information and the relevant online link to the survey. Data gathering was executed in the second week of April, June, and August and the first week of October, from 6 a.m. until 8 p.m. or dusk if it was before 8 p.m. The selection of participants in the study was carefully planned to best meet the standards of a probability sample as the study's budget did not allow for placing appropriately human subjecttrained researchers at each trail and non-trail site selected. The resulting use of volunteers to collect data across the state complicated the sample selection process, resulting in rigorous processes to vary the intercept location, day of the week, and time of the day for both trail and non-trail sites. Trained volunteers were assigned to intercept and ask trail or non-trail potential study subjects, using a greeting-introduction-question answering protocol, to participate in the study [45]. Trained volunteers distributed postcards directing selected participants to a website URL containing survey information or a phone number to call to receive a mail copy with self-addressed, stamped return envelope to interested subjects. Potential trail non-user subjects were offered an incentive to participate. --- Trail Selection The trail selection criteria utilized were distribution of trails among urban, suburban, and rural setting , trails with an equal mix of each desired, distribution of study trails in the Northern, Central, and Southern geographic regions of Indiana , and trails with a viable organization operating the trail agreeing to be a partner in collecting data at the trail using volunteers [53]. --- Trail User and Trail Non-User Survey Implementation As discussed earlier, the survey was implemented by stationing trained volunteers from the trail management organization at specified locations, specified weeks , and times and days during the study period so they could give out the relevant information about the study, such as online trail survey link. An incentive of a $5 gift card was considered for trail non-users to complete the survey. The volunteers gave the relevant information and cards to invite every participant at the survey locations. To intercept trail users at the start or end of trail use, popular trailheads were chosen. To select the control group, locations were selected from the same area of the trail that were frequently used by the community, such as grocery stores or libraries. --- Trail User and Trail Non-User Survey Implementation As discussed earlier, the survey was implemented by stationing trained volunteers from the trail management organization at specified locations, specified weeks , and times and days during the study period so they could give out the relevant information about the study, such as online trail survey link. An incentive of a $5 gift card was considered for trail non-users to complete the survey. The volunteers gave the relevant information and cards to invite every participant at the survey locations. To intercept trail users at the start or end of trail use, popular trailheads were chosen. To select the control group, locations were selected from the same area of the trail that were frequently used by the community, such as grocery stores or libraries. --- Statistical Methods Chi-square test was used to evaluate the index distributions of demographics, socioeconomic status, sleep, nutrition, and mood patterns between the two groups. Univariable association of all variables and trail use was evaluated through logistic regression analysis. The probability of using trail vs. non-using the trail was evaluated by multivariable logistic regression, controlled for sex, age, race, employment, income, marital status, education, smoking, nutrition, sleep, and mood. Adjusted odds ratios and the confidence intervals were reported. Self-rated wellness and health were continuous variables presented as mean and standard deviation . Univariable association of self-rated wellness and health with every variable was also evaluated through linear regression analysis. Multivariable linear regression adjusted for confounders, such as age, sex, race, marital status, employment, income, education, smoking, nutrition, sleep, and mood, were performed to determine the association between self-rated wellness and health and trail use. There were three reasons behind the selection of confounders, according to literature review. First, they are associated with self-rated wellness and health. Second, they are associated with the trail use. Third, they are located in the causal path from the trail use to wellness and health. In order to identify the useful subset of the predictors and reduce the multicollinearity problem and to resolve the overfitting problem, backward elimination process was used. Data analyses were conducted using SPSS program and p < 0.05 was considered significant. --- Results The final sample size included 1299 trail users and 228 non-users. Demographic characteristics and SES of trail users vs. trail non-users are demonstrated in Table 1. They were significantly different in terms of sex, age, race, SES, and marital status distribution. About 56% of trail users vs. 38% of non-users were males. People older than 45 years composed 65% of users and 45% of non-users. This explains the higher percentage of retired and married people among users vs. non-users, plus the lower percentage of students and smoking among users vs. non-users . Distribution of extreme sleep, mood, and diet patterns are compared between the two groups in Table 2. There were significant differences in distribution of all items between the two groups. Fifty percent or more of trail users never experienced 7/9 negative sleep symptoms including difficulty falling asleep, waking too early, falling asleep during the day, snoring, headache on wake up, excessive daily sleepiness, and excessive sleep movement , whereas 50% or more of trail non-users never experienced only 3/9 negative sleep symptoms . Similarly, more than 50% of the trail users never experienced 4/5 negative mood symptoms of lack of energy, sadness, anger, and physical pain, whereas the corresponding prevalence of never experiencing these symptoms was below 50% for the trail non-users . Again, more than half of the users never ate fast food, whereas only one-third of the non-users followed this dietary habit. The main physical activities in trail users were walking, running, and biking. These three categories were similar in most characteristics such as age, race, education, and income. Of walkers, runners, and bikers, 62, 63, and 60% were in the 36-65-year-old group, respectively. More than 90% in all three categories were White. At least 75% had college graduate within each category, and 10-14% had household income less than $38,000 per year. Their sex distribution was somehow different; 60, 41, and 36.5% were female, respectively. Walking, running, and biking were reported by 29, 19, and 52% in trail users, respectively, vs. 73, 22, and 21% in trail non-users, respectively. This means trails non-users were more active in terms of walking, similar to the trail users in terms of biking, and less active in terms of biking. Other than walking, running, and biking, strength training and gardening were the most frequent types of physical activity reported by 39 and 37% in trail users, respectively, vs. 35 and 32% in trail non-users, respectively. The frequency distribution of all other types of physical activities, such as swimming, aerobic dance, yoga, martial arts, racquet sport, golfing, and team sport, were similar between the two groups and were reported by 1-15% in both groups. Trail users were asked to indicate whether the amount of their physical activity level has increased, decreased, or stayed the same since they started to use the trail. More than two-thirds answered Increased . Then, those who answered that their physical activity has been increased or decreased were asked to indicate how much their physical activity has changed since they started to use the trail. Table 4 shows that about three-fourths of those who experienced increased physical activity had more than 25% higher amount of physical activity since using the trail. Moreover, trail users were compared with the trail non-users in terms of the amount of time spent on physical activity per week. Trail users were significantly more physically active outside of the trail vs. the trail non-users, 207 vs. 189 min/week, respectively . Physical activity of less than 2.5 h/week, 2.5-5 h/week, and more than 5 h/week were reported by 33, 34, and 33% of trail users, respectively, vs. 39, 34.5, and 26.5% of non-users, respectively. These findings altogether mean using the trails was associated with being more active. Factors that increased trail use were asked from the trail users through RTES questionnaire. Among them, outdoor activity factors were the most prominent; 95% and 97% of trail users reported access to scenery and access to nature/environment as the important factors to their use of trails, respectively . Table 6 shows the univariable association of every variable and the trail use in terms of OR and 95% CI. Almost all variables had significant univariable association with using the trail. However, when all were employed in multivariable logistic regression, only age, sex, sleep, and mood remained significant. Table 6. Backward logistic regression analysis showing univariable and significant multivariable associations of predictors of not using the trails. The dependent variable was using vs. non-using the trails. All other variables were considered as independent variables. Mean self-rated wellness and health out of 10 was 7.6 in trail users and 6.5 in non-users . Table 7 demonstrates the univariable association of every variable with the self-rated wellness and health. Nine variables had significant univariable association with self-rated wellness and health. When all variables were entered in multivariable linear regression, six of them remained significant, which included age, smoking, nutrition, sleep, mood, and using the trails. In other words, using the trail predicted a higher wellness and health score, whereas lower sleep quality and inferior nutrition were associated with lower wellness and health score . --- Predictors Finally, multivariable linear regression model was employed among only the trail users to evaluate the association of self-rated wellness and health index and the years of trail use. Interestingly, the model showed a significant positive association between them after controlling for other variables mentioned in Table 7; the longer the use of trails, the higher the self-rated wellness and health index. --- Discussion --- Sociodemographic Factors The current study compared the wellness and health status between the trail users and trail non-users. Among the walkers, educated, married, employed, middle-aged women revealed the highest frequency of walking. Among the runners, educated, married, employed, young/middle-aged men showed the highest frequency of running. Among the bikers, educated, married, employed, middle-aged men demonstrated the highest frequency of biking. Parallel outcomes have been observed by similar studies. For example, educated, employed, middle-aged women showed the highest frequency of walking in Missouri [38]. Educated, married, employed, middle-aged men showed the highest frequency of biking in Australia [54]. Age, sex, mood, and sleep quality were associated with using the trails in the current study. The higher the age, the higher the probability of using the trails. --- Behaviors Bad sleep and negative mood decreased the probability of using the trails. Given that the trail users were significantly older than the non-users, they were expected to have more frequent negative sleep symptoms, whereas the opposite was observed in our study; i.e., trail users reported markedly better sleep qualities. The interactive relationship among health/wellness, physical activities, and sleep have been shown or explained by several studies [9,10,14,15,55,56]. --- Wellness and Health The study showed that perceived wellness and health among the trail users were significantly higher than that of the trail non-users. The benefits of using the trails are not limited to increased physical activity, better sleep qualities, and more stable moods. Access to nature, scenery, and beauty of environment were important incentives for almost all trail users in our study. The significant human restorative effects of connection to nature has been demonstrated in several investigations [3,4,32,33,57]. The recreational benefits and the biodiversity of the environment have significant psychological advantages [58][59][60][61][62][63]. Biodiversity of environment refers to living organism variability of the environment. Regular use of the trail combines all the above-mentioned advantages: Physical activity, sleep, nature, and social activity. Then, increased physical activity, restoration, psychological well-being, and recreation are the consequences. Low physical activity has an established causal role in obesity and anxiety/depression. Then, our findings provided some justification for the possibility of constructing the health and wellness through trail activities and highlighted the importance of building additional trails throughout the country. --- Limits and Strengths This study contained some limitations. Its cross-sectional design did not lead to establish a causal role of type of physical activity in self-rated wellness and health. The sample size was different between the two groups. This was overcome by employing proper statistical analyses and using appropriate number of predictors to determine the differences between trail users and non-users. We also proposed a small financial incentive. However, knowledge of the financial incentive did not significantly increase the response rate. That is why we believe it did not bias the response of participants. The nutritional patterns of participants were controlled roughly by two questions about fruits/vegetables and fast food. Clearly, having other relevant information of diet could have improved the related model adjustment. Additionally, specific times were selected to recruit participants, whereas the actual volunteer participation could have been different. A strength of our study was the comparison of self-rated wellness and health of trail users with that of trail non-users, controlling for important confounders such as demographics, SES, mood, and lifestyle. Furthermore, efforts to diminish the recall bias in seasonal variations was undertaken by assessment of the trail users in four seasons. Follow-up investigations may improve the generalizability and the reliability of our outcomes. --- Conclusions Our study showed that perceived wellness and health among the trail users were significantly higher than that of the trail non-users, and that physical activity, sleep, and nature were the prominent features in promoting the use of the trail by participants. Specific health outcomes related to sleep, restoration, psychological well-being, and overall health are perceived to be greater in trail users. --- Author Contributions: Conceptualization, S.W.; data curation, A.S.; formal analysis, A.S.; funding acquisition, S.W.; investigation, S.W., A.S. and L.E.; methodology, A.S., W.R., L.E., and S.W.; resources, S.W., W.R. and L.E.; supervision, L.E. and S.W.; writing-original draft, A.S. and S.W.; writing-review & editing, W.R., L.E., and S.W. All authors have read and agreed to the published version of the manuscript. ---
Background: The current study sought to understand whether trail users reported better wellness and health status compared to the non-users, and to recognize the associated factors. Methods: Eight trails from different locations and settings within Indiana were selected to sample trail users for the study. Additionally, areas surrounding these eight trails were included in the study as sample locations for trail non-users. Trail users and non-users were intercepted and asked to participate in a survey including demographics, socioeconomic status, physical activity, mood, smoking, nutrition, and quality of sleep. Information was collected and compared between the trail users and the non-users. Association of self-rated health, age, sex, race, marital status, employment, income, education, smoking, nutrition, sleep, and mood with trail use was evaluated by multivariable linear regression model. Results: The final sample size included 1299 trail users and 228 non-users. Environmental factors (access to nature and scenery) were important incentives for 97% and 95% of trail users, respectively. Age, sex, mood, and sleep quality were significantly associated with using the trail. Mean (SD) self-rated wellness and health out of 10 was 7.6 (1.4) in trail users and 6.5 (1.9) in non-users (p < 0.0001). Importantly, trail users were significantly more physically active outside of the trail compared to the non-users (207 vs. 189 min/week respectively, p = 0.01) and had better sleep qualities and mood scores. Using the trails was significantly associated with higher self-rated wellness and health score. The longer the use of trails, the higher the self-rated wellness and health index (β = 0.016, p = 0.03). Conclusion: Compared to not using the trails, trail use was significantly associated with more physical activity, better sleep quality, and higher self-rated wellness and health.
The COVID-19 pandemic has caused long-lasting changes in many people's employment, social relationships, and mental and physical well-being. Caregivers of youth, children and seniors, representing 7.8 million Canadians , tend to suffer in all aspects of life owing to their unique role in society during the pandemic. [1][2][3] Caregivers are people who tend to someone else's needs for a period of time, and the context of this study refers to caregivers of children and youth. 4 They act as a social support system, assist with daily tasks and ensure basic needs are met. 4 Caregivers often face challenges and difficulties, including poor time management, worsening emotional and physical stress, lack of privacy, financial strain and sleep deprivation. [5][6][7][8][9] Caregivers can struggle to balance this role with other responsibilities in their lives, and these strains can affect the youth they care for emotionally and mentally. 10 Since the COVID-19 pandemic began, many challenges typically faced by caregivers have been exacerbated, leading to physical and mental deterioration of these caregivers. [10][11][12] Children may have been at home for online schooling, routines may have been disrupted owing to limited access to childcare and social support systems, and many children and youth with mental health and/or addiction concerns may have had diminished access to mental healthcare. 10 The increased stress associated with the pandemic also led to increased alcohol use in youth during the pandemic. 13,14 This has led to increased stress in youth and caregivers. Recent studies have shown that COVID-19 has negatively affected caregivers of children and youth and has been associated with substantial changes in caregiving responsibilities. [15][16][17][18][19][20] For example, when family caregivers were compared with noncaregivers in Pittsburgh, caregivers reported higher levels of anxiety and depression, increased food insecurity and financial worries, and lower social participation. 15 Furthermore, those with more COVID-19-related disruptions had worsening mental health and physical outcomes, owing to the increased difficulties added to their responsibilities, and thus had more negative perceptions of their responsibilities. 15 In Germany, the care situation of caregivers has worsened during the pandemic; 25.5% of caregivers that were unable to receive professional help reported that their responsibilities worsened during the pandemic, including overabundant demands, loss of social support and problems implementing COVID-19 measures. 16 Caregivers had diminished abilities to complete their responsibilities owing to pandemic-induced changes in their responsibilities, and this had a substantial negative impact on their physical and mental health. 16 In Japan, caregivers of children aged 3 to 14 years had an increase in mental distress compared with how they felt before the COVID-19 pandemic, with 24.1% reporting moderate mental distress and 29.3% reporting severe mental distress. 20 It was also found that such mental distress could stem from changes in daily routine and increases in child health issues. 20 Furthermore, caregivers' stress during the COVID-19 pandemic has been shown to be internalised by children, causing psychological and behavioural issues including yelling/screaming, name-calling and blaming others. [20][21][22] Thus, there is a need to continue to understand how the pandemic has affected the perception of caregiving responsibilities for children/ youth over time in other jurisdictions, including Canada. As the pandemic has progressed, it has affected caregiving in an everchanging way, as children and youth have returned to school and caregivers are going back to work and broader social contact. This current study aimed to investigate the sociodemographic and caregiver and child/youth mental health factors associated with perceived changes in caregiving responsibilities among caregivers of children and youth aged 0-25 years in Ontario, Canada, during the later stages of the COVID-19 pandemic. --- Method Study design and participants The current study used wave 3 data from the COVID-19 Mental Health & Addictions Service Impacts & Care Needs Study, which aimed to examine the effects of the COVID-19 pandemic on mental health and substance use among adults residing in Ontario, Canada. Data reported in this study were collected from January to March 2022. See the study protocol for details regarding participant inclusion/exclusion criteria, recruitment and sampling. 23 The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. All procedures involving human subjects/patients were approved by Sunnybrook Health Sciences Centre Research Ethics Board . Written informed consent was obtained from all participants. Participants were adults over the age of 18 living in Ontario, Canada. Data from 1381 participants who identified caregivers of children/youth aged 0-25 years were used for the purposes of this analysis. --- Measures Variables related to the impact of the COVID-19 pandemic on caregiving responsibilities in relation to participants' own and their child/youth's MHA concerns and sociodemographic characteristics were assessed through a series of measures. Complete details of the following measures can be found in the study protocol, including the sociodemographic characteristics of the overall study sample . 23 Caregiver strain during the pandemic was assessed using the Peabody Treatment Progress Battery 2010 and the Caregiver Strain Questionnaire-Short Form 7 questionnaire . 24 The total strain was further categorised into tertiles: low , medium and high . 24 Depression and anxiety were assessed using the DSM-5 Self-Rated Level 1 Cross-Cutting Symptom Assessment for Adults . 25 Alcohol use was assessed using the Alcohol, Smoking and Substance Involvement Screening Test version 3.0 . 26,27 Six items about changes in caregiving responsibilities were created for the purpose of this study. Participants were asked if they had received any of a list of MHA services or supports in the past 3-4 months. Analysis was performed with a dichotomised response of yes or no . Satisfaction with the availability of various types of social support since the COVID-19 pandemic was also assessed using a three-point Likert scale. 23 Analysis was performed with a dichotomised response of yes or no . Caregivers were also asked to estimate the degree to which their child/ youth's mental well-being had changed from before the pandemic using a three-point Likert scale. 23 Analysis was performed with a dichotomised response in at least one child/youth per caregiver of either a positive or no change as distinct from a negative change. Caregivers were asked whether or not at least one child/youth per caregiver had used at least one substance in an unhealthy/excessive manner since the pandemic. 23 Analysis was performed with a dichotomised response of yes or no . Access to MHA services since the pandemic commenced was also assessed through a dichotomised response of yes/no . Participants were asked how their caregiving responsibilities had affected their well-being since the pandemic commenced. 23 Analysis was performed with a dichotomised response of a positive or no impact as distinct from a negative impact. --- Statistical analysis Data analysis was conducted in SPSS version 28.0 with statistical significance set at P < 0.05 . Logistic regressions were performed with independent variables, namely sociodemographic characteristics, caregivers' and children/youth's MHA concerns, and the dependent variables, namely, change in caregiving responsibilities. There was no evidence of multicollinearity among the independent variables . --- Results --- General characteristics Demographics for the sample are presented in Table 1. The age range for this sample of caregivers was 18 to 91 years, with an average mean of 43.60 years . In this study, 649 identified as male, and 719 identified as female. The majority lived in Central Ontario, were Caucasian , had at least some post-secondary education and were married/common-law partners . These caregivers cared for a total of 2423 children/youth between the ages of 0 and 25 years with a mean of 1.8 children/youth per caregiver . The mean age of children/youth being cared for was 10.3 years . Of the children and youth being cared for, there were 1284 males, 1129 females and ten who were reported to be non-binary . --- Impact of COVID-19 pandemic on caregivers --- Caregiver strain Caregivers scored a mean of 2.22 ± 1.02 on objective strain and a mean of 2.46 ± 1.12 on subjective strain, and 4.68 ± 2.01 on total caregiver strain . Five hundred and forty-seven caregivers were in the low-strain group, 652 in the medium-strain group and 182 in the high-strain group . Since the pandemic was declared, almost half of the caregivers indicated that their mental health had worsened . It was found that 211 were at no risk, 880 were at low risk, 219 were at moderate risk and 71 were at high risk for alcohol misuse. Mental health and/or addictions services or support Over three-quarters of caregivers did not receive MHA services or support . By contrast, 1048 were satisfied with their level of social support since the pandemic was declared . --- Caregiving responsibilities Four hundred and forty-eight caregivers indicated that their caregiving responsibilities had had a negative impact on their wellbeing since the pandemic was declared . --- Impact of COVID-19 pandemic on children/youth A total of 981 caregivers reported negative mental wellbeing changes in at least one child/youth that they were caring for, and 243 indicated that at least one child/youth had signs of MHA issues since the pandemic began . In addition, 181 caregivers had at least one child/youth with unhealthy/excessive substance use, and 157 caregivers had at least one child/youth accessing MHA services or support . --- Predictors of perceived changes in caregiving responsibilities We used logistic regression to analyse the relationship between sociodemographic characteristics and caregivers' and children/ youth's MHA concerns and perceived changes in caregiving responsibilities . Of the sociodemographic characteristics, only ethnicity significantly predicted changes in caregiving responsibilities. --- Discussion The results of this study suggest that ethnicity, caregiver strain, negative changes in mental health for caregivers, negative changes in mental health for their children/youth, more children/youth cared by per caregiver and dissatisfaction with social supports were all independently associated with negative perceptions of changes in caregiving responsibilities. The COVID-19 pandemic resulted in new and increased responsibilities for caregivers of children and youth. Caregivers helped children and youth with online schooling by providing technology to access online platforms and necessities along with support in doing so, while simultaneously working from home. 5 The burden of juggling multiple responsibilities while being isolated from social support may be associated with negative perceptions of caregiving responsibilities. Previous studies of the relationships between caregiver strain, mental health, number of children/youth, satisfaction with social support and caregiving responsibilities have reported similar results. 28,29 A prior study considered adult caregivers caring for children under the age of 18 years in the USA during the pandemic and showed that there were significant links between parents' caregiving burden, mental health, and perceptions of children's stress, which were in turn significantly linked to child-parent closeness and conflict. 29 Complementary results in another study of caregivers of at least one child between the ages of 6 and 18 years during the pandemic in the USA showed that having a set routine could buffer negatively perceived changes as a result of the pandemic. 28 This shows that the caregivers were affected more by the idea of additional responsibilities than by the actual responsibility. Given these findings, further work is needed to explore how the severity of caregivers' and youth's MHA concerns, caregiver strain and social support affect perceived caregivers' responsibilities. Compared with caregivers of underrepresented groups, White caregivers were more likely to report perceived negative changes in caregiving responsibilities. There may be several explanations for this finding. First, it is possible that cultural experiences may affect cognitive processes. 30 Second, other variables in the model, such as caregiver strain, access to supports, social supports, etc., may have moderated the relationship between race and caregiving perceptions differently than expected. By contrast, a previous study, albeit focusing on caregivers caring for adult cancer patients during the pandemic, reported that caregivers of underrepresented groups were more likely to perceive higher negative perceptions in caregiving responsibilities. 31 Future research should explore the relationship between caregiving responsibilities and ethnicity in more depth. This might include exploring protective and precipitating factors that may be different between groups. In addition, whereas this study found that gender did not significantly predict perceived negative changes in caregiving responsibilities, a prior study found that caregivers who were female had more strain and burden. 31 Findings of this study suggest that many sociodemographic characteristics do not heavily influence perceived changes in caregiving responsibilities; these results are surprising in the context of the published work in the field. There could be different possible perceptions as to why there is a difference in findings, including differences in the sample population, survey service and percentage of females in the sample. The prior study looked at a sample population in the USA using Amazon Mechanical Turk with 42% females, 31 whereas the present study was conducted in Canada through AskingCanadians with 52% females. Thus, future exploration is warranted to further understand the relationships between gender and caregiving roles. Caregivers' perception of changes in mental well-being in their children/youth significantly predicted perceived negative changes in caregiving responsibilities. Previous studies of the relationship between changes in mental health and caregiving responsibilities have shown similar results, despite investigating various populations in different regions. 29,32 Caregiver burden, perceived child stress and conflict in child-parent relationships have all been found to be positively associated with one another in the USA. 29 A prior study found that as a result of the pandemic, primary school children in Turkey developed sleeping problems, anger issues, fidgeting, restlessness, appetite problems, sadness, etc., as perceived by their caregivers. 32 There was a significant association between these symptoms and perceived stress in caregivers. Children also seem to internalise the stress and burden faced by their caregivers, leading to the development of MHA signs. 19 --- Strengths and limitations Participants in this study were a representative sample of residents in Ontario, improving the generalisability of the findings to the population. However, the study was conducted through an online survey, limiting the sample to those with internet access. Furthermore, the responses regarding children and youth's MHA concerns and access to MHA services and/or support were based on the caregivers' perceptions, which might not have been accurate depictions; it is possible that children and youth may hide their symptoms or service involvement from their caregivers. Thus, it is also important to evaluate these factors with children and youth themselves directly wherever possible. In addition, caregivers were asked to compare their current caregiving responsibilities with those before the pandemic, which was over 2 years prior; this may have led to recall bias, affecting the validity of the data. It is also important to acknowledge that not all the changes in the lives of individual caregivers and their youths were solely the result of the pandemic; indeed, there may be many life events and intercurrent medical and social issues that affect the lives of caregivers, the measurement and the impact of which were beyond the scope of this study. Moreover, this study included an evaluation of a heterogeneous group of youth who were receiving care from caregivers. It is possible that certain subgroups may have different levels of strain; it was beyond the scope of the current study to evaluate the differences between these different subgroups, but this may be a valuable issue to explore in future research. Last, the crosssectional nature of this study limits the conclusions to relationships observed at one particular time point in the COVID-19 pandemic. Future studies could explore perceived negative changes in caregiving responsibilities as a result of the COVID-19 pandemic longitudinally to better determine how these relationships evolved over time . --- Future implications This study examined the factors that contributed to perceived negative changes in caregiving responsibilities among adult caregivers of children and youth in Ontario, Canada, during the COVID-19 pandemic. The findings show that certain factors were predictors of negatively perceived changes in caregiving responsibilities. Other factors including screening for risk of depression and anxiety, access to MHA services/supports and signs of MHA concerns in children/youth were not associated with the outcome. Ethnicity was the only sociodemographic factor that significantly predicted the outcome. These findings could lead to a greater understanding of the impact the pandemic has had on caregiving responsibilities and how this has affected different populations across Ontario. They may also help to inform healthcare providers who seek to support caregivers of children and youth by developing their understanding of the nature of the challenges experienced during the pandemic. --- Data availability Requests for access to deidentified data should be directed to the corresponding author . Data may be shared upon reasonable request and pending ethics approval. --- --- Declaration of interest None.
The COVID-19 pandemic has created long-lasting changes in caregiving responsibilities, including but not limited to increased demands, loss of support, worsening mental and physical health, and increased financial worries. There is currently limited evidence regarding factors associated with perceived changes in caregiving responsibilities.This observational study aimed to investigate factors (sociodemographic characteristics of caregivers and mental health and/ or addiction concerns of the caregiver and their youth) that predict perceived negative changes in caregiving responsibilities among adult caregivers (aged 18+ years) of children and youth (aged 0-25 years) in Ontario, Canada, during the COVID-19 pandemic.Data were collected from 1381 caregivers of children and youth between January and March of 2022 through a representative cross-sectional survey completed online. Logistic regression was conducted to determine predictors contributing to perceived negative changes in caregiving responsibilities.Among the sociodemographic characteristics, only ethnicity significantly predicted outcome. Higher caregiver strain (odds ratio [OR] = 10.567, 95% CI = 6.614-16.882, P < 0.001), worsened personal mental health (OR = 1.945, 95% CI = 1.474-2.567, P < 0.001), a greater number of children/youth cared for per caregiver (OR = 1.368, 95% CI = 1.180-1.587, P < 0.001), dissatisfaction with the availability of social supports (OR = 1.768, 95% CI = 1.297-2.409, P < 0.001) and negative changes in mental wellbeing in at least one child/youth (OR = 2.277, 95% CI = 1.660-3.123, P < 0.001) predicted negative changes in caregiving responsibilities.These results support further exploration of the implications of negative perceptions of caregiving responsibilities and what processes might be implemented to improve these perceptions and the outcomes.
potential associated with social inequity in examination rooms. 3,4 Social needs screening, referral, and coordination among social service organizations have demonstrated potential to fill some social care gaps in primary care settings. 5,6,7,8,9,10,11 However, the number of patients helped by these interventions is still somewhat limited. For example, one study found that, of 848 patients screened who had food insecurity and wished to be contacted, 98 had their referrals ultimately resolved by a local food bank. 11 Other work has further exposed the need for improved communications with patients 12 and the severe limitations of high throughput workflows. 8,13 An entire industry of startup companies and entrepreneurs is developing technologies around the promise of integrated care for patients with unmet social needs, 14 but health technology for this purpose needs to further reinforce solidarity and shared well-being. JJ seems very familiar to health workers; the social, psychological, and disease challenges faced by the most vulnerable patients cared for in clinics, hospitals, and emergency rooms are daunting. Beneath the snapshot of his clinical encounters is a rich personal history involving relationships, events, places, passions, and the vicissitudes of life's fortunes and misfortunes. Present, but possibly not accounted for, are JJ's personal triumphs and tragedies. JJ's case helped me to reflect on my 2 decades of work with colleagues conducting qualitative interviews and listening closely to the concerns of persons who have various combinations of serious mental and physical health challenges. 14,15,16,17,18,19,20,21,22 I've talked with baseball fans about their diabetes control and the staggering weight gain they had from their antipsychotic medications. 20,21 Men who love yoga and meditation shared with us their fears and personal struggles after having a stroke. 15,16 Medications that caused weight gain or fatigue meant they could not lift what they needed to or stay awake and alert enough to make it through an 8-hour night security shift in the warehouse. 16 My own and others' research has found that patients' not taking medicine was occasionally due to clinical care teams' affronts to their personhood or patients' suspicion that prescribers' motives were financial rather than beneficent. 15,22,23,24,25 How Stillness Moves Us Toward Solidarity The stillness of a medical encounter in some ways is not still at all; time is short in busy clinics. Private talk about deeply personal needs, however briefly, can move our encounters with patients-especially those experiencing homelessness-beyond the often morally hazardous conditions on the outside of the examination room toward solidarity. Stillness can move us toward trust and the health benefits of trusted relationships. Even steep barriers to trust in clinical encounters can be surmounted with the simplest of "common ground" approaches-simply finding out what we share with one another. 26 When our experiences and those of the people we serve do not align, we can maintain solidarity with their suffering and offer our love. 27 I remember an interview with a woman experiencing homelessness who told me about how she was raped the first night she had to sleep in a bus shelter. This woman's story came as a shock to me; I had simply asked her a question about why it was sometimes difficult to take her medicine for her bipolar disorder. Sometimes it just wasn't a high priority, she explained. Days before our conversation, she had received 3 new sets of clothes from a church group, but the clothes, the bag they were in, and her medicine were stolen at the shelter. She explained that she wanted to take her medicine, but she didn't always have it with her. We felt solidarity in that particular moment because both of us felt ashamed, powerless, and a bit broken. Both of us were glad to have someone to talk to within the gray, airconditioned walls of the clinical research unit, but nonetheless we experienced the fear and the trauma of those events-I, vicariously-when just talking about them. It's through this lens that I write with concern for JJ and what will happen to him and others in our tightly choreographed systems of social care. The social needs screening questions used at MetroHealth ask: 1. Have you worried your food would run out before you had money to buy more? 2. Were you unable to pay the rent on time? 3. Have you been humiliated or emotionally abused by your partner? Qualitative inquiry has found that patients are generally appreciative of the opportunity to fill in the care team and possibly receive assistance with some of their needs. 28 Nonetheless, some vulnerabilities are so overwhelming that our patients struggle to contain their tears before they finish answering even one of the questions. The tables and figures on the social determinants of health can seem like a disservice to the truth of the challenges faced by our patients. How can we confront these challenges while preserving the dignity of patients like JJ? At times I'm frustrated with the safe, climatecontrolled halls of the health care system, having commuted from the suburbs and a house with an overflowing pantry. As others have pointedly asked 29,30 : Who is this safe setting really for? I hope JJ feels safe in the clinic. I want him to. If he were my patient, I would consider whether I'd asked him lately how he feels about this place and his experiences here. JJ's case and every encounter with a vulnerable patient can be viewed as an opportune reminder for all members of clinical teams to anchor their efforts to meet instrumental health and social needs in a foundation of interpersonal, narrative humility and an unwavering respect for dignity. --- Commentary 2 by Kurt C. Stange, MD, PhD One of the most gratifying clinical teaching encounters is when a resident raises the exasperated question, "Why does this patient keep coming back to see me? I'm not doing anything for him!" So many clinical teaching episodes, like the clinical encounters they mirror, are transactional-linking symptoms and signs to diagnoses and using those diagnoses to launch evidence-based treatments. Those evidence-based treatments are based on the average effects of treatments in clinical trials in which selection and randomization make individual differences and social context inapparent to allow us to focus on a single factor. 31,32 But, like JJ's schizophrenia, which is exacerbated by medication nonadherence for a complex mix of reasons, most health problems aren't caused by a single factor. The causes of suffering, disease, and illness-and even explanations of opportunities for healing-are multifactorial and multilevel, from the molecular to the societal. 33,34 Our efforts to put people's problems in neat little boxes give us a sense of control that often is out of touch with the complex contexts of people's lives and the possibilities for care that extend beyond delivering "commodities" of narrow diagnoses and treatments to the possibility of holistic healing. 35 We should be aware of what our patients do and don't want from us. Patients do not come to serve as data for quality and performance metrics that sometimes provide useful guidance but often serve to financially incentivize us and to wrest control of our motivations to be personal physicians and healers. 36,37 Moreover, patients do not come to gratify our egos as healers. For many patient conditions, we do not provide a cure; many patients coming to hospitals and to primary care, especially those age 45 and older, have multiple chronic illnesses of which we are witnesses and that we help palliate. 34,38 In talking about healing, patients say that they would like a cure, if possible, but when that is not possible, they want someone to stick with them on the journey. 39 They want someone to help them to transcend their suffering. 40 Fostering Healing In analyses of in-depth interviews of physicians identified as excellent healers on the basis of their scholarship, reputation, and awards and of their patients thought to have experienced healing, 41 my colleagues and I discovered that healing relationships require certain competencies in the physician: self-confidence, emotional self-management, mindfulness, and knowledge. Healing relationships also embody practices of valuing, being present, sharing power, and abiding. Valuing means actively appreciating patients in a nonjudgmental manner, regardless of their level of functioning, social situation, ethnicity, or life circumstances; such appreciation adds value to care over time, even when the care is ostensibly "futile." Being present means paying caring attention, witnessing, and empathizing with patients' suffering and joy. Sharing power means respecting patients as experts about themselves and leveraging trust and respect to encourage changes that support patients' health. Abiding means sticking with patients, providing continuity of caring over time, accompanying patients during crises, and ensuring that patients know we will not give up on them even if we are not able to provide a cure. Enacting these competencies and healing practices leads to relational outcomes of hope, trust, and a sense of being known. 41 Healing practices impart a sense of stillness and solidarity within and between practitioners and patients. 42,43 Martin Buber described these kinds of connections as "I-Thou" relationships, 44 which are characterized by dialogue and mutuality and fundamental to healing; such relationships contrast to "I-It" relationships, which aptly apply to commercialized, commoditized, impersonal features of US health care. 45 With my colleagues, I have conducted further analyses of the interviews used to identify the competencies and healing practices, which show that patients' healing journey is full of stops and starts. 46 In the middle, it often looks like a failure. But through personal and relational persistence, patients who have a sense of safety and trust can move from being wounded and suffering to developing diverse healing relationships based on kindness and unconditional love. This experience leads to reframing of suffering, taking appropriate responsibility for healing, and positivity that sometimes help the person to transcend their suffering and circumstances and find meaning, purpose, and often generativity, or the emergence of interconnections between relationships and resources that foster hope and "a sense of wholeness and integrity that constitutes healing." 46 Higher levels of care that involve integrating and prioritizing care, abiding, and assisting in transcendence of suffering 47 are neither recognized nor supported by the current organization of health care, which measures and supports basic care of acute and chronic disease, preventive service delivery, and mental health care. Our fragmented, depersonalized, greed-driven system actively works against providing these higher levels of care. 35,48 The mismatch between what clinicians know we can do to help people in a relationship over time and how we are organized, rewarded, and punished in the current reductionist, commodified health care system is a major source of moral distress and burnout for clinicians and of loneliness, fear, and despair for vulnerable patients. 49,50,51,52,53 My colleagues and I have recently developed a patient-report measure based on careful analysis of what patients and clinicians say is important in health care. 54 Such a measure can be used to refocus the attention of clinicians, patients, and the health care system on what matters. Understanding and Using Physicians' Power Howard Brody identifies 3 kinds of physician power: charismatic , social , and Aesculapian . He asks us to consider whether our power is owned, aimed, or shared. 55 As physicians, we can engage in personal reflective practices 42,43 and share our power with patients by abiding as witnesses 45,46,56,57 and being available for teachable moments when healing is possible. 58,59,60 We can own our larger professional responsibility to address societal inequities that cause illness and suffering. 61 We can band together in professionalism 62,63,64 rather than in narrow self-interest to work toward a system that invests in relationships, measures what matters, 37,54 and supports healing and health. 65,66 --- Adam T. Perzynski The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed in this article are those of the author and do not necessarily reflect the views and policies of the AMA.
Patients experiencing homelessness and mental illness face conditions and circumstances that deserve focused ethical and clinical attention. The first commentary on the case applies insights from qualitative research about social determinants of health to these patients' care and dignity. The second commentary describes 3 kinds of power wielded by physicians-charismatic, social, and Aesculapian-each of which is considered in terms of whether and to what extent physicians' power should be owned, aimed, or shared. Case JJ is a 27-year-old man with schizophrenia, who is brought to the clinic by staff members from a local shelter. JJ does not adhere well to his antipsychotic medication, has experienced several inpatient psychiatric civil commitments and other encounters with numerous clinicians in the region's health care system, and does not have reliable access to shelter, food, water, or hygiene. You, JJ's caregiver in the clinic right now, empathize with him, staff from the shelter, and others trying to help JJ avoid poor health outcomes for which he is at such high risk. You refilled JJ's medication and reviewed his laboratory values, but you know there is little you can do for JJ that can counter the myriad and well-known social determinants undermining the effectiveness of even the most skilled intervention any clinician could offer JJ during a clinical encounter. You wonder how to make the most of this moment you have with JJ on his life journey.The American Medical Association designates this journal-based CME activity for a maximum of 1 AMA PRA Category 1 Credit™ available through the AMA Ed Hub TM . Physicians should claim only the credit commensurate with the extent of their participation in the activity. Recent years have seen dramatically increasing levels of health care system interest and investment in addressing social factors in primary care. 1,2 Some of this interest is driven by growing recognition of the immense financial expense and squandered human
Introduction SARS-CoV-2 has impacted every corner of the world. In Kenya, the first case of SARS-CoV-2 infection was reported on 13 March 2020 [1]. One month later, Kenya closed its schools, restricted travel in and out of its capital city, Nairobi [1], and implemented a nationwide dusk-to-dawn curfew [2]. Since then, Kenya has seen epidemic peaks in July 2020, November 2020, and March 2021. By August 2021, Kenya was reporting approximately 3700 confirmed cases per 1 million people and 72 deaths due to COVID-19 per 1 million people [3]. In a study of nearly 1600 pregnant and postpartum women in Kenya, Otieno et al. found that within a nine-month period, COVID-19-like illness developed in up to 33% of participants [4]. Several studies point to particular populations at greater risk of adverse outcomes, including pregnant women. Pregnant women are at high risk of severe complications from SARS-CoV-2 infection, with increased need for hospitalization, intensive care, or ventilatory support compared to non-pregnant populations [5][6][7][8]. Pregnancy outcomes have also been impacted by SARS-CoV-2 infection. Risk of preterm birth, stillbirth, and other pregnancy complications are heightened by COVID-19, as well as preeclampsia, which can result in serious illness or death for the mother and baby [9,10]. The ways in which people conceptualize COVID-19 disease vary on an individual level. Factors such as socioeconomic status, social networks, individual experiences, and knowledge, attitudes, or beliefs about COVID-19 might shape a person's view of the pandemic in terms of their risk-perception, optimism, trust in public health authorities, and economic stability, among other variables [11][12][13]. It is well established in behavioral health literature that psychological, social, and environmental factors affect behavioral intentions and behaviors themselves [14,15]. Many theories have been derived to explain the ways in which individuals determine how to behave, or their behavior change pathways, such as Social Cognitive Theory, the Theory of Planned Behavior, and the Health Belief Model. Across these theoretical perspectives are common constructs which are considered to influence behaviors across health topics. Several constructs are particularly relevant across all health behaviors. For example, risk perception, or one's beliefs about potential harm, has been used across several behavioral theories as a key influence of individual behavior [16]. In the Health Belief Model, risk perception is divided into two constructs: perceived susceptibility and perceived severity [17]. According to this model, the combination of perceived susceptibility and severity, among other factors, contribute to a person's likelihood of engaging in a specified health behavior through the beliefs that there is at least some possibility of contracting an illness and that the illness can cause undesirable clinical or social consequences [17]. Another common construct for predicting health behaviors is self-efficacy, or "perceived behavioral control", as referenced by the Theory of Planned Behavior. According to this theory, self-efficacy, or a person's perception of their ability to perform a specified behavior, can influence a person's health behaviors by minimizing their motivation to engage in that behavior out of fear that their chances of success are minimal [18]. Factors which might influence one's self-efficacy include perceptions of physical ability, access to information, resources, or time, and economic capacity, among others. Moreover, the Theory of Planned Behavior posits that attitudes, or the degree to which a person favors a behavior of interest, can be highly predictive of behavioral intentions when also accounting for social norms and behavioral control [18]. More specifically, it is thought that attitudes are a function of one's beliefs toward a target behavior, such that the degree to which a person believes that a behavior of interest will lead to a particular outcome will influence whether they have a favorable or unfavorable attitude toward that behavior [19]. For example, the belief that seeking treatment for a particular illness will lead to social ostracization is a common example of unfavorable attitudes toward health-seeking and a predictive deterrent of preventive health behaviors. In Kenya, perceived stigma has consistently been reported as a barrier to health-seeking and prevention for a variety of health issues [20][21][22]. In addition to influential constructs related to behavior, literature on health behaviors and decision-making among PLW point to several groups that influence the decisionmaking process of PLW. One such group prominent in the Kenyan literature are male spouses and partners, whose interdependence, communication, and participation with their pregnant or lactating partners have been found to affect behaviors such as diagnosis disclosure and adherence to medication [23,24]. Health providers are also a key population who have consistently been reported as one of the most trusted sources of health information that can subsequently help inform health behavior [25][26][27][28][29]. Moreover, pregnant women may be up to 12 times more likely to receive a vaccine when recommended by their health provider [30]. Although much of this research has been conducted in the context of HIV, influential parties are likely of similar importance in the context of COVID-19. Therefore, the aim of this study is to understand how three key audiences-pregnant and lactating women , male community members, and health workers-in Kenya conceptualize COVID-19 to better understand determinants of COVID-19 related behaviors. We aim to use the results of this study to generate communication strategies and inform public health programs and policies in Kenya to encourage recommended COVID-19 behaviors. --- Materials and Methods This study used qualitative methods to conduct 84 in-depth interviews with three sets of audiences: 31 PLW, 33 community members, including male family members and neighbors of PLW and community gatekeepers, and 20 health providers, including nurses, midwives, community health volunteers, and other service providers. This research was conducted in a total of 6 communities in both urban and rural settings across three counties: Garissa, Kakamega, and Nairobi. We determined approximate sample sizes based on study aims and qualitative theory. This study used a grounded theory approach, in which sample size is determined based on data saturation rather than quantity of data [31][32][33]. Grounded theory saturation was reached when no new themes were emerging from the data. See Table 1 for participant information. In-country study staff leveraged existing infrastructure to identify and recruit participants. Participants were identified in several ways, depending on audience type. PLW and community gatekeepers were identified in collaboration with community health workers, county health officials, and government health facility staff; male community members were identified through snowballing by recruiting family members and neighbors of PLW already recruited into the study, as well as through referral by health facility staff; and health workers were identified by local and county health managers. Data collectors recruited participants at health facilities across the three counties using a screening form to determine whether or not the potential participant met the criteria of being 18 years or older, identifying as one of the target audiences , and being in their second or third trimester of pregnancy . Data collectors obtained oral consent from all participants. Semi-structured interview guides were designed in collaboration between study staff at Johns Hopkins University and Jhpiego and were pre-tested in the field. Interview questions varied by participant type; however, all instruments assessed respondents' knowledge, attitudes, behaviors, and experiences related to COVID-19 . Data collectors with Jhpiego Kenya were trained during a three-day workshop on project objectives, qualitative research techniques, human subjects research ethics, and COVID-19 precautions. Data were collected from August to September 2021. Due to safety considerations resulting from the COVID-19 pandemic, a combination of in-person and virtual interviews were conducted. Interviews were conducted in English or Swahili, depending on participant preference, and were audio recorded, transcribed, and translated to English by study staff fluent in English and Swahili. All data were stored on encrypted servers. Data were analyzed by a team of seven using Atlas.ti software. Applying a grounded theory approach, the team generated, refined, and agreed upon a code list through three rounds of open coding. The team then coded approximately 25% of the transcripts, met to discuss emerging themes, then coded the remaining 75% of transcripts. Following coding, two researchers conducted interrater reliability with ~10% of the transcripts, returning reliability of >90%. All researchers then met to discuss themes and sub-themes. This study was approved by the Institutional Review Board with Johns Hopkins Bloomberg School of Public Health and the Scientific and Ethics Review unit with Kenya Medical Research Institute. --- Results Results are organized into five key themes: myths, risk perception, economic implications, stigma, and self-efficacy. We organized these themes based on behavioral constructs that emerged through the data thought to influence decision-making for COVID-19 related behaviors. --- Myths PLW were generally aware of the existence of COVID-19 including symptoms and prevention measures. However, community members and health workers expressed that despite health education efforts in their communities, awareness remains inadequate. Across all participant groups, myths relating to the existence, spread, and severity of COVID-19 were pervasive; the most commonly reported myth being that COVID-19 does not exist. A family member in an urban area of Kakamega alludes to this: "[COVID-19] hasn't affected people because it's not there". A pregnant woman in urban Kakamega expanded on how this disbelief in COVID-19 shapes her community's views on mortality: "People have not accepted if there is COVID-19, they just say, 'if it is your time to die, you will die.' That is the mentality of many people . . . They just say it is normal death. if you say someone has suffered from COVID, they don't believe you". For many, this belief stemmed from limited spread in their community, as this family member in urban Kakamega demonstrates: "My belief is that I can't get it . . . Why I can't get it is that ever since last year they have said that [COVID-19] is there . . . I have never seen any of my neighbors or someone from a neighboring county, I haven't seen them complaining that there's anyone who has it". One health worker from Nairobi articulated the pervasiveness of this myth in their community: "From the view of the people, we have had very few people succumbing to COVID, so the community here is a bit skeptical about COVID. When you talk to them, the first thing that will come up is, 'We have not seen someone suffering from COVID, so we cannot believe in something that we have not seen.'" Others, however, not only believed in the non-existence of COVID-19, but that it is "another way the government is using us to get money", as a family member in a rural community in Kakamega put it. Another myth was the belief that COVID-19 is only transmissible to certain populations, primarily those that are urban, wealthy, Western, or Christian. This myth was particularly prominent in Kakamega County. As this pregnant woman in a rural area describes: "[COVID-19] looked like it was a disease of the urban. My husband used to tell me, 'you and your children are going to infect us with COVID,' and I would tell him, 'COVID is not for the poor because we take so many rough things. COVID is for the people who are taking soft things, not me.' But finally, [COVID] came in so fast. That is when I knew it was for all". One health worker in urban Kakamega affirmed the prominence of this myth and went on to describe their efforts to combat it: "Here, right now, we are trying to educate society on COVID and its effects, of which most people here have not yet embraced. They say it is an ailment of the Chinese". Other myths that were reported to a lesser extent included the perception that COVID-19 is not a cause for concern and can be treated with homeopathic remedies. For example, this pregnant woman from Garissa says: "If I was told I have COVID-19, I would basically take the herbal things that we usually have at home and steam myself and try to see if I am going to get well from that". A health worker in Nairobi described in detail the natural remedies they have been taught to treat COVID-19 and how those remedies cured their child: "There is a lot of natural care. We have onions, ginger, garlic, and so forth. They really help so much. When somebody does it well, they don't reach the ICU . . . I also massage the whole body with the rub. The whole body you stretch from the spine, the neck, the thighs. [The doctors] told us that COVID holds the thighs so tight, that is why it puts you down. So, we massage the legs . . . When my baby tested positive with symptoms, [the doctor] told us to put the onions on the armpit, on the socks and even on the stomach. We used everything. I put tomatoes all over and within two days we could not believe [the results]". --- Risk Perception --- Perceived Susceptibility The perception that everyone is at risk of contracting COVID-19 because "it does not discriminate" was a common finding across PLW and community members. As this family member in rural Kakamega poignantly states: "[I am at risk] because I am a human being and I breathe and I have a future . . . They say that it is an airborne disease and I breathe that same air. You can be any person, you will still get infected". Pregnant women and lactating mothers spoke to their unique susceptibility to the disease for various reasons. For one, pregnant women and lactating mothers perceived a risk of transmission from mother to fetus or child. As these lactating mothers put it: "If [COVID-19] infects a breastfeeding mother like me, the baby will definitely be affected" and "If I get Corona, my child will also get it . . . And also the expectant mother. If she gets [Corona], even the baby inside will get Corona" . Additionally, pregnant women and lactating mothers both perceived themselves and were perceived by others as having greater susceptibility to COVID-19. This pregnant woman from rural Kakamega describes the risks of socializing for PLW: "[Pregnant women and breastfeeding mothers] are in danger because when they congregate somewhere and they do not observe social distancing, they can be infected". A family member from urban Kakamega reinforced this notion: "The reason as to why I say that [pregnant women] are at a bigger risk of contracting Corona is because when they walk around and meet other people, you know women like talking and sitting together, laughing, and touching each other". Health workers perceived a high degree of susceptibility due to the nature of their work. Although most health workers "try to do self-care" by wearing proper PPE while working, "there are so many things that can make us get it" . Despite these findings, there remained several participants who perceived little risk of contracting COVID-19. For example, this family member from Nairobi shares: "I am not thinking that I will get Corona. First of all, the protocols and guidelines that have been put in place by the health workers is that each one of us should take personal responsibility. You should always wear a mask, keep on washing your hands. So if you take care of yourself, your chances of getting Corona are minimal". --- Perceived Severity Perceptions of severity were fairly consistent across target audiences. To nearly all who believed in COVID-19, it was seen as a "deadly" disease. As one lactating mother from urban Kakamega put it: "COVID is deadly. You can suffer for 3 days or even just a day and then you succumb to it . . . It causes death and it leaves other people behind who are so helpless". Health workers echoed this notion, as one from Garissa shared: "[COVID-19] can kill you instantly if you joke with it. So, I think it is very severe. It is a killer disease". For this gatekeeper in Nairobi, the lethality of COVID-19 is readily apparent: "It is now said that COVID-19 has taken center stage because we no longer have a hearse which is not booked". Some participants elaborated on the severity of the disease, noting how severity can be exacerbated by co-occurring conditions. For instance, this family member from Nairobi shared this belief: "People say that if you have other underlying illnesses, it will kill you". A neighbor from rural Kakamega echoed this fear: "You know, we have different diseases. You may get a heart attack or cancer, so if you are infected and you have an underlying condition, you may not make it. That is the fear we have at the moment". --- Economic Implications Aside from the health implications of the COVID-19 pandemic, participants described several non-health related challenges that have emerged. Economic downturn and financial hardship resulting from the pandemic was a recurring theme across all participants. As one family member from Nairobi summarized: "Before Corona came, business was good, life was good, even traveling was good. Everything was OK. But when it came, it destroyed everything. The economy has crumbled, people have lost their lives, they have left their families, and you cannot interact with your family well". When asked how COVID-19 has affected their community, participants most commonly reflected on employment. This lactating mother from urban Kakamega describes her personal experience with economic hardship resulting from the pandemic: "The impact of COVID-19 on my daily responsibilities as a young woman, I have to close down my business . . . If I am a working-class lady, I will have to at least miss going to work. I will be given compulsory leave and when you come back you find that you have already been replaced at the job. You find you are back to stage one . . . So with COVID, you will not even be able to protect your job, to protect your daily income, to protect the people you love, and also your daily life. It will all be affected". Similar stories of job loss and business closures were widespread across the data. Although many participants attributed these challenges to self-isolation from a positive test result, others pointed to certain aspects of the community-level pandemic response. In particular, several participants suggested the nation-wide curfew, negatively impacting local businesses. This lactating mother from rural Kakamega describes her experience: "COVID has negatively impacted our economy. Recently, there has been a curfew and many people survive from hand-to-mouth. They need to go out to work and you realize that people are told to stay at home. There are those people who work at night, but they are told that the curfew begins at 7:00 P.M. There are those who sell vegetables who come to the market at 6:00 P.M. and they expect to be selling up until 8:00 P.M., yet curfew begins at 7:00 P.M. That has really impacted our economy". In addition, pregnant women, lactating mothers, and health providers reported experiencing or observing others struggle with medical care costs. As this lactating mother from Nairobi put it: "Yes, [COVID-19] is a problem because if you contract it, there are expenses. The expenses of taking care of a COVID-positive person is so expensive". A health worker in Garissa elaborated on this dilemma, explaining that: "People are spending a lot of money. Some have traveled to hospitals in Nairobi, some are spending many days in the wards in our referral center, and some are dying. So, it is impacting the community in many ways". --- Stigma Participants described a societal inclination to avoid and, in some cases, completely ostracize individuals who contract COVID-19 to avoid transmission. Societal stigma against COVID-positive people was a prominent theme that appeared across all target audiences and geographies. As this family member from Nairobi summarized: "[A COVID-positive person] is viewed as someone who is no more. You are isolated. There is no one who will come near you". This lactating mother from Garissa shared the extent to which her community fears even the objects touched by a COVID-positive person: "[The community] cannot accept him. Even now as we speak, they are scared of the cup he used to drink from . . . just like the disease itself". In many cases, this stigma permeated families to the point that, even following recovery, spouses and other family members were afraid to re-integrate them into the home. As this health worker from rural Kakamega described: "[Families] normally abandon [relatives with COVID-19]. They won't want to associate with them. There was one case when the patient was discharged, the relatives told us they don't want that client to go back home because she will infect them. So, we had to arrange for a facility-based care at another facility until the patient recovered". For several participants, the tendency to stigmatize COVID patients was compared to former stigmatization of HIV-positive people in their communities. As this lactating mother from Garissa put it: "In the past, there was stigmatization of HIV, but nowadays, it is Corona. If you hear that someone in your family has died or recovered from Corona, people will not even come to greet you". One gatekeeper from Nairobi expanded on this, explaining how comparing COVID-19 to HIV can have a stigmatizing effect on the entire family: "Initially there were a lot of myths . . . Just as somebody with HIV was taken as a burden by the community, so is the person with COVID-19, because the moment COVID-19 is prone in a family or household, that would be the start of the end to the family. In terms of the care and support that these people require financially, physically, emotionally, spiritually, it is not easy. It would be seen as a draining of resources to this particular family . . . So people are like, 'Can we leave them for dead?' and so on". Stigmatization of COVID-positive people as a form of prevention was noted as having harmful, lasting implications for those stigmatized. Participants expressed that the marked manners in which their communities are responding to COVID patients and survivors is causing degradation of their mental health to such an extent that, "when we isolate [COVID-positive people], we kill them" . This family member from urban Kakamega shared how he imagines stigma from COVID-19 evolves: "One feels that there is no hope to live. Their self-esteem goes low. Some will feel like they don't have the immune system to fight Corona, so he pulls himself down and maybe it was not time for him to die, but depending on how that person's mentality is, it may kill him because he will feel he does not have hope and he panics". --- Self-Efficacy In terms of one's perceived control over protecting oneself and others from contracting SARS-CoV-2, participants had differing perspectives. In some cases, PLW and male community members described feelings of powerlessness and inevitability which stemmed from religious beliefs. As one male family member succinctly put it: "[COVID-19] is something that only God can prevent . . . COVID-19 here in Garissa is very high, so we just pray to God for help". A lactating mother in Nairobi agreed, stating: "[COVID-19] is a problem because when it's in the community, it's only God who helps. Others will get well while others will die". In other cases, participants reported structural barriers which prevented them from adhering to risk-reducing activities. For some, the costs of necessary products like soap and sanitizer were unaffordable: "You will find that somebody can easily lose his or her life just because of Ksh.10" . For others, the task of maintaining social distancing was unrealistic given their community's living conditions. As one community member in Nairobi stated: "In these one-roomed houses with children and parents, it is a very big challenge. You maybe share toilets, bathrooms, shops. Basically, you do things together, so it is very easy for the disease to spread in the community". Health workers also described a lack of control when it came to preventing transmission in their health facilities. Despite providing protective and hygienic resources such as masks, soap, and hand sanitizer to patients and other visitors, health workers reported low use of these resources among the general public. One health worker from Garissa described their frustrations with trying to curb transmission in their facility: "Even at the hospital, those who come do not put on masks. So, it is left up to us to tell them to put on masks . . . We have washing stations for hand wash, and they do not wash their hands. We have sanitizers and yet, we are the ones to tell them what to do". Despite these instances of lower self-efficacy, many participants described how they take control of their risk by adapting their behaviors. PLW often reported that they "don't go to places where there are sick persons" and "always have masks on especially when you are in a public place" . One family member in Nairobi explained how taking ownership of one's own preventive behaviors can encourage others to act similarly: "First of all, you are the one who is supposed to be safe . . . You have to protect yourself before you tell the others. So, if you are wearing a mask, that is when you can tell your neighbor that Corona is real, that they should wear a mask, sanitize, keep their home environment clean. That is when they will heed". --- Discussion This study presents the various ways in which COVID-19 is conceptualized among PLW, male community members, and healthcare workers in three Kenyan counties through myths, perceived risk, financial implications of the pandemic, stigma, and self-efficacy. Myths related to COVID-19 were prominent among pregnant and lactating participants and the communities in which they reside. This finding supports prior research which has identified common misconceptions relating to the existence, spread, and weaponized use of COVID-19 in Kenya and the Sub-Saharan African region, suggesting misinformation and misconceptions about COVID-19 are not uncommon in Kenya [34,35]. Researchers have established several ways to mitigate harm-causing rumors, such as those experienced in Kenya. One strategy that has shown promising preliminary results is the use of e-health, including chatbots and mobile apps, to answer questions related to the COVID-19 vaccine [36][37][38][39][40][41]. This e-health approach offers a potential means of disseminating accurate health information virtually during a time when in-person interactions pose a substantial risk. However, in Kenya, e-health initiatives for the COVID-19 vaccine must address previously identified limitations with e-health in the country. For example, Njoroge et al. point to the needs for e-health initiatives in Kenya to expand their access to rural and other marginalized areas and ensure a commitment to evaluating program effectiveness [42]. Moreover, the use of chatbots to combat COVID-19 is still a highly novel technique and challenges with user acceptance, fact-checking, and reaching communities without internet are evident [36]. Other potential strategies to mitigate myths related to the COVID-19 vaccine include community education campaigns to improve vaccine literacy and increase awareness of myths, identifying and disseminating health information to communities' most-trusted sources of information, developing partnerships between public health entities and social media or news outlets, and leveraging the voices of social leaders [34,35,[43][44][45]. Participants perceived PLW as well as healthcare workers to be highly susceptible to SARS-CoV-2 infection. Similarly, studies across the Sub-Saharan Africa region have shown high risk perception of COVID-19 among healthcare workers [46][47][48]. In one study, Girma et al. found that health professionals working in public university hospitals in Ethiopia reported greater perceived vulnerability to COVID-19 than other prevalent infectious diseases in the region, including HIV, malaria, and tuberculosis, underscoring these findings [47]. Few studies have explored risk perception among PLW in this region; however, research across other areas of the world indicate that fear of infection and harm to the pregnancy are common concerns [12,49,50]. Such studies have found that pregnant women with high risk perception may also display protective behaviors such as vigilance for transmission, modifying workplace responsibilities, or information-seeking and may also experience symptoms of stress, anxiety, and depression [12,49,50]. Participants also displayed awareness of the severe manifestations of COVID-19 and the extensive impact the pandemic has made on their communities and across the globe. Of note, participants spoke of the deadliness of COVID-19, often describing personal experiences with family loss resulting from the pandemic. These findings may have implications for the public's adherence to preventive strategies , as several studies point to the positive association between risk perception and compliance [13,50]. Program implementers and health communicators should consider leveraging risk perceptions among target audiences in this study to promote compliance with behavioral prevention. Several strategies could be used to do so, such as providing factual information about the burden of COVID-19, using empathy to connect with and express concern for an audience, and communicating a direct and clear connection between behavioral prevention and reduced risk of disease [51,52]. However, Li et al. make an important declaration in their article on how risk perception motivates preventive behavior during the pandemic in the U.S. and China, which is that the relationship between risk perception and behavioral prevention is not always unilateral and can be complicated by contributing factors such as social and cultural norms [53]. It is essential that implementers targeting risk perception move quickly and adaptably to meet the unique needs of their target audience. Economic hardship resulting from both individual experiences with COVID-19 and community-wide preventive measures was widely experienced across this sample. Namely, participants spoke about the impact of the pandemic on job loss and restrictions to local businesses, causing families to struggle to make ends meet. According to participants, job insecurity was a result of both contracting the disease and the recovery process as well as local prevention measures which restricted business hours and consumer travel. The pandemic's impact on the economy has not only been felt in Kenya, but across the region [54][55][56][57]. Experts point to Ghana as an example of how countries like Kenya might improve and maintain their economic stability [57]. In the early stages of the pandemic, Ghana displayed flexibility in its policies by opening up domestic trade and offering transparency to its citizens on the country's financial status. Rather than imposing strict regulations to control the population, Ghana focused on community education and implemented creative solutions to funding prevention campaigns [57]. Until the concerns brought up by participants regarding the job market, local business restrictions, and costs of medical care are addressed in Kenya, communities, including PLW, will continue to face significant hardship. Officials in Kenya might consider implementing an approach which strikes a balance between offering greater flexibility with local businesses to improve the economy and reducing barriers to behavioral prevention by increasing access to and reducing costs of masks, sanitizer, and tests. In their multi-national review of countries' economic interventions to address the COVID-19 pandemic, Danielli et al. identified several ways in which countries have adapted to meet the financial and health needs of their citizens [58]. Strategies ranged in flexibility and scale and included subsidizing a specified percentage of employees' salaries to protect businesses while creating room for individuals to afford necessities, suspending mortgage payments, and providing loans and grants to business for protection. Although their findings were specific to high-and middle-income countries, the lessons learned may be applicable to Kenya. Participants also described pronounced stigma against those who test positive for COVID-19, often compared to the ostracization once experienced by HIV-positive people in their communities. According to our data, Kenyan COVID-19 survivors may experience detrimental effects on their mental health and their social support networks as a result of stigma within their families and broader communities. This stigma has the potential to discourage preventive behaviors critical for controlling the spread of the pandemic, such as screening, social distancing, using proper hygiene, and seeking treatment for positive cases [59,60]. Moreover, recent studies point to stigma as a barrier to disclosing one's COVID-19 status to those around them, putting others at risk of contracting the disease [48, [61][62][63]. Several recommendations have been posited to address the stigma related to COVID-19. As many suggest, tackling stigma requires a multi-level approach, utilizing strategies at the policy level , community level , and individual level [64][65][66]. Considering the parallels participants described between stigma toward COVID-19 and HIV in Kenya, researchers and program implementers might consider adapting an approach informed by successes from previous HIV work in the country. For instance, such studies often targeted patients' interpersonal relationships with family members, members of their social network, and health providers to focus on holistic wellness and social support [64][65][66]. Self-efficacy varied among participants, with some describing an inability to adhere to behavioral prevention due to religious beliefs and structural barriers, while others described instances in which they have taken control of their risk of transmission by complying with recommendations. Little research has been done in Kenya to identify structural barriers to nonpharmaceutical prevention strategies. However, one study of more than 2000 participants in informal settlements in Nairobi found that despite high awareness of their risk of transmission , 37% and 53% of participants reported access to water and costs as barriers to hand washing and sanitizing, respectively [67]. Across the region, perceived control of transmission has been associated with greater uptake of behavioral prevention [68][69][70][71]. Considering the lack of research in this area in Kenya, identifying and understanding factors which can facilitate self-efficacy will be instrumental to improving behavioral prevention. These findings point to a need to address both perceived and actual control over behavioral prevention among PLW and other target audiences in Kenya. As the national government revises or contributes to their practical recommendations throughout the pandemic, they should consider the feasibility of such recommendations and the resulting impact on citizens' self-efficacy. This study is not without limitations. This cross-sectional qualitative study was not designed to be generalizable, and so findings cannot be attributed to settings outside the three counties studied in Kenya and conclusions related to residence cannot be made. Given the self-reported nature of the study design and the somewhat divisive topic of COVID-19, social desirability bias is likely. Due to the recruitment strategy in which participants were identified through health and family networks, sampling bias is possible. The study was collected during a particular point in time of the SARS-CoV-2 pandemic, when knowledge about the disease and governmental vaccination policies were still evolving. During data collection, for example, the Kenyan Ministry of Health issued a press statement that stated that PLW could choose to receive COVID vaccines after counseling, which differed substantially from the previous recommendation which stated that PLW were not eligible for COVID vaccination . Additionally, data were collected when COVID-19 cases and deaths were starting to decline in Kenya. Despite these limitations, this study has several strengths. This is one of the few studies that has examined COVID-19 related behaviors specific to PLW and provides additional insight about community members and health workers. Moreover, this study contributes to a growing body of literature exploring social, emotional, and behavioral experiences and outcomes during the COVID-19 pandemic. Findings from this study can and should be used to inform the design and development of tailored communication programs and policies relating to PLW, healthcare workers, and the general public in Kenya. --- Conclusions Pregnant women are at high risk of adverse outcomes following SARS-CoV-2 infection, and uptake of preventive behaviors are essential to their and their babies' health and well-being during the pandemic. To facilitate health prevention among this group, we must first understand how PLW and key stakeholders in their decision-making processes experience and conceptualize COVID-19. This study sought to understand how three key audiences-PLW, male community members, and health workers-in Kenya have come to conceptualize COVID-19 to better understand determinants of COVID-19 related behaviors. Results indicate that risk perception and behavioral attitudes are largely influential in their experiences of the pandemic. The spread of misinformation is contributing to the continued presence of myths which are lessening the public's perceptions of risk to COVID-19 and adherence to preventive behaviors. Moreover, fear of stigma and economic instability were commonly reported as barriers to testing, treatment-seeking, and social distancing. Addressing potential barriers to preventive health behaviors, such as the spread of misinformation, financial constraints, and fear of social ostracization, will be essential for future public health prevention and communication responses targeting these groups. --- Data Availability Statement: Data presented in this study are available in this article. Further data sharing is not available. --- Supplementary Materials: The following supporting information can be downloaded at: https:// www.mdpi.com/article/10.3390/ijerph191710784/s1. In-depth interview instruments are provided as Supplementary Materials. Author Contributions: Conceptualization, A.M.P. and R.J.L.; methodology, R.J.L.; validation, A.M.P. and R.J.L.; formal analysis, A.M.P., C.L., B.F., R.G.-A., E.Z. and R.J.L.; writing-original draft preparation, A.M.P., C.L., B.F., R.G.-A., E.Z., P.S. and R.J.L.; writing-review and editing, R.A.K. and R.J.L.; supervision, R.A.K. and R.J.L.; funding acquisition, R.A.K. and R.J.L. All authors have read and agreed to the published version of the manuscript. ---
Pregnant women are at greater risk of adverse outcomes from SARS-CoV-2 infection. There are several factors which can influence the ways in which pregnant women perceive COVID-19 disease and behaviorally respond to the pandemic. This study seeks to understand how three key audiences-pregnant and lactating women (PLW), male community members, and health workersin Kenya conceptualize COVID-19 to better understand determinants of COVID-19 related behaviors. This study used qualitative methods to conduct 84 in-depth interviews in three counties in Kenya. Data were analyzed using a grounded theory approach. Emerging themes were organized based on common behavioral constructs thought to influence COVID-19 related behaviors and included myths, risk perception, economic implications, stigma, and self-efficacy. Results suggest that risk perception and behavioral attitudes substantially influence the experiences of PLW, male community members, and health workers in Kenya during the COVID-19 pandemic. Public health prevention and communication responses targeting these groups should address potential barriers to preventive health behaviors, such as the spread of misinformation, financial constraints, and fear of social ostracization.
Introduction Estimating the size of hidden and hard-to-reach populations is of critical importance to health officials seeking to mitigate the extent of health problems that may be concentrated within such populations [1], or when "reservoirs" of infection among a hidden population pose a health risk to the ambient population in which the hidden population is embedded [2,3]. In the former, otherwise treatable maladies can remain unaddressed, multiplying eventual treatment costs when cases are discovered at more advanced stages. Such is the situation, for example, with mental illness among homeless and street dwelling populations [4][5][6]. An embedded "hidden" population can also frustrate intervention efforts that might otherwise be effective in the ambient population, preventing control of infection prevalence [7]. One example of this is the high prevalence of sexually transmitted disease among commercial sex workers [8][9][10]. In all such situations, health officials seek to estimate both the overall prevalence levels of maladies within a hidden population and the size of the population itself, in order to know the scope of treatment needs and overall social risk. Efforts to ascertain prevalence and size estimates are frustrated by a range of factors that contribute to the "hiddenness" of the population. Such factors include heavy social stigma that inhibits the members of the hidden population from revealing their membership status. This is the case for people who inject drugs , who may be unwilling to self-identify as such under ordinary survey conditions [11,12]. Hiddenness due to stigma can be further compounded when such activities are illegal, when they carry heavy personal costs , or when disease status is unknown . In these situations, conventional sampling is unreliable, and ordinary multiplier methods based on conventional sampling are rendered ineffective. A number of techniques have been devised to address the problems of prevalence and population size estimation. These include capture-recapture [13,14], chain referral [15,16], venue-based sampling [17,18], cluster sampling [19], and combinations thereof. Among the most popular is respondent-driven sampling [20][21][22], which has been adapted for use in many situations, and which is employed widely in HIV surveillance efforts both within the United States and beyond [23]. RDS employs an incentivized chain referral process to recruit a sample of the hidden population. Under restricted but recognized conditions, RDS can be shown to result in a steady-state, "equilibrium" sample, and numerous methods have been derived for producing reasonable prevalence estimates from such a sample, while accounting for biases introduced in the referral process [24][25][26][27][28][29]. The ease of implementing RDS, the fact that it can operate under conditions of anonymity , and its rigorous treatment under a range of statistical assumptions have made it a popular choice for researchers working with hidden populations [30]. While significant operational, design and analytical challenges frequently arise in deploying the RDS framework [31][32][33], the ability of the RDS-based methods to produce meaningful prevalence data remains, and presents considerable potential for use in population size estimation. Unfortunately, rigorous strategies for estimating the overall size of the hidden population from RDS data have been less successful, relying on simulation-based validation that fails to yield analytic insight, and generating widely varying estimates [34,35]. While Berchenko and Frost have developed techniques that combine capture-recapture methods with RDS, their approach requires an initial degreebiased random sample and a second respondent driven sample [36]. Their hybrid schemes have been validated through simulations, and applied in the context of several field studies [37,38]. In comparison, the approach we develop here requires only a single RDS sample, and is evaluated through both mathematical proofs and simulation experiments. Other specialized methods have been developed to address size estimation for hidden populations, including capture-recapture procedures [39,40] and network scale-up methods [41]. Multiplier schemes typically use a sample of the hidden population and some external, often institutional knowledge-base for estimation purposes [14,42]. In these methods, two assumptions must generally be met: the sample is representative of the hidden population at large, and everyone in the hidden population is equally likely to be "captured" in the official statistics being used [43]. While representativeness can sometimes be assumed , it is often difficult to establish the uniformity of the capture statistics. Frankly stated, police arrests and hospital admissions can seldom be assumed to draw randomly from the hidden population. Further, capture-recapture/multiplier methods often require that the sample be identifiable in the institutional record, implying that expectations of anonymity on the part of sample respondents be abandoned. When working with hidden and highly stigmatized populations, such a sacrifice can be highly detrimental to both recruitment and informant reliability [44]. Network scale-up methods are also used to establish the size of hidden populations, though work in this area remains at an early stage. Here members of the entire population are asked to report on the number of known associates who fit the hidden population criteria [45,46]. This approach has the advantage of being employable under ordinary random sampling conditions that can make use of known sampling frames [47]. However, the technique requires that ordinary people know whom among their associates fit the criteria for inclusion in the hidden category [48,49]. Such an assumption faces objections in many of the situations in which we might wish to apply the technique, as when we seek to estimate the size of populations of PWID or sex workers. In these types of settings, individuals from the hidden population may go to great lengths to hide their membership status from friends and associates. Such effects inject "transmission error" into NSUM calculations, a quantity that is difficult to both detect and measure. In previous work, we presented a novel capture-recapture methodology for estimating the size of a hidden population from an RDS sample [50], referred to there as the "telefunken" method. The method could be easily integrated into a conventional RDS framework, allowing researchers to continue to take advantage of the wide body of work on RDS and its ability to yield reliable prevalence estimates. The method was adopted experimentally in the context of efforts to collect data on commercially sexually exploited children [51] and, later, users of methamphetamine [52]. Both these studies made use of RDS and took place in New York City. Subsequent implementations of the technique provided further evidence of its effectiveness and ease of implementation [34]. The telefunken method was so named because its application entailed asking each RDS respondent to report on others in the population known to them by providing an encoding of their associates' telephone number and demographic features . In taking this approach, the method avoided reliance on official statistics , and the requirement of drawing two independent samples . Each individual's code was created by considering a protocol-specified number of digits of their phone number, in order from last to first, and encoding each digit as 0/1 based on whether it was even or odd, and again 0/1 based on whether it was low or high ; in this manner, each subject and associate was "identified" by means of a multibit binary code. This many-to-one encoding allowed for ongoing anonymity for both respondents and their reported associates, while enabling the matching of contacts across numerous respondent interviews. In essence, the telefunken method represents a "one-step" approach which lifts many assumptions normally associated with other capture-recapture methods, and can be achieved using a single RDS sample from the hidden population. If shown to be effective, such an approach lends simplicity and greater cost-effectiveness to the size estimation procedure, potentially allowing for widespread application. Concerning the issue of anonymity, independently and in roughly the same time period, Fellows put forward a general framework of Privatized Network Sampling design [53]. PNS addresses two of the major concerns with regard to RDS data, namely the assumption that coupons are passed at random among alters, and that subjects can accurately report the number of alters that they have. As PNS is closely related to RDS, the standard RDS estimators may be used on data collected with a PNS design. Given the growing interest in telefunken and PNS-like techniques [26,34,54], this paper aims to provide a systematic exposition of its strategy for one-step, anonymity preserving, network-based population size estimation. In what follows we formally describe the technique, analyze its mathematical properties, and validate its performance through simulations under a variety of implementation conditions. The simulations show considerable promise for the technique in scenarios normally associated with research among "hidden populations". Limitations and next steps toward validation/extension are discussed at the end of the paper. --- Background Current network size estimation methods are based on quantifying the "repetition" or overlap observed across multiple samples [55]-where the category of objects sampled may be nodes, edges, distances, paths, motifs, or substructures [56,57], depending on the specific approach in question. • Node sampling methods often begin by taking independent uniform random samples of the population. In interpreting the overlap between samples [58,59], these methods are based on the same principle as the well-studied "Coupon collector's problem" from probability theory, for which maximum likelihood estimators and conservative confidence intervals are well known [60]. This classic method considers two uniform independent random samples [61]; in ecology, the method is often referred to as the "mark and recapture" protocol. Within a population V, the protocol first selects a uniform random "capture" sample S V, and then a second uniform random "recapture" sample R V. The right-hand-side expression in is known as the Lincoln-Peterson estimator [62,63]. Many extensions and improvements to this classical technique have been developed, such as those making use of weighted sampling techniques [64], or sampling that is biased by the degree distribution of network nodes [65]. • Edge sampling approaches to population size estimation have also been developed [66][67][68]. These methods not only consider a sampled set of nodes, but also elicit a sample of their network neighbors. While edge sampling encounters problems associated with a bias toward high degree nodes, these methods offer potential gains in efficiency in dense graphs and where independent random sampling of nodes is restricted. • Lastly, sampling via random walks represents a practical approach that is commonly used in estimating the size of social networks. Random walk methods start from an arbitrary node, then move to a neighboring node uniformly at random, and iterate. A typical random walk visits every node with a frequency proportional to its degree, but this bias can be quantified by Markov Chain analysis, and corrected to enable the derivation of an estimate of graph size from the frequency with which sampled nodes appear during the walk process. Random walk methods have largely used a sampling with replacement model, which may, in theory, introduce bias in estimates when the size of the sample is large [24,69]; however, there is some recent experimental evidence that such concerns may be overstated [70]. These methods are widely used to measure the size of online social networks, and are frequently employed in conjunction with a variety of web crawler data [71][72][73][74][75]. The approach developed here is inspired by and builds on several of the above strategies, including random walks and edge elicitation. An outline of this paper follows: In Section 3.1, we present a population estimator for uniform random samples. This estimator is extended for respondent-driven samples in Section 3.2. The two estimators are evaluated over a broad range of graph families using a general experimental framework . The experimental results are presented in Sections 4.3 and 4.4. In Section 4.5, we adapt the estimators for use in networks with clustering, showing in Section 4.6 that the revised schemes continue to perform well on synthetic networks. In Section 5, we extend the network size estimation schemes to allow for protection of subject privacy. These anonymitypreserving extensions are evaluated through simulation experiments in Sections 5.2 and 5.3. The impact of non-uniformities is assessed in Section 6, with special consideration of degree bias in RDS seed selection, and bottlenecking due to community structure. The performance of the proposed estimators is evaluated on a real-world network in Section 7. Finally, discussion and limitations are presented in Section 8. --- New population size estimators We seek to generalize the Lincoln-Peterson framework of overlapping capture and recapture sets to the context of networked populations, and describe it formally in the language of graphs. The following definition provides graph-theoretic notations which will be necessary in order to precisely define the proposed sampling and estimation processes. Definition 1. Let G = be a graph. For each v 2 V, denote the degree of v in G as d. Given A V, denote the mean degree of vertices in A as: " dðAÞ ≔ 1 jAj X v2A dðvÞð3Þ and the (harmonic ) Notation 1. In the arguments that follow, graph-theoretic quantities will sometimes be considered simultaneously in the context of more than one graph-e.g. G 1 = , and G 2 = . To avoid ambiguity in such settings, we will make the context clear by appending the graph as a parameter-e.g. the arithmetic mean degree of vertices in G 1 is denoted " dðV 1 ; G 1 Þ, while the harmonic mean degree of vertices in G 2 is expressed as dðV 2 ; G 2 Þ. Notation 2. Whenever we are considering a multiset X, we will denote to its multiset cardinality as hXi, while its set cardinality will be written as |X à |. For example, if X = {1, 1, 2, 8, 8, 8} then hXi = 6, while |X à | = 3. We say that A B are multisets, if 8v 2 V, we have χ A χ B . --- Definition 2. Given multisets of vertices A, B V we denote their characteristic functions as --- Population size from a uniform random sample With the formalisms of Definition 1 in place, we can define the estimator n 1 , which, given a uniform random subset of vertices T V, yields an estimate of |V|. Definition 3. Given a graph G = and T V, define n 1 ðTÞ ≔ jTj Á hRðT; ;Þi hMðT; ;Þi : ð8Þ Lemma 1 shows that as the sample size grows, n 1 converges to |V|. Lemma 1. Let G = be a graph and let T 1 T 2 T 3 . . . V be an ascending chain converging to S 1 i¼1 T i ¼ V. Then lim i!1 n 1 ðT i Þ jVj ¼ 1: Proof. Put R i ≔ R, M i ≔ M, and Δ i ≔ R i \M i . Note that R 1 R 2 R 3 . . . and M 1 M 2 M 3 . . . are ascending chains of multisets, and M i R i . Suppose u 2 Δ i and w R i ðuÞ ¼ a; clearly 0 < a d. Then since the ascending chain i = 1, 2,. . . converges to V, there exists a least j 0 > i for which w M j ðuÞ ¼ dðuÞ and therefore w D j ðuÞ ¼ 0 for all j ! j 0 . It follows that \ 1 i¼1 R i nM i ¼ ; where multiset intersection and difference are as described in Definition 2, and thus lim i!1 hR i i hM i i ¼ 1 which implies lim i!1 n 1 /|T i | = 1, | = bc n Á fc selected using uniform random sampling in V n . If c n Á f diverges as n goes to infinity while c 2 n Á " dðV n Þ ! Y 1ð9Þ for some finite constant Θ 1 > 0, then n 1 ðT n Þ jV n j necessarily converges to 1. Proof. Define random variables " R n ≔ 1 f ðnÞ hRðT n ; ;Þi ¼ 1 f ðnÞ X u2T n dðuÞð10Þ " M n ≔ 1 f ðnÞ hMðT n ; ;Þi:ð11Þ For uniform random u 2 V n , E½dðuÞ ¼ " dðV n Þ. Since |T n | = bc n Á fc diverges, the law of large numbers and linearity of expectation imply that as n tends to infinity hRðT n ; ;Þi ¼ X u2T n dðuÞ ! p X u2T n " dðV n Þ ¼ jT n j Á " dðV n Þð12Þ and thus c n Á " R n ¼ 1 f ðnÞ hRðT n ; ;Þi ! p c n Á 1 f ðnÞ Á jT n j Á " dðV n Þ ¼ c 2 n Á " dðV n Þ ! p Y 1 :ð13Þ Now for each u 2 T n we have E[hN \ T n i] = d Á |T n |/f. Again, by the law of large numbers and linearity of expectation, as n tends to infinity " M n ! p " R n Á jT n j f ðnÞ ¼ " R n Á c n ! p Y 1 :ð14Þ Considering and as preconditions of Slutsky's theorem [76], we conclude: n 1 ðT n Þ f ðnÞ ¼ 1 f ðnÞ Á c n Á f ðnÞ Á " R n " M n ! d plim n!1 c n Á " R n plim n!1 " M n ¼ Y 1 Y 1 ¼ 1: The correspondence between Eq in Definition 3 and our previous telefunken estimator is clear [77]. In addition, Eq demonstrates a parallel structure with the Lincoln-Peterson estimator shown in expression : T represents the first assay ; R stands for the second assay ; the multiset M is the subpopulation of the first assay that is recaptured by the second assay. Of course, in the present setting, the second assay R is far from independent of the first assay T, since the two sets are intrinsically linked through the network geometry of G. Nevertheless, the fact that T is a random subset of V is enough to neutralize the impact of this non-independence and enable consistent estimation of population size. Corollary 1. Several special cases of Proposition 1 are of interest. In each of these cases, it is straightforward to verify that as n goes to infinity, c n Á f diverges, while c 2 n Á " dðV n Þ tends to some finite strictly positive constant: 1) is a constant, and " • When f = O, c n = O( dðV n Þ ¼ Oð1Þ is a constant. In this case, we have a family of graphs of increasing size and constant average degree, in which we are taking uniform random samples whose size is a constant proportion of the entire population. • When f = O, c n = O/n), and " dðV n Þ ¼ Oðn 1À =gðnÞ 2 Þ , where g is a function which diverges, and > 0 is a constant. For example, if we take g = n , then c n = O, and " dðV n Þ ¼ Oðn 1À 3 Þ. As tends to 0, we approach a family of graphs of increasing size and linear average degree, in which we are taking uniform random samples of an absolute constant size. This special limit case is manifested by Erdős-Rényi graphs [78]. --- Population size from a respondent-driven sample Although the n 1 estimator shows robust performance under uniform random sampling , random sampling is seldom a feasible strategy with hidden populations. As discussed above, sampling hard-to-reach populations presents considerable practical challenges [55], and many current surveys of hidden populations have come to depend on a tracked "peer referral" process known as respondent driven sampling [21]. For purposes of estimation, we consider a respondent-driven sample to be a random variable based on several parameters: an underlying networked population G = , a specified number of seeds |D|, the number of recruiting coupons c to be given to each subject, and the target sample size r. In our simulation experiments, the sampling procedure begins by randomly choosing |D| initial "seed" subjects in the network. For most of this paper, seeds are selected uniformly at random, though later, in Section 6, we will report on the differential impact of non-uniform RDS seed selection-specifically, seed selection that is biased by ego network size or restricted by the presence of community structures. Each seed subject is given c recruiting coupons and asked to participate in a "referral" process by distributing these among their study-eligible peers. Each subject v succeeds in recruiting between 0 and min{c, d } individuals from their ego network, with the precise number being determined stochastically according to a specified distribution δ R on {0, 1, . . ., c}. Each referred peer is assumed to come in for their interview at a time that is offset from their recruiter's interview by an amount that random and exponentially distributed with rate λ W . When one or more of the recruited peers come in for interview with the coupon given to them by their recruiter, they too are given c coupons and asked to participate in the referral process. The scheme proceeds recursively in this manner using a finite number of 3r depletable coupons, until all r individuals have been recruited and interviewed. If the referral process stalls before r subjects have been interviewed, a new seed is recruited. Participation incentives are arranged to ensure that no subject will be the recipient of more than one coupon, and thus the process results in a collection of disjoint directed trees rooted at the seeds [79]. The precise values of the RDS parameters |D|, c, r and implementation parameters δ R , λ W for our simulation experiments are detailed in Assumption 2; the stochastic process used to generate the underlying synthetic networks G on which this RDS operates is described in Section 4.1. Given the tendency of RDS to oversample high degree nodes, issues arise when estimation techniques attempt to make use of the degree statistics of a respondent driven sample. Special steps must be taken to account for differences between the average degree of an RDS sample and the average degree of the population from which the RDS sample is drawn. The simplifying assumption below is needed for our formal proofs of the proposed estimators' performance. We emphasize that this assumption is not enforced within the synthetic networks we used in our simulations, through which the proposed estimators' performance was experimentally evaluated. Assumption 1. Whenever we are considering H = to be a subgraph on S V obtained through an RDS process inside graph G = , we will assume dðSÞ $ " dðVÞ. This assumption is justified in prior work [20,22], is provably true for configuration graphs [24], and is reflective of the basic fact that the harmonic mean is robust against the presence of high-degree outliers, as we may expect to face when S is obtained via a non-uniform sampling process like RDS. The next estimator n 2 , provides an estimate |V| from a respondent driven sample S V. Definition 4. Given a graph G = , a set S V, and H = a subgraph with edge set F E \ , define n 2 ðS; FÞ ≔ " d ðSÞÀ 1 d ðSÞ Á jSj Á hRðS; FÞi hMðS; FÞið15Þ The next proposition gives sufficient conditions under which respondent-driven samples S V produce consistent estimates n 2 * |V| when |V| is large. Proposition 2. For n = 1, 2, . . . let G n = be a graph obtained by configuration graph sampling via degree distribution D n , where the vertex set size |V n | = f grows unboundedly. Let c n 2 c selected using RDS sampling in G n from |D n | seeds chosen uniformly at random. Define the random variable D n ≔ " dðS n Þ À 1 dðS n Þ : Accepting Assumption 1, if c n Á f/D n diverges as n goes to infinity, while D 2 n Á c 2 n Á " dðV n Þ ¼ ð " dðS n Þ À 1Þ 2 Á c 2 n dðS n Þ ! p Y 2ð16Þ for some finite constant Θ 2 > 0, then n 2 ðS n Þ jV n j necessarily converges to 1. Proof. Let be a subgraph produced by an RDS sampling process in G n , and let T n V n be an equal-sized set of vertices chosen by uniform random sampling, i.e. |T n | = |S n |. For random u 2 S n and v 2 T n , as n tends to infinity jNðu; ;Þj " dðS n Þ À jNðv; ;Þj " dðT n Þ ¼ jNðu; ;Þj " dðS n Þ À jNðv; ;Þj " dðV n Þ ¼ jNðu; ;Þj " dðS n Þ À jNðv; ;Þj dðS n Þ ! p 0:ð17Þ where the first equality stems from the law of large numbers, and the second from Assumption 1. Now S n is an RDS sample and hence is the disjoint union of D n many trees. It follows that jF n j jS n j ¼ 1 À jD n j bc n Á f ðnÞc : Since |S n | = bc n Á fc diverges and c n Á f/D n diverges, we may conclude that lim n!1 jF n j jS n j ¼ 1:ð18Þ We note that |N| |N|, and incorporating back into the final expression in , we deduce jNðu; F n Þj " dðS n Þ À 1 À jNðv; ;Þj dðS n Þ ! p 0:ð19Þ Definition 1's Eq and linearity of expectation then imply that as n tends to infinity hRðS n ; F n Þi ! p " dðS n Þ À 1 dðS n Þ Á hRðT n ; ;Þi:ð20Þ The configuration graph sampling process dictates that as n tends to infinity, for uniformly random , expression , the law of large numbers, and linearity of expectation, together imply that as n tends to infinity u 2 S n E½hNðu; F n Þ \ S n i ¼ ½ " dðuÞ À 1 Á hRðS n ; F n Þi 2jE n j ¼ ½ " dðuÞ À 1 Á hRðS n ; F n Þi " dðV n Þ Á f ðnÞ : Definition 1's Eq hMðS n ; F n Þi ! p hRðS n ; F n Þi 2 " dðV n Þ Á f ðnÞ ! p 1 " dðV n Þ Á f ðnÞ Á " dðS n Þ À 1 dðS n Þ " # 2 Á hRðT n ; ;Þi 2 :ð21Þ Define the following random variables, closely related to and of Proposition 1: R à n ≔ hRðS n ; F n Þi = f ðnÞ ¼ D n Á " R n ! p D n Á c n Á " dðV n Þð22Þ M à n ≔ hMðS n ; F n Þi = f ðnÞ ¼ D 2 n Á " R 2 n = " dðV n Þ ! p D 2 n Á c 2 n Á " dðV n Þð23Þ From our assumptions on the convergence of D 2 n Á c 2 n Á " dðV n Þ, we see that as n tends to infinity D n Á c n Á R à n ¼ D 2 n Á c 2 n Á " dðV n Þ ! p Y 2ð24Þ M à n ! p Y 2ð25Þ Considering and as preconditions of Slutsky's theorem [76], we conclude: n 2 ðS n Þ f ðnÞ ¼ 1 f ðnÞ Á D n Á c n f ðnÞ Á R à n M à n ! d plim n!1 D n Á c n Á R à n plim n!1 M à n ¼ Y 2 Y 2 ¼ 1: --- Evaluating the n 1 and n 2 estimators To evaluate the proposed estimators n 1 and n 2 , we conducted simulation experiments on samples drawn from synthetic networks using uniform and respondent-driven sampling, respectively. Underlying networks were selected by configuration sampling techniques [80][81][82] relative to Lognormal, Poisson, and Exponential distributions. We also considered Baraba ´si-Albert graphs [83], and Erdős-Re ´nyi graphs [78]. --- Synthetic networks The tendency of RDS to over-recruit high degree nodes is well known, and readily evidenced in experiments on idealized topologies. Attempts to model peer-referral or "snowball" recruitment processes point to the fact that the degree distribution of nodes can influence the performance of mean estimators [84], suggesting Bayesian approaches which make use of degree distribution data in the derivation of population size estimates [35,85]. To validate the n 1 and n 2 estimators against a wide range of possible topologies, five idealized families of random graphs were used to perform initial experiments. In later sections, we take up the issue of clustering , anonymity , non-uniformity in the seed selection , and performance on a real-world network . In what follows, configuration graphs were sampled by first attaching the prescribed number of free half-edges to each node. Pairs of free half-edges were then chosen uniformly at random and bound together to form an edge, repeatedly, until no free half-edges remain. Note that this sampling process may yield graphs that have multiple parallel edges and self loops. Definition 5. Given a set V with |V| = n, for each l 2 R, λ > 1, let distributions D LðlÞ , D PðlÞ , D X ðlÞ , and D RðlÞ : V ! N be defined such that for each v 2 V: • D Lðl;nÞ ðvÞ ¼ 1 þ X where X is a Lognormal random variable with mean λ -1 and standard deviation 1. • D Pðl;nÞ ðvÞ ¼ 1 þ X where X is a Poisson random variable with rate parameter λ -1. • D X ðl;nÞ ðvÞ ¼ 1 þ X where X is an Exponential random variable with mean λ -1. Corresponding to each of the three distributions above, let Lðl; nÞ, Pðl; nÞ, X ðl; nÞ, Rðl; nÞ be the sample spaces of configuration graphs G = where |V| = n. Note that a random graph drawn from these sample spaces will have expected mean vertex degree E½ " dðVÞ ¼ l. Definition 6. For each l 2 R, λ > 1, let Bðl; nÞ be the sample space of n-vertex Barabási-Albert graphs G = . Each such graph is the final output of a process which produces a sequence of graphs G i = on V i ≔ {v 1 , . . . v i } with λ i n. The initial graph G λ = is taken to be the complete graph on λ vertices, i.e. E = V λ × V λ . At each stage i > λ of the pro- cess, node v i connects to a random number D i ≔ jE i nE iÀ 1 j ¼ bl=2c with probability 1 þ blc À l 1 þ bl=2c otherwise: ( of pre-existing nodes fp i;1 ; . . . p i;D i g V iÀ 1 . This set is constructed by sequential sampling without replacement, i.e. as l = 1, . . ., Δ i , each of the candidates w 2 C i, l ≔ V i-1 \{v i,1 , . . . v i,l-1 } is chosen with a probability that reflects degree-biased preferential attachment Probðp i;l ¼ wÞ ¼ 1 þ dðw; G iÀ 1 Þ P w 0 2C i;l 1 þ dðw 0 ; G iÀ 1 Þ : Here d denotes the degree of vertex w in graph G i-1 = (V i-1 , E i-1 ). The final member of the resulting sequence G n = is output as the sampled graph. Note that if n ) λ, the process above results in a graph G = , sampled from Bðl; nÞ, and having expected mean vertex degree E½ " dðVÞ $ l. Definition 7. For each l 2 R, λ > 0, let Eðl; nÞ be the sample space of n-vertex Erdős-Rényi graphs G = , where E V × V is a random subset constructed uniformly at random by taking: Probððu; vÞ 2 EÞ ¼ l=ðn À 1Þ u 6 ¼ v 0 u ¼ v 2 V × V. Note that a random graph G = drawn from Eðl; nÞ will have expected mean vertex degree E½ " dðVÞ $ l. --- Experimental framework For each of the 5 families Lðl; nÞ; Pðl; nÞ; X ðl; nÞ; Bðl; nÞ, and Eðl; nÞ defined in Section 4.1, we varied λ = 3, 5, 10; from each of these 15 concrete sample spaces, we used configuration graph sampling to select 30 random graphs of sizes n = 5000, 10K, 20K and 40K. In each of these 5 × 3 × 4 × 30 = 1,800 graphs, we generated 30 uniform and 30 RDS samples of size r = 250, 500 and 750. In this manner, a total of 1, 800 × 30 × 3 × 2 = 324, 000 simulations were conducted. Section 4.3 reports on simulation experiments in which n 1 was applied to uniform random samples; experiments in which n 2 was applied to respondent driven samples are presented in Section 4.4. --- Evaluating n 1 on synthetic networks The experiments here follow the framework described in Section 4.2 and use uniform random samples. The 12 graphs in Fig 1 present the performance of the n 1 estimator as the true population size n is varied from 5 Á 10 3 to 40 Á 10 3 and the size of the uniform sample is varied from 250 to 750 . In each of the 12 graphs, the xaxis varies the average degree λ from 3 to 10. For each choice of λ, the medians and quartile ranges of n 1 are given for each of the 5 graph families. Each of these is determined by 900 simulations . Fig 1 shows that as sample size increases, the medians of n 1 converge to the true population size. For example, when n = 5 Á 10 3 and r = 250, Exponential degree distribution graphs with λ = 3 have a median n 1 value of 5663 . In comparison, when r = 750, the median for this family of graphs is 5204 . As the sample size increases from r = 250 to r = 750, the error in the median estimate decreases by 9.2%. The benefit of increasing sample size diminishes as networks grow larger, however. For example, for a network of size n = 40 Á 10 3 , increasing the sample size from r = 250 to r = 750 causes the error in the median n 1 estimate to undergo only a 2% change. In addition, Fig 1 shows that as sample size increases, the interquartile range of the estimates decreases. For example, when n = 5 Á 10 3 and r = 250, Lognormal degree distribution graphs with λ = 10 experience an interquartile range of 1950 in their n 1 estimates . In comparison, when r = 750, the interquartile range for this family of graphs decreases to 1425 . The magnitude of this effect increases as networks grow larger. For example, for a network of size n = 40 Á 10 3 , increasing the sample size from r = 250 to r = 750 causes the interquartile range of the n 1 estimate to undergo a 48.6% decrease. --- Evaluating n 2 on synthetic networks The experiments in this and all subsequent sections use respondent-driven samples. The precise values of the RDS parameters |D|, c, r and implementation parameters δ R , λ W are given below. Assumption 2. In all our experiments where RDS is used to generate samples, we take |D| = 7 random seeds drawn uniformly at random from V. Each subject was given c = 3 coupons. Depending on the experiment, the sample size r was either 250, 500, or 750. Reflecting our experiences in the field [86], we took the recruiting success distribution δ R such that each subject had a 90% chance of recruiting 2 subjects randomly from their ego network, and a 10% chance of recruiting just 1. [Individuals with an ego network of size 1 were assumed to recruit that one individual with 100% probability, while individuals with an ego network of size 0 recruited no one]. The delay between recruiter and recruited subjects' interview times were assumed to be exponentially distributed with rate λ W = 1. The 12 graphs in Fig 2 present the performance of the n 2 estimator as the true population size n is varied from 5 Á 10 3 to 40 Á 10 3 and the size of the RDS sample is varied from 250 to 750 . In each of the 12 graphs, the x-axis varies the average degree λ from 3 to 10. For each choice of λ, the medians and quartile ranges of n 2 are given for each of the 5 graph families. Each of these is determined by 900 simulations . Fig 2 shows that the median of n 2 converges to the true population size across a range of topologies, RDS sample sizes, and overall populations. In addition, Fig 2 shows that as sample size increases, the interquartile difference decreases. For example, when n = 5 Á 10 3 and r = 250, Poisson degree distribution graphs with λ = 3 experience an interquartile range of 1676 in their n 2 estimates . In comparison, when r = 750, the interquartile range for this family of graphs decreases to 524 . The magnitude of this effect decreases as networks grow larger, such that, for a network of size n = 40 Á 10 3 , increasing the sample size from r = 250 to r = 750 causes the interquartile range of the n 2 estimate to undergo a 60.8% decrease. However, the total range of estimates as a proportion of the median decreases as sample size increases, indicating decreasing sample-based variance . --- Population size estimation in the presence of clustering Beyond the oversampling of high degree nodes, RDS faces challenges when used in networks where network clustering is pronounced [49,87]. While methods are available to assess the presence of clustering [25], and recent work has proposed new techniques to estimate and account for clustering from a single RDS sample [88], the effects of this phenomenon on population size estimation from RDS samples is seldom discussed. The root of the problem lies in the fact that RDS walks necessarily sample network neighborhoods. Where neighbors show high levels of network transitivity, counts of common edges will produce high numbers of "matches" that appear in the denominator of both n 1 and n 2 . This will bias the estimates of overall population size derived from these estimators toward underestimation of the total network size. In the context of random walk techniques, one approach to this problem is to only consider collisions among nodes that are far away from each other in the sampling chain when inferring a population size estimate [75]. A similar approach is taken here by considering neighbor overlap among respondents whose path distances in the RDS chains are above a specific threshold. For simplicity, here we take this threshold to be infinity, leaving the consideration of finite thresholds for consideration in future research. In short, we consider a modification of n 2 that discounts matched free ends within a single RDS sampling tree and, for purposes of estimation, only counts those matches that occur across distinct RDS trees. The next Definition introduces formalisms necessary to make this precise. The next estimator n 3 , provides a revised estimate |V| from a respondent driven sample S V, discounting matches that occur within the same RDS component. The next proposition gives sufficient conditions under which respondent-driven samples S V produce consistent estimates n 3 * |V| when |V| is large. --- Definition 8. Let G = , take S V, and let H = be a subgraph on S V with edge set F E \ obtained by respondent driven sampling from a set of seeds D S where --- Definition 9. Given a graph G = , a set S V, and H = a subgraph on S V with edge set F E \ . Take D S satisfying |D| > 1 and s 1 6 ¼ s 2 ¼ ) C g ðs 1 Þ \ C g ðs 2 Þ ¼ ;: Proposition 3. For n = 1, 2, . . ., let G n = be a graph on |V n | = f vertices obtained by configuration graph sampling via degree distribution D n , where f grows unboundedly. Let c n 2 (0, 1], and take S n V n to be a subset of size |S n | = bc n Á fc selected using RDS sampling in G n from |D n | > 1 seeds. Define the random variable D n ≔ " dðS n Þ À 1 dðS n Þ : Accepting Assumption 1, if c n Á f/D n diverges as n goes to infinity, while D 2 n Á c 2 n Á " dðV n Þ Á jD n j À 1 jD n j ¼ ð " dðS n Þ À 1Þ 2 Á c 2 n dðS n Þ Á jD n j À 1 jD n j ! p Y 3ð29Þ for some finite constant Θ 3 > 0, then n As n tends to infinity R n ! p " dðS n Þ À 1 dðSÞ jD n j À 1 jD n j Á c n Á f ðnÞ Á R à n ðS n ; F n Þ M n ! p jD n j À 1 jD n j Á M à n ðS n ; F n Þ: where R à n ðS n ; F n Þ ! p D n Á c n Á " dðV n Þ as noted in , while M à n ðS n ; F n Þ ! p D 2 n Á c 2 n Á " dðV n Þ as noted in . Thus R n ! p D 2 n Á c 2 n Á " dðV n Þ Á jD n j À 1 jD n j Á f ðnÞ ¼ Y 3 Á f ðnÞ M n ! p D 2 n Á c 2 n Á " dðV n Þ Á jD n j À 1 jD n j ¼ Y 3 : By Slutsky's theorem [76], it follows that n 3 ðS n ; F n ; D n ; gÞ f ðnÞ ¼ 1 f ðnÞ Á R n M n ! d plim n!1 1 f ðnÞ Á R n plim n!1 M n ¼ Y 3 Y 3 ¼ 1:ð35Þ --- Evaluating n 3 on synthetic networks Prior to examining the performance of n 3 on empirical networks, we first look at its performance on the synthetic networks used to evaluate n 1 and n 2 . The experiments shown in Fig 3 follow the framework described in Section 4.2 and use respondent driven samples, each obtained via an RDS process operating as specified in Assumption 2. The 12 graphs in Fig 3 present the performance of the n 3 estimator as the true population size n is varied from 5 Á 10 3 to 40 Á 10 3 and the size of the RDS sample is varied from 250 to 750 . In each of the 12 graphs, the x-axis varies the average degree λ from 3 to 10. For each choice of λ, the medians and quartile ranges of n 3 are given for each of the 5 graph families. Each of these is determined by 900 simulations . Fig 3 shows that the median of n 3 converge to the true population size, much like the performance of the n 2 estimator. In all the networks, the medians of n 3 estimates are all very close to the their true network populations, regardless the sample size, population size, and type of network topology. In addition, Fig 3 shows that as sample size increases, the interquartile range of the estimates decreases. For example, when n = 5 Á 10 3 and r = 250, Lognormal degree distribution graphs with λ = 3 experience a interquartile range of 1915 in their n 3 estimates . In comparison, when r = 750, the interquartile range for this family of graphs decreases to 604 . The magnitude of this effect decreases as networks grow larger. For example, in a network of size n = 40 Á 10 3 , increasing the sample size from r = 250 to r = 750 causes the interquartile range of the n 3 estimate to undergo a 55.0% decrease. --- Subject privacy through hashing Significant obstacles arise in the direct application of estimators n 1 , n 2 , n 3 , , and , respectively). In many circumstances where RDS is used, researchers are often required to measure the sizes of stigmatized networked populations and within social communities that naturally seek to remain "unidentified". In these circumstances, the membership of sets S and R is often not explicitly knowable because individuals are reluctant to unambiguously identify themselves or their social network peers. To formalize and accommodate notions of privacy required under such circumstances within the estimation procedures described above, we assume that each individual in V = {v 1 , v 2 , . . ., v |V| } has a unique ID; for simplicity we take the ID of v i 2 V to be the integer i . Towards ensuring anonymity, we imagine a hashing [89] function ψ: V ! O that assigns each individual's ID to a code in O. We thus follow the general framework of Privatized Network Sampling design [53], mimicking the hash functions of telefunkentype [50]. By taking ψ to be a random function that is difficult to invert, subjects are convinced that disclosing the hash code of an individual does not unambiguously identify the individual themselves, and so preserves their privacy. Assumption 3. Suppose V is a set of individuals obtained via RDS referral tree F. While each v i 2 V is unwilling to disclose their own ID i, and is secretive about the IDs of their peers {j|v j 2 N }, they are readily willing to reveal the own hash code ψ; the hash codes of their peers : N c u ðS; FÞ ≔ a v2NðuÞ ðu;vÞ = 2 F fcðvÞg Oð36Þ and their own network size dðv i Þ ¼ hN c u ðS; FÞi, excluding the referral tree F. Assumption 4. To simplify our analysis, throughout what follows, we will assume ψ is a function chosen uniformly at random from the space of all functions from V ! O. We will refer to such a ψ as a "random hash function" from V to O. The action of ψ on the V is illustrated in Fig 4 . In Section 6.3, we describe ways to translate the results of this paper to settings where ψ is not a uniformly random hashing function. In practice, ψ might be an obtained by amalgamating a well-defined tuple of characteristics of v which are known to v's friends and then encoding this using a cryptographic function. A related coding technique was used in our earlier work on estimating the size of the methamphetamine using population in New York City, where it was referred to as the telefunken code [50]. identifiable subjects anonymized subjects hash function --- Revised estimators incorporating hashing We begin by "lifting" the terms introduced in the earlier Definition 1, to the hashing or PNS framework [53]. Definition 10. Let G = be a graph, and ψ: V ! O a random hash function. Let H = be a subgraph on S V with edge set F E \ . The hash codes of the subjects is S c ≔ fcðvÞ j v 2 Sg O:ð37Þ The ψ-free ends of S are taken to be the disjoint union R c ðS; FÞ ≔ a u2S N c ðu; FÞ Oð38Þ and the ψ-matches of are taken to be the disjoint union M c ðS; FÞ ≔ a u2S ðN c ðu; FÞ \ S c Þ O:ð39Þ We denote their respective multiset cardinalities as hR c ðS; FÞi ≔ X u2S jN c ðu; FÞj hM c ðS; FÞi ≔ X u2S jN c ðu; FÞ \ S c j: The reader may wish to compare expressions , , and with the non-hashed analogues in Definition 1's expressions , , and . The next Lemma is foundational and justifies the proposed revised estimates n c 1 , n c 2 , and n c 3 , which will be presented subsequently. Lemma 2. Let G = a graph with |V| = n 0 , sampled from the space of all n 0 -vertex graphs by configuration sampling with respect to degree distribution D. Let S V be an RDS sample collected as a subgraph H = be with edge set F E \ . Let c ≔ |S|/|V|, where c ( 1. Accepting Assumption 1, take ψ: V ! O to be a random hash function. --- Suppose u 2 S reports its own code x ≔ ψ, the code y ≔ ψ of one of its neighbors v 2 N u . If w 2 ψ -1 \ S is selected uniformly at random, and w has degree d, then Probðw ¼ vÞ ¼ 1 n 0 À 1 jOj d ðSÞ ðdðwÞÀ 1Þ þ 1 : 2. For each code y 2 O, over the space of all random hash functions, E½hM c ðS; FÞi ¼ mðy; n 0 Þ where mðy; n 0 Þ ≔ X w2c À 1 ðyÞ\S 1 n 0 À 1 jOj dðSÞ ðdðwÞ À 1Þ þ 1 mðn 0 Þ ≔ X y2M c ðS;FÞ mðy; n 0 Þ: Proof. Because ψ is a random function, for any z 2 O E½jc À 1 ðzÞj ¼ n 0 jOj : The expected total number of free ends incident to some vertex in the set ψ -1 \{w} is ðn 0 À 1Þð1 À cÞ jOj Á dðSÞ þ ðn 0 À 1Þc jOj Á dðSÞ À 1 and since w 2 S, the expected number of free ends incident to w is d -1. So Probðw ¼ vÞ ¼ dðwÞ À 1 ðn 0 À 1Þð1À cÞ jOj Á dðSÞ þ ðn 0 À 1Þc jOj Á dðSÞ À 1 þðdðwÞ s 1 6 ¼ s 2 ¼ ) C g ðs 1 Þ \ C g ðs 2 Þ ¼ ;: The reader may wish to compare expressions and with the non-hashed analogues in Definition 8's expressions and . We also define xðy; s; g; n 0 Þ ≔ X w2c À 1 ðyÞ\ C g ðsÞ 1 n 0 À 1 jOj dðSÞ ðdðwÞ À 1Þ þ 1 xðs; F; g; n 0 Þ ≔ X y2X --- Evaluating n c 2 on synthetic networks The experiments discussed here follow the framework used in prior experiments described above. Samples are derived using the RDS process operating as specified in Assumption 2. The hash space size used for the encoding of each agent's identity was varied from |O| = 2 Á 10 3 to 256 Á 10 3 . The 12 graphs in Fig 5 present the performance of the n c 2 estimator as the true population size n is varied from 5 Á 10 3 to 40 Á 10 3 , the sample size is fixed to r = 500 and the hash space size was varied from |O| = 2 Á 10 3 to 256 Á 10 3 . In each of the 12 graphs, the x-axis varies the average degree λ from 3 to 10. For each choice of λ, the medians and quartile ranges of n c 2 are given for each of the 5 graph families. Each of these is determined by 900 simulations . Fig 5 shows that as hash space size increases, the medians of n c 2 converge to the true population size. For example, when n = 5 Á 10 3 and |O| = 2 Á 10 3 , Lognormal degree distribution graphs with λ = 3 have a median n c 2 value of 4705 . In comparison, when |O| = 256 Á 10 3 , the median value for this family of graphs is 4901 . As the hash space size increases from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 , the error in the median estimate decreases by 3.9%. The magnitude of this phenomenon increases as networks grow larger. For example for a network of size n = 40 Á 10 3 , increasing the hash space size from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 causes the error in the median n c 2 estimate to undergo a 33.9% change. In addition, Fig 5 shows that as hash space size increases, the interquartile range of the estimates decreases. For example, when n = 5 Á 10 3 and |O| = 2 Á 10 3 , Poisson degree distribution graphs with λ = 3 experience a interquartile range of 1522 in their n c 2 estimates . In comparison, when |O| = 256 Á 10 3 , the interquartile range for this family of graphs decreases to 793 . The magnitude of this effect increases as networks grow larger. For example for a network of size n = 40 Á 10 3 , increasing the hash space size from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 causes the interquartile range of the n c 2 estimate to undergo a 42.1% decrease. --- Evaluating n c 3 on synthetic networks A second set of experiments shows the performance of the n c 3 performance under identical hashing conditions used to test n c 2 . These experiments also follow the framework described in Section 4.2 and use samples derived from an RDS process operating as specified in Assumption 2. The hash space size was varied from |O| = 2 Á 10 3 to 256 Á 10 3 . The 12 graphs in Fig 6 present the performance of the n c 3 estimator as the true population size n is varied from 5 Á 10 3 to 40 Á 10 3 , the sample size is fixed to r = 500 and the hash space size was varied from |O| = 2 Á 10 3 to 256 Á 10 3 . In each of the 12 graphs, the x-axis varies the average degree λ from 3 to 10. For each choice of λ, the medians and quartile ranges of n c 3 are given for each of the 5 graph families. Each of these is determined by 900 simulations . Fig 6 shows that as hash space size increases, the medians of n c 3 converge to the true population size. For example, when n = 5 Á 10 3 and |O| = 2 Á 10 3 , Lognormal degree distribution graphs with λ = 3 have a median n c 3 value of 4667 . In comparison, when |O| = 256 Á 10 3 , the median for this family of graphs is 4865 . As the hash space size increases from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 , the error in the median estimate decreases by 4.0%. The magnitude of this phenomenon increases as networks grow larger. For example for a network of size n = 40 Á 10 3 , increasing the hash space size from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 causes the error in the median n c 3 estimate to undergo a 38.4% change. In addition, Fig 6 shows that as hash space size increases, the interquartile range of the estimates decreases. For example, when n = 5 Á 10 3 and |O| = 2 Á 10 3 , Exponential degree distribution graphs with λ = 3 experience a interquartile range of 1491 in their n c 3 estimates . In comparison, when |O| = 256 Á 10 3 , the interquartile range for this family of graphs decreases to 905 . The magnitude of this effect increases as networks grow larger. For example for a network of size n = 40 Á 10 3 , increasing the hash space size from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 causes the interquartile range of the n c 3 estimate to undergo a 43.0% decrease. --- Impacts of non-uniformity The experiments described in previous sections of this paper assumed an RDS process that begins with a set of seeds D V sampled uniformly at random without replacement. More precisely, D = X |D| is the last entry in sequence X 0 , X 1 , . . .X |D| , where X 0 = ; and for each u 2 V. While the uniform model allowed formal analysis of the estimators' properties to be tractable, many researchers have noted that practical deployments of RDS often exhibit bias in seed selection [90][91][92]. This bias originates in local features of the network topology as well as global properties . X i = X i-1 [ {u i } with Prðu i ¼ uÞ ¼ 1 jVj À jX iÀ 1 j u 2 VnX iÀ 1 0 otherwise 8 < :ð44Þ --- Degree-biased selection of RDS seeds We begin by describing experimental findings on the differential impacts of degree-based bias in initial seed selection on the performance of the n c 3 estimator. Towards this, we define a new model of seed selection in which a real-valued parameter r 2 R controls degree-based bias. In particular, expression for each u 2 V. Note that when ρ = 0 expression reduces to the uniform random selection of seeds prescribed in . When ρ > 0, seed selection is biased towards the network's high degree vertices; when ρ < 0, low degree vertices are favored. The first segment of Table 1 shows that as ρ is varied between -1 and +1, non-uniform seed selection has no discernable negative differential impact on the performance of RDS estimator 1 are based on 30 RDS samples on each of 30 graphs from Lðl ¼ 5; n ¼ 10 4 Þ, i.e. graphs with 10K nodes and a Lognormal degree distribution as described in Section 4.1, the conclusion for the other 5 graph families is similar. --- Community structures Next we consider the impact of community structures which can potentially create bottlenecks for RDS and restrict the reach of subject's self-reported ego networks [91,92]. We quantify the impacts of such structures on the n c 3 estimator through simulation experiments, and towards this, extend each of the 5 families defined in Section 4.1 to support the controlled presence of community effects. Two new parameters are introduced: the number of communities K, and the cross-community connection probability μ. The space Lðl; nÞ, for example, is thus extended to a space Lðl; n; K; mÞ consisting of graphs of size K Á bn/Kc, i.e. approximately n, which is sampled from as follows: 1. Sample K graphs G 1 = , . . .G k = from Lðl; nÞ as defined in Section 4.1. Define V ≔ S K i¼1 V i to be the vertex set of our sampled graph. Take E ¼ S K i¼1 E i to be our initial approximation of the edge set of our sampled graph, to be updated according to the rewiring process below. e. Modify E by adding and to E. 3. Completion of step yields the sampled graph on K Á bn/Kc vertices, having K communities each coming from family Lðl; nÞ and wired together so that roughly μ fraction of each community's members has a connection to some member of a different community . The families Pðl; n; K; mÞ; X ðl; n; K; mÞ; Bðl; n; K; mÞ, and Eðl; n; K; mÞ, are defined analogously. When μ * 1 or K * 1, community effects are insignificant. As μ ! 0 + or K ) 1, the population consists of many effectively isolated communities. Whenever a set of seeds are to be selected from the network , all seeds are chosen from community 1. The second segment of Table 1 shows that as K is increased from 1 to 16 , increasing the number of communities causes n c 3 to slightly underestimate population size. For example, when the network consists of K = 8 communities, a median estimate falls short of the true value by 7%; for K = 16 communities the deficit becomes 16%. The third and final segment of Table 1 shows that as μ is decreased from 0.5 to 0.1 , increasing community isolation causes n c 3 to significantly underestimate population size. For example, when the inter-community connection probability μ = 0.4 the deficit is 14%, but when μ = 0.2 the estimate produced is roughly 45% of the true value. While the data in the second and third segments of Table 1 are based on 30 trials on each of 30 graphs from Lðl; nÞ, i.e. graphs with Lognormal degree distribution as described in Section 4.1, the results for the other 5 graph families are quite similar. --- Non-uniform hash functions The experiments and analyses so far have considered a uniform random hashing function ψ, and have shown that the size of the hash space |O| has a significant impact on estimator variance. The uniform hashing assumption is reasonable when each individual's anonymity-preserving code is based on attributes that have been uniformly randomly assigned across the population. For example, it is reasonable to expect that a telephone company will assign numbers to customers randomly, and thus a code that is built from the parity and scale of the final 4 digits of each individual's phone number would constitute a uniform random hash function. In this section, we describe how to translate the conclusions of previous experiments and analyses to settings where the hashing function is not uniformly random. This would likely be the case if ψ were built from each individual's demographic characteristics that are known to vary non-uniformly across the population. For example, if subjects and reports were encoded using 4 categories for age, 3 categories for height, 3 for hair color, and 5 categories for race, one could only say that the hash space size was 4 × 3 × 3 × 5 = 180 if all combinations of these attributes were equally likely to appear. Researchers employing such non-uniform hashing functions may want to know the equivalent uniform hash space size |O|, so as to correctly translate the results of previous sections into reasonable expectations for the non-uniform situation at hand. The following Lemma will assist in defining this translation: Lemma 3. Let A, B be finite sets, and ψ: A ! B be a uniformly random function. Then EjcðAÞj ¼ jBj Á 1 À 1 À 1 jBj jAj " #: Proof. We seek the expected number of distinct items obtained in sampling |A| elements from B with replacement. Consider x 2 B, then Prðfx 2 cðAÞgÞ ¼ 1 À Prðfx = 2 cðAÞgÞ ¼ 1 À 1 À 1 jBj jAj : The result then follows by linearity of expectation. Proposition 4. Let A, B be finite sets, and ψ: A ! B a uniformly random function. Suppose |A| = x and |ψ| = y, where x, y ) 0, then the maximum likelihood estimator of |B| is given by jBj ¼ xy y Á WðÀ x y ðe À x y ÞÞ þ xð46Þ where Lambert's W function is the inverse function of f = We W . Proof. Applying Lemma 3, the maximum likelihood estimator is obtained by solving y ¼ jBj Á 1 À ð1 À 1 jBj Þ xð47Þ for |B|. Since |B| ! y ) 0, we may approximate log jBj À 1 jBj % À 1 jBj when |B| is large. Then we have 1 À 1 À 1 jBj x ¼ 1 À exp x log jBj À 1 jBj % 1 À exp À x jBj : Eq now becomes y ¼ jBj Á 1 À exp À x jBj ; which when solved for |B| yields expression above. Proposition 4 tells us that the image of a set of size x is expected to have size y, provided the function is a uniform random map into a set whose size is given by expression . Such a combinatorial result can be used to compute the equivalent uniform hash space size in settings where the hash function is non-uniform. In particular, if we have x = |A| subjects, who provide us with exactly y = |ψ| distinct codes , then the equivalent uniform hash space size |O| is given by expression above. --- Evaluating estimators on real networks While a range of degree distributions and randomly occurring clusterings can be expected in idealized topologies, the performance of RDS-based estimators n c 2 and n c 3 on organically arising, natural human networks may vary. To test this possibility, we perform a number of random-start, RDS-based estimation experiments on the Brightkite data set. Brightkite was once a location-based social networking service provider where users shared their locations by checking-in. The friendship network was collected using their public API, and consists of |V| = 58,228 nodes and |E| = 214,078 edges [93]. Though originally a directed graph, we symmetrized the edges for the purposes of these experiments. Since not all users made a public checkin during the data collection period, the population we used here consists of 51,406 people. The average clustering coefficient in the network was 0.1723, while the fraction of closed triangles is 0.03979. The diameter is 16, though the 90-percentile effective diameter is 6. For purposes of the experiment we generated 900 respondent-driven samples of size r = 250, 500, 750 and hash space size from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 within the Brightkite network, each obtained via an RDS process operating as specified in Assumption 2. The boxplot graphs in Fig 7-7 show that estimator n c 2 -where no accommodation is made for the tendency of RDS to oversample tightly clustered network neighborhoods-underestimates the true population size of 51,406 in every case. Given the high clustering coefficient of the network , it seems likely that, for a given sampling tree, the peer-discovery process necessarily walks across close pairs of nodes that shared one or more common vertices. Of note is that increasing the sample size and hash space size does little to correct for these effects. Graphs in Fig 7 present the boxplots of Brightkite population estimates using estimator n c 3 . As above, we generated 900 respondent-driven samples of size r = 250, 500, 750 and hash space size from |O| = 2 Á 10 3 to |O| = 256 Á 10 3 within the Brightkite network. We see that the three different hash space sizes show similar results, while increasing the sample size r from 250 to 500 and 750 improves the accuracy of the median estimate. Unlike the case in Fig 7-7, we don't see a consistent pattern of underestimation, indicating that the cross-seed estimator n c 3 was successful in compensating for the clustering found in the network. As above, the overall size of the hash space has minimal effect on the accuracy of the median estimate, but we note that an increase in the RDS sample size improves the accuracy of the median estimate and produces smaller interquartile ranges. --- Discussion The results shown here indicate that size estimates for hidden and hard-to-reach populations can be derived from RDS samples across a range of topologies, and in the presence of significant network clustering. As important, this is accomplished under conditions of anonymity by way of identity hashing, e.g. using telefunken codes [50] or a Privatized Network Sampling design [53]. The n c 3 estimator joins other successful, RDS-based population estimation procedures, such as those by Handcock and Gile [85], and Crawford, Wu, and Heimer [35]. Like Crawford et al, we make use of half-edge counts. However, our estimator invokes a different strategy-beginning with the original capture-recapture concept-and is shown to be robust across a wide range of topologies and assumptions. A notable feature of the n c 3 estimator is that a lower level of variance can be expected at conventional RDS sample sizes. For r = 500 to 750, interquartile ranges were low relative to both the median estimate and true population size . Additionally, when hashing was employed towards ensuring subject anonymity, sufficiently large hash spaces and samples sizes produced a narrow 2 which summarizes a slice of the data in Fig 6). Given concerns about RDS sample variance generally [28], these results indicate robustness against the faults of a single sample. Another consistent feature observed in these experiments is the performance of the n c 3 estimator as graph density increases . In terms of the interquartile ranges, the estimator exhibits worse performance in sparse as opposed to dense networks . Given the edge-sampling focus of our approach, this is not surprising. Fewer total edges suggest fewer total "matches" to discover, leading to greater variability depending on stochastic factors likely associated with the selection of RDS seeds and the random walk features of the RDS sampling process. These results suggest limits on the implementation of n c 3 estimator in sparse graphs. As researchers increasingly turn to RDS methods for sampling hard-to-reach populations, these results should be of considerable interest to those concerned with what is often referred to as "the denominator problem". Where agencies and government administrations seek to understand both the scope of public health challenges and to measure the effectiveness of their intervention and promotion efforts, the ability to estimate population size is widely needed. The results presented here indicate that "one step" methods are capable of providing such estimates. Along with the methods mentioned above, this work has the potential to provide public health officials and planners with means to more effectively promote the health of hidden populations-and thus the health of the larger populations in which they are embedded. --- Limitations In using uniform random samples to estimate population size, it is possible for the proposed n 1 estimator to "fail" if one finds that hMi = 0 in Definition 3. This happens with greater frequency as the sample size r shows the mean failure rate , for each choice of population size n , and uniform sample size r . We see from Fig 8 that the failure rate is non-linear in both r and n. For small uniform samples r = 250, the failure rate of n 1 is *0 when n = 10 Á 10 3 , but undergoes an inflection at n = 20 Á 10 3 , and rises to 3.9% when the population size again doubles to n = 40 Á 10 3 . Note that we considered each of 5 families Lðl; nÞ; Pðl; nÞ; X ðl; nÞ; Bðl; nÞ, and Eðl; nÞ defined in Section 4.1, and each λ = 3, 5, 10; from each of these 15 concrete sample spaces, we used configuration graph sampling to select 30 random graphs of size n. In each of these 5 × 3 × 30 = 450 graphs, we generated 30 uniform samples . In this manner, a total of 450 × 30 = 13,500 simulations were conducted. Similarly, in using respondent-driven sampling to estimate population size, it is possible for the proposed n 2 estimators to "fail" if one finds that hMi = 0 in Definition 4 i = 0 in Definition 9). Fig 8 shows the mean failure rate , for each choice of population size n , and RDS sample size r . RDS samples of size r = 250 exhibit an n 2 failure rate of *0 when n = 5 Á 10 3 , but undergo an inflection at n = 10 Á 10 3 ; the mean failure rate rises to 6% when the population size again doubles to n = 40 Á 10 3 . In examining the n 3 estimator, Fig 8 shows us that when it is used with RDS samples of size r = 250, it exhibits a failure rate of *0 when n = 5 Á 10 3 , but the failure rate undergoes an inflection at n = 10 Á 10 3 , rising to 8.8% when the population size again doubles to n = 40 Á 10 3 . For sample sizes that are 2X and 3X as large the inflection point is not yet reached at n = 40 Á 10 3 and mean failure rates remain below 0.1%. This indicates that our estimators based on RDS are more robust against failure than the n 1 uniform sampling estimator, and at typical RDS sample sizes , they are robust enough to be used in settings where the population size is expected to be on the order of n * 40 Á 10 3 . Fig 8-8 explore the impact of hash space size on the mean failure rate. Here we consider a fixed sample size r = 500 and vary the size of hash space |O| between 2 Á 10 3 and 256 Á 10 3 . We observe that the mean failure rates of n c 2 and n c 3 grow linearly as n increases, but that the rate of growth depends on |O|. In particular, when |O| is too small , the mean failure rate is seen to grow steeply, even for small networks. The two graphs make evident the tradeoff between subject anonymity/privacy and the failure rates of the estimator. When the hash space size is sufficiently large , failure rates remain low, but smaller hash spaces may produce greater instability in the estimators. Finally, the three heatmaps in Fig 8 show how the failure rate of n c 3 rises whenever the hash space size or sample size decreases. Although 32 Á 10 3 -256 Á 10 3 may appear to be a very large hash space size, we note 10 4 32 Á 10 3 10 5 256 Á 10 3 10 6 : Thus, asking research subjects for the last 5 or 6 digits of their own telephone number and those digits of their friends' phone numbers would be sufficient to provide an accurate estimate . In the event that research subjects remain reluctant to reveal precise digits of their own or their alter's phone numbers, a telefunken code could be constructed [50] or a Privatized Network Sampling design [53] employed. --- All Java software developed and used is available at https://github. com/grouptheory/telefunken-support/tree/master/ java. All R software developed and used is available at https://github.com/grouptheory/ telefunkensupport/tree/master/R-v1. All data inputs and outputs are available at https://github.com/ grouptheory/telefunken-support/tree/master/ figures_and_data. --- All data inputs and outputs are available at https://github.com/grouptheory/telefunkensupport/tree/master/figures_and_data. ---
Size estimation is particularly important for populations whose members experience disproportionate health issues or pose elevated health risks to the ambient social structures in which they are embedded. Efforts to derive size estimates are often frustrated when the population is hidden or hard-to-reach in ways that preclude conventional survey strategies, as is the case when social stigma is associated with group membership or when group members are involved in illegal activities. This paper extends prior research on the problem of network population size estimation, building on established survey/sampling methodologies commonly used with hard-to-reach groups. Three novel one-step, network-based population size estimators are presented, for use in the context of uniform random sampling, respondent-driven sampling, and when networks exhibit significant clustering effects. We give provably sufficient conditions for the consistency of these estimators in large configuration networks. Simulation experiments across a wide range of synthetic network topologies validate the performance of the estimators, which also perform well on a real-world locationbased social networking data set with significant clustering. Finally, the proposed schemes are extended to allow them to be used in settings where participant anonymity is required. Systematic experiments show favorable tradeoffs between anonymity guarantees and estimator performance. Taken together, we demonstrate that reasonable population size estimates are derived from anonymous respondent driven samples of 250-750 individuals, within ambient populations of 5,000-40,000. The method thus represents a novel and costeffective means for health planners and those agencies concerned with health and disease surveillance to estimate the size of hidden populations. We discuss limitations and future work in the concluding section.
Introduction HIV continues to be a major global public health issue, having claimed 40.4 million lives so far. In 2022, 630 000 people died from HIV-related causes globally. There were approximately 39.0 million people living with HIV at the end of 2022 with 1.3 million people becoming newly infected with HIV in 2022 globally [1]. In order to end the AIDS epidemic, the Joint United Nations Programme on HIV/AIDS has put forward the vision of "ending HIV infection by 2030", and China has also promulgated the "Thirteenth Five-Year Plan of Action for Containing and Preventing AIDS in China" and the "Implementation Plan for Containing the Spread of AIDS " [2][3][4]. With the discovery of epidemiological investigations, there is a significant phenomenon of psychological distress in people living with HIV/AIDS, especially the state of anxiety and depression [5]. Thus, it is essential to study the psychological characteristics of PLWHA. It was found that the prevalence of depression among PLWHA was 22-44% [6,7]. While the prevalence of anxiety is 19% [8]. These anxiety and depression problems can affect the effectiveness of antiretroviral therapy and adherence, and increase the transmission and spread of HIV [9]. Consequently, reducing the level of anxiety and depression in PLWHA has been the focus of many researchers. In these studies, it has been established that both psychological resilience and social support are strongly correlated with anxiety/depression, respectively [10][11][12]. In addition, more in-depth studies have shown that increased levels of social support and psychological resilience can reduce levels of anxiety/depression [13,14]. At the same time, we found that there is a wider range of studies examining the mental health of PLWHA, and few studies have covered the relationship between psychological resilience and social support with anxiety/ depression. We also did not find any similar studies that describe psychological resilience, social support and how they affect anxiety/depression in PLWHA. Therefore, we hope that this study will provide a more in-depth understanding of the psychological world of PLWHA and seek to understand the role and connection between psychological resilience and social support. To be able to provide evidence for a more refined study of the psychological world of PLWHA. --- Methods --- Study design and sample We are using a cross-sectional research methodology and surveying a specific hospital in Beijing, the capital city of China. In China, information about HIV-infected patients is uploaded to the database of the Chinese CDC, and only specific hospitals are able to receive these HIV-infected patients and administer tests or treatments to them. And it is very appropriate to collect research data in such a specific hospital. HIV/AIDS patients who attended the HIV outpatient clinic of a hospital in Beijing from January 2023 to August 2023 were selected for the study. Inclusion criteria: Including HIV positive reports; Includes normal cognition, understanding of the study and voluntary participation in cooperating to complete the questionnaire. Exclusion criteria: Including those with significant cognitive impairment or impaired consciousness who could not cooperate in completing the questionnaire; Those who did not want to cooperate in completing the questionnaire for personal reasons. --- Data collection A standardized-trained psychotherapist from the hospital outpatient clinic introduced the purpose of the study, the principle of confidentiality and related requirements to the patients, and instructed the patients to fill in the questionnaire on a one-to-one basis in strict accordance with standardized procedures. The questionnaire containing the General questionnaire, The Hospital Anxiety and Depression Scale, The psychological resilience scale and The Perceived social support scale was used to collect relevant information. The general questionnaire included demographic characteristics, such as age, education, income, number of sexual partners and occupation. The Hospital Anxiety and Depression Scale was used to measure patients' anxiety and depression levels. The scale contains 7 questions on the anxiety subscale and 7 questions on the depression subscale, for a total of 14 questions, with a score of 1-4 for each question, and a score of more than 8 for each subscale indicates an abnormality, with higher scores indicating a more pronounced abnormality [15]. The Cronbach's α coefficients of its total scale, anxiety subscale and depression subscale were 0.879, 0.806, 0.806 respectively, with good reliability and validity [16]. The psychological resilience scale was used to measure the level of psychological resilience of the patients. The scale contains 13 questions on the resilience subscale, 8 questions on the strength subscale, and 4 questions on the optimism subscale, for a total of 25 questions. Each question is scored 0-4, with higher scores indicating better psychological resilience. Its Cronbach's alpha coefficient was 0.91, with good reliability and validity [17]. The Perceived social support scale was used to measure the level of social support of patients. The scale contains 4 questions on the family subscale, 4 questions on the friends subscale, and 4 questions on the other subscales, for a total of 12 questions. Each topic is scored 1-7, with 12-36 being low support level, 37-60 being medium support level, and 61 or more being high support level. The Cronbach's alpha coefficients of its total scale, family subscale, friends subscale, and other subscales were 0.840, 0.818, 0.820, and 0.813, respectively, with good reliability and validity [18,19]. --- Statistical analysis Analyses were performed using SPSS 26.0 software. Measurements were expressed as , and t-test or one- way line ANOVA was used to test for differences between groups. Pearson correlation analysis was used to explore the correlation between the factors and anxiety and depression. Stratified linear regression analysis was used to validate the mediation model. The bootstrap method was used to test the mediating effect. P < 0.05 was used to indicate a statistically significant difference. --- Ethics This study complied with the World Medical Association's Declaration of Helsinki's Ethical Principles and Good Clinical Practice for medical research in humans and all applicable regulations.The clinical research protocol and informed consent form were both approved by the Ethics Committee of the Fifth Medical Centre, General Hospital of the Chinese PLA. The subjects recruited for the clinical trial voluntarily signed the informed consent form. . --- Results --- Study participant enrollment and characteristics The questionnaire was distributed to 170 HIV/AIDS patients, and 161 valid questionnaires were collected, with a recovery rate of 94.71%. The average score of the anxiety scale is 13.72 ± 4.10, and the average score of the depression scale is 15.99 ± 2.58 . --- Analysis of the correlation between psychological resilience, social support, and anxiety/depression The correlation analysis results indicate that anxiety is negatively correlated with psychological resilience and social support . Depression is also negatively correlated with psychological resilience and social support . --- Testing the mediation effect model Testing the hypothesis of the mediation effect model through layered regression A model with social support as the independent variable, psychological resilience as the mediator, and anxiety/depression as the dependent variable was developed . Stratified regression analyses were performed when anxiety and depression were the dependent variables, respectively, with control variables in the first stratum, social support as the independent variable in the second stratum, and mediator variables in the third stratum. The results showed that there was no multicollinearity with VIF>3. In anxiety/depression Eq. 2 , social support was a significant impediment to the level of anxiety/depression . With the addition of the mediator variable in anxiety/depression Eq. 3 , psychological resilience was a significant impediment to higher levels of anxiety/depression . The model hypotheses were valid and psychological resilience played a fully mediating role between social support factors and anxiety/depression . --- Testing for mediating effects via bootstrap The mediating effects were further tested using the bootstrap method, where the mediating effects model was tested using repeated random sampling 5000 times in the raw data. The results showed that the total effects of anxiety/depression were all significant, none of the direct effects were significant, and none of the confidence intervals for the indirect effects contained 0. Psychological resilience played a fully mediating role in social support factors and anxiety/depression, with an effect contribution of 68.42%/59.34% . --- Discussion Resilience refers to the act of coping, adapting, or thriving from adversity, and reflects a complex and dynamic interplay between individual, environmental, and sociocultural domain [20]. Social support is a social network consisting of three dimensions: family support, friend support, and other support [21].The level of social support reflects the extent to which an individual is linked to Fig. 1 The mediating effect model of psychological resilience between social support and anxiety or depression social relationships. The higher the level, the more closely the individual interacts in society [22]. The relationship between psychological resilience, social support, and anxiety/depression is very strong. From the results of this study to observe the relationship between these four factors, an increase in psychological resilience and social support can significantly reduce the level of anxiety/depression, respectively. This result is consistent with the findings of several international studies [23][24][25]. Among these studies, Leodoro J. Labrague et al. 's study and Zhi Ye et al. 's study, although introduced in both social support and psychological resilience can enhance mental health. However, the subjects were healthcare workers and university students, which is different from the target population of this study. While Aneela Hussain et al. 's study targeted the HIV-infected population and described the importance of social support for mental health. However, none of these studies reported, described the role of psychological resilience in the middle of social support and anxiety/depression. In the present study, we found that PLWHA who have better scores on psychological resilience and social support mean that they are better able to adapt to being HIV-infected and to survive in society or socialise as HIV-infected people. This adaptation to the environment reduces anxiety or depression due to discrimination or inconvenience of living with HIV infection [26,27]. In looking at PLWHA, Frank H. Galvan concluded that social support is not only an important factor in influencing mental health in addition to the stigma of HIV, but further found a strong relationship between the friend dimension and HIV stigmatization [28].Meanwhile, Cierra N. HOPKINS et al. confirmed the important relationship between psychological resilience and mental health [29]. The results of these two studies are also consistent with some of the results of this study. In further analysis, we constructed a model of the relationship between psychological resilience, social support, anxiety/depression. The results of the model revealed that social support can directly influence the level of anxiety as well as the level of depression in PLWHA. For a special group of HIV-infected people, the support of family and friends is extraordinarily important [30]. Especially the support of sexual peers. It can even be said that it can influence all aspects of PLWHA, such as how they deal with stigma, whether they take medication as required, and whether they engage in suicidal behaviour [31][32][33]. Therefore, based on the findings of the study, we suggest that the relevant authorities can pour more resources into family education and sexual peer education for PLWHA. We found that psychological resilience mediated the effect of social support on anxiety levels or depression levels. Not only can the level of social support directly influence the level of anxiety or depression in PLWHA, but it can also influence the level of anxiety or depression through the strength of psychological resilience. In addition, psychological resilience is an important protective factor for people with low levels of social support and can reduce the occurrence of anxiety and depression [34]. Thus, having good psychological resilience can reduce the occurrence of anxiety or depression at the same level of social support. This provides a strong support in terms of mental health education for PLWHA. --- Strengths and limitations The results of this study, innovatively confirm, the mediating role of psychological resilience. It also proves how social support and psychological resilience influence anxiety/depression levels in PLWHA. It will tell us a way to a further, more refined understanding of the mental world of PLWHA. Some limitations of this study that may affect our findings include the small sample size; the data collected may be biased. As the sample was only collected within a single hospital in Beijing, the generalisability of the results must be interpreted with caution. In addition, participant-reported data may have limited the results. Even though we took certain measures to maintain data integrity, it is still not possible to avoid participants' selfreported data being over-or under-reported. Finally, one of the more unfortunate aspects is the low number of factors for demographic characteristics. This could potentially lead to a number of influencing factors being undetected. --- Conclusion This study determined the relationship between psychological resilience, social support, anxiety/depression. Social support reduces levels of anxiety or depression in HIV-infected individuals, as does psychological resilience. In addition, psychological resilience is an important mediator between social support and anxiety or depression. Greater psychological resilience prevents the experience of anxiety or depression due to low levels of social support, and mental health work with PLWHA can be more beneficial if it is undertaken in the context of both social support and psychological resilience. Therefore, based on the results of this study, we recommend increased investment in psychotherapy. Mental health judgement, family and peer education by psychotherapists for PLWHA may be a good option [35][36][37]. articles. The work of Bing Song and Juan Cheng is to assist in promoting research implementation. Cheng Zhen and Chao Zhang's job is to participate in writing and translating articles. The work of Tianjun JIANG supervised the design, implementation, and writing of the entire study.All authors read and approved the final manuscript. --- Data Availability The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request. --- Author Contributions Yongbing Sun's job is to carry out the design of the entire study, promote the implementation of the study, analyze data, and obtain results, and write --- --- Competing interests The authors declare no competing interests. ---
Objective To understand the relationship between psychological resilience in social support and anxiety/depression in people living with HIV/AIDS and to verify whether there is a mediating effect. Methods The questionnaire was administered to 161 people living with HIV/AIDS in a hospital. The questionnaire contained a general questionnaire, the Hospital Anxiety and Depression Scale (HADS), the Psychological Resilience Inventory (CD-RICS), and the Social Collaborative Support Scale (PSSS), and Pearson correlation analyses were used to explore the correlation between the factors and anxiety/depression, stratified linear regression analyses were used to validate the mediation model, and the bootstrap method was used to test for mediating effects. Results Anxiety was negatively correlated with psychological resilience and social support (r=-0.232, P < 0.01; r=-0.293, P < 0.01); depression was negatively correlated with psychological resilience and social support (r=-0.382, P < 0.01; r=-0.482, P < 0.01); there was a mediation effect model of social support between psychological resilience and anxiety/depression; psychological resilience played a fully mediating role in social support and anxiety/depression, with an effect contribution of 68.42%/59.34% and a 95% CI(-0.256~-0.036)/(-0.341 to~-0.106). Conclusion Psychological resilience plays a complete mediating effect between social support and anxiety/depression. It is recommended that more channels of social support be provided to patients with HIV/AIDS, thereby enhancing their psychological resilience and reducing anxiety/depression levels.
Introduction Recently, discussions on surging population growth, migration, child and maternal health, infrastructural deficit, poverty, hunger, and malnutrition have generated increased concern amongst world leaders and international agencies [1]. The concentration of population growth in the poorest countries poses its challenges, making it more difficult to eliminate poverty and inequality, combat hunger and malnutrition, and expand educational and health systems, all of which are critical to the new sustainable development agenda's success [2]. Various international conferences on population and development, reproductive health in general, and family planning in particular, such as the 1974 World Population Conference in Bucharest; the 1981 International Conference on Family Planning in Jakarta, Indonesia; the 1984 Mexico and 1994 Cairo International Conferences on Population and Development ; and the various Millennium Summits have consistently argued for deliberate actions and set a pact on population control across the globe, primarily through family planning. The call makes great sense in the African context, looking at the fact that the continuous growth of its population has propelled unhealthy competition for the limited available resources and social amenities such as health systems, schools, clean water supply, houses, electricity, waste management, to mention but a few [3]. Therefore, the discourse on family planning has significantly advanced in the existing literature [4][5][6][7][8][9][10][11]. To domesticate the idea of modern family planning, the Nigerian government has enacted different policies and programmes over the years. For instance, in 1988, the federal government promulgated its maiden Reproductive Health Policy, promoting the idea of one husband, one wife, and four children. This was later reviewed in 2004, giving rise to a similar commitment. Given this, government, media experts, and reproductive health officials have spent so much time creating the necessary awareness and promoting the desired behavioural change needed for the smooth implementation of family planning policies across the country. The 2017 National Family Planning Communication Campaign, with the motto "family planning services; safe and trustworthy," aimed to reduce mother and newborn morbidity and mortality among Nigerian women of reproductive age by promoting understanding and usage of modern contraceptives [12]. The initiative sought "7.3 million additional women of reproductive age in Nigeria who declared they do not want to get pregnant now or ever again" to use a contemporary Family Planning technique by December 2018, resulting in a 36 percent Contraceptive Prevalence Rate . However, many years down the lane and after the expiration of the year 2018, there still seems to be a low level of acceptance of family planning in the country, thereby creating the need for investigation into the possible impediment to the actualisation of the national family planning communication objectives despite the intervention efforts [6,[13][14][15][16]. It is important to note that while only about 25.5% of women aged 15-49 years use any method of contraceptive and just 17.3% use modern contraceptives [12], the figure varies from region to region. Southern Nigeria tops the ranking with a prevalence rate of 36.8% in the southwest, 27.6% in the south-south and 18.7% in the southeast, compared to a prevalence rate of only 15.7% among women aged 15-49 years in the north-central part of the country where this study was conducted [12]. Within the north central, recent data suggest that Benue has a 17.1% modern contraceptive prevalence rate while Kogi has 18.3% which were slightly above the regional prevalent rate of 16.2% [12]. However, the same may not be said about Ogbadibo and Olamaboro Local Government Areas selected for this study from both states because of their similar conservative cultural practices and belief systems that set them apart from other Idomas and Igalas as well as other ethnic groups in both LGAs and states. The Idomas and Igalas in Ogbadibo and Olamaboro LGAs, respectively, have a unique and peculiar belief system that makes the use of modern contraceptives worth investigating. For instance, among these Idomas and Igalas, there is a belief that the use of modern contraceptives amounts to killing the unborn child. This belief is rooted in the teachings of their community deities called Alekwu and Ibegwu, respectively [17]. The principle of Alekwu and Ibegwu suggest that the killing of an unborn child through any means is an abomination that may attract the anger of their ancestors. To this end, the elders highly regulate the use of modern contraceptives. Although civilisation/westernisation has tremendously impacted the majority of African traditions and customs-the Idomas and Igalas inclusive, their belief system with regard to Alekwu/Ibegwu is an aspect that seems to be too powerful and consistent for any externally motivated repudiation or change that would be total. An earlier investigation into the constrained agency in adopting family planning suggests that they are often multi-faceted and society specific [8]. Nevertheless, scholarship is often bereft of data that capture the influence of the socio-cultural dynamics of the varying ethnic groups on family planning and the reception and adoption of campaign messages on modern contraceptives, particularly in Central Nigeria. Most family planning studies may not explicitly evaluate communication and or cultural aspect of the reproductive health issue as a significant variable. Still, scholars generally agree that the global realisation of the family planning target depends mainly on adequate communication and the promotion of a favourable cultural environment [18]. As a result of this implicit understanding, most family planning studies, especially in Africa, have made inferential extrapolations with behavioural change communication in mind. Such studies could be grouped into two major categories related to this current study. The first category includes research that primarily focused on the degree of recent contraceptive adoption and the agencies that influence that level of adoption. Indongo, for example, looked into the socioeconomic, demographic, and behavioural aspects that influence contraceptive use and method choice among young Namibian women, as well as measures to improve their access to health care and family planning services. The findings from the study implicitly demonstrate the need for communication and a re-evaluation of Namibia's cultural values to enhance the attitude of the family planning service providers and adult population towards women's use of contraceptives [19]. Similarly, Kiura investigated the constrained agency in family planning by evaluating the perceptions, attitudes and experiences of Somali refugee women on family planning [20]. Kiura's case study revealed low usage of contraceptives among the Somali women's population due to cultural and religious practices, misinformation, illiteracy, and counterproductive approaches toward reproductive health in general [20]. The socio-cultural practice of the people was also identified as a decisive factor influencing the use of modern contraceptives among Somali women as seen in Kiura's report [20]. This further lends credence to the assertion that cultural practice is a vital factor in family planning adoption in Africa and underpins the need for effective communication in achieving the desired family planning goals in the continent. Additionally, Ndirangu et al. investigated the socio-economic and cultural challenges to family planning practices in Muranga North District [18]. Low use of family planning was also reported in the study location as a result of socio-economic and cultural factors such as bias, prejudices, and misconceptions; the value placed on children; gender inequality in the decisionmaking process regarding FP issues; and decreasing order, poor attitudes toward FP among most members of the community. As a result, the authors recommended that family planning programs should be intensified across the board to achieve better results. Therefore, the crux of this current study is to fill the identified research gap by evaluating the peoples' level of exposure, knowledge, belief in Alekwu and Ibegwu, and other socio-cultural factors and their influence on the level of adoption of the 2017 National Family Planning Communication Campaign Messages. The following null hypothesis guided this study: there is no significant association between married people's exposure to the campaign message on modern contraceptives and their level of adoption of the campaign message; there is no significant association between the married people's level of knowledge and adoption of the campaign message on modern contraceptives in the study areas; there is no significant association between the people's belief in Alekwu/Ibegwu and their level of adoption of the campaign message on modern contraceptives in the study area; there is no significant association between socio-cultural factors and the people's level of adoption of the campaign message on modern contraceptives in the study area. --- Materials and Methods This paper used the survey research method as it enables the researcher to collect information from a representative sample of a target population and captures group dynamics among the various categories of respondents [21]. The research was conducted in Ogbadibo and Olamaboro both in North Central Nigeria, where Alekwu and Ibegwu traditional customs reign supreme, respectively. Using the Krejcie and Morgan sample size determination table, a sample size of 663 married men and women in Ogbadibo and Olamaboro LGAs of Benue and Kogi States, respectively, was selected for the study. The specific respondents for the survey were selected using multi-stage sampling techniques to ensure proper representation because the population was large and complex. The purposive sampling technique was used to select Ogbadibo and Olamaboro LGAs because of their potency and resourcefulness to the research interest as earlier explained. Additionally, purposive sampling was repeated to select all the six districts-Imane, Ogugu, Okpo , Owukpa, Otukpa, and Orokam -in the selected LGAs owing to their inclusive relevance, to broaden the scope and since they all fall within the LGAs of the researchers' interest. However, two wards were randomly selected to represent each district, making a total of 12 wards. Meanwhile, in each of the wards, the researcher purposively selected the most prominent village to administer the instrument because they may be more enlightened and exposed to family planning messages or have more health service providers who could provide reliable and usable data for the study. In each of the Villages, two streets emerged from a simple randomisation process involving all the major streets in each of the selected villages, which was considered for the choice of households where the questionnaire was purposively administered to only the married men and women since they fall within the 'legitimate' prescient of parenthood which is essential for a study of this nature. The quota sampling technique ensured that both genders were fairly represented in the sample. The questionnaire was distributed on a 55% to 45% basis in favour of women. This was to reflect the general demographic dynamics in the areas, as seen in the 2006 population census result that stipulated that women were slightly in the majority in the study areas. Meanwhile, within each street that emerged, a household consisting of one woman and one man that both satisfy the inclusive criteria of this research was sampled. This process was achieved using the Take-Pick Lottery Method of random sampling. YES or NO was written on pieces of paper and then appropriately folded, which were put in a container and thoroughly mixed at every stage of picking. A volunteer in the household would then pick on its behalf. If the volunteer picks a 'yes', then a qualified man/woman was sampled. In contrast, if a 'no' is picked, the researcher or his assistant moves on to the next household and repeats the same process. The following household was selected for replacement when there was a household that could not satisfy the inclusion criteria. If there is more than one qualified man and woman for selection, a simple random sampling was used to select the two respondents. This process was repeated until the required sample size was met based on the distribution quotas. Eligible responders were allowed to understand the study's goals and ask questions regarding the research and participants' rights for ethical consideration. Each responder participated in this study voluntarily and was allowed to withdraw at any time without incurring any penalties. To ensure that the information they provided could not be traced, respondents were not obliged to reveal their names or traceable identities. As a result, respondents' verbal agreement was gained. The research approach's validity and reliability were determined using the pre-test reliability method and Cronbach's alpha. Before the actual investigation, the results of the pilot poll suggested 85 percent validity. Statistical Package for Social Sciences was used to code the information gathered. The questionnaire was structured into five sections. The first section had eight questions that sought to know the respondents' demographic data: age, gender, marriage status, educational qualification, occupation, religion, duration of residence, and several children. The second section was made up of three questions that sought to establish the respondents' level of exposure to the family planning campaign messages. The third section consisted of a Linkert table that has thirteen items that sought to know their level of knowledge on modern family planning methods as promoted by the campaign. Meanwhile, section D which had three Likert tables that contained sixteen items was designed to elicit responses on the extent to which the respondents adopted the campaign messages. The last section which had two close-ended questions and three Likert tables sought to know how the Alekwu and Ibegwu cultural beliefs and practices enhance or impede on their level of reception and adoption of the 2017-2020 national family planning communication campaigns in the study areas. The data were analysed using descriptive statistics , ANOVA, and inferential statistics . All data obtained during the analysis were confidential and were used exclusively for this report. CHREC Protocol Assigned Number KSUTH/CMAC/ETHICAL/055/VOL.1/15 was obtained from the Kogi State University Teaching Hospital Research Ethical Committee for ethical consent. --- Presentation of Results A total of 663 respondents were sampled. Out of that, a total of 597 copies of the questionnaire were retrieved and found useable, whereas 66 copies of the questionnaire representing 10%, were not retrieved or were retrieved but wrongly filled and, as such was not included in the analysis. Therefore, this study's analysis, discussion and conclusion revolved around the 90% valid copies of the questionnaire. Table 1 shows the data generated on the respondents' demography and indicates that the majority of them were within their productive and sexually active age , 17% of them were at the brick of reproductive age and menopause , while only 35% of them were above 55 years when most women would have entered menopause. This suggests that the sampled age is the age at which the family planning campaign message was targeted. According to the table, both sexes were represented almost equally even though more females than males were sampled. This is because the researchers recorded more invalid or wrongly filled copies of the questionnaire among the female respondents than the male respondents. However, the difference was not significant enough to affect the result negatively. As seen in Table 1, the survey was dominated by: literate respondents ; artisans/traders and farmers ; Christians ; those who had resided in the study areas for 15 years or less ; still married and leaving together ; and those who had between 1-4 children . The various methods of modern contraceptives the respondents have been exposed to in the past two years were identified as seen in Table 2. The result showed that the respondents have majorly been exposed to only condoms, implants, and Intrauterine Contraceptive Device while only a few have been exposed to Oral Pill. Looking at the general categorization of the respondents as also seen in Table 2 above, however, the majority of the respondents have been exposed to messages on modern contraceptives in the last two years while only 44.9% of them have not been exposed to messages on modern family planning in the last two years. This therefore calls for increased awareness creation on the modern contraceptive methods the respondents have not been exposed to in the last two years. Table 3 illustrates the weighted mean score of respondents' sources of information on modern contraceptives and shows that the communication campaign has not achieved its aim of getting religious, community and traditional leaders to openly discuss family planning. It also suggests that the aim of getting spouses to discuss family planning in the selected local government areas in both states has not been fully achieved and neither has social media been adequately utilized to promote the knowledge of modern family planning in the study areas. The table showed that health workers or family planning service providers and the mass media were the dominant sources of information on modern contraceptives among the people. 4 below represents the weighted mean score and respondents' categorization by their knowledge of modern contraceptives, as promoted in the 2017-2020 family planning campaign. The tables showed that knowledge of modern family planning in the study areas was high, but not significant enough to achieve the target of one of the campaign goals. This means that knowledge of modern family planning in the study areas was below the 85.8% national family planning knowledge threshold and far below the expected 95% target of the 2017-2020 national family planning communication campaign goal. This implies that the campaign's objective of 'increased' knowledge was not achieved. The absence of basic information/knowledge in the study areas such as the 'Green Dot' logo signalling Family Planning services sites and Family Planning services and commodities being free in all public health facilities, etc., strongly suggests the campaign did not establish/achieve the desired effect, at least, on the studied locations. Table 5 illustrates the percentage distribution and mean score on actions taken by the respondents as a result of their exposure to family planning campaigns as well as their categorization based on the actions taken. According to the tables, none of the actions expected of the respondents, as seen in the 2017-2020 national family planning campaign has been adopted. This means poor adoption of the family planning campaigns in the study areas. Table 6 contains frequency and percentage distribution/weighted mean score of respondents' responses on the influence of Alekwu/Ibegwu on the adoption of modern family planning as well as their categorization. According to the data in Table 6b, most of the respondents believed that Alekwu/Ibegwu did not support the adoption of modern family planning. This suggests a negative influence of Alekwu/Ibegwu on the adoption of the 2017-2020 family planning campaign and calls for greater behavioural change communication. Table 7 below represents the frequency and percentage distribution/weighted mean score of respondents' responses on socio-cultural constraints to their adoption of modern family planning campaign as well as their categorization based on their socio-cultural constraints to the adoption of modern family planning campaigns. According to the data in Table 7 the majority of the respondents were not constrained while only 47.6% were constrained. However, frequency/percentage and mean analysis, as seen in Table 6a suggests that the respondent were constrained by Alekwu/Ibegwu as 50.3% of them affirmed that the use of modern contraceptives will make married people incur the wrath of Alekwu/Ibegwu . Nevertheless, looking at the percentage of the respondents who were still constrained by the aforementioned factors, there is still a need to make modern contraceptives more readily affordable to the 40.4% of the respondents; design more comfortable modern contraceptives for 37.9% of them; establish more modern family planning service points to attend to the 37.45% of them who said none was close to them; intensify awareness campaign to correct the wrong impression among the 31.8% of the respondents that modern contraceptives could make them go barren as well as the 29.6% of them who did not have the necessary information on modern contraceptives to enable them to decide to use it or not. As seen in Table 8 below, the null hypothesis that 'there is no significant association between married people's exposure to the campaign message and their level of adoption of the campaign message on modern contraceptives' was rejected at 0.01 level of significance, meaning 'there is a positive and significant association between married people's exposure to the campaign message and their level of adoption of the campaign message on modern contraceptives. This implies that the more people get exposed to information on modern family planning, the more they adopt the content of the message. Additionally, according to Table 8 above, the null hypothesis, which says that: 'There is no significant association between the married people's level of knowledge and adoption of the campaign message on modern contraceptives in the study areas' was rejected at 0.01 level of significance as the test result indicates that there is a positive and significant association between the married people's level of knowledge and adoption of the campaign message on modern contraceptives in the study areas. This suggests that the more people become knowledgeable on modern contraceptives, the more they adopt the family planning campaign messages on modern family planning and verse versa. Lastly, according to the correlation analysis, as seen in Table 8 above, the null hypothesis states that: 'There is no significant association between the people's belief in Alekwu/Ibegwu and their level of adoption of the campaign message on modern contraceptives in the study area' was rejected while. In contrast, the alternate hypothesis that: 'There was a significant association between the people's belief in Alekwu/Ibegwu and their level of adoption of the campaign message on modern contraceptives in the study area' was upheld. This shows that the more the people believe in Alegwu/Ibegwu, the less they will adopt the campaign message on modern contraceptives. As presented in Table 9, the coefficient of multiple determination of 0.55 was recorded; indicating that 55% variation in the adoption of modern contraceptive technologies in the study area is explained by the explanatory variables. According to the table, age , belief in the existence of Alekwu/Ibewu , and fear of Alekwu/Ibegwu punishment on offenders have a negative and significant relationship with the adoption of the 2017-2020 family planning communication campaign messages in the study area; while marital status , spousal interaction and information seeking behaviour have a positive and significant relationship. --- Discussion of Findings The data analysed in this study were obtained from primary sources using the questionnaire. Exposure and knowledge of family planning, as well as the adoption of information on family planning, was generally low among the majority of the study population, just like in other climes in Africa, as reported by earlier research evidence [20]. Specifically, however, more people have been exposed to information on condoms, implants, and Intrauterine Contraceptive Devices within the last two years preceding this survey through Health workers or family planning service providers; Mass media ; and Friends, relatives and community members in that order. Findings also show that most people in the study areas were not exposed to information on Oral pills, Vasectomy , Tubal ligation , and Injection. In the same way, religious, community and traditional leaders, spouses and social media such as Facebook, WhatsApp, 2Go, Twitter, Instagram, etc., were not familiar sources of information on modern family planning to most people. That most people were exposed to information on family planning through the mass media supports the earlier findings in other climes, as documented by [22][23][24]. According to [22], 71% of the respondents had exposure to family planning messages in the media within the three preceding their survey. The popularity of the mass media as a source of information on family planning, as seen in the current study, may stem from the non-personal nature of mass media, especially since most men in the study areas found it more or less a taboo to discuss family planning with their spouses, or even the health officers and religious bodies such as the churches were indirectly prevented from discussing it openly as it was against their cultural beliefs. However, this finding negates other findings by [25][26][27][28], where women were the dominant subject of study. According to them, even though channels of communication like broadcast media, print media, and interpersonal communication were used to promote family planning in the areas, interpersonal communication channels were more popular among women. However, since exposure and knowledge were reported to have a positive relationship with the adoption of family planning among the select ethnic groups in Nigeria, there is a need to increase awareness campaigns on family planning using the popular media. The study also showed that the people's socio-cultural characteristics, such as age, sex, religion, occupation, and education level positively influence the adoption of the 2017-2020 family planning communication campaign messages in the study area. This finding supports [13] submission that the region of residence, gender, and socio-economic status of the population were significant predictors of contraceptive use in the country. We equally reported that the people's cultural beliefs and practices were constrained agency to the adoption of family planning in the study area as the more the belief in Alegwu/Ibegwu, the less the adoption of family planning in the study areas. That culture was a solid barrier to adopting the 2017-2020 national family planning communication campaign messages among the study population upheld earlier findings [16,[18][19][20]23,29,30]. They also reported that culture stands out very prominently among the inhibiting factors in adopting family planning in other climes in Africa. Ndirangu et al. report poor adoption of family planning within the study location because of socio-economic and cultural factors such as bias, prejudices, and misconceptions; value attached to children; gender inequality in the decision-making process regarding FP issues; and poor attitudes regarding FP amongst most members of the community, in decreasing order [18,31,32]. They also opine that adults in Namibia and even the family planning health service providers ironically demonstrated a negative attitude towards young women's use of contraceptives, which is a reflection of popular African cultural belief of the supposed sexual inactivity of single women in the continent. The cultural practice of the people was also identified as a decisive factor that influenced the use of modern contraceptives among Somali women, as seen in [20,33]. --- Conclusions The use of modern contraceptives is often a function of the receptibility and adaptability of family planning promotional messages, as seen in the 2017-2020 national family planning communication campaign. However, research has shown how such messages are received and adopted as a function of several factors, including the level of exposure and cultural practices and beliefs. This means a society with a seemingly anti-family planning culture stood a greater risk of non-adoption of family planning campaign messages despite the proven benefits of FP. The study revealed that the 2017-2020 national family planning communication campaign failed among Idoma and Igala ethnic groups in Ogbadibo and Olamaboro LGAs in Benue and Kogi states, respectively, due to their age barrier, belief in the existence of Alekwu/Ibewu, and fear of Alekwu/Ibegwu punishment on offenders. The study concludes that family planning will be accepted among the people only when their ways of life have been significantly altered in favour of the idea and calls for a more excellent state and community-specific educational programme that could help dispel the existing cultural beliefs and practices. --- Data Availability Statement: Data for this study would be readily available through an email request to the corresponding author: [email protected]. --- Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. ---
This study evaluated the extent to which married Idoma (Benue State) and Igala people (Kogi State) in North-Central Nigeria were exposed to the 2017 National Family Planning Communication Campaigns. The study also examined their level of knowledge, the extent to which they adopted the campaign messages, and how Alekwu/Ibegwu and other socio-cultural factors influenced their level of adoption of the campaign messages. The study adopted a quantitative (questionnaire survey) research method. The data were subjected to a descriptive analysis, correlation, ANOVA, Pearson Product Movement Correlation (PPMC), and Binary Logistics Regression. The findings showed that the majority of the people were exposed to information on condoms, implants, and Intrauterine Contraceptive Devices (IUCDs) (Cuppar T) in the course of the campaign; however, most of them were not exposed to information on Oral Pills, Vasectomies, Tubal ligation and Injections. Findings also revealed that knowledge of modern family planning in the study areas (51.2%) was below the 85.8% national family planning knowledge threshold and far below the expected 95% target of the 2017-2020 family planning communication campaign goal. Findings equally showed poor adoption of the campaign messages due to their cultural beliefs. The study concluded that family planning was often accepted among people whose ways of life have been significantly altered in favour of the idea.
Introduction Chronic kidney disease , a condition frequently attributed to uncontrolled diabetes and hypertension, has become an economic and public health burden both globally and locally [1][2][3] . The prevalence of CKD, particularly the early stages, has grown 40% over the past decade, with the disease now affecting 13.8-15.8% of the general population 3 . Untreated or poorly managed CKD can lead to numerous health problems, particularly cardiovascular disease and kidney failure, also known as end-stage kidney disease , requiring treatment with dialysis or a kidney transplant for survival. African-Americans are four times more likely to progress to ESKD than are their Caucasian counterparts and are more likely to develop kidney failure due to uncontrolled high blood pressure 3 . Kidney disease is the tenth most common cause of death in North Carolina. National CKD incidence and prevalence rates have increased steadily between 1994 and 2005 and have been higher in North Carolina when compared with the national average. It has been estimated that over 26 million Americans and 900 000 North Carolinians are currently living with early CKD 4 . Early identification of and treatment for CKD can be crucial to maintaining a person's quality of life and keeping health costs low. Late referrals have been shown to be associated with increased mortality and decreased access to renal transplantation, even among those who survive their first year on dialysis [5][6][7][8][9] . Early identification of and intervention for CKD can also lead to better management of diabetes and hypertension, the two main risk factors for CKD 10 . However, public awareness of CKD and its associated risk factors is low, in both the general population and in populations already diagnosed with the disease [11][12][13][14] . Focus groups provide a mechanism to gather information from individuals in high risk communities with regard to CKD awareness, as well as general issues relating to access and barriers to health care. An understanding of these issues in a community is needed in order to design effective awareness and education programs. Individuals at high risk for kidney disease include African Americans and the elderly, particularly those in low income communities with limited education. Therefore, understanding these issues in the context of the social structure of each community is critical. In 2005, the University of North Carolina Kidney Center implemented the Kidney Education Outreach Program , a comprehensive, community and evidence based initiative to raise at-risk North Carolinians' awareness about the primary risk factors for kidney disease and the importance of early diagnosis and intervention as strategies to stop CKD or slow its progression to ESKD. Using 3 principles derived from a compilation of work on the science of how people learn, the KEOP is designed to promote learning with understanding 15 . The 3 principles and the associated KEOP program components are: assess preconceptions with communitybased focus groups to assess at-risk citizens' ideas about CKD and access to health care; deliver new information in formats that promote active learning by providing interactive information sessions that are augmented with a media campaign that uses local citizens as spokespersons; and provide opportunities for meta-cognition with free CKD screenings that include one-on-one conversations about findings and written summaries of test results with recommendations for subsequent action. This article explores themes from conversations about kidney disease, health screenings, and barriers to care from 17 focus groups conducted across 5 rural, North Carolina counties with high rates of ESKD, through the UNC Kidney Center's KEOP. --- Methods --- Study sample Seventeen focus groups with a total of 201 citizens were conducted in 5 North Carolina counties between March 2005 and October 2007. A summary of the counties and type, size and racial makeup of the focus groups is shown . Twelve focus groups were conducted with citizen or church groups, three with allied health professional students attending local community colleges, one with health care/social service professionals, and one with family members of dialysis patients. The focus groups were organized by the UNC KEOP and lay partners in each county. Purposive sampling was used to recruit community members who were at greater risk for developing kidney disease or who may have an impact on the health and wellbeing of their communities . Five focus groups took place at senior citizens' centers to increase the recruitment of older participants and 6 groups were conducted at African-American churches to ensure a high level of recruitment for that population. Recruitment was through collaboration with community liaisons. These community liaisons helped recruit participants through public announcements, phone calls, posters, and word-of-mouth. Participants received a $20 gift card for their participation. Approval by the UNC Institutional Review Board was obtained prior to implementation of the study. --- Design A scripted discussion guide was pilot tested with a group of colleagues and with church parishioners in a non-priority county. Each focus group session lasted between 45-60 min, was audiotaped and transcribed verbatim and co-moderated by two members of the research team. Topics for discussion were divided into 5 areas: knowledge about kidneys, risk factors for CKD, and kidney failure: thoughts on kidney disease/kidney problems; barriers to health care; prior experience with the healthcare system and providers; and preferences for health screening locations and modalities for CKD education. --- Analysis Individual recordings were transcribed and uploaded into ATLAS.ti software for coding, organization and qualitative data interpretation. This research utilized a grounded theory approach to analyze focus group data, a qualitative method that allows the data to 'speak for itself'. In this way common topics emerge naturally from the data, rather than relying on testing a priori hypotheses 16 . Grounded theory uses open coding followed by axial coding, which seeks to explore categories created through the open coding process. A 'base coder list' was devised after reviewing open coding on 2 transcripts by 3 different investigators to increase inter-rater reliability. Additional codes were added to the base list as the analysis of additional focus groups continued. Once coded, transcripts were categorized into sections based on the 5 core questions . Sub-themes emerged in each section based on ongoing review and axial coding. Codes present in 5 or more groups per section were investigated by pulling those codes from the overall transcript and looking at codes that co-occurred within each theme section and compared codes across different types of focus groups, although there were not significant differences noted. The authors were satisfied that they had reached saturation and did not feel the need to conduct further focus groups. Quotes that are representative of themes are provided in the results, with editing to increase readability and assure confidentiality. --- Results Of the 201 participants, 74% were African-American, 96.5% knew someone with diabetes or hypertension, and 76% of groups contained at least one participant with a family member or friend diagnosed with end-stage kidney disease . General focus group racial demographics are provided . Age and other socio-demographic information were not recorded. Main themes extracted from focus group responses are summarized . --- Understanding what kidneys do and the importance of maintaining kidney function When asked what they knew about kidneys, participants in several groups stated that there were issues with the back such as backaches. Participants in 8 focus groups understood that the kidneys acted as filters, and participants in 12 groups mentioned water or fluid: holding water as a risk factor for kidney disease or using water as a protective factor against kidney damage. Statements included: You can't get your water out and it makes you real sick. --- I think of frequent bathroom [visits]. A urination problem, it may not be normal, might be frequent. Participants frequently noted that the kidneys clean the blood, kidney disease can be caused by 'thin blood', and blood filtering is needed by the kidney. One participant stated: If you drink too much or and if you eat too much of certain foods, something about the blood itself, some people have thin blood and that will cause your kidney problems. Knowledge and importance of kidneys, kidney disease • Participants in the majority of groups were aware that kidneys acted as filters and mechanisms to cleanse the blood, and stated that alcohol, soda, obesity, diet, and urination problems were the greatest risk factors for developing chronic kidney disease . --- • Participants consistently mentioned that symptoms of CKD and risk factors for CKD were the most important things for them to know. --- • Participants with friends/family members on dialysis saw it as a negative process and expressed the need for more public awareness and education. Barriers to health care • The ability to afford health services, medicine, and insurance were seen as the biggest barriers to receiving general health care in the communities studied. --- • Lack of transportation and limited availability of local, specialty care were also mentioned as barriers. --- • Communication with physicians was mentioned in 100% of groups as a barrier to receiving and understanding health information, and participants explained that in many instances they did not understand what to ask their physician about their general health. Input on community outreach • 'Using television' and 'word of mouth' were mentioned most often as the best tools for outreach and education. • Wal-Mart and community churches were most commonly mentioned as potential places for screenings. Obesity, drinking sodas, and diet were also mentioned as factors attributed to kidney disease: I think that some of the people that I have come in contact with, their eating habits are very, you know, you eat a lot of pork, different things, just eating anything that come along…and then the blood pressure. --- Thoughts on kidney disease/kidney problems In every group, dialysis was mentioned as something participants thought about when they heard the term kidney --- Experiences with the healthcare system The quality of communication with physicians was a key aspect of participants' concern about health care and their ability to navigate the healthcare system. It was common for groups to express that not knowing what to ask their physician was a barrier to receiving good medical care. For example, one participant stated: I think when we go to the doctor they don't tell you enough, if you don't ask specific questions which most of the time we won't know what questions to ask, they don't tell you. Another pointed out that: I've always gone to the doctor and I've never asked about my blood sugar. I'm just assuming it must be fine if he never said anything. The issue of pride was also brought up as a reason why community members may not ask questions, even if they do know what to ask. Participants explained: --- Sometimes it's a bit scary [going to] the doctor and [you] don't want to seem ignorant asking all these questions, or he'll explain it to you and then you won't understand it anyway because it's in Greek, right? The [doctor] tells you a lot of things and uses a lot of big words that you don't understand, and not wanting to seem uneducated we just nod and say okay like we understand and really we don't. Individual experiences with physicians were variable, but the overriding perception of physicians by focus group participants was that they do not have the time or resources to deal with inquiring minds and complex situations. --- Community input on screenings and health outreach --- Discussion This study illustrated that while community members are somewhat knowledgeable about how the kidneys work and have personal experiences with kidney disease, many do not understand risk factors and treatment options. Barriers to health care included poor communication with physicians and lack of access to specialty care, and community members described several outlets for marketing and distribution of health screenings and health information. The use of focus groups was found to be an effective way to better understand perceptions of kidney disease, barriers to health care, and preferences for health education and screenings in high-risk, rural North Carolina communities. However, the use of purposive focus groups and qualitative data decreases the generalizability of these findings. Selective sampling was used to target high-risk participants for focus groups, which further limits generalizabilty to the general population. Group dynamics or participants uncomfortable speaking in groups may have also influenced participation rates within focus groups. With respect to knowledge of kidney disease, focus group participants demonstrated some awareness about kidney disease and kidney failure but their knowledge about risk factors was poor. Those participants who did have knowledge about the disease had usually learned it secondhand from family members or friends afflicted with ESKD. Most participants were not aware that hypertension, diabetes, and family history of kidney disease are the primary risk factors for developing CKD. This low awareness has also been seen in larger cohort studies with at-risk populations 11,13,14 . Participants' responses identified television and radio as the preferred media for receiving general health information and for learning about screening opportunities. Using television and radio lessen the need to travel and help expand outreach about what kinds of questions to ask and how to advocate for one's self in a doctor's office may help remove some of the power differential between patients and providers. --- Conclusion Targeted, community-based focus groups are an effective way for public health educators to begin to assess a community's knowledge about a chronic health problem as well as to determine a community's preferences for ways to learn more about that particular condition. Future research efforts should measure the effectiveness and scope of community tailored health education programs for kidney disease and further explore preferences regarding the effectiveness of media messages versus delivery of factual health information.
Introduction: Chronic kidney disease (CKD) and its progression to end-stage kidney disease (ESKD), requiring lifelong dialysis or kidney transplant, has become a public health epidemic and a financial burden on healthcare systems. The lack of available and appropriately targeted kidney disease education may account for the low awareness of kidney disease, especially among high risk populations. This low awareness can lead to late detection of CKD and an increased likelihood of progression to ESKD. This study utilized focus groups to assess community perceptions of kidney disease, barriers to health care, and educational interventions. Methods: Seventeen focus groups were conducted with 201 participants in 5 rural North Carolina counties to assess perceptions of kidney disease, barriers to health care and strategies for raising awareness. Qualitative data analysis was performed based on a grounded theory approach. Results: Of the 201 participants, 74% were African-American, 96% knew someone with diabetes or hypertension, and 76% of groups contained at least one participant with a family member or friend diagnosed with ESKD. Participants were aware that kidneys acted as filters and mechanisms to cleanse the blood, and stated that alcohol, soda, obesity, diet, and urination problems were risk factors for developing CKD. Participants consistently mentioned that symptoms and risk factors for CKD were key pieces of knowledge. Affordability of health services, medicine, and insurance was seen as the biggest barrier to health care in the communities studied; knowing how to better communicate with physicians was also important. Television and word-of-mouth were mentioned most often as the best tools for outreach and education. Wal-Mart (a chain of large, discount department and grocery stores) and community churches were most commonly mentioned as potential places for screenings.
Background Since the World Report on Disability was announced by the World Health Organization in 2011, the importance of the right to health for persons with disabilities has risen worldwide [1]. The priority task in the health field for people living with disabilities is to strengthen preventive medical care to promote health with an emphasis on the role of health checkups. Health checkups refer to medical screening programmes such as counselling, physical examinations, laboratory tests, and radiologic examinations to improve an individual's health through early detection of risk factors and diseases and enabling early treatment [2,3]. In addition, the government can reduce overall healthcare costs through health checkup programmes [4]. However, the participation rate in health checkups of people with disabilities is still lower than that of the general population [5][6][7]. Stroke is one of the leading causes of death and acquired long-term disability in older people [8,9]. Although the age-adjusted mortality owing to stroke has decreased over the past few decades, the prevalence of stroke is increasing annually as the older population increases [10]. Furthermore, the life expectancy of stroke survivors, even with minor ischaemic stroke, is still significantly lower than that of the general population [11]. Stroke survivors have physical, social, and mental impairments and disabilities as secondary conditions owing to the disease, which adversely affect overall health after stroke [12]. In Korea, the age-standardised prevalence of stroke is 1.37%, and one-third of non-hospitalised stroke survivors have disabilities [13,14]. Therefore, it is essential to continuously check the health status of stroke survivors to manage the sequelae properly, prevent stroke recurrence, and enable stroke survivors to live with a minimal disability even though they have an impairment. The factors known to be related to the lower health checkup participation rate of people living with disabilities are a younger age , a middle-low level of income, no existing spouse, no chronic diseases, very bad subjective health condition, and more dependent level of activities of daily living [7]. Similarly, in the general older population, although regional differences exist, the major factors associated with higher health checkup compliance are a shorter period of education, no smoking, higher physical activity, better eating habits, better self-rated health, and better ADL [15]. However, there is currently no knowledge of the factors associated with health checkup engagement among community-dwelling stroke survivors. To increase the health checkup engagement of stroke survivors, who account for a large portion of the people living with disabilities, it is indispensable to understand the factors affecting health checkup participation; however, studies on this issue are still lacking. In this study, we determined the sociodemographic and health-related factors associated with health checkup participation in community-dwelling middle-aged and older stroke survivors aged ≥ 50 years. --- Methods --- Study design and participants The current cross-sectional study utilised the data from the Korea National Health and Nutrition Examination Survey VI and VII , operated by the Korea Centers for Disease Control and Prevention . KNHANES applies a stratified, multistage, clustered probability sampling survey to collect nationally representative data on clinical information, health-related behaviours, and nutrition. KNHANES provides sampling weights computed by processing design weights, non-response adjustment, poststratification, and trimming extreme weights. Detailed descriptions of the design and variables of KNHANES have been presented earlier [16,17]. People who answered 'yes' to the question 'Have you ever been diagnosed with stroke by a doctor'? were regarded as 'stroke survivors' [18]. Among the participants between 2014 and 2018 , 642 stroke survivors who were aged ≥ 50 years and completed health interviews and examinations were included. The Institutional Review Board at the KCDC approved the protocol, and all participants signed informed consent forms. Since we analysed publicly accessible data, the Institutional Review Board of our hospital exempted this study from ethical approval. --- Variables 'Health checkup participants' were defined as those who responded 'yes' to the question 'Have you had a checkup for your health in the past two years?' The individuals who answered 'no' to the abovementioned question were categorised as 'health checkup non-participants' . Any type of health checkup was included such as private comprehensive health checkups, workplace special health checkups, National Health Insurance general health checkups, and other free health checkups. Education level , household income quartiles , type of health insurance , and smoking habits . According to the answer to the question 'How many people live together in your house?' , participants were classified as 'living alone' or 'living together with cohabitants' . Participants were classified as employed or unemployed by the answer to the question, 'Have you worked for more than one hour for income or worked as an unpaid family worker for more than 18 hours in the last week?' Perceived health condition was recorded by the question, 'How do you feel about your health at ordinary times?' Excessive alcohol consumption was defined as > 20 g/day for men and > 10 g/day for women [19]. Individuals with disabilities were defined as those who responded 'yes' to the question ' Are your daily or social activities limited owing to health problems or physical or mental disabilities'? [14]. Physical activity was evaluated by the Korean version of the WHO Global Physical Activity Questionnaire, which assesses aerobic activities by collecting the time spent during a typical week [20,21]. WHO Global recommendations on physical activity for health defines sufficient weekly physical activity level as follows: ≥ 150 min of moderate-intensity activity or ≥ 75 min of vigorousintensity activity or an equivalent combination of moderate-and vigorous-intensity activity [18,22]. Participants' health-related quality of life was evaluated by the Korean version of the EuroQol 5-Dimension Questionnaire [23,24]. The EQ-5D is a measure to assess health status in five dimensions with three severity levels in each dimension. The number of chronic diseases related to vascular risk factors for stroke including hypertension, diabetes, and hypercholesterolemia was calculated [25]. Individuals with systolic blood pressure ≥ 140 mmHg or diastolic blood pressure ≥ 90 mmHg or those taking antihypertensive drugs were regarded as having hypertension. The people with fasting blood glucose ≥ 126 mg/dL or HbA1c ≥ 6.5%, or those diagnosed with diabetes by a doctor or treated with hypoglycaemic drugs or insulin were considered to have diabetes. The presence of hypercholesterolemia was determined by total cholesterol ≥ 240 mg/ dL or by taking cholesterol-lowering drugs. Obesity was defined as body mass index ≥ 25.0 kg/m 2 in accordance with the WHO's guidelines for the Asia-Pacific region [26]. --- Statistical analysis Participants' characteristics were analysed by complexsample descriptive statistics. The association of sociodemographic variables, health-related factors, and EQ-5D levels with health checkup participation was evaluated by complex-sample chi-square tests. The categorical data are presented as weighted percentages . Multivariable complex-sample logistic regression analyses were used to explore the association between multiple variables and health checkup participation. The results of logistic regression analyses are presented as odds ratios and 95% confidence intervals . To reflect the entire South Korean population, sampling weights provided by KNHANES were applied in all statistical analyses. Complex-sample procedures of SPSS version 24 were used. Ps < 0.05 were deemed significant. --- Results The health-related factors and sociodemographic characteristics of 642 stroke survivors are shown in Table 1. The weighted mean age was 68.1 years . Nearly two-thirds of the community-dwelling stroke survivors received a health checkup in the past two years. One-third of stroke survivors participated in sufficient physical activity. Two-thirds of stroke survivors reported no disabilities. However, half of the stroke survivors reported their perceived health as bad. Two-fifths were obese . --- Factors associated with health checkup participation The associations of sociodemographic and health-related factors and health checkup engagement are shown in Table 1. Among sociodemographic factors, health checkup non-participants had significantly higher percentages of lower education , Medical Aid , living alone , and unemployed than health checkup participants. Among health-related factors, health checkup nonparticipants showed significantly higher percentages of current smoking , insufficient physical activity , disabilities , and bad perceived health than health checkup participants. In addition, there was no association of health checkup rate with age, sex, income, obesity, alcohol drinking, or the number of chronic diseases. Table 2 shows the unadjusted and adjusted correlates of health checkup participation among community-dwelling stroke survivors. Lower education level , Medical Aid , living alone , unemployed status , current smoking , insufficient physical activity , and disabilities were significantly associated with health checkup participation. The significant associations of education level, living alone, occupational status, smoking habits, physical activity, and health checkup participation remained significant after adjusting for multiple confounders. Stroke survivors with lower education were less likely to receive health checkups than those with higher education . Participants living alone or unemployed showed independent lower compliance to health checkups than those living with cohabitants or employed. Stroke survivors who did not participate in sufficient physical activity showed a tendency not to receive health checkups . Participants who were currently smoking had significantly fewer health checkups than those who had quit smoking . --- Association between health-related quality of life and health checkup participation The proportion of stroke survivors who reported no problems in each dimension of the EQ-5D were 51.2% , 74.2% , 61.5% , 51.4% , and 75.5% , respectively. Extreme problems in the five dimensions were reported by 3.7% , 3.7% , 6.0% , 9.8% , and 3.4% of stroke survivors, respectively. Figure 1 shows the associations between the five EQ-5D dimensions and health checkup participation rate. Participants with problems in mobility, self-care, usual activities, and pain/discomfort dimensions received less health checkups than their counterparts. More severe problems in mobility, self-care, usual activities, and pain/ discomfort dimensions were associated with lower health checkup rates. In contrast, the severity of the anxiety/ depression dimension was not associated with the health checkup rate. --- Discussion The present nationwide study demonstrated that the major factors related to health checkup participation in community-dwelling stroke survivors were education level, living alone, occupational status, smoking habits, and degree of physical activity. Stroke survivors with problems in mobility, self-care, usual activity, or pain/ discomfort tended to engage in less health checkups. Therefore, greater attention should be paid to community-dwelling stroke survivors with low education, living alone, unemployed, currently smoking, insufficient physical activity, or problems in self-care and usual activities to lead them to participate in health checkups. The stroke survivors with insufficient physical activity had a 0.5-fold lower odds of health checkup engagement than those with sufficient physical activity after adjusting for multiple potential confounders. These results are consistent with an earlier study that found that performing daily exercise was positively related to health checkups in the general population in Japan [27]. However, the association in stroke survivors has not been found in other studies. A sedentary lifestyle and low physical activity have been shown to increase the risk of incident and recurrent stroke [28]. Therefore, physical activity levelas an independent factor associated with health checkups in community-dwelling stroke survivors and as an established risk factor for cardiovascular disease-may be a key factor to determine people in need of regular health checkups. Fig. 1 Proportion of health checkup non-participants in each EQ-5D-3 L dimension. EQ-5D, EuroQol 5-Dimension Questionnaire Current smoking status showed an independent negative association with health checkup participation in stroke survivors. The similar association between smoking and non-participation in health checkups has been reported in older populations in a previous study [29]. An interesting result related to smoking was that past smokers showed a higher health checkup rate than never smokers as well as current smokers. A possible explanation is that people who successfully quit smoking are aware of the importance of their health and have the will to actively prevent diseases. After quitting, the elevated risk of stroke owing to smoking declines and disappears after five years [30]. Therefore, providing smoking-related counselling to stroke survivors may be a key public health intervention to promote health checkups and prevent recurrent stroke. Among the sociodemographic factors, having an occupation and living with cohabitants were independent factors and positively associated with stroke survivors' health checkup rate. Previous studies of older adults and the general population have found consistent resultsthat occupation was related to health checkup behaviour [31,32]. In Korea, for the health promotion of workers, a regular health checkup is mandatory for office workers once every two years and for non-office workers once a year. This legal obligation might have an impact on the higher health checkup participation rate in stroke survivors with a job. However, because KNHANES did not collect information about individuals' retirement, we could not analyse differences between retired and longterm unemployed participants, despite that many participants were within retirement age. The results of our study showed that low education level was associated with low health checkup compliance, which is inconsistent with an earlier study conducted in Japan that reported an association between a shorter educational period and higher health checkup participation [15]. This inconsistency may stem from the demographic, medical, or social differences among the study participants, who were recruited from different regions or countries across the studies. The support of people with high social contact, such as the presence of cohabitants, seems to be a crucial factor leading to participation in health examinations. In a previous study that included participants with all types of disabilities, family factors such as having a spouse had a significant effect on the health checkup rate [7]. Sociodemographic factors such as occupation, social contact, and education are difficult to change by an individual's effort. However, the importance of clarifying these unmodifiable factors stems from the possibility of providing focused help. The government or healthcare professionals should increase the emphasise the importance of health checkups among non-hospitalised stroke survivors without an occupation, living alone, or with lower education. We additionally analysed the association between health-related quality of life and health checkup participation. The non-participation rate was higher in the groups reporting extreme problems in dimensions related to ADL such as mobility, self-care, and usual activities. These results are consistent with earlier studies that the people with dependent ADL had a low health checkup rate as compared to their counterparts [7,33]. Stroke survivors with difficulties in mobility, self-care, and usual activities will have difficulty living independently and need help from others in daily life. Individuals in such conditions can participate in health checkups only if they have extra personnel who can help them move to the hospital and require extra effort and time to examine in the hospital. We suggest that to increase the health checkup participation of people with severe problems in ADL, it is necessary to provide special care, such as a home visit programme, health checkup institutions dedicated only to the people with severe disabilities, or programmes/expanding programmes that provide transportation for individuals who require mobility assistance. This was the first study to investigate the independent factors associated with health checkup participation in community-dwelling stroke survivors. We examined multiple demographic, socioeconomic, and medical variables, along with health-related quality of life. Furthermore, the results were based on nationally representative data. Nevertheless, there are several limitations. First, a causal relationship between the multiple factors and observed trends cannot be inferred from this cross-sectional study. Second, sample selection bias and endogenous bias may exist. Since our study only includes data from Korea, an endogenous bias regarding ethnic homogeneity and sociality may exist. International and multi-ethnic studies are needed for more comprehensive results. Third, since the KNHANES survey did not target only stroke survivors, information on stroke subtype or severity, which can be an additional confounding factor, is lacking. --- Conclusion Insufficient physical activity, current smoking, low education level, living alone, and without occupation were the independent factors associated with poor health checkup participation among community-dwelling stroke survivors aged 50 years or older. Social protection to induce health checkups are needed for health equity of stroke survivors in those conditions. Furthermore, health checkup programmes should be expanded according to the severity of impairment and disability-friendly health checkup institutions should be considered to strengthen stroke survivors' access to medical services. --- Data availability The KNHANES database is publicly available . --- Abbreviations --- ADL Activities of daily living EQ-5D EuroQol --- --- --- Competing interests The authors declare that they have no competing interests. --- Publisher's note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Background We investigated the sociodemographic and health-related factors associated with health checkup participation in community-dwelling stroke survivors. Methods Among participants of the Korea National Health and Nutrition Examination Survey, 642 stroke survivors were included. We investigated the sociodemographic, medical, and health-related quality of life factors-evaluated by the EuroQol 5-Dimension Questionnaire (EQ-5D)-associated with participation in any type of health checkup. To explore the associations between multiple variables and health checkup participation, a multivariable complexsample logistic regression model was used.One-third of the community-dwelling stroke survivors did not receive a health checkup in the past two years. Insufficient physical activity (OR: 0.5, 95% CI: 0.3-0.9), current smoking (OR: 0.4, 95% CI: 0.2-0.8), low education level (OR: 0.5, 95% CI: 0.3-0.9), living alone (OR: 0.5, 95% CI: 0.3-0.998), and no occupation (OR: 0.5, 95% CI: 0.3-0.9) showed independent negative associations with health checkup participation. Among the five EQ-5D dimensions, mobility, self-care, usual activities, and pain/discomfort dimensions were associated with health checkup participation rate.Policies and further research are needed to promote health checkups for stroke survivors who are physically inactive, currently smoking, living alone, unemployed, less educated, or having extreme problems in their daily lives.
Introduction: social media is like a big playground on the Internet where children in Maharashtra love to hang out. It is a place to make friends, share fun stuff and learn new things but like any playground it has its ups and downs. In this study, we're going to talk about how social media affects kids in Maharashtra. We want to find out the good things like making friends and learning cool stuff but we also want to know about the not so good things like being mean to each other for spending too much time on screens. So let's explain how social media can be awesome and sometimes tricky for kids in Maharashtra. We will look at what age has to do with it, how much time kids spend online and how parents can help. It's like a digital adventure we're about to embark on! Importance of Social media: 1. Education: Many educational platforms available for kids. It helps to explore new things. 2. Creativity: It enables the students to be more creative at a different social platform like Tiktok, Twitter, Instagram, short reels on Facebook using all these applications children start making different videos. It also enhances children's creativity like dance, acting and singing. 3. Communication: It helps them practise communication skills and Express their thoughts and feelings. 4. Awareness: They can learn about important events, news and causes that matter in the world. 5. Support: Social media can be a place to find support and advice on various topics like School hobbies or personal issues. 6. Entertainment: Social media provides a wide range of entertainment from videos to memes, enhancing leisure time. 7. Information sharing: Social media serves as a vital source of news, knowledge and information dissemination. --- Psychological Impact on kids : A) Positive psychological impact: 1) Social connection: social media can provide kids with a sense of belonging and help them maintain friendship, particularly if they have moved or have friends at a distance. . This is a bit like an addiction to being online. Some kids who play a lot of video games can even have a disorder called 'Internet gaming disorder'. They spend so much time online that they don't seem to care as much about real-life friends and activities. This can lead to feelings of sadness. 9) Risky behaviour: When kids share pictures and videos on social media that show them doing things like using drugs and it engaging them. --- Literature review: 1. Journal of the American Academy of child and adolescent psychiatry 40, 392-401, 201 This study looked at how social media affects teenagers. We talked to young people in Albania who use social media a lot and here's what we found. Good things about social media for teens: 1. It helps them talk to others and learn things. 2. They become better with technology. --- 3. They learn how to use this new technology effectively. But, there are some bad things too: 1. Some teams get sad Or upset when they use social media. Which is called "Facebook depression". 2. Some kids get bullied or harassed online. In the end, we gave some ideas for more research in this area. 2. International journal of environmental research and public health 19, 9960,2022 Kids and teenagers are using social media a lot, especially during the covid-19 pandemic. They often use platforms like Instagram, TikTok and YouTube. This can be good for staying in touch with friends and doing schoolwork. But there are some problems linked to social media use, especially for young people. These problems include feeling sad eating habits and mental health issues. There are also concerns about sleep, addiction, anxiety and more. Doctors and caregivers need to be careful and help kids use social media in a healthy way. They should watch for signs of trouble and try to prevent problems. --- Conclusion: The impact of social media on kids in Maharashtra is a multifaceted subject. While it offers numerous benefits such as educational opportunities, creativity enhancement, and social support, there are also significant concerns like cyberbullying, psychological effects, and risky behavior. Striking a balance between the positive and negative aspects is crucial. Parents play a pivotal role in guiding their children's digital experiences, ensuring a safe and constructive online environment. Education and awareness programs can empower both parents and children to navigate social media responsibly. Further research and collaboration are needed to develop effective strategies that promote the positive aspects of social media while mitigating its potential drawbacks, ultimately fostering a healthier digital landscape for kids in Maharashtra.
The way social media affects kids in Maharashtra is something we need to understand. Social media can be good for Learning and making friends but it can also be bad. If kids spend too much time on it or face problems like cyberbullying, it's important to figure out how parents can help the need for more studies and take teaching to make sure social media is safe and helpful for kids in Maharashtra. Keywords -Importance of social Media, effect mental health and physical health, cyberbullying and Impact.
INTRODUCTION Elementary school is the most basic level of formal education that nurtures students aged 6 to 12 years old . At this level, education must be carried out as well as possible because it will be the foundation for further education. The importance of multicultural education in improving students' social care character can be seen from several perspectives. First, in this era of globalization, intercultural interactions have become inevitable. Schools, as educational institutions, have an important role in preparing students to operate in a multicultural global context. Through multicultural education, students are taught to appreciate diversity, understand different perspectives, and develop empathy for others who have different backgrounds than them. Second, strong social care character is considered essential for social welfare and community harmony. In a multicultural context, social care helps students not only accept differences but also work constructively to support peers who may need assistance or understanding. Multicultural education helps students think critically about social issues, build solidarity between groups, and act inclusively and fairly. Third, SD Muhammadiyah 6 North Samarinda, as a diverse educational institution, provides a unique opportunity to implement and study the effectiveness of multicultural learning strategies. Case studies at this school can provide insight into how multicultural educational practices can be concretely applied to improve social care character among students, which can serve as a model for other schools in facing and celebrating cultural diversity. Instilling and shaping character at elementary school age is very good to do because a child is in a developmental stage, they will be sensitive enough to imitate and respond to educational stimulation from outside . Thus, it will greatly affect the success of character building. Character becomes a fundamental part of education that deserves special attention . Character is the most important foundation that needs to be strengthened before building education in intellectual terms. So far, education has only focused on cognitive abilities and ignores other more important elements . Many people think that success is only measured by the parameters of knowledge alone and often ignores the values of character. Character education must be optimized, because what underlies education is the process of humanizing humans . That is, humans need to be equipped with things other than cognitive abilities. What is meant by other things are affective abilities or attitudes. Teachers are one of the successful factors in an educational process who are responsible for their students to become quality young generations . Learning activities are at the core of educational procedures, where teachers play an important role. In this activity, there is a series of activities carried out by teachers and students to achieve educational goals. Based on Law no. 20 article 3 of 2003, the purpose of national education is to help students become healthy, knowledgeable, skilled, creative, noble, independent, responsible, democratic, faithful and pious human beings. One important part of educating students is noble character. The character of a nation is determined by the quality of its morals. Law no. 20 article 3 Year 2003, also explains the formation of character. After family, school is the right place to build character . Elementary schools have a huge responsibility to instill and apply character values to their students. Social care character is one of the 18 characters that must be inherent in students . Social care is an act, not just thought or feeling, but there is a desire to help others so as to alleviate their burden . By having good social care character, a student will be sensitive to what is happening around them, thus arises the desire to help, empathize, and always be responsive to friends who are experiencing difficulties. Teachers can shape students' social care character through learning activities in class or outside the classroom. That way, this social care character will stick to the students and can be applied within the school environment and outside school. In today's education, the challenges of globalization and socio-cultural diversity arise from increasingly intense interactions between various cultural and social groups. Globalization introduces students to various perspectives and values, but it can also lead to value conflicts and assimilation pressures. Socio-cultural diversity in the classroom can lead to misunderstandings and social tensions. In an increasingly diverse society, it is important for educators to integrate culturally responsive instruction. This not only benefits students with different backgrounds but also encourages acceptance and helps prepare them for an increasingly diverse world. By understanding the various types of diversity that may be encountered in the classroom, including race, ethnicity, religion, socioeconomic status, sexual orientation, and gender identity, teachers can design more inclusive lesson plans. Furthermore, diversity and cultural awareness help students become more empathetic, understand lessons better, be more open, confident, and prepared for diverse workplaces. This provides direct relevance to current and future needs in global education and workforce. Multicultural education offers solutions by teaching students to appreciate and understand this diversity, not only as a social fact but as a source of learning wealth. This approach helps students develop empathy, openness, and crosscultural communication skills, all of which are important aspects of a caring social character. By introducing students to different ways of life and thinking, multicultural education broadens their horizons and prepares them to contribute to a more inclusive and harmonious society. However, in reality social care today has begun to fade. This is indicated by the lack of caring for others, fights between students, bullying, brawls, indifferent attitudes towards friends who need help and the lack of students' desire to share with each other. This shows that shaping students' social care character is one of the important responsibilities of educational institutions. A similar problem was also revealed by Cahyono who stated that there has been an irrepressible degradation of moral values. This can be seen in television screens that display many phenomena of deviant behavior among teenagers, both students and college students, acts of violence, brawls between students, demonstrations, free sex, fraud, theft and other social diseases that have become daily consumption of the mass media . Murray et al. provided reinforcement regarding the importance of shaping social care character through their research, which revealed that the role of teachers when students are at school and the role of parents when students are at home, is very important for instilling social care character in elementary school students . As Annisa explained that the digital era encourages individuals to be individualistic . This can be seen when someone falls or has an accident, the first thing that is done is not to help them. But some people are busy immortalizing the moment by taking pictures, videos, or spreading them on social media. From the literature above, studies on shaping social care characters are very important to do. So that it can be actualized as a character education program in schools. Because, if the social care character of students is not immediately shaped and improved, it will lead to a moral crisis that results in negative behavior in society. Based on observations that have been made, social care for students at SD Muhammadiyah 6 Samarinda is still not well established. This is indicated by fights between students, bullying classmates, and students who do not care about friends who are having difficulties. However, there is one class whose students reflect better social care character than other classes, namely third grade students. The formation of this character is not an easy thing, of course there are ways or strategies implemented by a teacher. Therefore, researchers are interested in examining teacher strategies in shaping social care characters in third grade students at SD Muhammadiyah 6 North Samarinda for the 2022/2023 academic year. --- METHODS A qualitative method was used in this study. According to Moleong the stages in qualitative research include pre-field stage, field stage, and data analysis stage . The research was conducted at SD Muhammadiyah 6 North Samarinda located on Magelang Street RT. 19 Lempake Village, North Samarinda District, Samarinda City, East Kalimantan. This research was carried out in the even semester from March to April 2023. Once all the data, from observations, interviews and documentation has been collected, the next step is to analyze the data. The purpose of analyzing data is to classify the arrangement of data into existing provisions in order to obtain appropriate results. This study uses a qualitative descriptive analysis technique. Miles and Huberman stated that data analysis can be done with three activities, namely data reduction, data presentation, and drawing conclusions . Sugiyono stated that qualitative research can be considered scientific research, if the research tests the validity of the data . Researchers tested the validity of the data using triangulation techniques which were carried out by comparing the results of interviews with the results of observations and documentation. The researcher will check the truth of what was obtained from the three techniques that have been carried out. Qualitative --- RESULTS AND DISCUSSION --- 1 Research Findings The researcher describes the findings in the field based on the research focus, namely the teacher's strategy in shaping students' social care character and the obstacles in shaping the social care character of third grade students at SD Muhammadiyah 6 North Samarinda. Information obtained through interviews, observations and documentation is expected to provide an overview of teacher strategies and the obstacles experienced in shaping the social care character of third grade students at SD Muhammadiyah 6 North Samarinda. The class teacher's strategies and obstacles in shaping the social care character of third grade students are described as follows: 3.1.1. Teacher Strategies in Shaping Social Care Character of Third Grade Students 3.1.1.1 --- . Self Development Program a. Routine Activities There are several routine activities carried out in grade 3. The routine activities carried out are weekly routine activities in the form of Sharing Friday activities and weekly infaq. These routine activities are carried out every Friday and guided by the homeroom teacher. Based on the results of an interview with SR, it was stated that, "There is sharing Friday and also infaq, infaq is every Friday and it is given to the poor around the school. Sharing Friday is every Friday students bring two thousand rupiah or bring small snacks and given to each class in rolling every week for example maybe this week is in grade one, in the second week it's in grade two, and so on, and also occasionally students give it to teachers who are not their The results of the interview show that the strategy used by teachers to shape students' social care character is by carrying out routine activities in the form of Sharing Friday activities and weekly infaq every Friday. From the documentation it was found that there were reports when Sharing Friday and weekly infaq activities took place. Documentary data shows that students routinely carry out Sharing Friday and weekly infaq activities every Friday. Based on the results of interviews, observations and documentation, it can be concluded that the routine activities that grade 3 teachers and students usually do are Sharing Friday and weekly infaq activities every Friday. b. Spontaneous Activities Spontaneous activities carried out by teachers in order to shape students' social care character are by giving reprimands, advice and rewards in the form of appreciation or praise. Spontaneous activities in the form of reprimands and advice are given to students who show indifferent or uncaring behavior towards their friends. Meanwhile, spontaneous reward activities are given to students who demonstrate caring behavior towards others. Researchers asked questions about what actions teachers take when there are students who are indifferent or do not care about their friends. --- c. Role Modeling The role modeling carried out by teachers in order to shape students' social care character is by providing direct examples to students such as helping students who are having difficulties and need help. In addition, teachers also set an example by behaving in a friendly or familiar manner such as greeting students by shaking hands, greeting them and smiling. Regarding role modeling as a teacher's strategy to shape social care character, SR said that, "Showing what is good and what is bad, demonstrating sharing and helping each other. I teach students to help each other using peer tutors to explain, here I teach students to help their friends who don't understand." The results of the interview show that the role modeling carried out by the teacher as a strategy to shape students' social care character is by providing direct examples to students by helping others who are in trouble, and behaving friendly to everyone. --- d. Conditioning The conditioning carried out by the teacher to shape students' social care character is by changing the seating position which is carried out once a week. This activity is carried out every Monday before starting the lesson. This is in accordance with the results of an interview with SR who said that, "I conditioned the class by changing seats every week so that students get to know other friends, and also so that the class is more conditioned. So, students don't just sit next to their close friends but students always mingle with other friends and eventually students will get to know each other." Based on the interview results, it was found that the conditioning strategy carried out by the teacher to shape students' social care character was by randomly changing the seating position of students once a week. The change in students' social care attitude shows that the strategy carried out by the third-grade teacher gets a good response from his students. e. Habituation There are several habituation activities carried out by teachers to shape students' social care character in class. These habituation activities include getting students to Based on the data that has been obtained and described above, it can be concluded that the grade teacher's strategy in shaping the social care character of third grade students can be seen in table 1 can be seen that the strategies carried out by the third grade teacher are in the form of routine activity strategies, spontaneous activity strategies, exemplary strategies, conditioning strategies and learning integration strategies. The forms of strategy through routine activities are Sharing Friday activities, and weekly infaq every Friday. The forms of spontaneous activity strategies are giving warnings, giving advice, and giving rewards . Exemplary strategies are in the form of providing direct examples to students , friendly or familiar behavior . The conditioning strategy is in the form of changing the seating position of students once a week on Mondays. While the strategy through habituation activities is in the form of getting students to shake hands before entering the class, habituating the 3 magic words . Learning integration strategies are in the form of including social care character values in lesson plans, delivering advisory stories relating to social care, applying group methods, incorporating social care values in Civics subjects. The habituation and learning activities of SD Muhammadiyah students respect various cultures and how they are taught to understand and empathize with people from different backgrounds. Based on the teacher's strategies above, the multicultural learning integration that is applied can be described as follows, 1. Inclusive Content: That schools apply curricula that include examples, stories and lessons from various cultures. 2. Cultural Awareness: SD Muhammadiyah 6 carries out cross-cultural activities. This activity helps students learn about and appreciate various cultures, such as cultural studies, and celebrate various cultural festivals. 3. Equality and Access: Students have access to learning materials and resources, regardless of their cultural or socioeconomic background. 4. Critical Thinking: SD Muhammadiyah 6 students think critically about stereotypes, prejudices and cultural biases. 5. Collaborative learning: Group activities at SD Muhammadiyah 6 involve students from different cultural backgrounds working together. Research findings can be linked to this strategy by showing how existing activities at SD Muhammadiyah 6 encourage an environment where multicultural values can develop. For example, the activities of "Sharing Friday" and "weekly infaq" promote generosity and empathy, which are universal cross-cultural values. Teacher role models and the practice of "3 magic words" instill respect and courtesy, which are important in any multicultural interaction. To fully integrate these findings into a multicultural strategy, the study suggests including more diverse cultural content in teaching materials, promoting language learning to bridge cultural gaps, and involving parents and communities from diverse cultural backgrounds in school activities. The research findings at SD Muhammadiyah 6 provide a strong basis for multicultural learning From the strategies used by classroom teachers, it was found that third grade students had carried out the following social care activities. First, students empathize with friends who do not bring food or pocket money by sharing food with friends. This is in accordance with the results of interviews, where researchers asked students questions regarding how students act if their friends do not bring provisions or do not bring pocket money. Based on the results of interviews, observations and documentation researchers concluded that students were able to share food with friends. Second, Students empathize with friends who do not bring stationery by lending stationery to friends who do not bring or do not have any. Researchers interviewed ANR, by asking what students did if there were friends who did not bring stationery. The following is the result of an interview with ANR which states that "Lending stationery" . Based on the results of interviews, observations and documentation, researchers concluded that students were able to show caring attitudes by lending stationery to friends who did not bring or did not have any. Third, when a disaster occurs, students collect equipment or money for victims of natural disasters. The collection of equipment or money is intended for victims of the West Sulawesi earthquake and floods in South Kalimantan. Researchers interviewed ANCZ where researchers asked questions about whether they had ever carried out activities to collect money or goods for victims of natural disasters and how the implementation of these activities. The following is the result of an interview with ANCZ which states that, "Ever, each student brings from home like clothes that are no longer used but still usable, later donated combined first." The results of interviews with ANCZ are supported by the results of interviews with SR who says, "Ever on January 26, 2021 which was when the natural disaster of flash floods in South Kalimantan. Teachers and students raise funds by asking for donations from students who want to donate and students donate according to their abilities and also here students help teachers go to houses around the school to ask for donations whether it's money, basic necessities or goods such as clothes that are no longer used but are still usable." Fourt, Students are able to thank teachers, friends or school staff. Researchers interviewed ANCZ, regarding student responses or behavior when helped or given gifts by friends or teachers. ANCZ said, "Saying thank you" . Based on the results of observations on Tuesday, April 11, 2023 which obtained data that students were able to say thank you to school staff when helped to cross the road, apart from that students' polite behavior was also seen towards school staff when welcomed and helped to cross the road such as shaking hands. From the documentation in the form of pictures of students when thanking teachers and school staff. Document study data shows that students thank the teacher when helped to find the page on mixed juice, and thank the school staff when helped crossing by saying thank you and shaking hands. Based on the results of interviews, observations and documentation, researchers concluded that students were able to say thank you to teachers, friends or school staff. Researchers interviewed KZ, regarding student attitudes towards their friends in class. KZ said: "Good, don't often fight, harmonious" Based on the results of interviews, observations and documentation, it can be concluded that students do not like to disturb other friends. Sixth, students demonstrate social care behavior by reconciling their friends who are fighting. Researchers interviewed ANR, regarding student actions if there were friends who were fighting. ANR said, "Broken up, separated" . Interview and observation results are supported by documentation in the form of images when students are separating and calming their friends who are arguing or fighting. Based on the results of interviews, observations and documentation, it can be concluded that students are able to reconcile their fighting friends. Seventh, Students demonstrate social care behavior by helping friends who have difficulty working on assignments. Researchers interviewed ANR, about student behavior and methods if there were friends who had difficulty working on assignments. ANR said, "Teaching them. Coming to him then asking him "Which one is difficult can be helped, is there anything I can help with? If there is anything I can teach later" Based on the results of interviews, observations and documentation, researchers concluded that students were able to empathize by helping friends who were having difficulties. --- Discussion National education aims not only to educate the nation but also to shape the character and morals of the Indonesian people so that they can become a civilized and dignified nation . This cannot be separated from the role of teachers as educators. A teacher is not only tasked with transferring knowledge to their students. However, a teacher also has the duty as a guide, character builder, and role model . As a form of responsibility, a homeroom teacher must carry out these duties. One of the most important duties of a homeroom teacher is shaping the character or personality of their students, because education will create the next generation of the nation, so the character of the next generation will reflect what our nation is like. The implementation of duties as a form of responsibility of a third-grade teacher at SD Muhammadiyah 6 Samarinda has been proven by the existence of real actions in terms of character building by the third-grade teacher, namely social care character. The teacher does this so that their students have the provisions for social life for the present or the future. A homeroom teacher must take action so that their class is able to achieve the indicators of success in social care character. For third grade students they must be able to achieve indicators in the form of sharing food with friends, thanking school staff, lending stationery to friends, and collecting supplies and money for victims of natural disasters . In realizing this success, a homeroom teacher can make an effort in the form of strategies. Character building strategies proposed by Agus Wibowo can be done through self-development programs in the form of routine activities, spontaneous activities, role modeling, conditioning, and habituation as well as integrating with learning . In connection with this, the third-grade teachers at SD Muhammadiyah 6 Samarinda have applied this thinking as a step in an effort to shape the social care First, based on the results of the study, it shows that the third-grade teacher at SD Muhammadiyah 6 Samarinda has implemented a strategy in the form of routine activities as an effort to shape the social care character of their students. The routine activities carried out are weekly routine activities in the form of Sharing Friday activities and weekly infaq which are held every Friday. In Sharing Friday activities students are asked to buy snacks worth one or two thousand rupiah and then the teacher invites them to share with friends in other classes. Meanwhile, weekly infaq activities are carried out every Friday, one of the students goes around the class with an infaq box, then students who want to give alms put money in the box. These activities are carried out routinely and consistently on an ongoing basis. This is in accordance with the statement of Agus Wibowo that a student's character can be shaped in various ways, one of which is through routine activities, where routine activities are programs carried out by students consistently every time with the aim that students get used to doing good . One way to internalize character values in students is to get used to good activities in daily activities. In order to internalize the value of social care character in students, students must be accustomed to carrying out these activities continuously so that students will slowly get used to this behavior. The value of social care character learned through routine activities will form habits in students so that in the end the value of social care can be formed in students. Second, based on the results of the research, spontaneous activities are usually carried out when the homeroom teacher finds out that there are good student actions that need to be maintained and inappropriate student actions that need to be corrected immediately. This is in accordance with the statement of Agus Wibowo that spontaneous activities are activities that are carried out spontaneously at that time . Evidence of the application of the homeroom teacher's spontaneous activity strategy at SD Muhammadiyah 6 Samarinda can be seen from the provision of reprimands, advice, rewards . Regarding the giving of rewards, Maslow said that rewards for young children can be given concretely in the form of gifts or praise, thus the value of good behavior will be greater . This is also done by third grade teachers by giving rewards in the form of appreciation and praise to students who show caring behavior. The teacher spontaneously praises students who are helping friends who do not understand to complete assignments from the teacher by saying "good, smart helping friends who don't understand". Teachers also appreciate students by giving prizes in the form of snacks or stickers to students who show caring behavior such as respecting when the teacher is explaining in front of the class and respecting friends who are focused on learning. This is done by the teacher so that other students are motivated to emulate good behavior. Meanwhile, if the teacher finds out that there is inappropriate student behavior, Fitriani, et al said that the teacher is obliged to reprimand and advise students who do bad deeds and remind them to do good deeds . This has also been done by third grade teachers at SD Muhammadiyah 6 Samarinda by giving reprimands and warnings to their students who are indifferent or less caring towards their friends. Teachers give reprimands and warnings to students who make their friends cry jokingly, and make noise on their own not respecting friends who are focused on learning. Reprimands and warnings are given directly to students at that time. The teacher also reprimands their students who speak rudely and do not respect the teacher. The teacher provides advice or understanding to students about what good things should be done so that their students have caring attitudes towards others. Spontaneous activities are corrections of actions taken by students. Through spontaneous activities in the form of giving rewards can provide enthusiasm for students to continue doing good deeds, while giving reprimands and advice can provide a deterrent effect and shape students' character to be better. Third, based on the results of the research, it shows that the third-grade teacher at SD Muhammadiyah 6 Samarinda has implemented an exemplary strategy as an effort to shape the social care character of their students. The exemplary strategy is carried out by providing direct examples to students. Teachers provide examples of how to act and behave that demonstrate caring for others. Teachers help students who have difficulties and need help, for example when a student is sick, the teacher immediately approaches the student and offers the student to go home early and takes the sick student home or to the UKS for treatment. In learning when there are students who do not understand the material being taught, the teacher takes the initiative to approach or call the student who does not understand to be helped, so that other students imitate what the teacher does, namely helping their friends who do not understand by teaching them how to do it. In addition to providing direct examples of how to act and behave that demonstrates caring for others, the homeroom teacher also carries out an exemplary strategy by behaving in a friendly or familiar manner to everyone such as welcoming students who enter school by shaking hands, smiling and greeting students. As a role model, a teacher should set a good example in the form of attitudes and behavior that are good and can be emulated by their students. This is in accordance with Agus Wibowo's opinion which states that role modeling is an example that can be used as a reference for students . A teacher must set a good example, so that students can imitate that behavior. Based on the above description, it shows that the teacher has set a good example for their students. The teacher sets an example in the form of attitudes and behavior so that students can directly see real examples of the attitudes and behavior of teachers in implementing social care character education. Fourt, based on the research results, it shows that the third-grade teacher at SD Muhammadiyah 6 Samarinda has implemented a conditioning strategy as an effort to shape the social care character of their students. The conditioning strategy is carried out by changing the seating position of students once a week on Mondays. Changes in seating position are done randomly. This conditioning is done so that students are comfortable, do not choose friends, and get used to socializing, cooperating and helping each other. The conditioning carried out by the teacher is a supporting part in the implementation of social care character education. This is in accordance with Agus Wibowo's statement that conditioning is a condition where the school supports efforts to shape the character of its students which is done by reflecting the cultural values of the school or class . Based on the description above, the teacher has provided good conditioning as an effort to shape the social care character of their students in class. Fifth, based on the results of the study, it shows that the third-grade teacher at SD Muhammadiyah 6 Samarinda has implemented a habituation strategy as an effort to shape the social care character of their students. The habituation strategy is carried out by familiarizing students to shake hands before entering class. Every morning before entering the class students is accustomed to shaking hands with the teacher and their friends. Teachers also implement habituation strategies by familiarizing students to apply 3 magic words, namely apologies, requests for help, and thank you. When there are students who cry, the teacher tells students who make their friends cry to apologize, the teacher also always reminds their students to say thank you when given gifts or assistance. The habituation carried out by the teacher is carried out by familiarizing their students to apply good habits. This is in accordance with the statement of Admizal and Fitri that character building is not just about teaching what is right and what is wrong. However, it is necessary to instill good habits, so that students understand what is right and wrong . Based on the above description, it shows that the third-grade teacher implements a habituation strategy as an effort to shape the social care character of their students by familiarizing students to apply good things such as shaking hands with teachers and friends before entering class and familiarizing students to apply 3 magic words, namely apologies, requests for help and thank you. This is done by the teacher so that students get used to it and understand what is right and what is wrong. --- b. Learning Integration Strategy Based on the results of the study, it shows that the third-grade teacher at SD Muhammadiyah 6 Samarinda has made lesson plans which contain the value of social care character. This is in accordance with Zubaedi's statement which states that homeroom teachers must be able to prepare and develop a syllabus containing Lesson Plans by including character values . Social care character values in characterintegrated learning activities to help others and social care. The integration of learning is carried out by third grade teachers by internalizing Civics Education subjects. Teachers integrate the material of unity in diversity, where in the learning activities the homeroom teacher uses the group method. Through learning activities using this group method, the homeroom teacher outlines matters relating to cooperation, helping each other, and living in harmony in the student environment. The application of this group method is in line with Abdul Majid's opinion which states that learning by working in groups can train students in terms of pedagogy, group learning can improve the quality of students' personality such as cooperation, tolerance, critical thinking, and discipline. Meanwhile, from a social perspective, smart students in the group can help students who do not yet understand the material . Apart from being integrated with the group method, third grade teachers at SD Muhammadiyah 6 Samarinda also convey a story in instilling social care character. The cultivation is in the form of motivation and stories of everyday life that can provide an illustration to students of the importance of social care. The method of storytelling in shaping social care character carried out by the teacher is in accordance with the opinion of Admizal and Fitri, who suggest several methods for implementing character education including the storytelling or fairy tale method. In using the storytelling method, the teacher's improvisation is needed, in the form of changes in facial expressions, voice intonation, and body movements . The most important thing is that the teacher must make a joint conclusion with the students. The activities carried out by the teacher are designed so that students realize, care about, and apply the values of social care character in their daily behavior. The strategies implemented by the teacher have proven to have a good influence in an effort to shape students' social care character, this is reflected in the social care character of third grade students who are able to meet the indicators of social care including students are able to share food with friends, students are able to lend stationery to friends who do not have or do not bring them, students participate in collecting supplies and money for disaster victims, students are able to thank teachers, friends and school staff, do not disturb other friends even though there are still some naughty students, students are able to reconcile their friends who are fighting, and students are able to help friends who have difficulty working on assignments from the teacher. This is in accordance with the statement from the Ministry of National Education which states that the indicators of social care that are the reference for lower grade students are sharing food with friends, thanking school staff, lending stationery to friends, and collecting supplies and money for victims' natural disasters . The implementation of multicultural education at SD Muhammadiyah 6 has been going well and structured. All stakeholders support both habitual and learning activities. Routine activities such as "Sharing Friday" and "Weekly Infaq" are an effective platform for instilling social care values. In a multicultural context, this activity can be enriched by involving elements from various cultures present in Indonesia and globally. This will introduce students to the concept of sharing that is not limited to their own scope, but also open to global diversity. This approach not only strengthens social care character but also promotes tolerance and appreciation for cultural diversity. Teacher behavior that reflects role models not only affects students' character but also provides a model of social interaction in diversity. Teachers can demonstrate inclusive attitudes and respect diversity through daily interactions with students. This includes introducing and celebrating traditions from various cultures, which will give students a broader understanding of multicultural society. The periodic change of seating positions creates opportunities for students to interact with friends from various backgrounds. This strategy can encourage students to learn and appreciate the uniqueness of each individual, instilling values such as harmony and cooperation that transcend social and ethnic boundaries. Habituation activities such as shaking hands and using polite words provide a foundation for building good social ethics. In a multicultural context, these activities can be directed to respect various forms of greetings that exist in various cultures, as well as introducing students to various ways of expressing courtesy and gratitude in different languages and cultures. The integration of social care values into subjects such as Civics Education shows an effort to combine the curriculum with multicultural values. The emphasis on values of Pancasila such as cooperation and living in harmony demonstrates their relevance to multiculturalism principles, which can be applied in a broader context. --- CONCLUSION The application of multicultural learning strategies at SD Muhammadiyah 6 North Samarinda has shown significant potential in developing social care character in students. The integration of multicultural values into the curriculum and school activities provides opportunities for students to understand and appreciate cultural diversity, which is an important aspect of life in today's global society. Through role model teachers, inclusive routine activities, open dialogue, and the use of media and technology, students are encouraged not only to learn about diversity but also to apply it in their daily social care actions. Thus, this multicultural approach enriches the students' learning experience and equips them with the intercultural skills needed to interact in a diverse world. Teacher training is key to ensuring consistent and effective implementation of multicultural learning strategies. Finally, through this approach, SD Muhammadiyah 6 North Samarinda not only shapes social care character but also instills an appreciation for plurality as a wealth that must be preserved and developed.
This study aims to analyze teacher strategies in shaping social care character and constraints experienced in shaping social care character of third grade students at Muhammadiyah 6 Elementary School North Samarinda 2022/2023 Academic Year. This study uses qualitative methods with data collection techniques namely interviews, observations, and documentation. The study conducted at SD Muhammadiyah 6 Samarinda Utara revealed creative strategies adopted by teachers to cultivate social care character among third grade students. By implementing routine activities such as 'Sharing Friday', weekly infaq, and spontaneous responses in the form of reprimands and advice, teachers inculcate caring values. They also demonstrate exemplary behavior and transform the classroom environment to facilitate better social interactions. The use of magic words in daily interactions and the integration of social care values in Civics Education lessons emphasize the importance of empathy and solidarity. The researcher recommends that the school develop learning materials that reflect the cultural, religious and ethnic diversity in Indonesia and provide professional training for teachers on how to integrate multicultural education into their teaching and how to identify and respond to bias in the classroom.
Introduction Shanghai is one of the world's most influential cosmopolitan cities, attracting numerous expatriates to settle down and contribute to China's national economy as well as to the world economy [1,2]. However, the recent outbreak of the Omicron variant hampered these foreigners from pursuing their social and emotional wellbeing. In retrospect, China normalized the level of the pandemic issues in the early days of the COVID-19 pandemic through its "Zero-COVID" policy, in which the government strictly controlled internal transportation and cross-border traffic [2][3][4]. Notably, when the Delta variant spread in China during the summer and fall of 2021, the government implemented a series of citywide lockdowns in key global economic hubs in the Yangtze River Delta region and Southeast China . In so doing, the nation quickly normalized the public health crisis [5]. Indeed, Shanghai's precision prevention model has been valued by Chinese society as a whole, as the city implemented certain strategies to control explosive chains of lethal transmission. Shanghai residents showed strong collective behaviors by wearing face masks regardless of age, gender, occupation, or location in looking out for their neighbors' wellbeing [1]. Despite these efforts, the recent outbreak of Omicron in Shanghai has led to a longterm citywide lockdown. This lockdown has been a frequent topic in global discourse, as Shanghai is one of the most economically advanced cities in the global arena, playing host to numerous foreigners. According to mainstream global public media outlets , many nations have adopted strategies for living with the coronavirus as the consistently growing infection rate seems to have made it impossible to return to zero cases. However, China has continued its "Zero-COVID" policy through the government's strong social control [6,7]. Since 2 March 2022, more than 28.5 million residents including approximately 160,000 foreigners have endured a series of short-term and long-term lockdowns and repeated Polymerase Chain Reaction tests [8,9]. Notably, Shanghai had a relatively high level of vaccination rate, which showed approximately 85% of all residents were vaccinated by the time of the Omicron outbreak. However, while approximately 62% of senior citizens were vaccinated, only about 38% of them received booster vaccinations [10]. In this rapidly growing domestic problem, the emotional and social well-being of numerous expats under the strict 'Zero-COVID' policy has also been an issue of increasing geopolitical concern for foreign embassies, consulates, and chambers of commerce in Shanghai. Foreign nationals have felt an enormous amount of uncertainty, confusion, stress, and frustration [11,12]. Although there is a growing body of literature addressing the impact of the COVID-19 pandemic on the human ecological system as well as recent global public media coverage of the current Shanghai lockdown under the 'Zero-COVID' policy in China, scholars and journalists have paid scant attention to the lived experiences of residents, including expats, in the locked down city. At this point, it is significant to recognize that "explicit cross-cultural adaptation is already stressful and continues onward to contemplate how emotional factors interact with psychological trauma during the pandemic" and address how members of host nations could reduce cultural conflicts and promote social and emotional wellbeing for expats by establishing potential coping mechanisms [13]. Moreover, exploring the nexus between anxiety and coping during a lockdown can increase our understanding of the perceived impact and wrong information sources, which can accelerate the level of emotional unrest, especially social media effects on ordinary people [14]. It is also crucial to pay close attention to potential moral injury that could influence job burnout during a long-term pandemic time; medical professionals, healthcare providers, and community volunteers can face a moral dilemma, "when one is aware of the right thing to do but is unable to do so because of occupational constraints" [15]. From these perspectives, the current study expands on previous scholars' claims about the importance of host nation citizens at a time when expats feel confused and uncertain about their life changes. This study applies a digital ethnographic approach to explore the social and emotional challenges faced by expats and to determine from a cross-cultural perspective the factors that boost intercultural collective resilience through secondary coping for expats. --- Emotional Challenges Amid COVID-19 Lockdowns in the Chinese National Context Emotional challenges are defined as traumatic psychological symptoms that include stress, confusion, frustration, depression, and the feeling of loss. Due to COVID-19 lockdowns, numerous individuals worldwide have been facing diverse forms of emotional challenges [13,16,17]. A growing body of literature has explored the emotional challenges faced by people under COVID-19 lockdowns. Previous scholarship investigated Wuhan's 76-day lockdown . For example, the long-term lockdown significantly impacted Wuhan residents' emotions and empathy, creating anxiety about physical and mental health. The most severe traumatic incidences and risk factors were lack of necessities such as food, drink, and medical supplies [13]. Another growing concern was the limited number of medical staff could not cope with the rapidly growing case rate. Phobia and stigmatization of Wuhan residents were also persistent concerns as the city had the most infections in the country [13,18,19]. In global migration research, previous scholars explored the pandemic experiences of educational sojourners including Chinese international students residing in foreign countries and international students in China. For example, Nam and his colleagues [20] examined racially traumatic events and potential risk factors among 16 Chinese international students and eight Chinese exchange students during the early days of the COVID-19 pandemic at U.S. in-stitutions of higher education in Arizona, California, Florida, Massachusetts, New York, Oregon, and Texas. While schools were closed, often Chinese students were in quarantine or self-imposed isolation due to growing Xenophobia and Sinophobia. They were also anxious about consistent public and social media portraits that fueled the stigmatization of ethnic Asian people, especially positioning Chinese people as potential vectors for coronavirus infection. Due to racially traumatic events and their security concerns, many of the participants who were on educational exchange returned to China after the 2020 spring semester [3,20]. Additionally, another study investigated the emotional challenges faced by eight international students from Pakistan, Malawi, and Cameroon who were unable to be evacuated during the Wuhan lockdown. Their symptoms consisted of homesickness, stress, anxiety, and fear. Although they received social and emotional support from school administrators, embassies, and locals, they testified that they still had long-traumatic symptoms [13]. Finally, the other studies explored the initial nationwide lockdown experiences of international faculty in Shanghai and graduate student researchers in Beijing with which the timeframe when Wuhan residents were in a long-term lockdown. They faced extreme stress dealing with online teaching and learning as well as intercultural communication gaps. They also witnessed many individuals' mental crises regardless of national origin, social representation, or cultural practice [2,4]. --- Theoretical Framework --- Resilience in Cross-Cultural Psychology A growing body of literature within cross-cultural psychology and in the broader field of social and behavioral science has sought to comprehend migrants' coping mechanisms for handling emotional challenges [17,[21][22][23][24][25]. Resilience is one of the considerations to which COVID-19 researchers recently have paid more attention in order to explore the factors that impact individuals' mental crises and the challenges to overcome diverse emotional barriers [17,[21][22][23][24][25]. Explained simply, when it comes to the pandemic, the fundamental concept of resilience illustrates "the rate of recovery of a system from perturbation back towards a presumed, pre-existing stabler state-here zero infection and associated deathswhere rapid recovery equals high resilience" [24]. In the field of cross-cultural psychology that deals with global migration, scholars often consider the concept of resilience when viewing the acculturative challenges faced by sojourning groups. Simply put, acculturation is defined as "the general processes and outcomes of intercultural contact" [26,27]. There are four types of acculturation patterns in plural societies: integration; assimilation; separation; and marginalization. These four patterns are considered to be the consequences of immigrants' attitudes toward adopting a new cultural identity in their host society or maintaining their ancestral cultural identity. A positive attitude toward both maintaining one's original culture and accepting other cultures yields integration. Notably, resilience is to identify the moderating factors that promote coping mechanisms for migrants who face emotional challenges by examining the ways in which host country members can serve as moderators and help to bridge the cultural distance between the host society and the expats' culture of origin [27]. In underpinning the concepts of resilience in COVID-19 research, resilience is a form of community relationship and social interaction among members of specific inner cultural groups or selective cultural groups [28]. For instance, Wuhan residents used prosocial behaviors to support one another, using social media apps to seek volunteer groups at the local level. Controlling social deviance or cultural conflict is a crucial factor that boosts resilience, helping cultivate prosocial behaviors and a sense of belonging amid lockdowns [13,18]. Additionally, prosocial behaviors among members of inner cultural or selective groups can influence other cultural groups, motivating them to cultivate compassion and humanitarianism and to help their neighbors in times of public health crisis [21]. --- Secondary Coping Secondary coping illustrates how sojourners and migrants deal with stress and anxiety through creating collective endeavors to overcome cultural conflicts. This type of coping indicates that sojourners and migrants are negotiating with their emotional challenges, developing mindfulness and willingness to accept certain negative events or memories rather than denying or committing self-imposed isolation [29,30]. Cultural conflicts or adaptation challenges can occur because of intercultural communication gaps such as language barriers and misunderstanding of local cultures [31]. The importance of social and emotional support from local residents as a prominent coping strategy. For instance, prior to the COVID-19 pandemic, migrant workers and international students faced crosscultural adaptation challenges due to language barriers and social values in China due to host nation members' strong emphasis on collectivist identity. Yet, they felt less pressure when they were socially and emotionally supported by the local community [32,33]. Additionally, using secondary coping for international students amid the Wuhan lockdown decreased their emotional challenges and helped to create a positive image of the host nation despite ongoing psychological traumatic symptoms such as stress and anxiety about physical and mental health, and homesickness and burnout from studying abroad. Social support from university administrators and Chinese friends helped them to regain their motivation to undertake their academic studies [13]. Pertinent to the current study, it is necessary to understand Chinese collectivism because of its preference for tightly knit social networks in which individuals can expect their relatives, friends, and/or communities to look out for them in exchange for unquestioning loyalty. This worldview has been linked to historical farming cultures in China. The rice farming cultural region left a lasting influence on southern China, which has implications for millions of people who are descended from rice-farming communities. In this context, rice farming's intense labor demands led to cooperative labor exchanges, and rice irrigation networks led to social coordination, monitoring, and punishment systems. Although very few people in Shanghai farm rice today, this history led to tighter social norms and more stable social relationships [34]. --- The Rationale for the Current Study and Research Questions Despite the fact that the past two years have witnessed the emotional and social well-being issues involving numerous individuals during the COVID-19 pandemic, the experiences of expats amid the long-term Shanghai lockdown along with the new Omicron variant have been paid limited attention. When most countries have increased their crossborder traffic and normalized the level of the pandemic issues, China has been continuing its dynamic Zero-COVID policy. In this context, expats in China could be vulnerable populations based on language barriers and cultural distance [33]. Notably, expats' experiences of the consistent short-term and long-term lockdowns in Shanghai can significantly be different from other previous lockdown cases including Wuhan's 76-day lockdown, because of frequent policy changes, food and water shortage, fake news, and lack of emotional and social support from their own diplomatic communities, among others but not because of the unknown virus and its explosive chains of lethal transmission. Based on the chosen theoretical considerations, assumptions, and contexts, the primary research questions that guided this study were: RQ1: What were the major emotional challenges faced by expats during the series of lockdowns to contain the Omicron variant outbreak in Shanghai? RQ2: What sources of social support did expats receive from host country members to cope with their emotional challenges? --- Materials and Methods --- A Digital Ethnographic Approach We, the four authors of this study, are transnational researchers: one Asian-American man, one White-American man, one German man, and one Chinese woman. We are conventionally trained academics in comparative and international education, cross-cultural psychology, cultural geography, and sociolinguistics. We met through professional relationships in an institutional setting as academic faculty members affiliated with an institution of higher education in Shanghai, China, and three are expats with high-level foreign talent visa status in teaching and research. All of us have been enduring the COVID-19 pandemic in China since the initial outbreak. Three of us have now experienced a series of lockdowns and persistent PCR tests in Shanghai since 2 March. Yet, one of us, a foreign faculty member, recently moved to another institution in Hangzhou, which is about 150 km away from Shanghai, before the Omicron outbreak in China. To implement this research, we adopted a digital ethnographic approach which is beneficial for examining social and behavioral changes among divergent culture-sharing groups by using new technologies for social research [35,36]. These broadly consist of communications via public and social media platforms, videoclips, blogs, letters, emails, and more diverse qualitative sources visible online [36]. Thus, in conducting a digital ethnography, ethnographers immerse themselves in other culture-sharing groups, examining diverse social issues and cultural events as observers [35,36]. --- Fieldwork via WeChat We adopted an observational research approach [37]. Accordingly, we conducted direct and participant observations via WeChat, which is the most widely used social media messaging app in China. A total of 1558 WeChat accounts were divided into seven chat groups . We developed fieldnotes through our personal reflections, observations, and written and textual data such as media sources, email communications, and online meetings . These data sources were utilized to develop the contextual background for each theme. We also captured approximately 300 screenshots, which include but are not limited to sources of information from international diplomatic communities, compound committees, and volunteering-groups, as well as WeChat communications among various individuals. Some of the individual texts were also collected from those individuals. We mutually discussed and selected the most appropriate screenshots. Given this, we excluded texts that are too political, inappropriate, or vulgar [38]. Although we relied on web-based objects such as WeChat group data by conducting observations, we respected ethical guidelines according to our IRB protocol. Overall, we acknowledged that respecting individuals' personal identities should still be protected by researchers. Thus, we obtained consent from only those expats who provided their own texts or personal messages online. We used pseudonyms to protect their identities, removing their specific affiliations and age. Although we relied on web-based objects such as WeChat group data by conducting observations, we respected ethical guidelines according to our IRB protocol. Overall, we acknowledged that respecting individuals' personal identities should still be protected by researchers. Thus, we obtained consent from only those expats who provided their own texts or personal messages online. We used pseudonyms to protect their identities, removing their specific affiliations and age. --- Data Analysis We used a qualitative thematic analysis method to deduce conclusive findings [39]. In the initial phase, we carefully reviewed texts in each WeChat group and mutually discussed to consider potential themes in relation to the primary research questions. We openly coded both common and diverging perceptions of the emotional challenges faced by expat groups. In the meantime, we considered mutual interactions between foreign expats and Chinese groups. In the next stage, we considered cross-cultural factors that promote or hamper expats from cultivating prosocial behaviors and collective resilience in inner cultural or selective cultural groups. We recognized that there were limited texts on prosocial behaviors or collective resilience among expat groups but found there were some positive aspects of collective intercultural resilience between the expat and Chinese groups. In the final stage, we mutually discussed the most influential and emergent themes to identify the emotional challenges faced by expats and the sources of social support from Chinese citizens. --- Results --- Expats' Emotional Challenges Amid the Shanghai Lockdown On 2 March 2022, two of us were teaching on campus. It was the first week of the new spring semester. That day, the Shanghai government announced that the first infection case had been found at the Flower Hotel in downtown Shanghai. All classes were immediately canceled, and all academic faculty, administrative staff, and students were required to stay on campus and take PCR tests. One of us returned home at night. One of us remained on campus for more than three days to serve as emergency staff to organize a series of PCR tests over the following days. Since that day, we have experienced multiple short-term lockdowns and consistent PCR tests over the course of four weeks, --- Data Analysis We used a qualitative thematic analysis method to deduce conclusive findings [39]. In the initial phase, we carefully reviewed texts in each WeChat group and mutually discussed to consider potential themes in relation to the primary research questions. We openly coded both common and diverging perceptions of the emotional challenges faced by expat groups. In the meantime, we considered mutual interactions between foreign expats and Chinese groups. In the next stage, we considered cross-cultural factors that promote or hamper expats from cultivating prosocial behaviors and collective resilience in inner cultural or selective cultural groups. We recognized that there were limited texts on prosocial behaviors or collective resilience among expat groups but found there were some positive aspects of collective intercultural resilience between the expat and Chinese groups. In the final stage, we mutually discussed the most influential and emergent themes to identify the emotional challenges faced by expats and the sources of social support from Chinese citizens. --- Results --- Expats' Emotional Challenges Amid the Shanghai Lockdown On 2 March 2022, two of us were teaching on campus. It was the first week of the new spring semester. That day, the Shanghai government announced that the first infection case had been found at the Flower Hotel in downtown Shanghai. All classes were immediately canceled, and all academic faculty, administrative staff, and students were required to stay on campus and take PCR tests. One of us returned home at night. One of us remained on campus for more than three days to serve as emergency staff to organize a series of PCR tests over the following days. Since that day, we have experienced multiple short-term lockdowns and consistent PCR tests over the course of four weeks, before the major lockdowns were mandated on 28 March or 1 April. From our own personal standpoint, we experience neuroses about the omen of lockdowns. We were extremely exhausted and frustrated due to the persistent PCR tests. We were also stressed about our ordinary lifestyle shifts. We also witnessed many individuals express leisure constraints, which made them feel burnt out and disengaged from their jobs. We have also had concerns about families and friends, experiencing or witnessing separation, illness, loss, and grief during the series of short-term and long-term lockdowns affecting Shanghai . --- Fake News and Rumors about the Major Lockdown On 28 March, the Chinese government implemented a citywide lockdown policy. The government announced that the eastern part of the city would be sealed for four days from 28 March to 1 April and in turn, the western part of the city would be sealed from 1 April to 5 April. Accordingly, over 28 million Shanghai residents were isolated into their compounds in the hope that the city could contain the outbreak of the Omicron variant . Expats were confused and uncertain due to consistent fake news and rumors about the major lockdown. They were already extremely stressed out and exhausted from the multiple short-term lockdowns. On 7 April, texts between members in the EU-Citizen-Group showed how confused they were about the rumors. Staying in different districts and compounds, they wished to collect accurate information in a moment when there were growing rumors about when their compounds would be unsealed: Polish man: I heard from Chinese people. Some compounds will be unsealed soon. Anybody heard of it? ... Or other restrictions? I heard our compound is on the list! German man: It's still the same here. Nothing's changed. Polish man: I can hardly imagine that any shop is able to open. French woman: If we go out, one person from each household will be allowed to go get some food per day. In this group communication, they recalled their past lockdown experiences when the initial COVID-19 outbreak was growing into pandemic in late January through the middle of March 2020. We also remember that the Chinese government implemented a nationwide lockdown in response to the rapid rise in infections in Wuhan, so Shanghai residents were subjected to multiple lockdowns. Yet, their emotional challenges in the current major lockdown differed greatly from the Wuhan lockdown because in 2020 there was fear and uncertainty about an unusual pneumonia, while the 2022 Shanghai lockdown seems to be more about stress and anger due to the uncertain policy that was rapidly implemented and the rumors being spread . Expats in the EU-Citizen-Group also discussed their confusion and uncertainty about the hope that they could go outside and purchase fundamental necessities. Here is the conversation: French man: I guess, we will be partially allowed out, but only without motor vehicles. British woman: Actually, we should be allowed to walk inside the compound tomorrow, but we haven't heard anything yet. Let's see. German man: We also got two tests the day before yesterday, but no news yet. We'll probably stay inside for another 14 days anyway. There're still growing cases in our neighborhood. Despite expats' wishes, the long-term lockdowns have continued, though the government has partially unsealed compounds starting on April 11. To be unsealed, the entire compound must be free of infection for more than 14 days . The expats' emotional discomfort eventually became anger. For example, a British woman in the High-Level Foreign Talent-Group-1 expressed: That actually makes me really angry when people just say everything's going to be alright. Yes, there's a lot that I'm grateful for, but there was a lot that could have been avoided because I honestly do believe there were people [the Chinese government] with inside information who knew this was going to last more than four or five days. They knew this, and that's what makes me angry. An American man in the High-Level Foreign Talent-Group-2 expressed similar sentiments: "I really believed that it would've been just four days, but my compound committee said, 'we will have to stay home for a few more days'. I was confused about it, but it has just continued. Now, my faith's gone". --- Food and Drink As already noted, the current Shanghai lockdown is much different than previous lockdowns because all compounds were completely sealed from 28 March to 11 April. In previous short-term and long-term lockdowns, residents could order food and drink. However, they were not allowed to order these essential necessities. Moreover, as the number of infections has continued to grow, numerous compounds were sealed. Expats are exhausted physically and mentally, having self-PCR tested and reported it to their compound committees between midnight and 8:00 am . Given this, the conversation between expats in High-Level Foreign Talent-Group-1 revealed the severe situation: Canadian Man: So, I purchased enough food and stored up to five days. And then I realized the situation was not true. We filled our first trial, and yesterday we tried another order. But they say they will not deliver our order . . . They don't know when they can deliver our order to us. So, at this moment, I still have a few packs of Macaroni in my stock. But other than that, I'm trying to get help from my neighbors . . . The greatest challenge to me this time was that I feel a lot of psychological pressure because whenever I turn on the computer and look on the Internet or sometimes watch TV, all the news is heartbreaking. British woman: I am sure of this. I could have stocked up. There was food in my neighborhood. I could have stocked up on things I eat because what's being offered to me. I don't eat this stuff [Chinese food]. So, I could have stocked up on things that I eat. I could have had stuff to last me two months. But you know, I believe don't panic and don't be greedy, don't hold. Just have enough for four or five days. So, this is what's making me really angry. I feel really like so naive and so foolish. Like normally I'm too angry about this. Some people exploited this. Some people with inside information. Korean man: I usually enjoy ramen. What I mean is Korean ramen. I went to a local Korean supermarket and bought some different sorts of ramen. I also bought some Korean cookies and drinks. I ate ramen for about a week straight and felt extremely nauseous. I thought it could be okay just for several days. I was worried about my health. I really do feel like I'm in jail. Although food and drink were available as the government distributed them, or the expats' companies delivered provisions, some expats expressed frustration regarding food and drink, especially the cultural practice that have their own choice of meal. They also discussed increasing food prices or pointed to difficulties in purchasing drinks such as wine or beer. Notably, for German people, beer and fruit are significant when they have meals as a cultural practice. For French and British people, cooking, baking, and drinking wine are also important as cultural practices when they have meals. Expats' texts in the EU-Citizen-Group demonstrated these frustrations: German woman- German man: At least, our embassy must solve these issues. Expats in other groups also expressed cultural issues. For instance, a British woman in High-Level Foreign Talent-Group-1shared, "I can't have three meals [of Chinese food]. I really can't. Psychologically, I cannot. I need noodles that I usually enjoy." A Turkish man in High-Level Foreign Talent-Group-1 who is a practicing Muslim also raised concerns about his food choice. He shared, "Actually, we have very specific cultural and religious backgrounds. That's why we don't prefer to eat pork. We are pleased to get some chicken or beef. These are basic needs for us. I hope I've made myself very clear". --- Family Wellbeing: Potential Separation from Children and Pets On behalf of the EU member states , the Consulate General of France in Shanghai represented their complements to the Foreign Affairs Office of the Shanghai Municipal People's Government and drew their attention to the following matters. The EU member states demanded that under no circumstances should children be separated from their parents. For asymptomatic or mild infection, it was best to set up a special isolation environment and communicate with key staff in English. Notably, the EU member states emphasized the need for timely and effective access to emergency medical assistance when required by their citizens during lockdown . During the lockdown, expats were anxious and concerned about their family wellbeing, especially the potential for separation from their children and pets. From a cultural perspective, many foreigners consider pets to be family members. In our observations, there was growing concerns among expat groups with children and pets, and they posted about their emotional states and discomfort regarding potential separation issues that were consistently shared by their friends or civil entities. There was also increasing fake news and rumors regarding animal abuse . Concerning the potential for separation, a German man in the EU-Citizen-Group stated: "I heard that a foreign man was positive and just returned to his family, but he was told that he is positive again, so he was required to go to the camp or mobile hospital again. He has a little daughter and argues with the government officials and refuses to be in long-term quarantine again." An American man in the U.S.-Citizen-Group also heard the story, whether it was a rumor or not, and stated, "The story was spread on social media for a while but is no longer found elsewhere . . . I presume [nationality], but not making any official word to that, references his foreign friend in [another city] who experienced something like this. So, we can obviously assume this is an accurate account." A British woman in the High-Level Foreign Talent-Group-1 expressed, "They are taking away our kids from us! I'm not afraid of COVID infection but anxious about taking our kids. It's not appropriate." Likewise, expats who have children have been paying more attention to potential separation issues and feeling pressure to maintain their families' health conditions. With respect to potential separation from pets, for example, a post on WeChat moment shared by an American woman in the High-Level Foreign Talent-Group-1 read: American Woman: Urgent help needed! Our shelter will be in lockdown! As you know, there is going to be a 5-day lockdown which means that nobody will be able to come and take out/feed or walk our little shelter dogs. I'm in an absolute stress about this because it means for 5 days our shelter will be empty and the dogs will all be sitting in cages . Additionally, on 6 April 2022, an article was shared widely on social media platforms such as WeChat moment and That's Shanghai that described "a corgi [dog] was killed by a volunteer" right after "its owner's COVID-19 test result was positive and prepared to go into isolation." [40]. A conversation between two American men in the U.S.-Citizen-Group discussed this issue: American Man-1: Crazy American man-2: [Friend] posted it on her moment. American man-2: It was exactly two years ago. I was jogging and a lady was walking her dog and used a stick to beat the dog in public. American man-2: For us, pets are also family members. American man-1: Yep. These guys are family to us. American man-2: I also see Chinese people love pets. They walk their dogs and even hold cats outside while they're walking. American man-1: It's a very stressful time. Those volunteers who take the infected away consistently. I can see they're frustrated, but they have no such authority to kill animals. Overall, expats with children and pets were concerned about the potential for separation, dealing with their emotions when they heard about events on social media, whether rumors or not. They acknowledged that it was extremely stressful for everyone. Yet, they argued that those with policy-making authority have no right to take their children or pets. --- Social Support from Chinese Citizens The international diplomatic communities shared their ideas to protect their citizens in Shanghai in the course of the Omicron outbreak. The EU member states emphasized the need for timely and effective access during the lockdowns to emergency medical assistance when their citizens required it. If citizens of EU member states and their families could enter Shanghai's two international airports [Pudong and Hongqiao airports], the Chinese government should allow them to leave . On 8 April 2022, the U.S. Consulate General in Shanghai urgently emailed and invited 500 citizens to attend an online meeting via Zoom. The consul general discussed a few key agendas including: U.S. citizen services; food and water; child separation and infection treatment; and evacuation plans . Briefly, U.S. citizen services were temporarily closed on 30 March, but the Consulate General would resume regular services as soon as possible. Moreover, the Consulate General had been communicating with the Shanghai government and negotiating with them regarding the food and water as well as delivery services. Additionally, as the one of the major concerns involved the potential for child separation and infection treatments, the Consulate General would prioritize citizens' safety issues. Notably, regarding the evacuation plan, there were commercial flights but no guarantee that every citizen could utilize them. Therefore, there would not have been U.S. government assistance in the event of an evacuation. However, the Consulate General would closely interact with the international diplomatic community, especially EU and French diplomats, to protest all fundamental requests . The U.S. government recently implemented an executive order in which non-emergency consulate staff, diplomats, and their families in Shanghai return to the U.S. prior to 11 April. Thus, their business and services have provisionally stopped , [11]. Despite the international community's announcement, expats have not been supported by their own embassies and have faced various emotional challenges. In our observations, many complained about their circumstances due to the lack of support from their own embassies and consulates, whether their countries were diplomatically advanced or not. Further, most conversations in WeChat groups did not demonstrate prosocial behaviors even in inner cultural or selective cultural groups. However, we found that Chinese people provided some positive social and emotional support and at times, and that they developed intercultural collective prosocial behaviors between expat and Chinese groups but not with their international diplomatic communities at large. --- Survival Necessity Exchange After 5 April 2022, many expats posted in their WeChat group chats or on their WeChat moments about dwindling supplies of food and drink as well as other fundamental necessities, posting pictures showing empty pantries or refrigerators. These issues were also common for Chinese residents. Yet, Chinese groups showed collective prosocial behaviors by sharing what they had. They left food or drink in front of their neighbors' doors. For example, residents in the Chinese-Resident-Group expressed: Chinese-1: Can anyone cook for me? I can pay for my meal. Chinese-2: This time, you can't even leave the house, and you can't go downstairs. Chinese-3: Notice, for those who can't cook, I can cook for you and satisfy your stomach. Chinese-4: Do you mind if I spare some? I'll put something to drink in front of your doors. Expats also engaged with these activities, sharing what they had with their neighbors. For instance, two expats' communications with Chinese people in Volunteer-Group-2 showed: American-1: I have over sixty cans of soda. I'm willing to share these. Also, for parents who have children, I have a bunch of cookies. I can deliver these items to you. Chinese-1: Thank you. Would you like some beer? Turkish man: Anyone who wants to try Arabic coffee? I'll offer free coffee. Chinese-2: Checked the message now. Is it still available? After 11 April, many Shanghai residents were able to purchase food online. Since expat and Chinese groups have been building international relationships through prosocial behaviors during the major lockdown period, sharing food and drink has become a common cultural practice, promoting social and behavioral changes in positive ways regardless of national origin, race, or ethnicity. --- Emergency Volunteer Groups from Compound Committees and Companies For expat groups, volunteer groups were formed from their compound committees and from their companies. Due to the lack of delivery services, expats' companies, including educational institutions, could not support their foreign employees. Thus, compound committees formed volunteer groups to support these expats. Individual residents also volunteered to support them. Volunteer groups were composed of fluent English speakers. They generally supported delivery services. They also checked PCR test schedules for the expats. Key administrators or personnel staff members from their companies also joined the voluntary WeChat group, closely interacting with their residents. For example, a conversation in Volunteer-Group-1 demonstrated a form of volunteerism: Chinese Personnel: We are sending food packages to you. We need your home addresses and cellphone numbers. Please make sure that your phone is working fine, so that your compound committee can send the food package to you. British Woman: I'll let the volunteer know. Thank you. I don't speak Chinese, but she does, and she needs to arrange delivery. Chinese Personnel: That sounds like a good idea. Please give me her phone number. Additionally, another volunteer group also showed similar types of service, consistently checking on fundamental survival necessities. For instance, members in Volunteer-Group-2 showed a certain volunteerism: Chinese Personnel: We will contact the governmental office in your neighborhood and try to send them to you. Iraqi woman: Hi, I need basic supplies like vegetables, eggs, and milk. Turkish man: The same supplies to me as well. Chinese personnel: Okay. I'll give the list to our boss. Iraqi woman: All thanks to those who contributed to sending these foods. Turkish man: Thanks for the provisions you sent us. The Shanghai government also sent food and drink to their residents. In this regard, volunteers in compounds informed them about specific items to be delivered to expats. Overall, while numerous expats were facing emotional challenges without fruitful support from their own embassies or their families and friends in their native countries, the local government and its authorities, employers, and neighbors in Shanghai supported them in a wide variety of ways. --- Discussion Despite the various emotional challenges, we found that expat groups actively sought to develop coping mechanisms, attempting to find sources of social support from host country members. All these elements can boost resilience and help reduce emotional challenges. From a cross-cultural perspective, we perceive that resilience is a form of collective behavior, respecting or learning about the cultural values shared by locals. The form of behavior can affect the progress of developing coping mechanisms such as denial, negotiation, and acceptance step by step. Some of the expats actively engaged with collective resilience among their neighbors and learned how to cultivate prosocial behaviors [13]. Previous research showed that expats often deny their emotional challenges and hesitate to communicate with locals, especially when their cultural norms differ significantly from the host country's culture [29]. Yet, the fundamental message for expats was that once they negotiate or accept the challenging issues , host country members can take on mediator roles to help promote social and behavioral changes, adjusting to a new culture where they are settling in and thereby overcoming social and emotional barriers [17,25]. Chinese collectivism is unique in that resilience is the idea of the nexus between families and societies, which not only shows the social importance of human-to-human connection but also the progression of sustaining safety [1]. Shanghai is in the Yangtze River Delta, which historically has been a rice farming region with an agricultural legacy spanning 5000 years of Chinese history. Scholars have long conceptualized the cultural differences between the historical rice farming society in China and foreign societies and have faced the challenges foreigners face in adjusting to the local society, especially its historical collectivist cultural patterns. Even though Shanghai is China's most economically advanced city with one of the nation's largest populations, its local culture originated in the richest rice paddy farming in the country. Thus, in this particular geographical and cultural context, the cultural legacy of rice farming on Shanghai's collectivism could promote resilience and coping mechanisms, helping to heal expats' emotional challenges or mental crises [1,35]. In a broader global context, the largest international and cultural groups come from North America and Europe, which values Western capitalism and individualism and focuses on the stressors that affect the individual and personal life. Meanwhile, local Shanghai collective culture focuses more on their society, connection, safety, and emotional management. This factor could differ greatly from other Asian countries such as Japan and Korea. Scholars recently raised critical questions about the societal changes and cultural shifts in Japan and Korea as they become more neoliberal and individualist societies [13,41,42]. From these standpoints, expats and their Chinese neighbors have different cultural values and social practices. However, some expats created positive attitudes, making efforts to communicate with locals in order to develop a general sense of connection. In so doing, they could develop coping mechanisms such as sense of belonging, perseverance, and resistance to risk factors , when they could not receive support from their embassies. With respect to secondary coping, it is important to recognize that expats' language barriers and lack of cultural knowledge could have been minimized when they were interacting with locals and enduring difficulties together, especially the impact of the "Zero-COVID" policy that mandated a series of lockdowns under the government's strong social control. While expats were under pressure due to potential separation from families, residents in Shanghai could feel empathy for the expats as a vulnerable population. Family separation could happen to anyone during this timeframe. Yet, when they rely on each other, they can increase mutual international understanding and intercultural awareness, seeking relief through avoidance, acceptance, or cognitive reframing . It has been found that coping preferences change according to the cultural practices through which individuals experience immersion in different cultures [29]. Frustration with unexpected situations increases the degree of anxiety. The pandemic life during a lockdown can be seen as an uncontrollable stressor, and secondary coping could provide relief [14]. These types of stressors could also be due to the cultural distance that may have increased acculturative stress, which may lead to greater difficulties in acculturating successfully [13,43]. Finally, we found an enormous amount of frustration, stress, and other emotional challenges among expats living through the Shanghai lockdowns. They were happy to live in the city and experienced a high quality of life, even during the COVID-19 era. Hence, their emotional challenges amid the Shanghai lockdown were much different than the Wuhan lockdown or citywide lockdowns during previous variant outbreaks because of the frequent policy changes. In this regard, people could not prepare enough survival necessities [6]. However, we also identified certain forms of coping mechanisms among residents in Shanghai regardless of nationality, ethnicity, or race: individuals provided more inclusion and social support in the time of public health crisis. From this standpoint, scholars should explore positive influences rather than challenges in COVID-19 research, thereby promoting collective resilience that establishes intimacy, social bonds, equity, inclusion, and prosocial behaviors [37]. --- Implications, Limitations, and Future Directions There are a few practical implications. Initially, we addressed severe emotional challenges among expats amid the Shanghai lockdowns and potential opportunities to establish coping mechanisms. Notably, concerning the use of intercultural collective resilience, secondary coping especially can bridge intercultural communication gaps between expats and host nation members in a public emergency. As we have seen, foreigners witnessed prosocial behaviors among host country members and showed a willingness to accept local cultural practices. These positive aspects of coping mechanisms could increase cultural awareness, drawing social support from locals. Thus, we suggest cultural coaches, trainers, counselors, and consultants consider how their clients can develop mindfulness and appreciate differences among people, which will aid them in overcoming various barriers as committed members of a contemporary global society. Furthermore, over the span of two years and counting of the COVID-19 pandemic, Shanghai's precision prevention model was highly regarded by the entire Chinese society. Accordingly, expats enjoyed their social and cultural life as well as leisure activities, contributing to promoting consumption culture. However, they have gone through multiple lockdowns over the course of three months , feeling extreme stress, exhaustion, and burnout. A recent online survey conducted in Shanghai revealed that of the 950 expats who responded regarding their future in China, 85% would rethink their stay in China, 48% plan to leave as soon as the city is unsealed, and 37% may stay if the dynamic Zero-COVID policy is eased [44]. Hosting expats is crucial for Shanghai as a global financial hub because they significantly contribute to boosting the local and regional economy as well as the national economy (e.g., business, finance, and banking [44]. Expats have also dedicated themselves to reinforcing the infrastructures for science, technology, engineering, mathematics, information and communication technology, vocational education and training, and linguistic diversity [2,20,45,46]. Thus, it is significant to muse on Shanghai's currently deteriorating image as a prominent cosmopolitan city. Key policy decision-makers in public health, foreign affairs, and urban planning should make a collective effort to reform appropriate policies and practices, thereby reestablishing the city's positive image. In the meantime, they need to develop retention strategies for expats by providing essential alternatives so that they decide to stay. There are a few notable limitations. At the time of writing, the Shanghai lockdowns are still ongoing. While we focused solely on the case of expats' survival, studies of host country members' experiences have so far been limited. We found how volunteer groups were urgently formed to support expats. It would be meaningful to explore how their collective identity was expressed while coping with the numerous structural problems of the "Zero-COVID" policy. Hence, we suggest future scholars consider how Shanghai residents dealt with their emotional challenges and established coping mechanisms in a time of public health crisis. Moreover, it is also instrumental to investigate how business leaders from global companies with local branches in Shanghai or other key economic cities in China foresee the dynamic of the 'Zero-COVID' policy. Future scholars should explore their perceptions about the prospects for both the Chinese and world economy when Shanghai is locked down. Furthermore, although this study used a digital ethnographic approach by observing 1558 WeChat accounts divided into seven chat groups and selecting texts upon the participants' consent, the number of subjects was limited. Hence, we recommend that future scholars should conduct a quantitative study to support the current study's findings and attempt to increase a better understanding of the concepts of resilience and secondary coping amid a long-term lockdown. Additionally, during the time of the COVID-19 pandemic, numerous medical staff and healthcare providers have been making collective efforts to support patients and normalize the explosive chain of lethal transmission. Despite their endeavors, they often face job burnout and moral injury that could harm their professionalism such as righteousness, knowledge, and ethical behaviors upon dominant ideology and social norms [15]. Our study identified the adaptive nature of humans, even with different cultural values to survive and overcome the unexpected socio-ecological system crisis. In this regard, volunteer group members from the host country developed social and emotional support networks. Yet, along with a growing concern about the dynamic Zero-COVID-19 policy in China, it is worthwhile to investigate their moral injury and burnout factors. Finally, as numerous expats have been through a series of lockdowns in Shanghai without support from their international diplomatic communities, it is worth exploring how global public media platforms have portrayed lockdown issues. Future scholars should concentrate on how journalists and columnists viewed the myth of the "Zero-COVID" policy. --- Conclusions This study used a digital ethnographic approach to explore how expats experienced the Shanghai lockdown due to the spread of the Omicron variant outbreak. Our findings underlined the emotional challenges faced by diverse expat groups and the challenges they faced in seeking out coping mechanisms as well as gaining social support from host country members. Particularly, our study highlighted how those who may have had a positive image of Shanghai felt stress, frustration, and anger. Yet, our study also illuminated how their Chinese neighbors and employers served them as prominent mediators, establishing urgent volunteer groups to provide necessities. It is crucial to provide close attention to those vulnerable populations who face certain social and cultural barriers when compared to host country members. Accordingly, we suggested some notable practical implications for key policy decision-makers, business leaders, and a wider variety of stakeholders who can intervene into the visible structural problems of certain policies. Overall, we emphasize the significance of intercultural collective resilience in global migration research, especially when dealing with the emotional challenges faced by expats and the sources of social support in the specific regional and geographical contexts of Shanghai and China. --- Data Availability Statement: Data is not publicly available due to anonymity concerns. Readers interested in the data can contact the first or corresponding author upon reasonable request. ---
This study presents a digital ethnography of expats' survival amid the Shanghai lockdown during the Omicron variant outbreak. This study drew insights from studies on resilience and secondary coping within the context of global migration to comprehend the diverse emotional challenges faced by expats in a series of lockdowns and persistent nucleic acid amplification tests. Thus, this study asks what the major emotional challenges expats faced and what sources of social support they could draw from citizens in their host country during the Shanghai lockdown. Accordingly, this study collected WeChat group conversations to draw empirical findings, promoted scholarly conversations about fundamental survival necessity, and traced the process for establishing intercultural collective resilience with citizens from their host country. Overall, this study emphasized the significance of host country members who can promote certain coping mechanisms for their visitors in the specific regional and geographical context of China.
Introduction An individual's long-term eating habits is established in childhood-a vital period that may influence one's future risks of metabolic diseases, being overweight or obese, and other nutrition-related illnesses [1][2][3]. However, the majority of children's diets worldwide are unsatisfactory or unhealthy [4][5][6][7]. This is evidenced by the trend that the number of overweight and obese children worldwide has grown ten-fold in forty years [8]. Globally speaking, there are around 42 million overweight children, more than 35 million are from developing countries [9]. In China, according to the China Nutrition and Chronic Diseases Status Report , 19% of children aged 6-17 and 10.4% of children under 6 years old were overweight and obese, respectively. This shows that "overweight and obesity" among Chinese children is gradually becoming more severe and the incidence of children with chronic diseases is on the rise. However, significant inequalities exist between poor rural areas and more affluent urban areas in China. While the dietary composition of Chinese children has changed rapidly and childhood obesity is rising, undernutrition is still a threat that might hinder the nutritional improvement for generations in some geographic regions in China [10]. Children's undernutrition remains a prominent problem in China's underdeveloped regions and rural areas [10][11][12]. Due to rapid economic reform and urbanization, China, as with other countries in the Global South, has experienced a transition from undernutrition to the coexistence of overnutrition and undernutrition-a so-called "double burden" phenomenon [11,13,14]. Many nutrition-related diseases might be prevented or improved through changing lifestyles, particularly by adopting well-balanced diets [15]. In China, family and school are the most important environments for children to live and socialize in; therefore, individuals in these places strongly impact the behavioural patterns of children, including their eating behaviours, which have life-long developmental effects . From a sociological perspective, of all the "stimuli" in a child's environment, other peopleparticularly those who are closest to the child-will arguably have the greatest effect on the child's behavioural patterns [16]. Albert Bandura, a psychologist who proposed the social learning theory and examined the influence of role models and imitation regarding childhood aggression [17], revealed that, for many people, behaviour is shaped through observation and imitation of other people. In the family environment, it is commonly believed that a child's dietary behaviours is significantly influenced by his/her parents, who often act as gatekeepers and role models that the child will follow and learn behavioural patterns from [18,19]. Moreover, individuals in the same household often eat together; this is especially true for children, who can also be affected by other family members, such as grandparents, siblings, and other relatives in their early lives [20]. Meanwhile, a number of studies [21][22][23] reported that school also contributes to a child's food choices. In a school setting, teachers who care more about their own dietary health also tend to be more interested in the health of their students. Moreover, it is believed that teachers could also act as models to improve the healthy behavioural patterns of students [24,25]. In addition, because of the pressure from peers, children may have to buy and consume unhealthy foods in schools [21] to fit in. Given the increasing concerns about the nutritional statuses of children [26,27], many studies have shown strong international interest in exploring the eating behaviours of children, including their associations with different social members. Although studies in this area have rapidly increased, there are two noteworthy research gaps. Firstly, most studies have focused on family environments and targeted the correlation between the dietary behaviours of parents and their children [20]. However, the family environment is just one of many complicated and intersecting factors that impact the eating behaviours of children [28][29][30]. For instance, it is common for most school-age children, particularly those from the growing number of families with two working parents, to consume one or two meals at their schools . Moreover, as children grow older, they become more susceptible to their peers when making food decisions [20]. Consequently, it is pertinent to understand the influences of all main family members and school members on a child's eating behaviour. Another gap is that the majority of studies focus on western countries, particularly North America and Europe. There are a limited number of studies examining how family and school members affect the dietary behaviours of children within the context of the unique Chinese food environment and culture. Therefore, this narrative review aims to probe the roles of family and school members in impacting children's eating behaviours in China. There are three primary purposes of this review: to summarise the results and implications of the included studies conducted in China; to identify important factors within the families and schools that may affect the eating behaviours of children; to provide useful insights for relevant stakeholders, such as policymakers, government agencies, agri-food industries, and public health institutions, to promote healthy eating behavioural patterns among children in the Global South. --- Methods --- Search Strategy The literature search was conducted on four electronic databases-Scopus, Web of Science, EBSCO, and PubMed-in October 2020 and updated in February 2021. The following combinations of keywords were used: parent*, mother, father, sibling, caregiver, carer*, grandfather, grandmother, family member, peer*, friend, teacher, eat*, diet*, child*, adolescent*, China, Chinese, Hong Kong, Taiwan, Macau. Originally, a total of 94 records were identified on the subject: 41 in EBSCO, 45 in Web of Science, and 8 in PubMed. No search date restriction was applied, as studies on this topic in the context of China have just emerged in recent years, with the earliest literature based on search results appearing in 2008. --- Study Selection After using the search strategy and removing duplicates, 48 papers were obtained. Then, these papers were further selected based on the eligibility criteria: language in English or Chinese; published in peer-reviewed journals; available in full-text; reported whether family and/or school members impacted the eating behaviours of children, as well as what factors could explain the effects. In total, 18 of 94 studies identified in the review met the eligibility criteria. The flow chart of the article selection process for this review is shown in Figure 1. --- Abstacts screened Full --- Results --- Descriptive Information The summary of the descriptive statistical information of the articles included is shown in Table 1. Descriptive results of the articles were calculated manually during the analyses. The included studies were classified according to study design and research objects. Table 1 shows that, of the 18 studies, over half of the studies focused on parental influence over the eating behaviours of children, with only 1 study examining both parental and teacher influence. No studies so far have looked at the influence from siblings and peers. Location wise, 14 studies were conducted in mainland China, 3 in Taiwan, and 1 in Hong Kong. The majority of studies used a quantitative approach , with 13 adopting a cross-sectional design. Only 3 studies used a qualitative approach by applying methods of multiple cases studies, food diaries, and semi-structured interviews for data collection. In regard to the study population's age range, 6 of studies focused on pre-school aged children , with another 6 on children of mixed ages-both pre-school and school-aged children; 5 studies focused on school-age children only, and 1 study looked at the eating behaviours of adolescents. The included studies measured children's eating behaviours, according to their different methodologies. Studies using a quantitative approach ) usually measured children's eating behaviours by questionnaires on food frequency as well as food knowledge and attitude, reported either by caregivers or children themselves. For research that used qualitative research methods , they collected data using multiple cases studies, food diaries, and semi-structured interviews, respectively. --- Main Findings Characteristics of the included studies are shown in Table 2. The method of "thematic analysis" [31], which could identify, analyze, and report patterns within data were applied to this study for summarizing the results of the included papers. The main findings of the included studies are summarized in the following seven themes: Theme 1: Social-Demographic Characteristics Sub-theme A: social-demographic characteristics of family or school members. In most studies, social-demographic variables, such as education, gender, occupation, as well as monthly income of the family and school members, were considered for their impacts on children's eating behaviours. For example, the study by Hu et al. [32] argued that preschoolers whose fathers had less educational degrees were more likely to show problematic eating behaviours, such as picky eating. Besides, it demonstrated that parental occupation and monthly household income were significantly correlated with children's dietary behaviour levels. Moreover, He et al. [33] conducted a study involving a sample of 11,270 parents and 1378 teachers, noting a correlation between more than one parent having a high school education and a child's calorie-rich eating habits; these associations were negatively correlated among urban school-aged children and were positive in rural areas. This may be because of the effects of other confounders, such as economic level and nutritional knowledge between education level and a child's high-calorie diet. Generally, parents with education levels higher than high school, in cities, were more likely to have college degrees or above. Therefore, they had higher economic incomes and nutritional knowledge, which resulted in their controlling a child's high-calorie diet. However, in rural areas, parents with more than a high school education may have had a relatively high income, but still lacked nutritional knowledge, so they might have given their children more pocket money to buy high-calorie foods. The same authors [33] explored the influence of both parents and teachers on school-age children. The results showed a positive association between at least one parent with more than a senior high school education and healthy dietary behaviours in the kids, while there were no correlations between the education levels of teachers and eating behaviours of children. This may be due to a large gap between the parents' educational levels, while teachers' education degrees are usually similar. Furthermore, some researchers studies [34,35] explored the influences of parents' work characteristics, residences, and religiosity. A study [35] involving a Taiwan sample suggested that children with at least one parent who worked irregular hours were more likely to skip breakfast and have unhealthy, non-core food intakes every day, compared to kids whose parents had standard working shifts . Another cohort study [36] tracking from 1991 to 2006 reported that rural children had more traditional diets than those who lived in cities. In addition, the research [34] conducted a bivariate correlation analysis between the frequency of parents' participation in religious activities and food intake in children, in Ningxia province, China. It revealed that, among those of Hui ethnicity, the frequency of a mother's religious attendance was statistically negatively correlated with a child's vegetable consumption. Sub-theme B: social-demographic characteristics of children. Some studies demonstrated that the age and gender of children were important influencing factors for their eating behaviours. One study [32] collected 1781 questionnaires among parents of preschoolers; the kindergartens of Chongqing claimed that the child's age was negatively correlated with dietary behaviour levels. The reason may be that the study only targeted preschool children. Preschoolers' diets are chosen by the parents, when the kids are young; at that time, parents can control what their kids eat; however, as these children get older, they will have more autonomy to choose their preferred foods and they are likely to purchase some unhealthy food. Interestingly, another study [37] pointed out that, compared to female kids, it was more likely for carers to underestimate the body weight of male children; thus, they had less control over the diet intakes of boys. Theme 2: Parental Food Intake In the family environment in China, parents serve as role models for their children's early eating behaviours and even take responsibility for their food choice decisions. Therefore, most children will adopt and imitate their parents' dietary patterns. In the study [38], researchers collected data on participants' food intakes based on the China Health and Nutrition Survey 2011. These researchers divided "food intake" into 10 categories: grain, vegetable, fruits, meat, beer, fish, egg, dairy, drink, and snack. They found a statistically significant positive correlation , for each kind of food, between the food intake of children and their parents. Moreover, the influence of a mother's food intake on her children was stronger than the father's . Furthermore, this study reported that the correlations were more significant in the rural regions of China than urban regions. Additionally, it was found that overweight and obesity in children were relevant to parental food intake; the association was stronger in young children below 12, but became weaker among children between 13 and 18. Another study [39], using longitudinal data from the CHNS , found positive parent-kid associations for diets. Meanwhile, the amount of energy Chinese children got from animal-based foods, non-homemade meals, and snacks had increased by 10% in a 20-year period. The findings of this study show a need for interventions, aimed at both children and parents, regarding healthy eating behaviours in the family context. Theme 3: Family or School Members Nutritional Knowledge and Health Awareness Zeng et al., to investigate the associations between caregivers and their children's dietary behaviours, conducted a study [40] involving 3361 children aged 2-7 years old in Chinese rural areas. They developed a questionnaire using 10 nutritional questions to measure caregivers' nutritional knowledge levels, finding that, having a caregiver whose nutritional knowledge was measured at a lower level was associated with more frequent unhealthy dietary behaviours among the children. These behaviours included resistance to milk, fussy eating, skipping breakfast, or eating irregular meals. Another study [33] revealed that health awareness and active health attitudes of teachers were positively correlated with their students' healthy dietary behaviours, while unhealthy eating behaviours were contrary. --- Theme 4: Parents Perceptions of Their Children's Body Weight Parents should evaluate the body weights of their kids, objectively, if they want to promote positive improvements in their diets and adopt appropriate diet control strategies, accordingly. A series of studies [32,37,41] examined the relationship between parents' perceptions of their sons' and daughters' body weights and their eating behaviours. Parental inaccurate cognition of a child's weight was more likely to result in the child's unhealthy eating behaviours compared with a child whose parents had a correct perception [32]. A study by Tang et al. [37], involving 364 Chinese preschoolers in Changsha, a city in central China, showed that it is more probable for caregivers to underestimation their children's body weight in urban areas than rural areas. If caregivers have boys, or if they come from low-or middle-income families, it is more possible for them to have inaccurate perceptions of the overweight-obese status of their children. Furthermore, this study showed that caregivers who underestimated the weight of their children were less likely to be concerned about the nutritional statuses of their children, control the food intake of their children, and may have had children with poor appetites. In addition, another study [41] that examined maternal influence provided evidence that a mothers' body weight concerns, and the psychological characteristics associated with these concerns, positively related to the dietary attitudes of their kids. --- Theme 5: Family Members' Feeding Strategies The feeding strategies of caregivers also crucially influence the food preferences of children. A study conducted by Yuan et al. [42] among preschool-aged children in Jinan and Xi'an, China, reported a link between the feeding types of caregivers and their kids' eating behaviours. They found that caregivers who encouraged healthy eating, responsible feeding, supervision of food intake, and controlled feeding were more likely to promote healthy dietary behaviours among their children, particularly more initiative eating and less frequent unhealthy eating behaviours, such as emotional eating and food fussiness. Besides influencing the eating habits of children, another study [43] suggested that caregivers' feeding styles could also affect the dietary intakes of children. Caregivers' instrumental and/or emotional feeding patterns may relate to insufficient intake of fruits, vegetables, and breakfast in children, showing a positive correlation with high-calorie food consumption. In contrast, children were more likely to eat fruits, vegetables, dairy, and breakfast regularly if their caregivers adopted encouraging feeding approaches. In addition, this study showed that children tended to eat more fruits, vegetables, breakfast, and fewer energy-dense foods if their caregivers controlled their diets. The enlightenment from the results of these studies is that the feeding strategies of caregivers are important influencing factors that should be considered in related studies concerning children's eating behaviours. Although existing studies on this topic, in a Chinese context, suggest that efforts to prevent malnutrition in a child may benefit from targeting not just what a child eats, but how he/she eats [44], there is a lack of comparative research on the differences between food parenting strategies of different caregivers, such as fathers and mothers, which may contribute to improving the interventions, by targeting the role each parent plays in promoting a child's healthy eating habits [45] in China. --- Theme 6: Family Relationships Tensions in relationships between family members, such as family conflict, can also affect a child' eating behaviours. In a qualitative study [46] using multiple-case studies, the researcher identified three different kinds of parent-child conflicts from the psychological consultation data collected among 10 families whose daughters suffered from eating disorders: power struggle and relationship control between generations, becoming mature or remaining childish, and pursuing personal dreams or meeting parents' expectations. This study further analyzed that parents tended to follow a therapist's guidance, believing that, for their kids, food was the most effective medicine. Therefore, these parents could insist on refeeding their kids. However, this kind of persistent behaviour could easily be regarded by children as a means of control or coercion. Instead, this may provoke these children to become more stubborn in their eating resistance. Similarly, Zhu et al. [47] conducted a study involving 594 high school students, reporting that the control and negative emotions of parents significantly correlated with children's emotional eating patterns. It was shown that parental control was the mediator between negative emotions and emotional eating, which accounted for a 52.6% explanation degree of the relationships between them. In addition, the study conducted by Chao et al. [48] among 600 Taiwanese children suggested that children's picky eating patterns were often related to parents' inappropriate interactions, such as threatening, over-snacking and inappropriate nutrient supplication. The study argued that parents who were anxious about their children's diets and psychological development were more likely to identify inappropriate eating behaviours in children who were picky eaters. --- Theme 7: Caregivers' Intergenerational Differences It is a common arrangement for children to be cared for by their grandparents in the childcare culture of China [49]. Therefore, Chinese grandparents play an important role in multigenerational families [50]. Some studies [51][52][53] compared the effects of intergenerational differences of caregivers and the eating behaviours of children. According to Wang et al. [51], when it comes to feeding, it is more common for grandparents to adopt a permissive or indulgent way, while parents show more gentle persuasion or use treats and bribes. Besides, the study [52] conducted by Su et al. among 1-4 year old "left-behind" children in Anhui province reported that left-behind children might become the higher risk group in regard to childhood malnutrition, compared to those children with parents at home. One possible reason may be the unhealthy feeding patterns offered by the grandparents of these left-behind children. Another qualitative study [53] in a rural township of Henan province presented similar results, they found that left-behind children who were intergenerationally fed-particularly those cared for by grandparents who lived through China's Great Famine in the 1960s-were more likely to suffer from malnutrition. --- Discussion --- Positive and Negative Aspects of Family and School Members' Effects This review identified five factors that have positive effects on the dietary behaviours of children-caregivers' high education level [32,33], mother's occupation [32], good parents and teachers' health awareness [33], positive feeding style, such as encouragement of healthy eating [42,43], and controlling overeating [43]. However, there are some inconsistencies in these research results showing positive impacts. In one study [33], there was a positive correlation between kids' healthy dietary behaviours and more than one parent having an education degree beyond senior high school, while another study [41] showed no correlation between the mother's education level and her children; Hu et al. [32] claimed that only the father's educational status had an influence. The negative impact of family and school members was observed in some studies. They showed that caregivers' lack of nutritional knowledge and improper weight perceptions might result in unhealthy eating behaviours of the children. The study by Zeng et al. demonstrated that, in rural China, a low level of nutritional knowledge among caregivers was significantly associated with unhealthy eating behaviours in children, including disliking milk, picky eating, skipping breakfast, etc. [40]. Besides, if a caregiver underestimate a child's body weight, the carer might be less likely to restrict the child's diet, and not worry about whether the child is obese, and it is more probable for the child to have a poor appetite [37]. Some studies have also reported a connection between inappropriate parental interactions and the eating problems of children [48]. Caregivers' instrumental and/or emotional feeding styles may relate to a child's insufficient intake of fruit, vegetables, and breakfast, showing a positive correlation with high-calorie food consumption [43]. Moreover, children tend to miss breakfast every day and overconsume unhealthy snacks if their parents work non-standard shifts [35]. Meanwhile, there also exist some ambiguities in the studies presenting negative influences. For instance, the authors of a study [40] claimed that low nutritional knowledge in caregivers results in unhealthy dietary behaviours of children, such as disliking milk, picky-eating, skipping breakfast, or having irregular meals, but there was no correlation with snacking. In another study [38], researchers investigated the correlations between parental food intake and overweight and obesity in their kids, but did not provide a reasonable explanation for why the connections were stronger in rural China compared to Chinese urban areas. The relationships between the seven themes and eating behaviours of children from the 18 included literature are shown in Figure 2. --- Group Identity Human eating behaviours are not only biological behaviours, but also social practices. In society, food has many symbolic meanings, and it is also a means for people to establish and express relationships between one another [54]. Enlightened by social learning theory, we can extend the understanding of our results. The social learning theory was proposed by psychologist Albert Bandura in 1977. It emphasised the interactions between humans and the environment, these interactions include two main types, one is direct social interaction and the other is indirect social interaction [55]. When people make decisions, they may be impacted either directly by their acquaintances or indirectly by their social networks [56]. Family and school members play key roles in the everyday lives of children, influencing their eating behaviours. Besides parents-siblings and peers are some of the most crucial active social agents that affect the behavioural patterns and attitudes of children [57,58]. However, based on this review, most studies only discussed parental impacts on a child's eating behaviours, while very few studies examined the impacts of both parents and teachers. Studies that explore and explain the influences of siblings and peers are lacking in the context of China. In fact, peers provide an important social context in which children could gain their sense of identity through compared with others [59]. Children who consume particular foods or adopt similar eating habits to their siblings and peers might be a way for them to express "belongingness" [60,61]. In particular, as some studies have shown, people in late childhood and adolescence have strong desires to be accepted by their peers [62]. Therefore, there is a need for future empirical research to investigate the associations of social interactions with siblings and peers, the aspects of group identity, and eating behaviours of children. --- The Importance of Indirect Social Interaction Most of the studies included in this review analyzed the correlations between family members and eating behaviours of children from the direct social interaction perspective. For example, some studies have simplified the influence of parents on the eating behaviours of their children to the impacts of parental food intake and feeding styles. There were limited discussions from the perspective of indirect social interaction. Only a few studies reported on the indirect impacts, such as parental work characteristics [35], religiosity [34], and family relationships [46]. Indirect social interaction, according to Bandura, is defined as children learning how to behave by observing others in social environments [63], or by connecting with others in their own social networks [56]. In a Chinese social contextthe influence of family and school members on the eating behaviours of children is not only done by explicit information verbally exchanged between individuals , but also by observing other people in different micro-social systems [63]. Unfortunately, indirect influencing has been less studied. Hence, it is necessary to add more studies from this perspective. --- Methodological Considerations The majority of the included studies were primarily based on quantitative methods, especially cross-sectional design . Some of the quantitative studies analyzed the impacts of family members on the dietary behaviours of children by simply comparing food intake or social-demographic characteristics between them. Strong causal relationships of direct, and in particular, indirect influencing factors on the dietary behaviours of children, are difficult to draw from these types of studies. In addition, most studies in this direction are empirically research-based in certain regions of China; the studies that systematically examined the validity of individual studies and used metaanalyses to test whether those studies produced consistent results are limited. Therefore, more cross-disciplinary approaches, qualitative methodologies, as well as systematic and meta-analysis review studies are needed in this area. --- Conclusions To conclude, family and school members play active and important roles in shaping the eating behaviours of children in China, although it is difficult to disintegrate these complex factors, including how family and school members influence the eating behaviours of children, because they are reciprocally interacting. This study identifies seven themes that may explain Chinese family and school member influences on the eating behaviours of children. Moreover, quantitative research, particularly a cross-sectional study, is the dominant research method used in these studies . Qualitative research is limited, but provided some insights into the associations between family conflicts, caregivers' intergenerational gaps, and adolescent eating disorders in China. Future research should incorporate more cross-disciplinary research to add greater insight to the body of evidence. In addition, to better understand the underlying sociocultural mechanisms that affect the eating behaviours of children, we need to consider more potential, indirect social interactive factors embedded in the social contexts of the Global South, which may vary from developed regions. ---
This review explores the influences of family and school members on children in China, in order to promote healthy eating behaviours among children and prevent childhood malnutrition in the Global South. Family members and school members are defined as parents, guardians (such as grandparents and other relatives), siblings, peers, and teachers. A search of four databases returned 94 articles, 18 of which met the eligibility criteria. Most of the included studies were from mainland China; a few were from Hong Kong and Taiwan. More quantitative than qualitative studies were found, among which, cross-sectional studies were dominant. The 18 papers included in the study explored the influences of family members and school members on the eating behaviours of children, based on seven themes: (1) social-demographic characteristics, (2) food intake of parents, (3) nutritional knowledge and health awareness of family or school members, (4) parents' perceptions of their children's body weight, (5) feeding strategies of family members, (6) family relationships, and (7) intergenerational differences of caregivers. In the current analysis, parental education levels, mother's occupation, health awareness of parents and teachers, and positive feeding styles, such as encouraging healthy eating and controlling overeating, were positively correlated with the healthy eating behaviours of children. Meanwhile, healthy eating behaviours of children were negatively associated with caregivers' lack of nutritional knowledge, misperception of weight, instrumental and/or emotional feeding, and working on nonstandard shifts. More related research using crossdisciplinary approaches is needed and there should be more discussions about how teachers, siblings, and peers affect the dietary behaviours of children.
Introduction Economic modelling studies suggest taxation may be particularly effective in reducing tobacco use among socioeconomically disadvantaged smokers who have among the highest smoking rates and appear to be the most price sensitive [1,2]. However despite substantial price rises in many countries, there remains a social gradient with an inverse relationship between income level and tobacco use [3] and few studies have assessed the wider and unintended consequences of tobacco costs on highly disadvantaged smokers, particularly using qualitative methodologies. Examining the experiences and perceptions of disadvantaged smokers may help guide the development of complimentary strategies for those who are financially stressed to further strengthen taxation and pricing reforms. Price-minimization strategies can be used to maintain and manage the rising cost of smoking. Strategies include switching to cheaper brands, products or sources of tobacco or purchasing in bulk [4]. Smokers who engage in the use of price-minimization strategies are less likely to make quit attempts or to successfully quit [4]. Additionally, socioeconomically disadvantaged smokers are more likely to engage in one or more price-minimization strategies [5]. In tightly regulated markets such as Australia's, opportunities for purchasing lower taxed and untaxed tobacco are limited and buying in bulk attracts few discounts. It is unlikely that use of these traditional price-minimization strategies alone is enough to manage the rising cost of smoking among highly disadvantaged smokers living at or below the poverty line. Price increases may disproportionately burden low-income smokers in unintended ways. Lowincome smokers in the United States [6] and low socioeconomic status households in Australia [7] spend significantly more of their household funds on tobacco than their more advantaged counterparts. In general, smokers are more likely to have lower levels of material well-being compared to those who have quit successfully [8], and smoker households are less likely to spend money on restaurant food and health insurance [9]. This is likely to be more exaggerated among socially disadvantaged smokers who are more likely to experience smoking-induced deprivation, spending income on tobacco in place of household essentials like food [10,11]. Substantial evidence suggests that socioeconomically disadvantaged smokers experience higher levels of financial stress associated with their socioeconomic position, which inhibits cessation attempts [12,13] and success [14]. Behavioural economic theories such as the 'imperfectly rational addiction model' [15] suggest not all smokers would intend to quit, even at very high tobacco prices. Both the social and cultural context of smoking, as well as individual factors may keep low SES smokers from quitting. Research into the dynamics of smoking in large social networks suggests that as smoking prevalence has decreased over time, smokers have clustered together and moved to the periphery of social networks [16]. Qualitative studies have illustrated that low socioeconomic areas are more permissive of and conducive to smoking behaviours [17][18][19]. Smoking is also perceived as an important means of social interaction and a way of coping with the stressors of personal circumstances and surrounding environments [17][18][19], even though non-smokers have lower stress levels than smokers generally [20]. On an individual level, low-income smokers are more likely than high-income smokers to have shorter planning horizons [21], and low SES smokers tend to be more present-oriented and impulsive than high SES smokers [22]. These factors may help explain why financially stressed smokers experiencing material deprivation and hardship find it harder to achieve cessation and continue smoking despite tobacco price increases, however further research is needed because of the lack of qualitative study in the area. While substantial research supports increasing tobacco taxes to achieve cessation among low SES groups [1], few have explored the resulting experience of deprivation and financial stress among those who maintain smoking. Highly disadvantaged groups face significant tobacco-related health and welfare inequalities, and there is a need to understand the strategies these groups use to maintain smoking in order to develop socially responsible policy. The aim of this project was to gain a fuller understanding of how smokers who experience multiple and high levels of social and financial disadvantage conceptualize, manage and respond to the increasing costs of smoking. Of particular interest were the perceived effects of rising tobacco costs on essential household expenditures, smoking behaviour and quit cognitions. --- Methods --- Design In-depth, semi-structured face-to-face interviews and a brief exit survey were conducted with clients of a social and community service organisation who were current smokers. Data were collected in November and December 2012. University of Newcastle Human Research Ethics Committee approved this study. --- Setting The SCSO is a large, non-government, not-for-profit organisation providing welfare and financial aid assistance services to disadvantaged members of the A. Guillaumier et al. local community. Socially disadvantaged groups such as the long-term unemployed, people with a mental illness, the homeless and Aboriginal and Torres Strait Islanders are over-represented as SCSO service users [23]. The SCSO services a broad catchment area in south-western Sydney, New South Wales, Australia. In Australia at the time of the study, the cheapest recommended retail price for a 25-pack of cigarettes was AUD15.40 and AUD19.95 for a 30-g pouch of tobacco [24]. --- Sample Purposive sampling strategy was used to recruit highly socially disadvantaged smokers. A convenience sample was recruited via a registry of participant contact details from individuals who had participated in a quantitative survey conducted by the research team at the same SCSO site [25]. Participants were attending the service for an Emergency Relief appointment , aged over 18 years, able to speak and comprehend English and were identified as current smokers during a quantitative survey about the price of tobacco. --- Procedure The research assistant , made telephone contact with potential participants and invited them to participate in an interview on their perceptions of the price of cigarettes. The study was conducted onsite in a private room at the SCSO. The RA conducted the interviews. One author co-facilitated the first two interviews, and then reviewed subsequent interview audio to provide on-going feedback to the RA. Interviewing continued until saturation of themes was reached. Interviews were audio-taped and lasted an average of 30 minutes. Participants completed a brief survey at the end of the interview. All participants were offered the opportunity to review or remove comments from the audio. Participants received AUD$50 grocery voucher as reimbursement. --- Measures The interview schedule was developed with consideration of two sources of information. Firstly, the available literature was reviewed to ensure the schedule included the primary themes cited in the existing evidence base such as price-minimization strategies, smoking-induced deprivation, financial stress and experience of tobacco price rises. Secondly, the schedule development was also influenced by the results of a quantitative survey conducted by the authors prior to this study to ensure that results obtained in the large survey were further explored during these interviews. Interviews began with questions about participants' current tobacco use and expenditure, where tobacco fitted within personal budgets, and how tobacco costs impacted on smoking behaviour and household spending. A brief exit survey assessed: gender, age, Indigenous status, income, income source, marital status, education and housing. --- Analysis Interviews were recorded and transcribed verbatim and checked for correctness by A.G. Data were analysed using thematic analysis by one author using NVivo version 10. To establish inter-rater reliability an independent researcher separately coded 25% of transcripts, and identified themes were compared and reconciled where necessary. Braun and Clarke's [26] approach to thematic analysis was used, following a realist paradigm, considering meanings across the entire dataset and identifying semantic themes. Quotes are presented to illustrate key themes; identifiers are gender and age. --- Results --- Sample In total, 57 people were called; 20 were unreachable, and six had an inactive telephone number. Of the 31 who could be contacted, 6 declined to participate and 25 scheduled an interview. Twenty interviews were successfully completed . Table I presents the demographic details of the 20 current smokers who participated. None of the participants received income from paid work; all were dependent on government benefits. --- Cigarette price rises and disadvantaged smokers --- Current tobacco use behaviour About two-thirds of the sample reported smoking 20 cigarettes per day. The price of cigarettes was the dominant factor for purchasing decisions. Participants reported selecting cigarette brand based on the least expensive pack available, purchasing from the cheapest available source which in this case is either the supermarket or a tobacconist. Most said they purchased tobacco as they needed it. When asked about their tobacco expenditure, 45% of participants reported spending between AUD$50 and $80 per week, while a further 35% spent between AUD$81 and $150. Most estimated their tobacco expenditure was 25%-35% of their total personal income. Half of the sample reported never having considered the amount of money they spent on tobacco relative to their income. --- Essential expenditure and cigarette price rises --- Management of finances Most participants reported dealing with expenses as they arose, describing limited use of formal budgeting and financial planning. Putting money aside for savings was not seen as possible 'There's no way for me to save money . . . I don't have any extra money to save' , and many expressed poor impulse control with their money 'I get paid on a Monday then every Monday I'll give my grandparents money to hold for me until the Friday so it's not sitting in my wallet so we've got money for the weekend' . Rent, bills, groceries and cigarettes were the most common expenses reported by participants. Most participants reported using a governmentinitiated direct debiting system that automatically deducted rent and nominated utility bills from their welfare payments. The remaining money was then used to cover day-to-day living expenses 'Everything's coming out like bills, my rent, my bills. Everything comes out automatically so then what I'm left with is my food, like kids' stuff, like school excursions, cigarettes. They're the only things that I have left to pay for once all my bills are paid . . .' . Overall financial behaviour seemed to be largely reactive. Essential household expenditure was dealt with on a 'pay-check to pay-check' basis. As such, most lacked awareness of where the extra money to pay for increasing tobacco costs came from, simply adapting to higher prices '. . . when we can't afford it so much, that's when we have to just cut down and we found that, well then, when we can afford it, we just slowly, sort of, starts creeping back up again' and 'To be honest I'd probably pay that extra . . . So just say my budget's $77 [for cigarettes/week] if it was an extra $10 I would pay the $87 or the $97' . There was a sense given that for those who intended to continue --- Influence of rising smoking costs on essential spending Participants were generally aware that their cigarette expenditure impacted spending in other areas 'Not that they [participant's children] missed out on clothes or food or anything like that but they do miss out on the outings if we smoke' . Participants listed late bill payments, going without meals and having insufficient money for petrol, clothing, alcohol and family leisure activities as some of the ways rising smoking costs impacted on other spending. When identifying specific examples of cuts to household spending, distinct differences emerged between smokers' accounts of what they observed happening in their community compared with their own behaviour. Participants were forthcoming with examples of others' sacrifice: 'They've [neighbours] stopped their normal routine that they used to have, weekly shopping and going out and getting the things they want, petrol, things like that, cigarettes have taken over their budget' . 'you see that all the time, especially in our area where we are. . .you see kids not eating and parents are smoking' . However, they contrasted their own instances of sacrifice with examples that they considered to be worse: 'Yes friends of mine will not get their groceries so they can get their smokes. . .they get behind in their bills. I mean I've been behind in my bills before, bills but not food. We refuse to. . .' . There was a reciprocal relationship between the stress of not having enough money to cover household essentials and smoking 'Sometimes The solution for some was to rely on food vouchers from community welfare organisations 'that's why I'm here, that's why I come to [SCSO name] because it helps us out with food so then I can buy enough smokes to survive' . Throughout discussions participants expressed disappointment regarding their cigarette expenditure 'It appals me. That I could still smoke. I hate it' and 'I know that we could do a lot better things with that money' . This may have motivated some participants to distance themselves from what they considered to be less than ideal behaviour. --- Cigarette price rises and disadvantaged smokers In all accounts, whether personal experience or examples of family, friends and neighbours, participants described the serious impact rising smoking costs has on essential household spending as a common problem among their communities. Some speculated that increasing tobacco costs would lead to smokers ending up 'in debt' ,' 'homeless or starving' or reduced to crime 'I've heard people say eventually if they keep putting it up it's just going to make them steal to get more' . The seriousness of these outcomes indicates the strength of addiction as well as the importance of smoking to these individuals. --- Smoking behaviour For many participants smoking was a shared experience that established a sense of community and formed an integral part of social behaviour. Sharing, swapping, trading or borrowing cigarettes was common among participants '. . . we all smoke, we all share smokes too, if one hasn't got one, give me a smoke. There's one mother tells me, I owe you a packet, then she hit me up the other day, I gave her a handful, she goes I don't want a handful, I only want one, I said take a handful, I'll be hitting you up by the end of the week anyway' . Overall these practices were framed using positive language such as 'sharing' and contributed to a sense of camaraderie among smokers. However, there was also a sense of disdain for anyone perceived to be taking advantage of this system by 'bludging' or 'scabbing' cigarettes. Smoking was the norm within participants' social networks 'we've got family that all smoke too, so, you know. . .' . This meant that smokers could pool their resources and rely on their social networks for sharing or borrowing cigarettes to manage smoking throughout the household cash flow and spending cycle. --- Price-minimization strategies Participants discussed numerous price-minimisation strategies used to manage the cost of smoking. Most had switched to cheaper cigarette brands in the past; however this strategy was no longer feasible "because mine's pretty much the cheapest there is" . Switching from tailor-made cigarettes to roll-your-own tobacco was mentioned by most smokers, 'Yeah I'm smoking rollies this week and it does work out a lot cheaper. . .couldn't do it permanently though' . Reducing the number of cigarettes smoked per day by 'smoking half cigarettes instead of full ones' or increasing the time between each cigarette were cited as ways to make cigarettes last longer and save money, however some were uncertain this was a long-lasting change 'I try that all the time, it doesn't really happen' and "I did try and cut down and I have changed my brands. I find I cut down for a little bit but then I just go back to my normal smoking routine" . Collecting cigarette butts off the street was reported by three smokers as something they had seen others do ". . .you'll see them going and taking butts from the cigarettes and then, oh, you'd just want to do without. . ." . Overall, it appeared that the use of price-minimisation strategies was a way to stretch out tobacco supplies when money was tight. Although participants perceived these strategies to be temporary changes to their smoking behaviour, they usually occurred at the end of a pay cycle indicating they were being made on a regular basis and likely formed part of their smoking routine. --- Illicit tobacco Awareness of illicit tobacco was high and most had tried it in the past. However, it was not considered a regular option. This was true of black market cigarettes 'It's a lucky dip with them, I mean you don ' --- Quit cognitions Prevention versus cessation The sample was divided on whether increasing tobacco prices would help smokers to quit, although recognized its merit as a prevention strategy. A. Guillaumier et al. 'If that's the only thing that's going to really help yeah I think it is fair. And it stops a lot of the young ones from taking up smoking too because they can't afford to smoke' . Some thought price increases would be particularly useful for preventing uptake of smoking among youth. In terms of cessation, some participants thought price increases would encourage smokers to consider quitting 'I mean people are going to get cranky at first, myself included, but yeah at the end of the day it's going to help' . Others thought 'if you smoke you smoke, you're not going to quit just 'cause of the price' or that price increases were a routine part of smoking 'If they go up people complain for a couple of weeks, you know I can't believe that went up so much. But after a while it becomes routine. Sort of like that's life, they're going to go up again' . Complaints were made that increasing cigarette taxes was 'a revenue grabbing sort of exercise, instead of a quit smoking exercise' . Although some saw the potential prevention and cessation-related benefits to increasing tobacco prices, many accepted price increases as part of the smoking routine. --- Quit assistance Overwhelmingly, participants reported that smokers needed more help to quit. Overall, when discussing cigarette prices being used to encourage smoking cessation, participant's expressed a sense of longing for the decision to quit to be taken out of the individual's hand 'to be honest if they went up to the point where I could not afford them, like if it was going to cost me $30 for a packet of 40 s I'd probably be grateful. . .if a pack of 25 s cost about $20. . .would be ridiculous, I would have no other option but to quit' , or 'Around about $35/ $40. . .That would be enough for me. That's when I'd be seeing my doctor and going either give me something real cheap so I can get off it or I'm going to be sick of this you know I'll put myself in hospital and stop the cravings. . .and just detox. I won't pay that, that is jokeable' . These positions may be indicative of a hope that at some point the cost of smoking will outweigh the addiction and difficulty of quitting. However, given the study sample were long-term smokers who have continually absorbed the increasing costs of smoking over time, these critical price points should be interpreted with caution. Participants seemed to perceive policy-makers as having the capacity to increase the provision of smoking cessation care and initiatives and that they should be doing more to help: 'the money that the government gets for tax on cigarettes is nowhere near the money that they put into fighting people to quit' . The affordability of cessation aids such as nicotine replacement therapy was mentioned by a number of smokers 'Some of the things that you do buy to stop smoking are just as costly as cigarettes anyway. . .A lot of people, they'd say I'd rather buy a packet of cigarettes than spend that $10 on the gum.' . Others suggested 'outlaw it' , 'stop making them' , have 'more health things about it. . .more things on TV' , or use larger cigarette price increases 'I think it's moving too slow but the increase, I think it has warned a lot of people, but it's not warning enough' . There was a pervasive belief that governments could be doing more and in particular that proceeds of tobacco price increases could be used to provide more assistance to help people quit. --- Discussion This study explored how socioeconomically disadvantaged smokers conceptualise, manage and respond to the increasing cost of smoking. Participants reported reducing essential household spending, using price-minimization strategies, and sharing, trading and swapping tobacco supplies within their social networks to manage the increasing price of tobacco. There were conflicting opinions over prices being used to encourage quitting, although participants agreed that smokers needed more help to quit. Reducing the cost of cessation aids was repeatedly suggested as a way to promote cessation. Many low SES smokers quit as a result of increased tobacco taxation [1], making tobacco taxation an important tobacco control tool. --- Cigarette price rises and disadvantaged smokers Understanding the behaviour of those who do not quit is important in planning how tobacco taxation increases may impact on those who struggle to quit, and assist in planning a more coordinated approach to achieving the greatest possible community benefit from tobacco control efforts. The evidence indicates some socially disadvantaged smokers will reduce essential household spending to maintain smoking on a budget that is already limited. The majority of the sample were living below or on the Australian poverty line [27]. Although we had no comparison group, experiences reported in the current study are supportive of previous financial stress research findings that low SES smokers spend higher proportions of their income on tobacco [6,7] and have poorer material well-being [8] than smokers in higher socioeconomic positions. In our sample, most smokers estimated spending 25%-35% of their income on cigarettes, which was often at the expense of other essential household spending on bills, groceries, clothing and family activities. Smoking on limited budgets was the norm in these participants' social context. These behaviours are likely to compound existing levels of social exclusion and deprivation. Smoking is positively related to the experience of financial hardship, which in turn is associated with unsuccessful cessation; increases to the cost of tobacco may contribute to this cycle. As previously suggested by Siahpush et al. [13] health and social policies should be developed in tandem to relieve circumstances of hardship. There is a lack of understanding about the strategies used by socially disadvantaged groups living on or below the poverty line to maintain smoking despite increasing prices. In previous quantitative survey research, disadvantaged smokers endorsed price-minimization strategies such as switching to cheaper brands and reducing consumption as ways to manage rising tobacco costs [28]. These behaviours were discussed and elaborated on in the current study. Participants reported use of these price-minimisation strategies appeared to be situation specific. Strategies were used when money was tight, but smoking behaviour tended to return to normal at the beginning of the pay cycle. Furthermore, these traditional cost-cutting measures were not enough to maintain smoking behaviours. A small number of participants also mentioned relying on the SCSO to provide their food, which may contribute to increasing pressure on foodbanks. Participants were concerned for the wellbeing of members of their community. They worried that if prices continued to increase this would further exacerbate experiences of deprivation and potentially lead to socially undesirable behaviour and/or illegal activity. In this study, participant accounts demonstrate shared experiences that appeared to contribute to a sense of camaraderie. Within a social context where smoking is the norm, participants found support within their communities and social networks to maintain smoking. The shared experience of struggling to afford tobacco meant many pooled resources and relied on family and friends to share, trade and borrow cigarettes to get by. Social norms that are more conducive to pro-smoking attitudes and behaviours may contribute to the difficulty some smokers face in achieving successful cessation [17]. Compared to traditional price-minimization strategies, these behaviours are harder to target via tobacco control policies. Future policies and clinical approaches may need to consider the best ways to engage a smoker's social networks to encourage and support cessation. Many participants expressed a sense of helplessness toward quitting smoking. There is mixed evidence as to whether disadvantaged smokers are as interested in quitting as their more advantaged counterparts [29][30][31]. Recent research suggests that low SES smokers who exhibit an external locus of control, cognitive impulsiveness and steep delay discounting are less likely to remain abstinent following cessation treatment [32]. Smokers in this study expressed a wish for an external force to motivate cessation , an inability to control personal expenditure, and refrained from purchasing cessation aids due to upfront costs. The cost of NRT has previously been identified as a barrier to cessation among socially A. Guillaumier et al. disadvantaged smokers [33]. Previous research indicates that smokers are supportive of a dedicated tobacco tax when the revenue is used to help them quit [34]. Initiatives such as the promotion and provision of subsidised cessation aids, health warning campaigns and counselling programmes could accompany future price increases to offset the unintended negative consequences of the policy among low SES smokers. This research provides insight into purchasing and budgeting patterns, and cigarette prioritisation of smokers who experience high levels of social and financial disadvantage in a high income country. However, as we specifically targeted highly disadvantaged smokers these findings cannot be generalised to the experience of the general smoking population. Additionally, the study conclusions may not be generalizable to low income countries. Socioeconomically disadvantaged smokers engage in behaviours that may compound their deprivation by reducing already limited essential household spending in order to maintain smoking as tobacco prices increase. Price-minimization strategies are used on an as needed basis, usually at the end of a pay-cycle. Smokers also rely on a system of sharing and trading resources within their social networks to make cigarettes last longer or to cut costs in the short-term. Although these smokers are interested in quitting, they require more support to do so. Effective tobacco control policy requires a comprehensive approach where taxation should not be seen in isolation. Governments should consider providing and promoting effective cessation aids and programs at the time of tobacco price increases to counter the negative consequences of rising costs and support quit attempts. --- Conflict of interest statement None declared.
Despite substantial modelling research assessing the impact of cigarette taxes on smoking rates across income groups, few studies have examined the broader financial effects and unintended consequences on very low-income smokers. This study explored how socioeconomically disadvantaged smokers in a high-income country manage smoking costs on limited budgets. Semistructured face-to-face interviews were conducted with 20 smokers recruited from a welfare organization in NSW, Australia. Participants discussed perceived impact of tobacco costs on their essential household expenditure, smoking behaviour and quit cognitions. Interviews were audiotaped, transcribed verbatim and analysed using thematic framework analysis. Instances of smoking-induced deprivation and financial stress, such as going without meals, substituting food choices and paying bills late in order to purchase cigarettes were reported as routine experiences. Price-minimization strategies and sharing tobacco resources within social networks helped to maintain smoking. Participants reported tobacco price increases were good for preventing uptake, and that larger price rises and subsidized cessation aids were needed to help them quit. Socioeconomically disadvantaged smokers engage in behaviours that exacerbate deprivation to maintain smoking, despite the consequences. These data do not suggest a need to avoid tobacco taxation, rather a need to consider how better to assist socioeconomically disadvantaged smokers who struggle to quit.
Introduction Migratory movements form part of human history and have occurred for millennia [1]. These movements have traditionally been driven by biological, cultural, economic, and political needs. However, the advent of globalisation, a central aspect of modernity, has given rise to large-scale migratory movements, seemingly accelerating and amplifying this fundamental process [2]. Migration is inherently diverse, encompassing a wide range of migrant profiles based on their place of birth, country of residence, and the reasons that may have caused them to migrate. Therefore, it is a process that remains in constant flux, characterised by extreme multi-ethnicity and continual evolution [3]. Historical events have added momentum [4] to migration, particularly conflicts, wars, humanitarian crises, and natural disasters. In an attempt to clarify the current situation, Arango [5] pointed out that "rapid and sustained economic growth, the increasing internationalization of economic activity, worldwide decolonization processes and emerging economic development processes in the Third World, brought with them an intensification of migration, both internally and internationally." Brown and Gort [6] also stressed that globalisation has contributed to the surge in transnational migratory flows, affecting an increasing number of countries. Sandell, Sorroza, and Olivié [7] have coined present-day migratory movements as the "new era of migration". The displacement of millions of migrants and refugees, victims of multiple conflicts that have erupted on the African continent in recent years, highlights the magnitude of the challenges facing leaders, NGOs, professionals, and societies in general. In 2018 alone, a staggering 2.8 million people migrated to the EU [8], a figure that is similar to previous years. Globally, the number of refugees under international protection reached 25.4 million in 2015 [9]. The European Union and its regions currently face two fundamental and interrelated challenges: demographic shifts within their societies and the need to formulate social inclusion policies to address the influx of migrants and ethnic minorities. In this context, migrants have contributed to the rejuvenation of European populations, fostering growth and positively impacting host countries through the development of intercultural social networks. Nonetheless, it is crucial to allocate resources toward migrants regarding social, health, and labour services and education [10]. Fertig [11] highlighted our current need for more understanding regarding the necessary strategies and policies for achieving the full inclusion of groups residing in vulnerable situations. Despite the ongoing process of social inclusion spanning several decades across various EU countries, achieving comprehensive inclusion remains elusive. It should be noted that multiple authors allude to the profound culture shock experienced by migrants seeking new opportunities in unfamiliar ethno-cultural contexts [12]. According to Berry [13], the cultural gap between local society and migrants can impose considerable stress on the latter. It is important to recognise that social and cultural exclusion of ethno-cultural otherness constitutes an undeniable socio-political reality supported by extensive scientific investigations and studies across various disciplines [14][15][16][17][18]. The enactment of numerous national anti-immigration laws has left millions in a state of legal and institutional defenselessness and social helplessness worldwide, denying them basic rights such as access to housing, health, and education [19][20][21]. The migratory flows within the European Union call for new intervention paradigms, as this issue extends beyond transnational mobility. In many instances, we encounter patterns of interaction that border on the imposition of cultural hegemony and forced acculturation, ultimately resulting in the alienation of non-national migrants [17]. Migrants and refugees often find themselves at a socio-political crossroads, facing situations of institutional defenselessness and frequently experiencing a quasi-legal status that leaves them in a state of liminality. In this situation, neither their rights as migrants and refugees are fully recognised [22], nor are they granted access to the rights enjoyed by national subjects, such as education, health, and housing. The attitudes driving such behaviour were explained by [17] using the term alienation. According to this perspective, national subjects tend to "domesticate" and "eradicate" any ethnonational otherness, viewing it as an alternative fatherland to the existing one . In Hage's words, migrants and refugees, whose ethno-cultural capital is acquired rather than natural, are particularly susceptible to having their basic rights denied through the rhetoric of national identity [14,15] and dualistic discourse [23]. Hage also argued that the assimilation of migrants is a process related to limits and norms, which can be transferred, changed, and diluted. Within this context, a significant paradigm inherent to scientific studies on migratory phenomena emerges: integration vs. inclusion. Therefore, there is a gap in the literature to examine migratory scenarios within intercultural social networks, assessing the level of inclusion in the host society, and exploring migrants' perceptions of life satisfaction. Therefore, this study aims to explore that gap using a European case study in northern Spain. The Basque Country witnessed the last armed conflict in Western Europe, which lasted fifty years. The aftermath of this conflict led to the frequent use of ethnocultural markers in identity formation, resulting in a highly intricate and volatile social framework. The existence of categories related to internal otherness and political violence gave rise to strong, performative narratives [16,[24][25][26][27], rhetorics of identity [14,15], and dualistic discourse [23], contributing to the Basque society's pronounced insularity against external influences [28,29]. This insularity had a tangible impact on migration patterns, with the Basque Country experiencing a relative dearth of migratory arrivals compared to the rest of Europe. As the intensity of the conflict diminished in the 1990s, migrants from various parts of the world began to consider the Basque Country as a destination to settle and start a new life [30]. In comparison with the rest of Europe, the delayed surge in migratory flows towards the Basque Country could be attributed to additional factors. The region is home to one of the few pre-Indo-European languages spoken on the continent, alongside Hungarian and Finnish. The existence of a co-official language, Basque or Euskara, quite unlike any other European language, has long posed a significant barrier to communication with local residents, hindering the development of social networks. This linguistic complexity is not unique to the Basque Country but extends to the rest of Spain, where co-official languages co-exist alongside Castilian Spanish, presenting a challenge for migrant communities, particularly those from Latin America [31]. Information on the Basque Autonomous Community , one of the two Basque regions in northern Spain, is presented below. According to the data in Figure 1, we can identify three distinct stages if we look at the influx of foreign citizens to the BAC. From 1998 to 2008, the BAC witnessed a surge in migratory flows attributable to economic growth. The onset of the economic crisis in 2009 marked a significant turning point, leading to a substantial decrease in the number of arrivals. This phase persisted until 2013-2014, characterised by challenges associated with the economic downturn. More recently, there has been a resurgence in migratory flows to the BAC. Notably, in 2019, 19,201 people arrived in the community, reflecting a return to levels similar to those observed before the economic recession. The following graph shows the growth trends in the local community and the migrant community since 1998. Basque Country experiencing a relative dearth of migratory arrivals compared to the rest of Europe. As the intensity of the conflict diminished in the 1990s, migrants from various parts of the world began to consider the Basque Country as a destination to settle and start a new life [30]. In comparison with the rest of Europe, the delayed surge in migratory flows towards the Basque Country could be attributed to additional factors. The region is home to one of the few pre-Indo-European languages spoken on the continent, alongside Hungarian and Finnish. The existence of a co-official language, Basque or Euskara, quite unlike any other European language, has long posed a significant barrier to communication with local residents, hindering the development of social networks. This linguistic complexity is not unique to the Basque Country but extends to the rest of Spain, where co-official languages co-exist alongside Castilian Spanish, presenting a challenge for migrant communities, particularly those from Latin America [31]. Information on the Basque Autonomous Community , one of the two Basque regions in northern Spain, is presented below. According to the data in Figure 1, we can identify three distinct stages if we look at the influx of foreign citizens to the BAC. From 1998 to 2008, the BAC witnessed a surge in migratory flows attributable to economic growth. The onset of the economic crisis in 2009 marked a significant turning point, leading to a substantial decrease in the number of arrivals. This phase persisted until 2013-2014, characterised by challenges associated with the economic downturn. More recently, there has been a resurgence in migratory flows to the BAC. Notably, in 2019, 19,201 people arrived in the community, reflecting a return to levels similar to those observed before the economic recession. The following graph shows the growth trends in the local community and the migrant community since 1998. Analysis of the evolution according to the main areas of origin highlights the diverse nature of the migratory flows toward the BAC. As of 1 January 2020, slightly more than half of BAC residents born abroad originated from a Latin American country . Additionally, 16.2% were born in a European Union country, and 14% originated from the Maghreb region. Over the years, the different ethnic groups have varied in numbers, although Latin America has remained the main point of origin. The roots of these differences may be found in the demands of the Basque labour market for different profiles, most of which are related to the service sector, domestic services, and care for older people [30]. In the past year, the foreign-born population residing in the BAC increased by 19,201, reaching a total of 241,193 individuals, representing 10.9% of the population. Data from 2020 show the consolidation of the upward trend observed in previous years. Nonetheless, compared with national figures, the BAC, at 15.2%, remains below the Spanish average [30]. A closer inspection of the data reveals that of the 19,201 individuals of foreign origin who arrived in the Basque Country in 2019, most came from a Latin American country , while others originated from the Maghreb region , Asia , and sub-Saharan Africa . Hence, there is a clear consolidation in the resurgence of migratory flows from the Americas, signifying a response to the economic recovery of the Basque Country. A notable aspect is the feminisation of migratory flows from Latin America to Analysis of the evolution according to the main areas of origin highlights the diverse nature of the migratory flows toward the BAC. As of 1 January 2020, slightly more than half of BAC residents born abroad originated from a Latin American country . Additionally, 16.2% were born in a European Union country, and 14% originated from the Maghreb region. Over the years, the different ethnic groups have varied in numbers, although Latin America has remained the main point of origin. The roots of these differences may be found in the demands of the Basque labour market for different profiles, most of which are related to the service sector, domestic services, and care for older people [30]. In the past year, the foreign-born population residing in the BAC increased by 19,201, reaching a total of 241,193 individuals, representing 10.9% of the population. Data from 2020 show the consolidation of the upward trend observed in previous years. Nonetheless, compared with national figures, the BAC, at 15.2%, remains below the Spanish average [30]. A closer inspection of the data reveals that of the 19,201 individuals of foreign origin who arrived in the Basque Country in 2019, most came from a Latin American country , while others originated from the Maghreb region , Asia , and sub-Saharan Africa . Hence, there is a clear consolidation in the resurgence of migratory flows from the Americas, signifying a response to the economic recovery of the Basque Country. A notable aspect is the feminisation of migratory flows from Latin America to the BAC. Of the 13,918 individuals of Latin American origin who arrived in the past year, 8040 were women, constituting 57.8% of the total [30]. The past two decades have witnessed a notable shift in the Basque society's perception of the migrant population. In the early 2000s, the native population often regarded new arrivals with suspicion, displaying, at times, xenophobic attitudes. These attitudes stemmed from the perception of migrants as competitors for access to educational, health, or social resources [32]. The onset of an economic crisis in 2008 further intensified negative views of migration [33], fueled by a decline in employment opportunities and the subsequent repercussions for social welfare [32]. Currently, as several studies point out [33], there has been a significant decrease in the perception of immigration as a problem. However, certain areas, such as schools and residential areas, still display lower tolerance levels [33]. Therefore, the data suggest a somewhat more optimistic view of the immigrant population's contribution to Basque society, with fewer fears and greater confidence. However, it is important to acknowledge that in neighbouring contexts, it has become evident that stigma towards immigration remains a reality that has an integral impact on people's lives [34]. Considering that the data presented are based on the previously mentioned survey results, in this research, Structural Functionalism was chosen as the theoretical framework guiding the analytical strategy [35]. This sociological perspective views society as a complex system with interconnected parts, each contributing to the stability and functioning of the whole [36]. In the case of the present research, those variables will be the social networks, life satisfaction, and self-perceived levels of inclusion among migrants living in the Basque Country, northern Spain. In fact, the study aims to establish the relationship between the respondents' social networks and their self-perceived levels of inclusion and life satisfaction. Experts in the field have long theorised about the concepts of integration and inclusion, their multiple meanings, and their range of interpretations [37]. Inclusion is characterised by a feeling of recognition and attachment to a certain group of people, community, or society. It is important to recognise that inclusion takes various forms, and thus implies respecting diversity and rejecting any discriminatory attitude [38]. Morata [39] added, "Recent studies have linked social participation and the construction of inclusive citizenship to identity processes of the community, which can ostensibly curb social exclusion." It might be imagined, therefore, that the degree of connection with the rest of the community is a decisive factor in the level of social inclusion experienced by an individual. An effective approach to including migrants and refugees should prioritise their complete and equitable engagement in the economic, social, cultural, and political facets of life within their host country [40]. This inclusive process should address and alleviate the initial stress and anxiety stemming from challenges such as insecurity, housing, and employment. It should also facilitate the acclimatisation to new ways of life [41]. The concept of social inclusion, particularly within the academic field, remains controversial, with varying perspectives and meanings. For some, it means the assimilation of minority groups into the dominant culture, which can result in a process of deculturation [42]. Others conceptualise it as integrating or retaining individual liberties while learning about the new country of residence [19]. Various inclusion frameworks were proposed by researchers [43][44][45]. However, in this article, we emphasise the relevance of the participatory dimension of social inclusion. Social inclusion and exclusion are ongoing and dynamic social processes that one-off, simplistic interventions cannot address. Circumstances that enshroud both symbolic violence [16,25] and structural violence [18,46] often motivate social exclusion that can negatively affect processes of inclusion in which migrants often try to participate. Nonetheless, as the data compiled in the present study show, migrants themselves might be the ones who choose not to participate in these inclusive processes. In the context of a diaspora, migrants within a host society will often form social clusters, and they might consciously choose to be part of familiar structures rather than seek integration within an ethno-culturally alien host community [2]. According to Knoke [47], social networks refer to the "structural relations among social actors" and comprise the outcomes of connections between individuals, subgroups, and greater groups. It is a broad field of analysis that can be approached through different disciplines. In this paper, we will refer to the social networks of migrants within host communities and will consider the following social networks: family, friends, and neighbours. All of these networks work towards including migrants within the host community. At a European level, several studies have focused on the impact of such social networks on the quality of life and future plans of migrants [48][49][50]. For instance, a study by Knight,Thompson,and Lever [51], analysed the situation of Polish immigrants in the South Wales region of the UK from 2008 to 2012. Their results indicated that the decision to migrate to the host community was driven by the social networks established pre-arrival, which often included family and friends. Social networks were also relevant for these migrants when deciding to stay in the host country. It is noteworthy that Liu [52], in another study examining migration from Senegal to France, Italy, and Spain, highlighted gender differences among migrants. The findings indicated that, for male migrants, friends constituted the primary social network, whereas family held greater significance for females [52]. In another longitudinal survey of refugees within the UK, Cheung and Phillimore [53] studied gender differences, finding that social networks within the UK are key to reducing gender differences in terms of inclusion in the host society. In contrast, Koelet and de Valk [54] analysed feelings of loneliness among European migrants in the Netherlands, finding no difference between males and females in that regard. In a similar study, Koelet, Van Mol, and de Valk [49] analysed the social networks of European migrants in the Netherlands. The study highlighted the importance of having relatives in the host country and that the more extensive the contact with the local family network, the greater the opportunities for establishing a local friendship network. The results also indicated that European migrants might move "...within international communities in the country of destination, and [might] more easily establish links with people in the same situation. . ." . Likewise, a more recent study on the inclusion of young Romanians in Catalonia [55] concluded that young migrants perceive more selfidentity within "their ethnical group of origin, although a tendency towards hybridization is revealed as the length of stay increases" . In a larger study, Pratsinakis and colleagues [56] analysed the social networks within various multi-ethnic European cities and found that neighbourhood-based inter-ethnic relationships were common among migrants. The study also found that these social ties did not necessarily become friendships, although they provided an opportunity for socialisation among migrants. In contrast, some studies have demonstrated that migrants often lack social networks when they arrive in a host country [49,50]. Some of the difficulties that migrants face when arriving in a host country are related to the cultural distance between themselves and the culture of the host societies and a lack of proficiency in the language of the host country [49,[57][58][59]. For instance, Djundeva and Elwardt [59] analysed feelings of loneliness among Polish migrants in the Netherlands, showing that homogenous, restricted kin-based networks were related to deeper feelings of loneliness. Concerning age, it is important to note that this factor influences the types of social networks established by migrants. For instance, Hussein [60] found that older Turkish migrants living in the UK lacked the necessary resources for social inclusion within British society. However, social networks were key to providing older Turkish migrants with "safety nets at crucial times in their lives" . Youth networks have also been analysed in relation to friendship. For instance, in the study by Rübner Jørgensen [61], youth peer networks and friendships were analysed both in Spain and in England. The study highlighted schools as key spaces for the emergence of such peer networks. The successful inclusion of migrants is decisive in terms of their well-being and development in their host community. For this reason, it is fundamental to understand the experiences and perceptions of migrants in relation to inclusion if we are to combat this shared challenge [62]. Various socioeconomic aspects, such as financial circumstances, citizenship, access to health and educational systems, involvement in sociocultural activities, and housing conditions, become potentially relevant for the inclusion process of migrants and their well-being [63]. The study conducted by Soriano-Miras, Trinidad-Requena, and Guardiola [64] specified that it is necessary to examine the following dimensions in order to foster effective and holistic inclusion: cultural well-being, structural well-being, community well-being, and subjective well-being. The latter dimension, defined by Kee, Lee, and Phillips [65] as the migrant's cognitive and affective perceptions of their experiences, is essential in terms of satisfaction in the host community. In this context, according to Heizmann and Böhnke [66], integration policies within Europe should actively seek to include these groups by enhancing living conditions regarding the aforementioned dimensions. This approach serves as the basis for effectively ensuring their human rights. Various studies have analysed the relationship between perceptions of well-being among migrants and variables such as age, gender, and country of origin. For instance, Sand and Gruber [67] conducted an analysis using data from the Survey of Health, Aging, and Retirement in Europe across several European countries, observing a significant gap in Subjective Well-Being between the migrants and the local population. The authors noted that this gap tends to gradually diminish with age. They also pointed out that Southern, Eastern, and Non-European migrants perceived lower levels of SWB than those from other countries [67]. In line with this idea, Soriano-Miras, Trinidad-Requena, and Guardiola [64] studied the well-being of Moroccan migrants in Spain. Regarding the age of the migrants, this study also concluded that older migrants have a better perception of well-being, and suggested that this could be attributed to the fact that "with age, immigrants put down roots, which helps generate this well-being" . This idea is supported by a recent study concluding that relinquishing certain aspects of one's roots may promote a sense of belonging while also exposing migrants to stressful and internal-conflictive situations [55]. Migrant inclusion and development largely rely on access to work. However, they often encounter challenges in entering the labour market. Consequently, numerous studies have aimed to identify the contextual aspects that might act as facilitators or barriers in this regard, including social networks, immigration policies, language skills, recognition of studies and qualifications, and the attitudes of employers [68,69]. Gender disparities in labour market participation were identified in various studies, highlighting the vulnerable situation of migrant women [70]. These women often have to deal with the "'double disadvantage' of being both a migrant and a woman" . In a study on the migrant population in Spanish and Portuguese labour markets, Oso and Catarino [72] argued that male employment among migrants was mostly in construction, while women had a greater presence in roles linked to care and cleaning sectors. The authors concluded that the labour market integration of migrants tends to perpetuate gender roles [72]. Moreover, the global inclusion of women within the labour market has not resulted in a redefinition of male responsibilities within the domestic arena [73]. According to a study in the Spanish context, this has led to an increased demand for private care services, primarily fulfilled by migrant women [74]. Regarding women's caregiving roles, Bradby and others [75] suggested that: The gendered nature of healthcare work is inherent to the way that health and welfare systems have developed over the years: supporting the health of others, both in private settings and mediating with professional service providers, was taken for granted as a natural part of women's roles as mothers, daughters, sisters, aunts, wives, partners and neighbours . Furthermore, a study carried out by Garlington and others [76] concluded that the women's caregiving role has been negatively affected because of a "poorly designed and restricted welfare policy" . They add that due to the gendered dichotomy of public/private spheres, women are severely disadvantaged in areas such as the labour market, social and political participation, or education . This observation aligns with the sociocultural construct of the "nice girl," wherein women are encouraged to embrace a set of values and social norms associated with the female gender [77]. Several studies conducted in the Basque Country have revealed that many of the wellbeing dimensions mentioned earlier are linked to the networks that migrants establish in their host communities. For instance, in a study by Pérez-Urdiales and her colleagues [78] regarding the social networks of sub-Saharan migrants, the access of sub-Saharan African women to healthcare services was examined. The authors noted that these women faced the most barriers when trying to access the healthcare system. The study highlighted that social networks played a crucial role in facilitating access to healthcare services. Moreover, a previous study within the same context pointed out that migrant women perceived greater difficulties during the administrative processes than when receiving healthcare attention itself [79]. Despite the regional, national, and international efforts made through integration policies, Pardo [80] pointed out that the inclusion of migrants relies, to some extent, on their active participation in the inclusion process. As was evidenced in this study within the Latin-American community living in European cities such as Amsterdam, London, and Madrid, migrants engage with host societies "through the use of informal social and civic networks and transnational activities developed by migrants themselves, instead of through formal policies designed to integrate them" . Likewise, in another study focused on Senegalese male migrants in the Basque Country, Ramsoy [81] concluded that social networks play a significant role in their narratives and are key in their process of adaptation to the host society. In this context, the main objective of the present study was to analyse the perceived level of inclusion and satisfaction with life among migrants living in northern Spain. The specific objectives were: to explore migrants' perceptions of belonging to social networks based on gender, age, and country of origin; to analyse migrants' perceptions of satisfaction with life and level of inclusion in the host society based on gender, age, and country of origin; and to examine the relationship between belonging to social networks and the degree of satisfaction with life and levels of inclusion among the migrant population in northern Spain. Addressing these objectives will provide insights into the reality of the immigrant population, which should help to develop strategies aimed at enhancing their quality of life. Therefore, through this study we aim to answer the following questions: Are there associations between social networks, life satisfaction, and perceived inclusion among migrants in northern Spain? Do social networks, life satisfaction, and perceived inclusion vary by age, gender, and country of origin of migrants? --- Materials and Methods This is a quantitative study based on Structural Functionalism. Its analytic strategy is based on quantitative analysis to examine the relationships between variables and identify how different components of a system contribute to overall stability or dysfunction [82]. In the present case, this was conducted through a survey designed to measure migrants' perceived level of inclusion and satisfaction with life, as well as their level of participation in social networks in northern Spain. We analysed the responses of 373 migrants from Central Europe, Eastern Europe, Latin America, Africa, and Asia. Participants were randomly selected individually or from various contexts such as religious communities, social and cultural organisations, diaspora, and networks. The researchers administered the surveys on a face-to-face basis, with 25 different questions/items on the aforementioned topics. --- Instrument The following three instruments were used to measure the study variables: --- • Perception of inclusion: The pictorial scale of Woosnam [83] was used. This scale indicates the degree of perceived inclusion through drawings. The scale had a strong internal consistency . --- • Satisfaction with life: The satisfaction with life scale was used, comprising 5 items [84]. . --- • Social network: The Lubben scale was employed to evaluate the migrants' social network. This instrument was designed to assess social isolation in older adults by measuring perceived social support from family, friends, and neighbourhood [85]. In this sample, Cronbach's alpha values were 0.914 for the family network subscale; 0.854 for the neighbour network subscale; and 0.870 for the friendship network subscale. The reliability of the entire scale was 0.909. --- Sample The sample consisted of 373 immigrants predominantly from the Basque Country in northern Spain, ranging in age from 18 to 65, with a mean age of 32.89 years . Of the participants, 49.9% were men , and 49.6% were women . In terms of their geographical origin, 48.3% originated from Latin America , 24.1% from Eastern Europe , 20.9% from Africa , 3.8% from Asia , and 2.9% from Central Europe. --- Data Analysis For this study, descriptive analyses were used to examine the study variables , focusing on the differences between mean scores. Additionally, analysis of variance and post-hoc analysis using the Tukey test were conducted to examine the differences between the following variables: inclusion, life satisfaction, social networks, age, gender, and country of origin. Subsequently, Pearson's correlation analyses were conducted to assess the relationships between the three main variables of interest: inclusion, life satisfaction, and social networks. Data analyses were performed using the Statistics Package for Social Sciences . --- Results --- Satisfaction with Life, Broad Social Networks, Family Networks, Neighbourhood Networks, and Friendship Networks According to Gender and Age Table 1 shows the mean scores on life satisfaction, the degree of inclusion, and the different social networks according to gender and age. The data indicate significant gender differences regarding life satisfaction, broad social networks, family networks, neighbourhood networks, and friendship networks, with women scoring higher than men in all cases. Additionally, as shown in Table 2, significant age-related differences were also found for friendship networks. In this case, the younger participants presented higher levels of friendship networks. Table 2 presents the differences in satisfaction with life, inclusion, broad social networks, family networks, neighbourhood networks, and friendship networks according to the participant's country of origin. The data reveal notable differences in life satisfaction, with individuals from Central Europe reporting the highest levels, followed by Eastern Europeans, Latin Americans, and, subsequently, individuals from Asia and Africa who obtained similar scores. Similarly, significant differences emerged in the level of inclusion, with those from Central Europe showing the highest scores, followed by those from Latin America, Asia, Africa, and, finally, Eastern Europe. Furthermore, differences were observed concerning social networks, including broad social networks, family networks, neighbourhood networks, and friendship networks . --- Correlations between Social Networks, Satisfaction with Life, and Inclusion Correlation analyses were conducted to explore the relationships between social networks, perceived satisfaction with life, and inclusion . The data displayed in Table 4 reveal correlations between all the analysed variables. Notably, broad social networks show positive correlations with both inclusion and satisfaction with life . In comparison with the other variables, inclusion emerges as the variable with the highest correlation. Similarly, a correlation was found between family networks and inclusion and life satisfaction , with inclusion showing the strongest correlation with family networks. Additionally, the neighbourhood network variable shows correlations with inclusion and life satisfaction , with the former correlation being the strongest. Finally, there is a correlation between friendship networks and inclusion and life satisfaction , with inclusion also being the most strongly correlated variable in this context. --- Discussion This work aimed to analyse the social networks, satisfaction with life, and level of inclusion of migrants in northern Spain, primarily concentrated in the Basque Country. The following discussion will consider the key findings revealed by this study. First, women showed higher levels of perceived satisfaction with life compared to men. Moreover, women also showed higher levels of social, family, neighbourhood, and friendship networks in comparison with men. The literature indicates that satisfaction with life is linked to subjective well-being [65], which, in turn, is related to various aspects such as financial circumstances, citizenship, access to the labour market, and health and education systems [63]. Given this premise, it might seem contradictory that migrant women showed higher levels of satisfaction with life, particularly if we consider two factors: first, migrant women typically face a more vulnerable and underprivileged situation when entering the labour market, which is generally recognised within the literature [70]; and second, the persisting gendered dichotomy of public and private spheres still continues to impose severe limitations on women, impacting their access to opportunities in areas such as the labour market, social and political participation, and the education system, especially further education [76]. It is important to approach the obtained results with careful consideration. The data scale, rather than capturing objective dimensions of well-being, relies on the migrants' subjective perceptions. In this regard, according to Litton [77], women's perceptions might be influenced by the gendered sociocultural construct of the "nice girl". Consequently, their evaluation of life satisfaction might be coloured by societal expectations associated with feminised attributes such as niceness, modesty, and non-controversy. The results also indicate that women showed higher levels of social networks. These findings could be linked to the challenges that women often encounter, facing more barriers than men in terms of inclusion in the host country [70] and, in this context, social networks become decisive facilitators for migrant women [79]. Consequently, women may value their networks more positively than men, who might be more active in the public sphere [76] and may not rely as heavily on social networks to feel included in their host country. Concerning age, this study reveals that young migrants reported higher scores in social networks related to friendships. This outcome could be influenced by the friendships formed in specific centers, such as schools [61], or other non-formal or informal educational centers, such as leisure centers [19]. Regarding satisfaction with life and inclusion, young migrants have reported higher scores in both scales, followed by the 35-65 age group and, finally, those aged over 65 years. These results run counter to some of the findings reported in the reference literature. For instance, [67] asserted that the gap between migrants and locals gradually decreased with age. Soriano-Miras, Trinidad-Requena, and Guardiola [64] also concluded that older migrants had better perceptions of well-being. This idea was also supported by Petrañas and others [55], who stressed that relinquishing certain aspects of their roots may promote a sense of belonging. However, to explore this further, it would be necessary to conduct a cross-sectional study, analysing perceptions of satisfaction with life and inclusion among the same sample of the migrant population throughout their life or stay in the host country. Our analyses revealed several findings of considerable importance regarding the migrants' country of origin. The group showing the highest levels of inclusion, satisfaction with life, and networks based on family, friendship, and broad social networks were those from central Europe. Generally, citizens of the European Community encountered fewer profound social and cultural barriers compared to migrants from other continents, particularly if they did not belong to a former colony or diaspora [2,19]. Often, Central European migrants are not perceived as traditional migrants but rather as tourists or highly skilled professionals. This unique perspective might explain why they feel more welcome and included in the host society. Nonetheless, it is important to note this group constituted the smallest cohort among those surveyed in the present study. The second group, when considering the level of inclusion and networks related to family, friendship, and broad social networks, comprised migrants from Latin American countries. It is worth noting that this group represents the largest community of migrants residing in the Basque Country, potentially explaining the existence of well-developed networks that provide support to their members [19,30]. Consequently, their perception of inclusion was ranked among the highest. However, despite these strong social connections, the level of satisfaction with life of the Latin American migrants was not as high as their European counterparts . This observation could be related to the fact that Latin Americans are typically employed in positions that require lower skills and are, therefore, poorly paid [30]. Migrants from Eastern Europe showed the second-highest levels of satisfaction with life; however, they also displayed the lowest levels of perceived inclusion and networks related to family and friendship. Interestingly, in terms of their network related to neighbours, they had the highest scores among all the surveyed groups of migrants. This behaviour suggests a potential attempt to distance themselves from their previous situation in their home country and ethnocultural community, focusing their interests on becoming part of the host community in an inclusive and comprehensive way [55,86]. Overall, migrants from Africa and Asia reported some of the lowest levels of inclusion and satisfaction with life. While African migrants emphasised strong networks linked to their neighbours, possibly due to residing in the same neighbourhoods [87], Asian migrants appeared to have weak networks across all aspects analysed, including family, friends, neighbours, and broader social networks. Overall, migrants from Africa and Asia had the weakest connections to the Basque Country in terms of integrating into the local community or feeling a sense of inclusion, which correlated with their particularly low levels of life satisfaction. --- Conclusions Taken together, the findings of this study suggest that the higher the perceived levels of social networks, the higher the levels of inclusion and satisfaction, a pattern of results that is consistent across all types of networks. First, a broader social network generally correlates with a higher level of life satisfaction and perceived inclusion among migrants. Second, broader family networks are associated with increased life satisfaction and perceived inclusion. Third, both wider neighborhood and friendship networks are correlated with higher levels of satisfaction and perceived inclusion. These observations are consistent with international works such as the study by Hussein [60], which emphasises the key role of social networks in the inclusion of Turkish migrants within British society. All of the previously mentioned social networks serve as inclusion networks, as they facilitate the integration of migrants into the host society. This observation also aligns with the study by Ramos and colleagues [62], suggesting that individual well-being positively influences the experiences and perceptions of inclusion among migrants. Moreover, Fossland [68] and Marcu [69] emphasised, in line with the present results, that social networks act as facilitators for accessing the labour market, positively impacting satisfaction with life and perceived inclusion. Even in the specific context of the Basque Country, previous studies have linked the presence of networks to various dimensions of well-being [38]. These findings suggest a potential inconsistency between integration policies and the specific needs of migrants, which are often met through family and peer support. Therefore, integration policies should be refocused toward holistic inclusion that guarantees the rights of migrants and promotes social and cultural equity. The inclusion process should not solely depend on the fate of each migrant, their contextual conditions, and specific networks. Nonetheless, recognising these aspects as decisive throughout the integration process is essential for their effective implementation through integration policies. Future research should prioritise a mixed-methods approach, combining quantitative and qualitative methods to better understand certain phenomena, such as gender and ethnic differences in inner processes and cosmovision related to social and cultural inclusion. Future qualitative research should also explore the reasons why migrants and refugees leave their home society and the means by which they make their journey. Finally, further studies are needed to examine the role of local people in the inclusion processes of migrants. --- Data Availability Statement: Data are unavailable due to privacy or ethical restrictions. --- --- Informed Consent Statement: Informed consent was obtained from all the subjects involved in the study.
This paper aims to analyse the individual perceptions of belonging to social networks among migrants living in northern Spain, exploring various dimensions such as perceived inclusion and life satisfaction. A quantitative analysis was employed with data collected through a survey of 373 migrants from different ethnic backgrounds. The findings indicate that (1) women have higher levels of perceived satisfaction with their life and social networks; (2) young migrants have higher levels of friendship networks; (3) the highest levels of perceived inclusion were found among Central Europeans, followed by individuals from Latin America, Asia, Africa and, finally, Eastern Europe; and (4) each social network under analysis was positively correlated with perceived inclusion and satisfaction with life. In summary, the results emphasise that a greater presence of networks is associated with higher levels of perceived inclusion and life satisfaction.
Introduction --- D espite extraordinary advances in biomedicine and associated gains in human health prospects, a growing number of health and well-being related challenges remain or have emerged in recent years. These challenges are often more than biomedical in complexion, being social, cultural and environmental in terms of their key drivers and determinants. There are numerous examples: mental health is linked to lifestyles, as well as to the environments and economies in which people live; antibacterial resistance is related to social demand for, delivery and use of available medicines; the needs of ageing populations, the causes and health impacts of accelerated climate change, persistent local and international inequalities in health, and the damaging health effects of poverty, isolation and loneliness-all require an appreciation of complex social, cultural and environmental processes in order to create and sustain conditions for health and well-being. Tackling these and other pressing national and international health and environmental issues requires commitment not only to reducing the burden of disease, but also to strengthening peoplecentred health systems and public health capacity , recognising the cultural contexts of health , focusing on the quality of our social and ecological relations , and investing in health through a life-course approach . An emerging if underspecified consensus across these documents suggests that this turn to the conditions of possibility for health necessitates establishing novel interdisciplinary research partnerships and building and sustaining cross-sectoral collaborations with various communities and stakeholders . Adding substance and detail to these calls for new partnerships and practices requires a radical re-assessment of our approaches to health and well-being, to forms of working and the evidence base on which health policies are developed. In this paper we set out a conceptual platform from which innovative research methods and translational pathways for enabling health and well-being can emerge. After critically reviewing recent arguments for greater awareness of the cultural and environmental determinants of health and for participatory approaches to research, we introduce the notion of healthy publics. This is a term we use to describe dynamic collectives of people, ideas and environments that can enable health and well-being. These fragile collectives may be distributed across many areas of expertise, be geographically or spatially diverse, draw on a range of matters and materials that evidence their claims to health, and, importantly, can use their array of experiences and material relationships to question received or established approaches to health. We illustrate our argument with a number of cases, drawn from our own and others' recent research and presented here as a means to exemplify, rather than exhaust, the arguments for, and instances of, healthy publics. We argue that by enriching understandings of cultural practice and generating innovative approaches to health and well-being, healthy publics can shift the focus of public health away from populations and individuals as passive targets for policy, and away from the view that culture acts as a barrier to efficient biomedical intervention. Instead, healthy publics underline the importance of social, cultural and environmental movements and relations in providing the conditions for healthy outcomes across the life course. Problematising the cultural turn in public and planetary health Recent debates about public health have highlighted the need for a shift in emphasis from a focus on the determinants of disease and towards approaches that foster the conditions for health, well-being and sustainable, healthy, environments. For example, reports from international and national organisations such as the World Health Organisation, the Rockefeller Foundation-Lancet Commission, the Academy of Medical Sciences, the Campaign for Social Science, and the Arts and Humanities Research Council in the UK have all drawn attention to the limited capacity of biomedical research alone to address 'increasingly diverse and complex [health] issues that transcend disciplinary, sectoral and geographical boundaries' . In so doing, they have highlighted the need to move away from individually-focused behavioural interventions to a relational approach that creates conditions for health. In spite of adopting slightly different perspectives on the recommended pathways to health and well-being, these arguments for innovative and sustainable methods of enabling human health and well-being, as well as the health of other species and the planet, share a number of characteristics that can inform an approach to healthy publics. First, these approaches prioritise 'culture' as a key determinant of health. Of course, interest in the relationship between culture and health is not new; it was, for example, built into the formulation of transcultural psychiatry in the post-Second World War years and has been one of the key features of approaches to HIV/AIDS prevention and care since the 1980s . Recent reviews, however, have emphasised the need to reinvigorate interest in cultural, as well as social, contexts in order to address inequalities in health and well-being, and to integrate evidence drawn from studying such contexts into health policy and practice. The Lancet Commission on Culture and Health has made the provocative assertion that the 'systematic neglect of culture' constitutes the 'single biggest barrier to advancement of the highest attainable standard of health worldwide' . This has been endorsed elsewhere: in World Health Organisation Europe's commitment to foregrounding the cultural contexts of health as part of Health 2020 ; in the UK Chief Medical Officer's arguments for a 'cultural wave' of public health ; in references to culture as the 'missing link' in health research ; and in the growing interest in the interrelations between natural, built and work environments, cultural values, and health . While this somewhat belated turn to culture is welcome, there is an inclination in some if not all of these pronouncements to present culture as a set of norms, properties or established ways of doing things. Culture in these documents generally corresponds to the UNESCO definition as 'the set of distinctive spiritual, material, intellectual and emotional features of society or a social group, and that it encompasses, in addition to art and literature, lifestyles, ways of living together, value systems, traditions and beliefs' . Although this formulation is constructive, bringing to the fore questions about material production, social relations and symbolic systems, it can lead to the tendency to treat culture as distinct from, and therefore a barrier to, the efficient application of scientific or biomedical knowledge. Similarly, and vitally, it neglects the incompleteness of culture, its dynamism, and the tendency for subgroups to challenge established practices, to innovate, and to borrow from other groups and cultures . It is therefore important to emphasise that cultures are neither neat, nor homogeneous, nor do they operate as a 'single integrated reality' ; rather, they are emergent, continually shaped and reshaped by power and inequality, and characterised by diversity, hybridity and exchange. These dynamic features of cultures are key to understanding why and how healthy publics operate within and through a set of continuous struggles over meaning and evidence. Second, there is renewed emphasis on the significance of taking seriously the forms of evidence generated by methods that elicit the beliefs, practices, values, and social processes that can shape how health and well-being are understood and practised. These methods are often, though not always, qualitative, and are able to generate improved understandings of cultural practices. Like quantitative research, qualitative approaches can be judged not only on their rigour, but also on their ability to provide insights into the complex and multifactorial conditions for health and well-being. Indeed, proponents of a 'fifth-wave of public health' have argued for the need to integrate narratives of lived experience with quantitative measurements of biological processes in order to understand and address social inequalities in health . Collating and analysing evidence of embodied experience and embedded social practices, and assimilating them into health and social care policies, is not without problems. But as Greenhalgh has demonstrated in a recent WHO report, 'appropriate and rigorous use of narrative methods' offers policy-makers more robust support for a 'values-based approach that is better able to incorporate diverse cultural contexts' . Research across the humanities and social sciences demonstrates how evidence generated by oral histories, through focus groups and ethnographic methods or by studies of cultural heritage, enables us to: clarify how health and well-being are defined, re-defined and experienced; open up opportunities for more marginalised voices to be heard; understand more clearly the relational and historical dimensions of health and illness; and integrate life-course perspectives into research, policy and practice . Qualitative evidence can also help to improve the interpretation of statistical data. Studies drawing on the lived experiences of women in Romania, for example, indicate how the quantitatively documented low uptake of both HPV vaccination and screening for cervical cancer-and the resulting high level of mortality from this disease -is related to how women's sexual and reproductive health and well-being have been represented and politicised in media and state discourses . Similarly, analysis of historical and literary sources, as well as cross-cultural comparisons, can reveal the social and cultural complexities of dominant Western narratives of ageing; and challenge standardised, predominantly chronological, calibrations of the life course ). However, although historical and anthropological studies have usefully exposed the cultural, political and economic drivers of certain forms of ageism, they have too often neglected to engage with personal experiences, to contest normative notions of the family, or to acknowledge fully the limits of autonomy, with the result that they serve to reproduce the power relations that they seek to disrupt . It is important to note that re-investments in personalised accounts and cultural conditions are being augmented through access to larger and larger data sets and the production of healthrelated data through mobile technologies. These relatively new opportunities for engaging people through critical approaches to volunteered health data made possible by wearable technology, apps and other e-technologies lie behind some of these more optimistic versions of a new public health. Nevertheless, challenges remain in terms of ethical and social forms of consent to the use of such data, recognising and addressing inequalities of access to wearable technologies, interpreting the resulting forms of evidence, and determining how they might contribute to understandings of health and well-being. The recognition of the power of evidence that has either previously been regarded as 'lacking' the attributes of medical sciences or offers new ways of constituting the body is of course welcome. Yet, as we suggest through the notion of healthy publics, these data and the methods through which they are generated will undoubtedly compete in what are crowded and noisy fields that remain riven with uneven power relations and existing epistemic commitments. How these forms of working fare in this public domain of an information-rich society with a surfeit of data and knowledge on health is a matter for careful future investigation. Our third point is that if culture and personal accounts are central to enabling health, it becomes imperative that people with various forms of direct and/or relevant experience of a healthrelated issue can be active partners in the research process and can contribute from the beginning to identifying, prioritising, designing, conducting and disseminating more participatory, action-based research. Such an approach allows health-creating policies and practices to be aligned with the values, needs and expectations of diverse groups within society. Along these lines, a --- Box 1 | Midlife crises and transitions: cultural perspectives In Western discourses, the life cycle has traditionally been divided into stages that are loosely framed in terms of the perceived biological and psychological changes that occur at significant points of transition, such as puberty and the menopause. For example, while accounts of ageing in men have been dominated by the notion of the 'midlife crisis,' which is understood as a psychological struggle for personal identity in the face of death, experiences of midlife transitions in women have traditionally been linked simplistically to the menopause or 'the change.' As a number of historians, anthropologists and literary scholars have argued, definitions and experiences of life stages and the transitions that connect them are shaped by cultural expectations and social relations as much as they are by alterations to our bodies . Thus, carefully contextualised studies of perceptions and representations of ageing in the past and present demonstrate how clichéd narratives of individual crises at midlife persistently fail to acknowledge the diverse determinants of health and the complexity of experiences during middle age or the impact of midlife challenges on the health and well-being of families. Analysis of historical records from the National Marriage Guidance Council and the Tavistock Clinic-which include details of the impact of the breakdown of relationships on partners, but only rarely on their children-as well as contemporary fictional and cinematic sources, indicates how different narratives of midlife carry different psychological, emotional and political meanings in different cultural settings ; and how transitions through midlife are recounted, experienced and regulated in diverse ways. Richer understandings of ageing and crisis-and their consequences for health across an individual life course and for the well-being of others-can be revealed by situating such sources within the context of changing conceptions and expectations of the family; fluctuating patterns of marriage, work, and divorce; and competing interpretations of autonomy, self-fulfilment, and responsibility . Challenging dominant-often stereotypical and discriminatory-narratives of the life course and enabling people to age well through midlife requires attention to new sources and interdisciplinary methods and novel forms of engaged research that reveal the cultural, relational and environmental contexts of crisis and transition. | DOI: 10.1057/s41599-018-0113-9 | www.nature.com/palcomms recent report has suggested that meaningful public engagement is a necessary condition for health creation in the UK National Health Service: enabling a shift away from the '"factory" model of care and repair, with limited engagement with the wider community' , towards something that harnesses existing cultural resources for creativity and potentiality for health and well-being. We would only add that engagement is also a vital means of highlighting and suggesting ways of mitigating material and institutional barriers to the realisation of these opportunities. This need to engage with civil society and community organisations to develop 'novel coalitions' for health and well-being is equally prominent in calls for a shift to Planetary Healtha term used to emphasise the interrelations of human health and the ecological and geophysical processes on which it depends. This expanded sense of health requires a wide public mandate, including corporate bodies and wealthy consumers, but also it will necessarily involve 'the participation, commitment, and ownership of those most affected by threats to health from the degradation of the biosphere,' including 'indigenous communities, the poorest billion living in the most marginal environments of the developing world, the rural poor, and the urban poor in the sprawling cities' . While these call to arms are welcome, there remains a general lack of specificity regarding the means and ends, and the inevitable constraints, of these participatory approaches. Certainly, we can learn from the ways in which traditional public participation in research and policy formation have strengthened culturallyinformed understandings of well-being and begun to shape policy . 1 But these coalitions for health will be impeded by, as well as have to contend with, the very inequalities and uneven power relations that made them necessary in the first place. How publics manage their internal relations as well as continuously present and engage themselves in a crowded public sphere requires more consideration. These collectives will take serious and intense experimentation and work. If we are to incorporate cultural, environmental, relational and participatory approaches into health research and policy that adequately address current and future health challenges, we need to develop innovative partnerships that integrate 'aspects of natural, social and health sciences, alongside the arts and humanities' . At the same time, enabling health and well-being across the life course requires us to prioritise the creation of collective solutions that involve 'all sectors of government, academia, civil society, the private sector and the media' . This, we recognise, requires active participation that involves communities, researchers, and others co-generating meaningful research questions and study designs, debating and contesting what counts as evidence for healthy outcomes, and working across existing disciplinary and institutional boundaries. These are characteristics of a transformative and transdisciplinary approach to culturally informed and engaged research. As we have suggested, all of this requires further thought, experimentation and specification. In what follows, we set out a framework for that endeavour. In particular, we explore the notion of healthy publics, and provide indicative examples of how transdisciplinary research that engages with diverse groupings from the outset can enable and sustain conditions for health and well-being. --- Healthy publics It is now well established that neglect of the social, cultural, historical, and environmental contexts of health can result in poor outcomes. Nevertheless, questions remain about how best to bring these various components together. How can those with expertise and experience in these various fields collaborate in novel ways to enable health? More specifically, what does it take to mobilise and sustain transdisciplinary groupings that can redefine and improve health and well-being? Given our interpretation of a healthy public as a dynamic collective of people, ideas and environments that enable health and well-being, we take it as read in the first instance that this grouping involves those with lived experience of, expertise in, or a history of exclusion from, health and well-being matters. This collective will need to be more diverse than in traditional forms of research and practice, involving lay and professional expertise working at a particular site, or across a number of locations, even internationally. It goes without saying, we hope, that constituting this public will itself involve ongoing but creative struggles over agenda, meanings, and forms of working. Second, the resulting assembly of expertise and experiences may well generate new insights and knowledge that challenge existing practices, knowledge and norms concerning health and well-being. This potential of emerging collectives to raise new questions, to challenge received wisdom on what is healthy and unhealthy, is a key component of the openness of healthy publics. Third, in querying norms and generating new knowledge, these collectives can divide as well as bring together -and may confront -other collectives with different interests and expertise. Indeed, the key division in healthy publics is not between lay and expert knowledge, but within and between different groupings of experts, civil society, business interests and so on, each with varying levels of resource, social power and access to, as well as preferences for, different kinds of evidence . Healthy publics are therefore not only public in terms of their knowledge generation, they are also players in an often crowded and contested public sphere of health claims and counter claims. To be clear, this sense of healthy publics as a generative and contested collective is quite different to more established senses of public health. In traditional deficit-led approaches, the public is understood to be already out there, a population waiting to be informed or incentivised about an issue. It is a target and the aim is to produce an 'informational citizen' through judicious use of behavioural economics, public understanding of science, and arts-led public engagement . Without wanting to dispute the importance of education and incentives, the problems with this kind of public health are well-known. Predefining or circumscribing what counts as healthy , neglecting diverse life experiences, discounting the confusing deluge of often conflicting health messages and sources of information, and ignoring the assets and capacities, as well as the social and material constraints, that affect everyday practices, all result in approaches that can alienate people, underestimate complexity, undermine health initiatives, and widen health inequalities. Co-creating and sustaining conditions for health and wellbeing require something more than this top-down version of public health. They involve a different understanding of what public can mean. In this we draw on two traditions of thinking about the term . The first, the discursive tradition, suggests that people come together to formally and, in western traditions, rationally debate a matter or issue, and so form a public. The second is less exclusive and stems from what Rock calls a materialist tradition. Here a public signals a particular collective of people, their relations with each other and with a host of other bodies and matters . In both cases, instead of the public being out there, already constituted and passively waiting to be informed , in this approach publics are actively and collaboratively brought into being. In Box 2, we compare how approaches to antibiotic resistance can alter once publics become matters to constitute rather than assume. This alternative version of emergent and collective approaches to re-defining, creating and sustaining healthy publics requires considerable time, resources and work. Here, we lay out a number of relevant and interrelated points. First, health and well-being are seldom achieved alone or in isolation. Being healthy often requires carers, families, friends, professionals and many others. Perhaps less obviously, this health collective is not just about people. From the food we eat to the social relations and environment conditions that get under our skin, health is made through and with all manner of others. Recent conceptual reinvestments in epigenetics through to Planetary and One Health concerns remind us that healthy publics are heterogeneous, marked by an interplay of the molecular, the embodied, the social, cultural, environmental, and global. This more-than-or post -human aspect of healthy publics generates challenges of participation and speech. Yet we take it that all actors, including people, genes, animals, geologies, chemicals and so on, are potentially active in the development of a healthy public. Some of these actors are more straightforward than others, of course, but if they are vital constituents of the emerging public then a key task will be to work out how best to sense or register their contributions. Here, the work of sociologists and philosophers on the impediments to speech that are faced by all members of a collective and the role of expert and experienced intermediaries as spokespeople for nonhumans provide a key resource for assembling a public. The result can be a careful and hesitant involvement of both people and others in ways that underline that a healthy public is not something that can be produced at will. Healthy publics are bound or obligated to human and nonhuman realities . Second, these heterogeneous publics will have their own politics and complexities as they struggle to define which realities matter; and to compose themselves in ways that confound any simple 'additional' model of assembly . How they manage the mix of personnel, expertise, ideas, data and evidence becomes an issue for experimentation and evaluation. Here, recent interrogations of the creativity and fraught practice associated with doing interdisciplinarity are relevant. As Barry and colleagues have insisted, interdisciplinarity can, at its best, be inventive and novel. It can take the form of "public experiments" , that challenge norms and speculate on new possibilities. This creative destruction is by no means straightforward and needs to be cognisant of existing commitments to forms of evidence, to institutionalised practices, and the uneven power relations that work to undermine potentially new forms of activity and understanding . As Callard and Fitzgerald chronicle in detail, working across and outside disciplines may be a "fractious" endeavour . Far from simply staging a conversation, sharing knowledge and achieving mutual respect, these public experiments will only be fulfilling if they successfully identify, often on a case-by-case basis, how co-operation can work in practice. They coin the term "entangled experiments" to capture this relational knot of activity, and note how, for social science and humanities scholars working with natural scientists in particular, mutuality is often of necessity displaced by a strategic form of subjugation. Strategies for creating the conditions for healthy publics will need to learn from and add to these honest accounts of working together. But as the issues and power dynamics shift as we work with both other researchers and with non-researchers, who may be significantly more or less 'powerful' than academics, then we expect both mutuality and subjugation to be joined by other terms that express the range of possible relational styles that make working together possible, productive and enjoyable. The figure of the diplomat , intent on maintaining relations and dealing with contrasts in order to avoid conflicts, may be salient and has been mobilised in flooding publics . Knowledge brokering, stripped of its translational or educational overtones, may provide another relational role that needs to be developed . Third, healthy publics are clearly conditioned by the ways in which public services and public life are more broadly constituted. In national and global contexts, the nature of the relation between states, people, and health-related knowledge and service provision has shifted radically in the last four decades. The rise of agencies, contractors, partnerships, privatised providers, markets, and quasi-markets within national health provision is matched by the emergence of Box 2 | Rational medicine use or an antibiotic public? From their first uses in the 1940s and 1950s, antibiotics have been enveloped in debates about inappropriate and rational use. Initially, the role of pharmaceutical companies in encouraging prescription and marketing fixed dose combinations became a target for pharmacologists concerned with encouraging rational use based on evidence from randomised control trials as opposed to sometimes spurious testimonials . More recently, fears of a post-antibiotic era brought about by widespread antibiotic resistance, itself judged to be a result of over and inappropriate medicine uses, have sparked another push for rational therapeutics in human and animal health . And yet, if rational use is defined only in terms of narrowly framed biomedical science, or through often contestable clinical trials, we end up with a classic problem of wrongly framing prescribers, patients and others as misguided. The results can be ineffective. Telling a general practitioner or primary health care doctor that it is irrational to prescribe antibiotics to a patient with non-specific symptoms might miss the effects of; the lengthy time delays should they opt for diagnostics; the litigious fear of letting a condition go untreated; the time and cost pressures on their practice; or a patient's need to receive medical affirmation of an otherwise complex condition. Similarly, telling a farmer that using antibiotic-laced feed to improve the health of their livestock is irrational may miss the cultural economy of just-in-time pressures of production, and the need to fulfil a contract and make a living . In both cases, there is a tendency to ignore the context or situated nature of treatment practices and, more than incidentally, an underplaying of the ways in which private benefits are valorised in practice at the expense of public, collective or commons costs. An alternative approach starts from the proposition that rather than ignoring these practicalities or labelling them as irrational, they become the matters around which a public can form. A collective may be built for example that takes prescription data, or a participatory 'one health' model for delineating the flows of antimicrobial residues within a rural environment, as a means to gather a diverse public who can act together on the issues at hand. An antibiotic public is thus mediated and co-generated rather than addressed or corrected. new forms of private innovation and philanthropy in global health programmes . In science, 'knowledge economies' with a premium set on commercial and proprietorial innovation may reduce the public nature of biomedical and public health research; while the move to shareware and open data may conversely have instilled new possibilities for healthy publics to form. The extent to which, and what kinds of, healthy publics are possible given a particular set of public and private service and knowledge provisions is a key and pressing question within administrations, locally, nationally, and internationally. It is also a matter for historical and comparative analyses which can shape how we understand the cultural contexts of health and well-being, and enable the conditions for healthy publics to emerge. Fourth, healthy publics are dynamic: it takes on-going work to facilitate a thriving collective from the diversity of interests and identities in social settings that may be described as fragmented, complex, global, information rich, and characterised by widening inequalities. Of central concern here are the roles that various media, technologies, data, and materials can play in creating the conditions for a public to emerge, and for sustaining or otherwise suppressing any such public. The role of technological mediation of biomedicine, social media and the internet in allowing otherwise dispersed communities living with orphan diseases to make a disease public is a good example . The distribution of new kinds of environmental monitoring and citizen science projects that allow air quality to be measured in real time provides another illustration of how healthy publics can emerge . Again, issues concerning the forms and qualities of acceptable evidence become key matters for sustaining these healthy publics, as do questions of power and the role of commercial and other organisations who may, for example, have interests in sustaining decidedly unhealthy social and material relations. The citizen sensing project's reflexive approach to the ways in which the data in polluted communities are generated as well as curated or 'creatured,' is a clear example of the need to develop research designs that can work across a full research cycle in for a public to be assembled and sustained. Fifth, there is a need to understand how and in what ways health becomes a problem around which a public can form. Often the very knowledge and technologies that make a healthy public possible , can also alienate or distance people from health issues. A public that is 'at once intimately affected by the issues' , can find itself 'at a remove from' the knowledge and platforms that are in place to publicise those issues; intimate connection to, as well as potential alienation from, public matters characterises many current health issues and cultures . An example would include the bio-medicalization of mental health, where everyday stresses are reconstituted as potentially socially stigmatising diagnoses and mood disorders are modelled according to notions of chemical imbalances that are, at best, unsubstantiated and contested and, at worst, reinforce psycho-pharmaceutical interventions that carry risks of adverse effects and low rates of compliance . Similarly the offshore production of randomised control trials for Pre-Exposure Prophylactic interventions for HIV produced a form of knowledge that was considered by patient groups to be unethical and unrepresentative of the intimacies of day-to-day exposure risks and the practicalities of medicine use . The medicalization and institutionalisation of health coupled with disenfranchisement and disaffection with expertise makes healthy publics a problem space requiring fresh approaches and experimentation. We need to assess the extent to which new kinds of participation in health and well-being can constitute sustainable forms of healthy publics; or whether they simply add to the stresses and strains of sharing responsibilities for health without the powers to make a difference . Finally, this sense of healthy publics as a problem space, where the relationship to matters of health and well-being is felt to be ambiguous or at least far from settled, has implications for health policy. It should be clear, we hope, that a healthy public is not generated through a top-down imposition of what it means to be healthy. Indeed, healthy publics involve a redistribution of expertise, drawing in those who may have previously been excluded or silenced in health debates and controversies, despite their experiences and understanding of cultures and environments of health. Similarly, we doubt the extent to which this problem space can be solved purely through behavioural manipulation of choice architectures. The problem as we see it is not one of alignment of 'the public' with 'the experts,' but rather the articulation or joining together of a public. From this perspective, meaningful and on-going engagement is key to allowing publics to generate questions and possible resolutions that are informed by their collective expertise and experiences. Healthy publics are not populist or simply bottom-up approaches to health and well-being. They require and are made in concert with the collaboration and crafts of cutting-edge medical sciences, social sciences and humanities, and with all manner of nonhuman 'things that force thought' , in order to form collective ways of knowing and appropriate forms of evidence. The key point here is the will to continually work across and outside previous areas of expertise and practice; to co-identify questions and approaches that are relevant to all those affected by the issues; and to generate appropriate forms of evidence that can allow this health and wellbeing knowledge to circulate, gain traction, and contribute towards effective health-care practices and policies. This we would suggest is a description of a truly transdisciplinary and healthy public endeavour. Enabling healthy publics through engaged research Just as deficit-based approaches to public health presume a target population made up of individual people, so academic approaches can tend to assume a pre-constituted public for research. In contrast, healthy publics must be co-generated through research partnerships and practices which focus on relational, rather than individual, dimensions of health, and which seek to alter the nature and quality of those relations . These may range, as we have suggested, from the social relations that characterise a community, to the ecological and material relations that make health possible to the systemic inequalities, institutional and other structural determinants that shape how opportunities for health and well-being are unevenly distributed . The corresponding research approach is one which embraces, rather than ignores or seeks to 'allow for', the complexities of the places, networks and environments in which people live, and looks to create opportunities to generate and foster new kinds of healthy relations. Of course, engaged research is not a new concept or practice. Indeed, before the advent of laboratory and hospital-based Western medicine in the nineteenth century , it was not uncommon for doctors to engage with, and immerse themselves in the work and lives of, people around them as a ARTICLE PALGRAVE COMMUNICATIONS | DOI: 10.1057/s41599-018-0113-9 means of generating shared forms of knowledge about health, well-being, and disease . In more recent health research in the UK, which is dominated by the need to provide quantitative evidence generated by controlled trials, descriptions of how patients and carers will be involved in proposed research, or a detailed justification as to why their involvement in shaping the research is not possible, is a pre-requisite for most funding streams. This requirement for patient and public involvement in funded health research sits alongside the creation of organisations to support public involvement and engagement. 2 Even so, much of the research regarding behavioural interventions in health and well-being takes an instrumental or consumerist approach to public engagement . A group or segment of the population may be consulted for example about eating well or exercising more, or about policies designed to communicate pointed health messages, but this 'consult and target' approach rarely leads to a healthy public being generated through the co-design of an intervention or through the adoption of a relational approach to understanding the cultures within which behaviours are expressed. Although systematic reviews have highlighted the potential of participatory research approaches to improve health outcomes and address health inequalities , far less has been written about how the dynamics of doing engaged research can help to create the conditions from which healthy publics might emerge. Our conceptualisation of engaged research for healthy publics is one that incorporates multiple voices and recognises multiple forms of knowledge and experiences. Engaging from the outset as well as throughout and beyond the research life-cycle, this approach acknowledges that healthy publics are not necessarily bounded by organisations or geography, that they are not constituted simply by their health condition or caring role, and cannot be reduced to mere representation. Rather engaged research facilitates the emergence of healthy publics through sharing experiences and information, provides opportunities to challenge dominant systems of knowledge, and creates possibilities for new practices and care pathways. A particular feature of this approach is that it involves researchers engaging people who have traditionally been marginalised or excluded from health-related research, as well as incorporating the non-human dimensions of health, such as the health of ecosystems and trans-species health. Since such endeavours allow better understandings of how health and wellbeing are framed within different constituencies and how sociocultural and environmental relations affect health, they can enable the co-creation of culturally sensitive and more appropriate responses to health and well-being . Transformative engaged research necessitates building relationships that acknowledge and understand people's lived experiences. Rather than start with individuals as targets for health messages, such as 'eat well, exercise more', engaged research generates recognition of, and has respect for, what people identify as barriers to their health, and these processes of engagement help to create the conditions for trusting and mutually respectful relations to form . Crafting the conditions for these relations to support engaged research requires a negotiation of the research questions and methods, as well as expectations as to what can be delivered, in order to ensure that the research is of benefit to non-academic partners. However, pursuing meaningfully engaged research requires an awareness of often profound differences in perspectives both within and between academic disciplines, and between service users, carers and practitioners . And benefits are unlikely to be shared evenly. For example, monitoring of antibacterial resistance or environmental pollution may well be essential in building a knowledge base for relevant healthy publics, but these activities may be difficult to fund and generate little in the way of esteem and publications for university-based researchers. The capacity to co-create and conduct research in this manner requires institutional structures and processes to support engaged research, as well as clear and transparent roles and responsibilities for the conduct and delivery of research. Given the dynamics of engagement -their ebb and flow -it also requires consideration of a 'follow-on' phase, once the research project has been completed, for people to reflect on whether there are additional research questions to address together in the future. Rejecting approaches that define or segment populations in terms of their 'problems' , or in terms of the manner in which they merely represent people with pre-identified health conditions, engaged research regards publics as selforganising and 'emergent' in response to the processes of engagement themselves. 3 Evidencing and evaluating the varied impacts of this approach requires capturing the dynamics of engagement and the resultant partnerships, as well as the outcomes. Only in this way, can we generate greater understanding of how transdisciplinary engaged research can itself help to create the conditions for healthy publics. As we have already argued, engaged research is likely to involve public and entangled experimentation , generating new alliances and encounters in ways that do not shy away from the fractious politics of building, repairing, and sustaining relationships. Heeding Callard and Box 3 | Transitioning to independent living: a relational approach Young people transitioning from foster care and care homes to independent living are recognised as a high-risk group for behavioural and emotional issues and poor health and educational outcomes . Research has mostly focused on developing interventions targeting individual outcomes such as educational attainment or substance abuse, rather than supporting care-leavers in forming new relations that could positively affect their health. Working with the regional children-in-care team who oversee the transition to independent living, care-leavers and drama practitioners, researchers developed a participatory research approach to understand whether performance-based methods and principles could be used to engage care-leavers in developing new relationships and forming new communities as they transitioned out of formal care. The project used the creation of a theatrical performance and performative activities to enable the co-creation of safe space within with the participants would reimagine their sense of self and their community. These spaces allowed participants to 'perform' the creation of new relations, and of imagined or problematized future life scenarios, activities and performances which in turn were used to engage other care-leavers. This dynamic, relational approach to supporting the transition to independent living started with care-leavers' narratives of themselves and their peers, and used performance-based methods to engage young people, to develop new relations and communities, and to foster a healthier public in terms of social relations and health outcomes. Fitzgerald's call to avoid easy recourse to languages of mutuality and sharing, we need to ensure that engaged research involves experimentation in and an evaluation of the kinds of relationships that are productive and sustainable. Similarly, there is a need to investigate how new forms of evidence can be made public, gain traction, and effect change. --- Conclusions The proposition that health and well-being require publics may not sound particularly new. But this seemingly innocent inversion of public health contains far-reaching challenges to existing research and policy approaches. Healthy publics are evidently 'in the making,' and as such are fragmentary and fragile compositions, conditioned by geographical and historical specificities, and requiring new and often demanding ways of working. They take culture seriously, and so require humanities and social researchers to trace the resources for thinking and acting differently. In doing so, scholars should be allowed and encouraged to use a full range of methods and styles of evidence, subject of course to the established standards of evaluation in these areas. But more than a remote or solely scholarly affair, healthy publics assemble a range of lay expertise and lived experiences, alongside biomedical and social science as well as humanities, to reconfigure a problem or generate collective outcomes. Ageing well across the life-course, for example, requires not just investment in biomedical remedies for later life cognitive impairment, but also recognition of the relational, cultural and environmental-that is, nonpharmacological-factors that enable people to cope with life crises and transitions. Care facilities and practices and local services need to be attendant to a range of cognitive and functional abilities, and to a host of other areas in building healthy public spaces. The challenges of antibiotic resistance require attendance to the multiple rationalities of current medicinal uses in order for us to create and sustain effective medicines for the future. The value of performative approaches to allow people to explore alternative futures is important to the health outcomes of younger age groups, as well to those who might want to explore other possible pathways to healthy outcomes. In such instances, culture is not seen as a barrier to the implementation of better health; rather, culture offers us evidence, resources and possibilities for building and sustaining healthy publics. Finally, as we have been keen to emphasise, any attempt to adopt a 'fifth' or 'cultural wave' of public health requires a shift not only in what we think publics are, but also how they are engaged in research. Healthy publics are collectives that take seriously the social and environmental relations that make health and well-being possible. They do so through a process that is neither top-down nor bottom up, but compositional, enabling the development of alliances where questions and approaches to improving health and well-being are co-created. --- Data availability Data sharing is not applicable to this article as no datasets were generated or analysed during the current study. --- Additional information Competing interests: The authors declare no competing interests. Reprints and permission information is available online at http://www.nature.com/ reprints Publisher's note: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. | DOI: 10.1057/s41599-018-0113-9 | www.nature.com/palcomms
Despite extraordinary advances in biomedicine and associated gains in human health and well-being, a growing number of health and well-being related challenges have remained or emerged in recent years. These challenges are often 'more than biomedical' in complexion, being social, cultural and environmental in terms of their key drivers and determinants, and underline the necessity of a concerted policy focus on generating healthy societies. Despite the apparent agreement on this diagnosis, the means to produce change are seldom clear, even when the turn to health and well-being requires sizable shifts in our understandings of public health and research practices. This paper sets out a platform from which research approaches, methods and translational pathways for enabling health and wellbeing can be built. The term 'healthy publics' allows us to shift the focus of public health away from 'the public' or individuals as targets for intervention, and away from the view that culture acts as a barrier to efficient biomedical intervention, towards a greater recognition of the public struggles that are involved in raising health issues, questioning what counts as healthy and unhealthy and assembling the evidence and experience to change practices and outcomes. Creating the conditions for health and well-being, we argue, requires an engaged research process in which public experiments in building and repairing social and material relations are staged and sustained even if, and especially when, the fates of those publics remain fragile and buffeted by competing and often more powerful public formations.
INTROdUCTION HigherEducationInstitutionsarebecomingmorereceptivetointegratingnewtechnologies intotheirteachingandlearningprocesses,withMassiveOpenOnlineCoursesplatforms beingoneofthemostrecent. TheMOOCisaconceptassociatedwithe-learning andoffersworldclasseducation toanunlimitednumberofparticipantsaroundtheglobewithInternetaccessfor lowornofees .MOOCsmakeuseofsome traditionalcoursematerialssuchasvideosorshortvideoscombinedwithformativequizzes,texts andproblemsets,usingtoolsforinteraction,inordertobuildacommunityofstudentsandlecturers . In these courses, it is also possible to implement formative quizzes, automated assessment,peerandself-assessmentandonlineforumsforsupportanddiscussion .Therefore,theycanoffereducationalbenefitstoHEIs,professorsandstudents ,providingopportunitiesforthousandsoflearnerstoparticipateinfreeonlinecourses . HewandCheung refertothreemaindifferencesbetweenMOOCsandtraditional classroomcourses:"thelargeanddiversestudentenrolmentinMOOCs,thehighdropoutrateof MOOCscomparedtothatoftraditionalcourses,andtherelativelylackofinstructorpresenceor supportinMOOCscomparedtotraditionalcourses".ConcerningthecomparisonbetweenMOOCs andtraditionale-learningcourses,itisrecognizedthatMOOCsinvolvemoreself-directedlearning thanothere-learningcourses,andthatthecentralroleofthemediatorismorerecognisedintraditional e-learningcoursesthaninMOOCs . The underlying technology of MOOCs is recent. The first MOOC was launched in 2008 and in 2011 there was a 'wave of offers' of MOOCs . Atpresent,HEIsareofferingagrowingvarietyofMOOCs, usingdifferentplatforms. ThispaperaimstoanalysethecurrentusageofMOOCplatformsbyHEIs.Thisanalysiswas performed in two phases: the first one consisted of a literature review performed in order to identifyandclassifythepublishedworksandtherecentdevelopmentsinthisarea,identifythe mostpopularMOOCplatforms,andcharacterizethe most usedplatforms andcourses based onthepracticalcasesreportedintheliterature.ThesecondphaseinvolvedtheanalysisofMOOCs offeredbysomeofthemostrecognizedHEIsaroundtheworld,inordertocharacterizeandcompare thecoursesavailableinthetwomostpopularMOOCplatforms. Thepaperisorganizedinfoursections.TheMOOCconceptwasoutlinedinthisintroductory section.ThecharacterizationofthemostpopularMOOCplatformsthroughdatafromasystematic searchisdescribedinthesecondsectionand,inthethirdsectionthemostusedMOOCplatformsin HEIsarecharacterizedthroughthedatacollected.Finally,inthefourthsection,someconclusions anddirectionsforfutureworkarepresented. --- CHARACTERIZATION OF THE MOST POPULAR MOOC PLATFORMS THROUGH A SySTEMATIC SEARCH Inthissection,theresearchmethodoftheliteraturerevisionandabriefcharacterizationofthearticles consideredrelevantarepresented.Insection2.2,themostmentionedMOOCplatforms intheselectedarticlesareidentifiedandthetwomostoftenreferredtoarecharacterized. --- Selection and Characterization of the Selected Articles Themethodologyfollowedinthefirstpartofthestudywasasystematicliteraturereviewcovering theyearsfrom2008to2015,sincethefirstMOOCappearedin2008 . InordertogatherdataaboutpublishedMOOCliterature,themostspecializedscientificdatabases intheareasofInformationandCommunicationTechnologiesandEducationwereselected, whichwereISIWebofKnowledge;ScopusandIEEEXplorer. Theselectedsearchtermswere:MOOC;massiveopenonlinecourse;highereducation; universityanduniversities.Thesearchwasperformedinthetitle,intheabstractandinthe keywords and the search expression used was AND . AnoverviewofthedocumentsidentifiedispresentedinTable1.Thefirstcolumnidentifiesthe databaseusedineachsearch;the2ndcolumnpresentstheresultingnumberofdocuments and,inthe3rdcolumn,theresultingnumber ofthedocumenttypesconsideredinthiswork-articleorreview,fromnowonnamed'article'. Itshouldbeemphasizedthatsomeofthearticlesarecommontomorethanonedatabase.Thedata collectionresultedthusin279articles,54onlyfromISIWebofKnowledge,132onlyfromScopus,1 onlyfromIEEEXplorer,83fromISIWebofKnowledgeandScopus,3fromISIWebofKnowledge andIEEEXplorer,2fromScopusandIEEEXplorer,and4fromallthethreedatabases. Thearticlesidentifiedwerethenanalysedaccordingtotheyearofpublication,thejournalswhere theywerepublishedandtherespectiveauthors. Figure2presentsthenumberofarticlespublishedonMOOCsinthedatabasesanalysed,per year,fromJanuary2012untilDecember2015,anditcanbeseenthatthisnumber hasbeenincreasingconsistentlythroughthisperiodoftime. Concerningthenumberofjournals,bytheendof2015therewere166scientificjournalsofthe 3selecteddatabasesthatpublishedarticlesaboutMOOCs.Ofthese,162hadpublishedlessthan7 articles.Amongtheother4journals,the'InternationalReviewofResearchinOpenandDistance ItcanbenoticedthatthemostreferencedplatformsareCourseraandEdX.Thisresultisinline withthestudybyKim,whichstatesthatthesetwoplatformsarethemostwidelyusedones. InordertocharacterizethemostpopularMOOCplatformsintermsofuniversitiesthatuse them,coursesoffered,andparticipantsinthosecourses,the182articlesweresubjectedtoa furtherselectionprocedurethattookintoaccountvariouscriteria. AccordingtoFigure3,40articleswerefoundthatcharacterizetheCourseraorEdXplatforms thatwereusedinthefollowingstageofthisstudy.Fromthesearticles,33reportempiricalstudies andtheremaining7focusonatheoreticalapproach.Contentanalysiswasperformed onthesearticlesinordertoidentifythefeaturesoftheCourseraandEdXplatformsconcerningfour categories:universities,courses,participants,andrecourses/activitiesofMOOCs.Table3presents thefeaturesrelatedtouniversities:number,nameandlocalizationofuniversitiesthatofferMOOCs. ItcanbenoticedthatthenumberofuniversitiesthatofferMOOCsincreasedfrom2012,where therewere36universitiesofferingMOOCsinCourseraand3inEdXand2013 wheretherewere80identifiedinCourseraand29inEdX .Liyanagunawardena& WilliamsandSubhietal.highlightthattheuniversitiesofferingMOOCsareheavily concentratedintheUSA. Table4presentsthenumberofcoursesofferedintheCourseraandEdXplatforms. ItcanbeinferredfromTable4thatthenumberofMOOCshasbeenincreasing.Itcanbeobserved thatin2012therewere198Courseracoursesand9EdXcourses,in2013 therewere556coursesinCourseraand112inEdX,in2014Courseraoffered 664coursesandEdX182,andinJune2015therewere1041Coursera coursesand611inEdX . Thecoursescoveredmanyareasofknowledge,fromhealthsciencestoarts,musicortechnology ,theirdurationvariedbetween3to20 weeks andtheyrequired 2to15hoursofworkperweek.Thenumberofinstructorsinvolvedinthecourses variesbetween1and13 . Thenumberofpeopleusingtheplatformswere,inNovember2014,morethan10million studentsusingCourseraandmorethan1.7millionstudentsusingEdX .Thelocalization ofthecourses'participantswashighlyvaried . However, the United States had many more students that the other countries .Theageofparticipantswasmostlybetween24and34 ,thegenderprevalencewaslargelyrelatedtothesubject matterwithmorefemalesthanmalesingeneralandthemajorityoftheparticipantswereundergraduate students . Someresources/activitiesusedinCourserawerevideos,quizzes anddiscussionforums andsomeofthecoursesalsousedFacebookand Google+groups . Onlyasmallpercentageofthestudentsinvolvedcompletedthecourse andgottherespectivecertificate .Thiscanbeexplainedbythefactthatmost ofthestudentswantjusttoexplorethespecifictopicofthecourseratherthancompleteit . AnanalysisoftheMOOCplatformsandacomparisonbetweenthemareperformedinthenextsection. --- CHARACTERISATION OF THE MOST USEd MOOC PLATFORMS THROUGH COLLECTEd dATA ThissectioninvolvestheanalysisofMOOCsofferedbysomeofthemostrecognizedHEIsaround theworld,inordertocharacterizeandcomparethecoursesavailableinthetwomostpopularMOOC platforms.Themethodusedinordertocollectthedataispresented,followedbyabrief characterizationandcomparisonoftheCourseraandEdXMOOCplatforms. --- Method Used in Collecting data According to the literature review, Coursera and EdX are the most referenced platforms. These platformswerethenselectedforamoredetailedpracticalstudythatconsistedoftheanalysisof theinformationavailableontheirsites,whichalsoallowedthecharacterizationandcomparisonof coursesofferedthroughthoseplatforms. On22/05/2015informationwascollectedabout107coursesinCoursera,andon26/05/2015 informationwascollectedabout115coursesinEdX. Foreachplatformandforeachcourse,thedatacollectedwere:nameofcourse; HEI offeringthecourse;areaofknowledge;whetherthecoursepresentsanintroductoryvideoor not;numberofinstructorsinvolvedinthecourse;duration;andexpectedworkloadfora studenttosuccessfullycompletethecourse. ThecollecteddatawereanalysedusingtheIBMSPSSStatistics22software.First,adescriptive analysis was performed in order to characterise the courses in the Coursera and EdX platforms. Afterwards,independentsamplest-testswerecarriedoutinordertounderstandwhethertherewere statisticallysignificantdifferencesbetweenthenumberoftheweeksofduration,theminimumand maximumnumberofhoursofworkperweek,andnumberofinstructorsofcoursesinCourseraandEdX. --- Characterisation and Comparison of MOOCs in Coursera and EdX TheCourseraandEdXplatformswereanalysedconsideringthefollowingcriteria:numberofHEIs thatoffercoursesusingtheseplatforms;numberofMOOCsmadeavailablebytheHEIsthatoffer morethanthreecourses;numberandareasofknowledgeofthecoursesavailablethrougheach platform;percentageofcoursesthatpresentanintroductoryvideosummarizingtheobjectivesand maincontentsofthecourse;anddescriptivestatisticsofthedurationofthecourses,theexpected workloadforastudenttosuccessfullycompletetheMOOCs,andthenumberofinstructorsinvolved. Regarding the universities using Coursera, it was found that on 19/05/2015 there were 102 universitiesoffering1036courses ,whileinNovember2013therewere80universities presenting542courses ,andon02/11/2012therewere36universitiespresenting198 courses.ConcerningEdX,on19/05/2015,therewere39universitiesoffering 516courses,whileinNovember2013therewere29universitiesand91courses ,andon02/11/2012therewereonlythreeuniversitiespresenting9courses.Takingintoaccountthecurrentfigures,itcanbeseenthattherelationshipbetweenthenumber ofcoursesandnumberofuniversitiesofferingthecoursesishigherinthe caseofEdXthaninthecaseofCoursera. Onthedateofthisstudy,itwasfoundthatmorethan13millionstudentshavesignedupfor coursesusingCoursera .ThesameinformationfromEdXwasnotavailable,butit waspossibletonoticethat0.4millionstudentsobtainedcertificatesfromEdXcourses . Actually,thenumberofstudentsthatuseMOOCsintheseplatformshasincreasedsubstantially, sinceonMarch2013,2.8millionpeoplelearnedthroughCoursera,andabout1.3millionpeopleused EdX,andbyNovember2014,morethan10millionstudentshadsignedupforCoursera'scourses, andmorethan1.7millionstudentshadsignedupforEdX'scourses . On22/05/2015,Courserahad107coursesavailablefrom54HEIs,whileEdXhad,on26/05/2015, 115coursesavailablefrom39HEIs.InFigure4itcanbeseenthat4ofthoseHEIsoffered coursesinbothplatformssimultaneously. TakingintoaccountthenumberofHEIsthathadcoursesavailableinMay2015,andaswas alreadypointedout,therewere54HEIsusingCourseraand39HEIsusingEdX.Table5presents theuniversitiesoffering4ormorecourses. Biglan'smodelisaframeworkforstudyingthecognitivestyleofscholarsindifferentareas. Thismodelclusterssubjectmatterofacademicareasinthreedimensions.Thedimensionsare:hard andsoftsciences-definedbythe"degreetowhichaparadigmexists",pureandapplied-defined by"thedegreeofconcernwithapplication",andlifeandnon-life-definedby"concernwithlife systems" . The categories are eight: Hard-Pure-Life, Hard-Pure-Non-Life, Hard-Applied-Life,Hard-Applied-Non-Life,Soft-Pure-Life,Soft-Pure-Non-Life,Soft-Applied-Life, Soft-Applied-Non-Life. Fromthisperspective,thecategoriesthataggregatemorecoursesare:Soft,Applied ,andNon-LifeinCourseraandHard,Applied,and Non-LifeinEdX. Figure5presentsthepercentageofcoursesclassifiedineachBiglancategoryforbothplatforms. It can be seen in Figure 5 that the categories that encompass more courses in Coursera are Soft-Applied-Non-Life,whileinEdXtheyareHard-Applied-Non-Lifeand Soft-Applied-Non-Life.Comparingthetwoplatforms,itcanbeobservedthatthereis alargerdifferenceinthecategoriesHard-Pure-LifeandHard-Applied-Life andSoft-Applied-Non-Life. Withregardtotheintroductoryvideo,whichpresentsthecourseinaneasyandfastwayto provideafirstcontactwiththecontentandtheprofessor,itcanbeobserved thatitisincludedin93.5%ofthecoursesfoundinCoursera andin88.7%ofthe coursesfoundinEdX . Finally, some information regarding the duration of the courses and the expected workload forastudenttosuccessfullycompletetheMOOCs,arepresented. Table7showsthedescriptivestatistics ofthedurationofthecourses,thecourses'workloadperweekand numberofinstructorsforbothplatforms. --- Figure 5. Percentage of MOOCs by Biglan categories in Coursera and EdX platforms Onaverage,thedurationsofthecoursesare9.38weeksinCourseraand8.37 weeksinEdX.TheCourseracoursesarebetween4and105weekslong.Itshouldbestressedthatin thiscasetherearetwooutliers,thathaveanimpact onthestatisticsthatwerecalculatedandonthecomparisonwithotherstudies.Nevertheless,itisimportanttonotethataccordingto otherstudies,thedurationofcoursesis6to12weeksand5to15weeks ,respectively. RegardingEdX,thecoursesanalysedtookbetween2and17weeks,whileaccordingtoHaggard ,theMOOCscoursesareusuallybetween4and10weekslong. Onaverage,theminimumworkloadoftheCourseraplatformwasfoundtobe3.93 hoursperweek,andthemaximumwas6.10hoursperweek.InEdX,onaverage,the minimumworkloadwasfoundtobe4.14hoursperweek,andthemaximum5.07hoursperweek.AccordingtoAudsleyetal.ofthevariables consideredforeachplatform.Foreachvariable,thesevereoutlierswereremoved . Theresultsoftheindependentsamplest-testsforthevariablesinCourseraandEdXplatforms arealsopresentedinTable8.
ThisarticleanalysesthecurrentusageofMassiveOpenOnlineCourses(MOOCs)inHEIs.First, aliteraturereviewisperformedtoidentifyandclassifytherecentdevelopmentsintheareaandto characterizethemostusedplatformsandcourses.Followingthis,ananalysisofMOOCsofferedby someHEIsiscarriedouttocharacterizeandcomparethecoursesavailableintheplatforms.Concerning themainfindings,theliteraturerevealsthatusageofMOOCshasbeengrowinginrecentyearsand thatCourseraandEdXarethetwomainplatformsused.TheanalysisofMOOCsavailableinthose platformsshowsthatthenumberofuniversitiesusingthemandthenumberofcoursesofferedhave beenincreasing.Thecomparisonbetweenthecoursesavailablethroughtheabove-mentionedplatforms showsthatEdXismoreinterdisciplinary.Theoutcomesofthisarticlearevaluableforresearcherson ICTuseinHEIandmayhelpprofessorsimplementingMOOCsintheirownenvironment.
Introduction Globally, the proportion of older people is increasing as a result of decreasing fertility rates and improvements in life expectancy [1]. About 80% of the world's population aged 60 years and older will be living in low-and middle-income countries by 2050 [2]. Without adjustments to current policies and programme, demographic ageing has the potential to impact labour markets and workforces, taxation and pension systems, and health and social care systems, including family composition and living arrangements [3]. As of 2011, the World Health Organization estimated that 15% of the global population is disabled [4]. More recent estimates are not available, but demographic ageing worldwide will contribute to disability levels. The number of older people with disability in LMICs is predicted to quadruple by 2050 [5]. Estimates from the 2002-2004 World Health Survey showed that disability prevalence among people aged 60 years and older was 43.4% in lower-income countries and 29.5% in higher-income countries [4]. Older people living with a disability are more likely to have low socioeconomic status, low education levels, poor social networks, be less engaged in the labour force, and have poor health [3]. Activities of Daily Living are one common measure used for estimating disability among older people [6]. The ADL questions assess people's ability to perform activities such as eating, dressing, bathing, using a toilet, and getting in and out of bed [7]. Limitations in ADLs significantly predict the need for assistance, caregiving, nursing home placement, and health care utilisation [8,9]. Sociodemographic characteristics, health behaviours, chronic medical conditions, and social capital are significant predictors for ADL disability and mortality. Older age, female sex, low education, low socioeconomic status, being widowed or single, lack of access to social capital, sedentary physical activity, obesity, smoking, or having at least two chronic conditions are commonly associated with disability [10][11][12][13][14][15][16][17][18][19]. Much of the existing evidence regarding ADL related factors comes from studies conducted in high-income settings, while evidence from LMICs are scarce. The burden of disability in LMICs is predicted to increase as a consequence of the ongoing demographic transition towards an ageing population. Therefore, knowledge about the factors associated with disability is important for developing future health promotion and prevention programs in LMICs [20]. A few studies in LMICs have explored the association between sociodemographic factors, chronic diseases and disability [21][22][23]. However, comparable nationally representative estimates of disability and country-specific associated sociodemographic and health-related factors in LMICs is lacking [24]. In this study, we analysed the country-specific socioeconomic and health-related factors associated with disability among people aged 50 years and older in six LMICs. --- Materials and Methods Cross-sectional data from the WHO longitudinal multi-country Study on Global AGEing and Adult Health Wave 1, conducted in China, Ghana, India, Mexico, the Russian Federation, and South Africa during 2007-2010 was used for the analyses. These six countries were selected because they represent LMICs in four different world regions and are in different stages of economic development and of demographic and epidemiological transition [20]. In this study, the older population was defined as 50 years and older because in LMICs, the life expectancy at birth was 12 years lower than in the higher income countries. Thus, by applying the usual definition of older population , the size of the older population would be much smaller [20]. WHO SAGE used multistage cluster sampling to generate nationally representative samples of people aged 50+ in each country. The response rate for respondents age 50+ for each country varied from 53% in Mexico to 93% in China [25]. SAGE collected information on sociodemographic characteristics, health behaviours, social networks, health status, and disability through face-to-face interviews. More detailed information on study design and methods have been published elsewhere [20,25]. --- Main Outcome Variable The main outcome for this analysis is ADLs. Five questions from the World Health Organization Disability Assessment Schedule II questionnaire were used for assessing any difficulties in performing daily activities in the preceding 30 days , and getting to and using the toilet). The response was in a Likert scale format ranging from "without difficulty" to "with extreme difficulty". In this study, respondents were considered as "with disability" if they reported any difficulties in performing at least one of the five daily activities listed above [26]. --- Covariates --- Sociodemographic Factors Age was grouped in ten-year age categories . Marital status was dichotomised into "partnered" and "not partnered" . Education level was grouped into high level , middle level , and low level . We define social capital as the quality, quantity, and degree of the connectedness of social relations [27]. Individual social capital was assessed based on access to two forms of social capital, structural and cognitive, in the preceding 12 months. Structural social capital refers to the extent and intensity of one's social network and participation [27]. Questions on bonding, bridging, and linking structural social capital asked how often respondents participated in any social activities. Cognitive social capital includes perception of support, norms of trust, and reciprocity [27]. It was measured through questions on general trust, personal trust, and safety. More details on how the social capital variable was derived have been reported elsewhere [28]. Respondents were then categorised into those with access to both dimensions of social capital, structural social capital only, cognitive social capital only, and those with no access to either structural or cognitive social capital. Location of residence was classified into urban and rural areas. Urban areas included any area that had been legally proclaimed as urban and rural areas included commercial farms, small villages, and other areas that were further away from towns and cities [20]. Socioeconomic status was classified based on household characteristics such as housing characteristics, household's ownership of durable assets and access to water, sanitation, and types of cooking fuel. We created wealth quintile using principal component analysis , the 1st quintile of wealth status represents the poorest and the 5th is the wealthiest households. --- Health Behaviours and Chronic Conditions Physical activity level was measured using the Global Physical Activity Questionnaire consisting of 16 questions that measure the frequency and duration of physical activity in three domains including work, transport-related, and recreational. Metabolic equivalences were calculated from the questions, and based on the METs value and duration of activities [29,30], respondents were grouped into three groups of high, medium, and low level of physical activity. Body Mass Index was calculated based on anthropometric measurements of weight and height , and then grouped into underweight , normal , overweight , and obese [31]. Presence of chronic conditions-Respondents were asked if they had been diagnosed with any chronic conditions including arthritis, stroke, angina, diabetes, chronic lung disease, and asthma, and if they had taken medication for their condition in the last 12 months. In addition, arthritis, angina, and asthma were also assessed by using a set of validated symptom-based questions [20]. Hypertension was determined if respondents had been taking medication in the last 12 months or the average of measured systolic blood pressure was ≥140 mmHg and/or diastolic blood pressure was ≥90 mmHg. Based on the presence of the chronic conditions above, respondents were grouped into three groups: no chronic condition, with one chronic condition, and with two or more chronic conditions . Depression was assessed using 18 questions derived from the World Mental Health Survey version of the Composite International Diagnostic Interview covering the presence of 10 depression symptoms within the prior 12 months. The International Classification of Diseases tenth revision criteria of depression was used to determine respondents with major depressive disorder [32]. According to the ICD-10, assessment of depression uses two criteria: 1) Reported at least four of the 10 symptoms present for most of the day or lasting for more than two weeks, and 2) at least two of the following symptoms are present: depressed mood, loss of interest, and fatigability. In addition, respondents who reported taking any medication or other treatment for depression during the last 12 months were also categorised as having depression. --- Statistical Analysis A descriptive analysis was employed to explore participants' characteristics and the prevalence of ADL disability in each country. The association of sociodemographic characteristics, health behaviours, social capital, and ADL disability in each country was examined using multivariable logistic regressions. The individual effect of each covariate was tested in a univariable model. Covariates with significant effects or having been shown to be associated with ADL disability were included in the final model. An individual-level post-stratification weight was used to adjust for population age and sex distributions in each country. We tested for multicollinearity as well as for interaction terms between sex, age, and health-related covariates. We found no significant multicollinearity, but we found some significant interaction terms in China, Ghana, and India. A significant interaction of age group with depression and number of chronic conditions was found in China. The interaction between sex and age group was only significant in India. In Ghana, the interaction terms between sex and BMI, and age groups and physical activity were significant. We added the interaction terms in the final model for those three countries, but there are no major differences in the results and interpretations. A goodness-of-fit test was conducted to understand how well the models fit our data. All analyses were performed using Stata 15.1 . --- Ethical Consideration The WHO Ethical Review Committee reviewed and approved the SAGE survey . SAGE was also reviewed and received ethical clearance from implementing partner institutions in the respective countries. --- Results A total of 36,428 individuals aged 50 years and over participated in the WHO SAGE wave 1. We excluded 11% of respondents who had missing data in any variables that were included in this study. A total of 32,567 individuals were included in the subsequent analysis . The sociodemographic characteristics of respondents are presented in Table 1. Overall, the majority of respondents were women , belonged to the youngest age group , were married or cohabiting, had a low education level , and had access to both structural and cognitive social capital . The majority of SAGE respondents had a high level of physical activity, except those in South Africa. The prevalence of obesity varied from 3.5% in India to 49.8% in South Africa. The Russian Federation had the highest prevalence of multimorbidity . The most common chronic conditions reported by SAGE respondents were hypertension and arthritis . Figure 1 shows the prevalence of activities of daily living disability among women and men aged 50+, by country. China had the lowest prevalence of disability in both men and women, in contrast to India . Overall, women consistently reported a higher prevalence of disability compared to men in all countries. Table 2 presents the associations between sociodemographic characteristics, health behaviours, social capital, and ADL disability by country, adjusting for other potential confounders. The mutual factors associated with ADL disability among six SAGE countries were age, presence of chronic conditions, and depression. The odds of reporting an ADL disability increased with age, particularly in the oldest age group . Multimorbidity increased the odds of reporting an ADL disability by three to five times compared to participants without any chronic condition in all the six SAGE countries. Depression increased the odds of reporting an ADL disability by 1.5 times in Ghana to 2.5 times in China . Note: The Chi-square test was used to assess the association between sex and ADL disability, p < 0.001 Figure 1 shows the prevalence of activities of daily living disability among women and men aged 50+, by country. China had the lowest prevalence of disability in both men and women, in contrast to India . Overall, women consistently reported a higher prevalence of disability compared to men in all countries. Table 2 presents the associations between sociodemographic characteristics, health behaviours, social capital, and ADL disability by country, adjusting for other potential confounders. The mutual factors associated with ADL disability among six SAGE countries were age, presence of chronic conditions, and depression. The odds of reporting an ADL disability increased with age, particularly in the oldest age group . Multimorbidity increased the odds of reporting an ADL disability by three to five times compared to participants without any chronic condition in all the six SAGE countries. Depression increased the odds of reporting an ADL disability by 1.5 times in Ghana to 2.5 times in China . Note: the significant values of p < 0.05 , p < 0.01 , p < 0.001 . Our findings reveal that factors associated with ADL disability varied across six SAGE countries. Women had higher odds of reporting an ADL disability than men in China , Ghana , and India . Respondents with a low education level had higher odds of reporting a disability in almost all SAGE countries, except in Mexico and South Africa . Having no partner was insignificantly associated with ADL disability, except in Mexico where older Mexicans who are not partnered were 50% less likely to report an ADL disability . Socioeconomic status was significantly associated with ADL disability only in China, India, and Mexico , with respondents who resided in households with a low wealth quintile having increased odds of reporting an ADL disability. Older people who lived in a rural area in China and Mexico had higher odds of reporting an ADL disability . Having no access to social capital increased the odds of reporting an ADL disability to about 2.6 times higher in China and about 4 times higher in South Africa . In addition, being overweight or obese was only significantly associated with ADL disability in Mexico and in the Russian Federation . A low physical activity level increased the odds of ADL disability in all SAGE countries except in Ghana and South Africa . For a moderate physical activity level, the odds were only significant in China and Ghana. In contrast, older people in South Africa with a moderate level of physical activity were 36% less likely to report an ADL disability compared to their counterparts with high level of physical activity. --- Discussion The main findings of this study show a diversity of determinants associated with ADL disability among older people aged 50 years and over in six SAGE countries. Our findings strengthen the evidence of the associations between sociodemographic characteristics, health behaviours, social capital, depression, and disability. In this study, significant gender effects were observed and varied across the six SAGE countries, however these effects were only significant in China, Ghana, and India. Previous studies have suggested that the higher prevalence of disability among women was due to a higher prevalence of chronic diseases [16] and especially non-fatal disabling health conditions [33]. Using the SAGE data, Williams et al. conducted a decomposition analysis of disability among older people aged 50+ in China and India. They found that gender inequality in disability in India was attributed predominantly to education levels, employment, and the presence of chronic disease [23]. It is also possible that there are some unexplained gender effects on ADL disability, such as gender-specific sociocultural factors that explain why women are more likely to develop an ADL disability in some countries. Further study is needed to explore the gender-specific factors. Age and chronic conditions have been reported to be significant factors for ADL disability in previous studies [13,34,35]. In this study, the effect of age on disability could be related to physiological changes in body functions as people age. A study among older Brazilian people aged 60+ showed that functional decline was apparent even among respondents without any cognitive impairment and medical problems [36]. In addition, the higher prevalence of disability in older populations could be related to the higher prevalence of chronic conditions in this population. Consistent with findings from other studies in Spain [13], Brazil [34], and Canada, our findings show that among health-related factors, the number of chronic conditions has the strongest effect on ADL disability. Unlike physical activity or BMI, the presence of chronic diseases has a direct effect on people's ability to perform ADL tasks, as chronic diseases can lead to a deterioration of body structure and function [37]. Regarding access to social capital, our findings echo previous studies in Japan and Brazil, which found that limited access to social capital was associated with ADL disability among the older population [18,38]. Using similar data , Ng and Eriksson reported a positive association between access to social capital and self-reported health among older people in these SAGE countries [28]. The effects of access to social capital on ADL disability are more likely indirect. Structural social capital has a significant role in preventing depression [39]. In general, access to social capital could increase access to health information which in turn helps in sustaining positive health behaviours [40][41][42]. The diverse association observed between household wealth and ADL disability across the six SAGE countries could be moderated by the different patterns of chronic disease risk factors, multimorbidity, and access to health care and health prevention program observed among older people in these countries. Irrespective of socioeconomic status, older people in lower income countries were more likely to have higher BMI, live a sedentary lifestyle, and smoke. In a previous study examined the socioeconomic inequalities of chronic disease risk factors in LMICs using data from the World Health Survey [43], the researchers showed that the patterns of chronic disease risk factors differed across sexes and income groups. As countries grew richer, adoption of healthy behaviour increased in all wealth strata [43]. This association could lie in the pathway between socioeconomic factors and disability observed in our study. Physical inactivity was strongly associated with ADL disability among the older population in LMICs, which is in line with other previous studies [13,14,42]. The protective effect of physical activity on ADL disability results from complex pathways and is likely multifactorial [14]. For example, being physically active has been shown to reduce inflammation biomarkers, thus preventing the progression of chronic diseases. In addition, physical activity may increase social interactions, which could prevent depression. Both of these pathways may prevent disability [14]. Our studies also confirmed the association between depression and physical limitation shown in previous studies [44,45]. Some theories suggest that depression could result in disability directly and indirectly. Long-term depressive symptoms such as lack of sleep and appetite may directly cause functional decline. Depression may also lead to unhealthy behaviours that in turn cause disability [44]. On the other hand, disability may limit one's activities and reduce their social interaction, possibly leading to depression [44,46]. Studies have shown that overweight and obesity were significantly associated with disability among older population [10,11], which is consistent with our findings. The association between BMI and ADL disability could be indirect as a high BMI is a known risk factor for chronic conditions, and chronic conditions increase the risk of disability [47,48]. Obesity is also a risk factor for falling among older people, which could result in physical limitations [49]. In addition, severe obesity could cause a general sense of fatigue and motor limitations that could negatively affect one's ability to perform ADLs [50]. --- Strengths and Limitations of the Study Even though the associations between sociodemographic, health behaviours, and disability are well known in high-income countries, cross-country comparisons using harmonised instruments in LMICs are scarce. Our study is among the first study to fill this gap. The WHO SAGE employed a multistage cluster sampling design to generate a nationally representative sample. Furthermore, standardised instruments were used in all SAGE countries. These methodological measures aim to increase the external validity of findings in this study to the target population and ensure comparability of the findings across the SAGE countries [25]. In addition, our study tested various potential factors of ADL disability, including socioeconomic, social capital, physical and mental health, thus allowing for a more comprehensive outlook on factors associated with disability. This study has several limitations. First, due to the cross-sectional nature of the data, it is not possible for us to ascertain the causal associations. Poor access to social capital can lead to disability among older people, but those with a disability are also at higher risk of having lower access to social capital-an example of reverse causation that could not be addressed in this study. Further investigation using panel data from the WHO SAGE when the 2nd Wave of the dataset is publicly available could address this problem. Second, the current study used BMI as a nutritional status measure in an older population. Even though BMI is the most commonly used measure, we acknowledge that there is controversy over whether BMI is an appropriate measure for older people as older people may experience changes in their stature and body composition due to natural physiological changes or diseases [51][52][53]. Third, most of the variables in the WHO SAGE, including the disability questions, are self-reported. This may have led to overestimation or underestimation of the true prevalence of ADL disability among older people. Future studies should attempt to measure the prevalence of disability by combining the subjective measurements of ADL disability with more objective measurements of disability such as walking speed and the grip strength test. --- Conclusions The factors associated with self-reported ADL disability among older people aged 50+ vary across the six SAGE countries. Age, presence of chronic conditions, and depression are common factors related to disability among the older population in all SAGE countries. Identifying determinants associated with ADL disability among older people in LMICs, which are currently at different stages of epidemiological transition and have different health systems, can help inform how health prevention programmes can best be implemented considering different country-specific factors. --- Author Contributions: Conceptualization, S.K.L. and A.S.; Data curation, S.K.L.; Formal analysis, S.K.L., N.N. and A.S.; Methodology, S.K.L. and A.S.; Supervision, A.S.; Visualization, S.K.L.; Writing-original draft preparation, S.K.L.; Writing-review and editing, S.K.L., N.N., P.K. and A.S. --- Appendix A
The low-and middle-income countries (LMICs) are experiencing rapid population ageing, yet knowledge about disability among older populations in these countries is scarce. This study aims to identify the prevalence and factors associated with disability among people aged 50 years and over in six LMICs. Cross-sectional data from the World Health Organization (WHO) Study on global AGEing and adult health Wave 1 (2007)(2008)(2009)(2010) in China, Ghana, India, Mexico, the Russian Federation, and South Africa was used. Multivariable logistic regression analyses were undertaken to examine the association between sociodemographic factors, health behaviours, chronic conditions, and activities of daily living (ADL) disability. The prevalence of disability among older adults ranged from 16.2% in China to 55.7% in India. Older age, multimorbidity, and depression were the most common factors related to disability in all six countries. Gender was significant in China (OR
only learns u's conditional probability distribution, ignoring the rest of V , to a convolutional neural network-based algorithm that receives the activity of all of V , but does not receive explicitly the social link structure. We tested our algorithms on four datasets that we collected from Twitter, each revolving around a different popular topic in 2020. The best performance, average F1-score of 0.86 over the four datasets, was achieved by the convolutional neural network. The simple, sociallink ignorant, algorithm achieved an average F1-score of 0.78. --- Introduction The propagation of ideas and innovations has led to political, cultural and economic changes. Social scientists found that ideas tend to flow along social links, in a similar manner that an epidemic infects a population [11,15]. Understanding how information propagates in online social network platforms has significant real-world impact, from the political stability of states to marketing. Significant efforts have been invested in predicting various properties of information cascades, such as size [25], temporal growth [27], and virality [7]. Researchers mainly studied transient-copy propagation protocols , where content is simply replicated in a network, like a re-tweet . It is tempting to think that information propagates in OSNs according to epidemiological models such as Bass [3] or SIR [23]. However several "cautionary tales" were told by various researchers regarding the validity of this image. For example, one important assumption in epidemiological models is that all newly infected individuals arise from the susceptible set . However, mass media marketing efforts rely on a "broadcast" mechanism, where a large number of individuals can receive the information directly from the same source, which need not be their neighbor. Indeed, [5] who studied information cascades in Flickr, found that out of 10 million total favorite markings, 47% were propagated not through the social links, but via other broadcasting mechanisms that Flickr employs. Also [14] found that 33% of the retweets in their dataset credit users that the retweeters do not follow. Furthermore, unlike the epidemiological picture of a disease spreading in waves, it was observed that most cascades are extremely shallow and wide. For example, [18] found that the average size of the diffusion trees in Twitter is 1.3, and that the vast majority contain only 1 node. This phenomenon is also observed in other platforms such as Digg and Flickr [5,25,2,17], email forwarding [35] and recommendation chains [26]. The majority of works focus on macro prediction tasks such as predicting the depth of a cascade, its size, or estimating other macro properties such as the transmission rate. Micro-level prediction tasks, such as whether a tweet t will be retweeted or not, received considerably less attention. Even when microscopic properties were computed, like the probability that user u will transmit information to v, it was used to derive macroscopic properties such as cascade size, and not for prediction in the standard machine-learning setting . In [14], two model-based algorithms for the task of url retweet prediction were proposed, based on the At-Least-One and Linear-Threshold schemes, and tested for a set of 100 popular URLs, whether they will be retweeted in the following time interval or not. In [31], machine learning was used for the task of predicting for a stream of tweets which will get retweeted. We study a different setting, which is user-centric and not post-centric. Given a user u ∈ V , V is some fixed set of users, and a time interval [t 0 , t 0 + ∆T ], the task is to predict whether user u is going to react to an existing post by some user v ∈ V . The input to the prediction algorithm is a snapshot of the activity of all users in V at time [t 0 -∆T, t 0 ], namely a binary vector indicating whether each user was active or not. The user-centric task coincides with the post-centric task if all users react to at most one post. This is indeed the case for most users in our datasets, as Figure 4 demonstrates. In this work we address some fundamental questions regarding the nature in which information propagates in OSNs: Can we perform the prediction task without any other features besides the time series of the users' postings Is there an algorithm which performs this task, but is model-agnostic? namely, it does not rely on epidemiological models, and Does the algorithm need to know the social links ? Or can the algorithm implicitly learn this information from the snapshot it is given as input? Our Contribution. We answer these questions, providing new insights into the way information propagates in online social media platforms. We design several prediction algorithms, each using a different approach, including a neural network based algorithm, T W CRN , which does not use the adjacency matrix of V . We evaluate our approach on four datasets, spanning a total of 77M tweets, which we collected from Twitter in 2020, following four different major events in that year. Our algorithm T W CRN performed the prediction task with an average F1 score of 0.86 over all datasets, which were highly imbalanced . We were able to verify that indeed T W CRN implicitly learns information about the social links using a permutation test, where we randomly permuted the input to the NN at train time, contaminating social links information. The algorithm performed very poorly in this setting. We further designed a very intuitive algorithm, which for every user u ∈ V learns the conditional probability that u will re-share something in this time interval given u's activity in the previous time interval . Intuitively, we are learning the "trends" of u, is he a lazy-twitter or a chain-tweeter. The performance of this algorithm was extremely competitive to T W CRN , with an average F1-score of 0.78. Thus we arrive at two new insights. The first is that a relatively accurate prediction at the user's level can be obtained by simply learning the user's habits, regardless of the social links. The second is that a higher accuracy can be achieved by integrating information about social links, but, this information need not be served explicitly, but rather the algorithm can learn the relevant links by itself. From a technical point of view, we are able to train a rich algorithm with many parameters, T W CRN , on a large set of users, 10 4 . Previous work either trained a simple model on a large set [31], or a rich algorithm but trained on a small dataset . To overcome the computational challenge we wrap the NN with an encoder-decoder pair, to reduce dimensionality. As far as we know, we are the first to use neural networks to perform such a prediction task, with such a success rate. The F1-score achieved in [31], using many more features, and the passive-aggressive algorithm of [9] was 0.46, albeit for a somewhat different problem and setting. Neural networks were used very recently for the first time to predict macro properties of cascades , [21,27], or to predict the influence of a given user based on activity features [32]. Our final contribution is to make all datasets openly available to the community, along with the Python code that we wrote for all algorithms. --- Related Work Users' influence in OSNs and the diffusion processes that stand behind information propagation in them were extensively studied in the past years. The works we survey here are by no means a concise review of the huge body of work available on this topic. One line of work tries to maximize the size of the cascade by picking a good set of influential users that will be the starting seed. In [28], the authors tried to predict users' influence by construction of differential equations extended from the Susceptible-Infected model. In [33], the authors incorporated user-specific topic distribution and network structure, and in [22,6] by means of a greedy algorithm. In [12], the authors introduce the idea of novelty decay into the Independent Cascade model from [1]. Another line of work is focused on understanding information diffusion as they unfold, without manipulating the seed. These works typically suggest a generative model that underpins the information cascade and then check how the model fits either simulation or real-world datasets. Examples include [36,29] where a self-exciting point process is used to develop a statistical model to predict cascade size; cascades in heterogeneous scale-free networks were studied in [30] under the SIS and SIR model; a cascade generating function was developed in [16] to compute macroscopic properties of cascades, such as their size, spread, diameter, number of paths, and average path length. In [27] an end-to-end deep learning approach was designed to predict the future size of cascades, without using any hand-crafted features or generative model assumptions. The third line of work does not deal with prediction but rather with descriptive analysis, providing insights to the distribution of cascade size, depth, width and adoption rate [5,25,34,18]. Fewer works tried to predict microscopic post-level or user-level events. In [14], the task was to predict whether a popular URL that was retweeted several times, will be retweeted in the following time window. The method was again model-based, upgrading the Linear Threshold and At-Least-One models with additional features to achieve better prediction . In [31] machine learning was used to predict retweets of an original tweet, albeit with a rather low F1 score . Our work continues this line of work but differs in two main aspects: we do not have any model-based assumptions as in [14], and therefore we don't use any handcrafted features , that were used also in [31]. Furthermore, our approach does not require an explicit description of the social links. --- Methodology Previous studies on user influence in social networks in general, and Twitter specifically [14,31], point out that the main predictor of users' activity is the users he follows . We consider three models where the information about the user's neighbors is taken into account to various degrees. In the first model, Tweet Prior Network we completely ignore the user's social links and only consider its past activity, see Figure 1. Our second model, the Tweet Mask Network , is a neural network that takes into account the user's social links and ignores non-adjacent users, Figure 2. Finally, we train a fully-connected convolutional model, Tweet Convolutional Residual Network , that considers all the activity of all the users in the network and not only the social links, Figure 3. The input to each NN is the same, a vector τ i ∈ {0, 1} |V | , which for every user u ∈ V specifies whether he was active at time interval [t i -∆T, t i ] or not. The output vector, τi+1 ∈ R |V | is the prediction for every user whether he is going to react to some post at time interval [t i , t i + ∆T ] or not. --- Models definition Tweet Prior Network The architecture of this model is just two layers, input and output, as shown in Figure 1. All output nodes in the network use the tanh activation function, where w u is the weight of user's u single edge, and x u , the input, is the entry in τ i corresponding to u. MLE This model is a simpler variant of the T W P N model where for every user u ∈ V , the conditional probabilities are learned: p a,b u = P r I 0 u = a I -1 u = b , Figure 1: TWeet Prior Network schematic representation. The vector τ i is the activity vector in the time window [t i -∆T, t i ], and τi+1 is the predicted activity in time window [t i , t i + ∆T ]. Tweet Mask Network This neural network extends T W P N by taking into account the information at the user's neighbors as well. The architecture is a fully connected 2-layer Feed-Forward Neural Network [13] . Again, all output nodes use the tanh activation function. While the network is fully connected, for each output node u we mask the non-adjacent input nodes. For each user u, the output is given by tanh w v,u x v ), where x v is the entry in τ i corresponding to v. The weights w v,u between the user u and the ones he follows v ∈ N can be interpreted as the influences, which the NN learns by itself. Tweet Convolutional Residual Network This model takes into account all possible connections between users, no restricted to the fol-lower social links. The model consists of four parts as shown in Figure 3, as follows: Encoder -A standard encoder, as described in [20], which maps an activity vector of dimension D to dimension 100 = d << D. Each layer down samples the dimension of the input by a factor of 2 until the output size is d = 100. The point of this layer is to reduce the computational effort of training the main part, ConvResNet, by reducing dimensionality. Inflater -a simple procedure which receives a vector of size d, and transforms it into a d × d matrix by copying it row-wise. This step is necessary because ConvResNet [19] is used for images. ConvResNet -We study separately two architectures, ×18 and ×34, presented in [19] which were developed for image processing tasks. This is the core of the prediction mechanism. The ConvResNet architecture enables extremely deep neural networks to be successfully trained by a standard stochastic gradient descent with backpropagation, overcoming the problem of performance degradation present in very deep neural networks. Decoder -Following [20], the decoder maps the compressed vector to its original dimension D. It does that by up-sampling the input vector by factor of 2, until the output size reaches the original input dimension D. --- Training and testing the models A cascade progresses in time, as well as in space . In this paper, we focus on the time-aspect, and we partition the timeline along which the data was collected into equal-sized slices of ∆T = 12 hours each. For each pair of consecutive time periods i, i + 1 we define two vectors τ i , τ i+1 as mentioned already above: τ i is an indicator of all activity types and τ i+1 only of reaction activity. The prediction task is, given the vector τ i , predict the reaction vector τ i+1 . We train each model in the same manner, taking time period i = 1, . . . , K as the train, and testing on time periods i = K + 1, . . . N , where N is the total number of time slices, and K = 0.9 • N . We further split the train into train and validation, resulting in a 70-20-10 data split rule. To avoid over-fitting, we stopped the training if the loss on the validation set did not improve for 50 epochs. We used the ADAM optimizer [24] with default settings for all three networks, T W P N , T W M N , and T W CRN . We chose the Mean Squared Error for the loss function. To enrich the gradient flow in the training step, instead of binary vectors τ i we used a technique in which each 1 was replaced with a sample from a normally distributed random variable N , and 0 with a sample from N . To find the conditional probabilities of the MLE model, p a,b u in Eq. , we counted for user u, the fraction of times that each combination a, b appeared in the pairs τ i , τ i+1 , for i = 1, . . . , K. At the test step, we fed each model with τ i , for i = K + 1, . . . N , to receive the predicted vector τi+1 . Each entry in τi+1 is set to 1, if positive, and 0 if negative. The MLE probabilities were rounded to 0 or 1. This vector is then compared with the real τ i+1 to compute precision, recall, and F1 score. --- Data We collected four datasets from Twitter, using the Tweepy API. Each data set concerns a different major event at that time: Volcano , Kobe , Princess and Beirut . Table 1 describes the keywords that were used and the size of each dataset, and Table 2 shows the breakdown according to different types of posts. There are several possible ways of posting and interacting on Twitter. The simplest post is a tweet, i.e., a post that the user writes himself and is not related to any other post. Tweets appear on the home timeline of the sender, and on the home timelines of all his followers, but Twitter's time-line algorithm keeps changing frequently. Features like "in case you forgot" break the synchronous time-line structure, and suggestions of tweets from users one does not follow break the social link structure. There are three possible reactions to a tweet: mention is a post that contains the "@username" syntax in the body of the text, reply is a direct response to another tweet and a re-tweet, which is a propagation of someone else's tweet . All three reactions will be visible on the home timeline of the reacting user and on the timeline feed of all his followers. The next key component in the data pre-processing was to recover the social links between the users. We can infer two types of graphs. The first is the mention graph, in which a link exists between user u and v if u reacted to v's post . Another graph, the followers graph, is the one recovered using Twitter's API where a link between u and v exists if user u follows v. Note that there need not be an inclusion relationship between the two sets of links, but the way our dataset was collected , entails that the followers graph is a subgraph of the mention graph. We recovered both social networks, and as we shall see, the accuracy of the classification task differs according to which network we use. Let us note that querying Twitter's API is computationally more expensive as Twitter limits the number of requests. Therefore it is interesting to know what's the gain, if any, when using the more costly-obtained information of the Twitter followers graph. As customary in many works, users that have low activity are filtered out from the dataset. We created two sets, A, the active users, users who post at least a posts , and P , the popular users, users that were reacted to at least p times. We chose a and p so that the number of users in the dataset is roughly 10,000 . Broadcasticity. Another parameter that is of interest is the depth of the cascade. As noted, most cascades are shallow. Various measures were used to compute depth, including the Wiener index in [18], the average distance between all pairs of nodes in a diffusion tree. We suggest a much simpler criterion, which does not require the laborious task of computing the diffusion tree. We call it the broadcasticity measure, and it measures how much the diffusion resembles a broadcast rather than a diffusion. It's computed using the Jaccard index of the two sets A and P : --- Name B = 1 -J = 1 - |A ∩ P | |A ∪ P | High broadcasticity means that A and P are almost disjoint, namely users either tweet or react, but very few do both. This is exactly the case of a shallow 1-hop diffusion. If a diffusion on the other hand is deep and wide , then many users belong to both A and P , and the broadcasticity is low. Note that a shallow diffusion with few long paths still attains large broadcastisity. Table 3 describes the various features of each dataset with respect to A, P and the broadcastisity. --- The Experiment Recall the classification task described in Section 3.2. Given a vector τ i ∈ {0, 1} |V | , in which the j th entry is 1 if user j tweeted in time window i, our Name Network Crawl Tweet Log N E c [L] E[L] N E c [L] E[L] Volcano 8, [L] ≤ E c [L] , to be considered a small world network). Green -the criterion is satisfied, red -the criterion is not satisfied. goal is to predict the vector τ i+1 , in which the j th entry is 1 if user j reacted to some post in time interval i + 1. --- Other baselines We benchmarked our model against four other popular models. The first two are random guess models RN D p=0.5 and RN D p=π which predict τ i+1 [j] using a fair random coin flip, or the fraction of users that were active in the previous time window, π. The two last models are variations of the SI model, At-Least-One and Linear-Threshold . We follow the LT and ALO models that were developed in [14] as we found them the most general. The intuition of both is that if the neighbors of the user were active in the preceding time window, it may stir the user's decision to become active himself in the next time window. Each algorithm takes a different try at estimating the probability that user u will become active in the next time window; [14] use the following expression for LT : p LT u = A α v 1 ,u , . . . , α v k ,u , β u , γ T µ u , σ 2 u , t post u (3 ) The α v i ,u ∈ [0, 1] are the influence of a neighbor of u, v i , on u. The β u ∈ [0, 1] is a prior probability of user u to become active, γ ∈ [0, 1] is the virality of the topic that is being discussed. A is an a-temporal component, i.e., the probability that the user will respond to some post due to the influence that was exerted on him from his social circle. Concretely, this component is given by A = σ a,b γ β u + v:v→u γα v,u p u , where σ a,b = 1 1+e -a is a sigmoid function. The second component of Eq. 3, T , is a temporal component of the predicted activity probability, and it represents an empirical observation regarding the time that passes from a moment when any user in the social network initiates a new post until the first of his followers responds to it . This component is unique for each social network, and is given by T µ u , σ 2 u , t post u = 1 2 erf c - ln -µ u σ u √2 The parameter t post u i represents the time of post's initiation relative to the start of the time window, and erf c = 1-2 √ π x 0 e -t 2 dt, is a complementary Gauss error function. For ALO the following is used in [14]: p ALO u = 1 -1 -γβ u v:v→u 1 -γα v,u p u In both cases, we followed the rule in [14], where a user is predicted to react if p u > 0.5 --- Training the baseline models The base-line models were trained similarly to our models, using 90% of the time intervals for train and 10% for test. Table 4 shows the total number of time intervals per dataset. RN D p=0.5 and RN D p=π have no tunable parameters. The parameters of ALO and LT were set as follows. Optimization was performed with Python's Hyperopt library, with the F1 score as the function to maximize. This library uses the Tree of Parzen Estimators hyper-parameter optimization algorithm from [4]. The parameter γ, topic virality, was set to 1, since all tweets come from the same topic. Also the temporal part T was set to T W M N SHU F CP U high 16 GB GPU 1.18 ± 0.75[H] T W M N all1 CP U high 16 GB GPU 54.35 ± 22[m] T W M N CP U high 16 GB GPU 1.12 ± 72[H] T W P N CP U high 16 GB GPU 1.29 ± 54[H] T W CRN SHU F x18 CP U high 16 GB GPU 1.1 ± 0.28[H] T W CRN x18 CP U high 16 GB GPU 54 ± 11.5[m] T W CRN SHU F x34 CP U high 16 GB GPU 1.23 ± 0.32[H] T W CRN x34 CP U high 16 GB GPU 1 ± 0.23[H] Table 5: Hardware specs with corresponding mean run times, where CP U low is Intel i7-8550U @ 1.80GHz, CP U high is Intel Xeon @ 2.00GHz and GPU is Tesla P100-PCIE-16GB, [H], [m] and [s] stands for "Hours", "minutes" and "seconds" respectively. not interested in the event that a tweet t is re-shared sometime in the future, but whether user u re-shared some content in a very limited time interval. Due to the computational constrains, the optimization was performed only on the prior vector of the p u 's. The dataset in [14] included 100 URLs for which retweeting was predicted, ours include 10,000 events, and the number of α u,v 's is even larger. Therefore, the influence matrix α u,v was supplied from the output of the T W M N model, where the weight of the edge in the NN that connects v and u may be thought of as the influence of v on u. --- Results We turn to describe the results of evaluating both the algorithms described in Section 3 and the baseline algorithms, Section 5.1, on the data that we collected, Section 4. Our raw dataset spans the mention graph. Namely, the social links are derived from users re-sharing posts of other users. We further removed lowactivity users from the dataset, remaining with roughly 10 4 users as described in Table 3. In our experiments, we ran the algorithms also on the followers graph dataset, which we obtained from the mention graph dataset by removing users which no one follows or they follow no one, by querying Twitter's API. To assess the impact of using the adjacency matrix A on the performance of T W M N we trained a second variant, T W M N all-1 , in which the masking is removed, namely the NN becomes fully connected . The convolutional network T W CRN does not receive explicitly the social links. To understand whether it implicitly learns them or not, we performed the following permutation test, which resulted in a model we call T W CRN SHU F . At train time, the input vectors τ i that are fed into the model are randomly shuffled, anew for every i, while the labels of the result vectors τ i+1 were kept without change. Table 5 describes the hardware and the running time it took to train each model. The Table 5.2 describes the results for the mention graph dataset, while the Table 5.2: describes the results for the followers graph dataset. Since the training of the algorithms contains random choices, we repeated each execution five times. The standard deviations in both tables are over these five executions. Note that our dataset is imbalanced. There are more zeros than ones in each τ i . The average density of τ i is given by the precision of the RN D p=0.5 algorithm. We summarize our main findings that we read from Tables Table 5.2 and 5.2: • Our first observation is that the results obtained from the followers graph dataset are significantly better for all four datasets, with F1 score nearly twice as good in three out of the four . This means that the signal embedded in the followers graph is stronger than the one embedded in the mention graph. Trying to understand why, we ran Botometer [10] on the users that were removed from the mention graph, and found that their bot score was on average much lower than the remaining users . • The best results, across all datasets, were achieved by T W CRN with an average F1 score of 0.86. This NN does not take into account the social links, at least not explicitly . This network is also completely agnostic to epidemiological models. A clue to that T W CRN learns the network structure in some implicit way lies in the fact that T W CRN SHU F fails miserably in all datasets. As we've mentioned in the introduction, many works have pointed out that information spreads differently in social networks than epidemics spread in the population. Thus, it may be that T W CRN is able to learn this more complicated model of infection, which eludes simple human intuition. • Having said that, we see that the simple M LE algorithm performs surprisingly well on all datasets, achieving an average F1 score of 0.78 on the followers graph dataset. The M LE follows a very simple intuition -it learns the user's "trends", whether the user takes a break between tweets, or is a chain-twitter. Note that the M LE algorithm completely ignores the social links. • T W M N is the only of our algorithms that takes into account the social links. Indeed it outperforms M LE, with an average F1 score of 0.81, but its performance is just slightly better than T W M N all-1 , where again the social links are not explicitly served. Hence we may conclude that the NN is able to learn by itself the important social links, and does not need it as an explicit input. • T W P N performs better than the MLE, and the same as T W M N , at an average F1 score of 0.81. The intuition behind T W P N is similar to M LE, with the difference that T W P N is basically learning a logistic regression per user rather than estimating the probabilities by averaging . • The two baseline models ALO and LT perform poorly, slightly improving over the random guess. There are several ways to explain these poor results. This may be attributed to the way we have constructed the classification task, which may not be suitable for such models. Another possibility is that the influence weights α u,v that are used in Eq. and , which we derived from the weights of T W P N , were not a good choice. --- Discussion In this work we checked two premises, the first is whether one can develop a prediction model which is completely agnostic to the motivation of information cascades as viewed from an epidemiological standpoint. If yes, then how much does the social link structure is a vital input to that prediction algorithm, or, can it be learned implicitly. We answered both questions positively, showing that a high F1 score is obtainable with a neural network that does not receive the social link structure explicitly, but does make use of it . We also show that a slightly lower F1 score can be obtained by two simple algorithms, M LE and T W P N , that completely ignore the social links. The role of the social links in predicting user activity should be further studied in future work, in other OSNs, and in other settings. If we take out the Beirut dataset, which was our smallest dataset, then we discover that the ranking of F1 scores is inverse to the ranking of broadcasticity score, Princess is leading with highest F1 score and lowest broadcasticity, and Kobe vice-a-versa. We found that the results are significantly better in followers graph dataset, obtained by removing users that interact only with users that are not in their followers or friends list. Our first guess that these users are bots turned out false, and we leave this point as well for future work. Finally, let us discuss the limitations of our approach. Our prediction was done for datasets that were collected around a single topic. We have not checked how well this method performs for a database that is not topic oriented. Our prediction task is time-constrained, namely, the input to the prediction algorithm is the activity in the last 12h, and prediction is made for the following 12h. While we played with these time slices and note a minor effect on the results, we did not try other configurations such as training for a week and predicting for the next day. We did not evaluate our models on platforms other than Twitter. Nevertheless, we expect them to generalize well on any platform which provides the same mechanisms for communication and social interaction since we did not use any domain-specific features such as linguistic features or other meta-data features.
It's by now folklore that to understand the activity pattern of a user in an online social network (OSN) platform, one needs to look at his friends or the ones he follows. The common perception is that these friends exert influence on the user, effecting his decision whether to reshare content or not. Hinging upon this intuition, a variety of models were developed to predict how information propagates in OSN, similar to the way infection spreads in the population. In this paper, we revisit this world view and arrive at new conclusions. Given a set of users V , we study the task of predicting whether a user u ∈ V will re-share content by some v ∈ V at the following time window given the activity of all the users in V in the previous time window. We design several algorithms for this task, ranging from a simple greedy algorithm that
Introduction The development of pharmaceutical legislation began in the early 19th century in the United States, and by 1820 the US Pharmacopeia had published monographs that regulated compounding in the US . One of the earliest studies on the pharmacovigilance of the effects of chloroform was conducted by Gustave Darin . On the other hand, the first edition of the British Pharmacopeia was also published in the 19th century, specifically in 1864, in Europe. This pharmacopeia is the official collection of quality standards with which medicines in the UK must comply. It is produced by the British Pharmacopeia Commission Secretariat and depends on the British Medicines Agency . The British Pharmacopeia incorporates monographs from the European Pharmacopeia, it is updated annually and contains 3.000 monographs of substances and articles used in the practice of medicine. At the beginning of the 20 th century, in 1906, the US Pharmacopeia and the National Formulary acquired the status of legal pharmaceutical legislation in the United States . In the same year, the US Food and Drugs Administration , which was created in 1848, was established as a federal agency of the US government with the approval of the Pure Food and Drugs Act , which was the first ratified law on drug regulation and consumer protection. This federal law prohibited the manufacture, sale or transportation of intoxicating medical products, among others, and it also required that certain substances such as alcohol, cocaine, heroin, morphine and cannabis would be appropriately labeled in terms of quality and quantity. The enforcement of this provision was only ensured in 1914, when the Harrison Narcotic Drugs Act was passed, prohibiting the sale of some narcotic drugs . Currently, the FDA is responsible for the regulation of food, drugs, medical devices , cosmetics, biological products and blood derivatives. Its main function is to regulate medical products in a way that ensured the safety of US consumers and the effectiveness of marketed drugs . Pharmacovigilance is a disciplinary field that is often linked to epidemiological and pharmacological studies. This is because it is primarily seen as a discipline focused on assessments in the field of drugs approval and safety . However, Rocca et al. are aware that this discipline has given rise to a number of new insights related to epistemology and epidemiology. Nevertheless, the generation of new strategies, methodologies and standards of evidence to enable the implementation of risk assessment is becoming increasingly relevant. In this line, we wonder whether it is not somewhat limited to restrict pharmacovigilance to the aspects indicated by Rocca et al. . They refer to social aspects, but they circumscribe them to the medical and scientific community. On the other hand, we consider that there are social phenomena that are related to the social understanding of reality and social perceptions. For this reason, we believe that PV is a broader concept and that it is closely related to social psychology, sociology and other disciplines. On this basis, we consider that historical studies allow us to analyse the processes that have been taking place in this field and, thus, to make decisions in this regard. Hence, the aim of this paper is to take a socio-historical look at some outstanding cases in order to understand the evolution of pharmacovigilance. We have focused our analysis on pharmacy professionals, being aware that the patient-partner is also an extremely important agent. However, in this research we believe that pharmacists play an important role in the social processes related to pharmacovigilance. The first pharmaceutical control systems: The case of sulfonamides Domagk ) demonstrated in 1932 the efficacy of sulfonamides for the treatment of streptococci. Subsequently, in 1935, the trademark patent Protonsil was established, allowing the subsequent marketing of the first drug with this active ingredient, which led to the production and marketing of the first sulfonamide . The media dissemination of the efficacy of the first sulfonamides generated a great social impact. In fact, there was an imaginary element that conditioned the positive opinions of the drug. In 1936, the publication of news in the New York Times showing that President Roosevelt's son, after being admitted to hospital with a severe tonsil infection caused by Streptococcus, was cured by Prontylin, a dispensing form of Protonsil . The commercial success of this drug led the Food and Drug Administration to recognize the growing regulatory problem that was being generated by the expansion of sulfonamides . The success of sulfonamides led to widespread sales and the generation of commercial alternatives. One of the latter was the so-called "Sulfanilamide Elixir." This preparation was developed in the use of 72% diethylene glycol . The issue was that the producing company , as stated in a report of the Secretary of Agriculture of the United States of America published in 1937, did not test the toxicity of the ingredients and focused on evaluating the taste, color and labeling . Furthermore, the company did not disseminate the presence of diethylene glycol in the product . This resulted in at least 107 deaths from ingestion of the product. Besides, the FDA was only able to blame Massengill with a trivial problem related to mislabeling of the product, since it was claimed to be an elixir when in fact it had an alcoholic content . At the end of 1937, an editorial was published in reflecting on the sulfonamide problem. The text begins by stating: "A recent outbreak of poisoning in the USA has sensationally and tragically demonstrated the unexpected dangers which may arise in the introduction of the therapeutic use of chemical compounds without adequate preliminary testing of their possible toxic actions." As a result of this problem and, because of the lack of regulations to control the production process, the United States congress enacted the United States Federal Food Drug and Cosmetic Act, a set of laws that granted the FDA authority to demand the safety of food, drugs and cosmetics. However, and despite the attempts to establish an analysis process and verification of pharmaceutical products, it was not until the end of the 20th century that wellestablished processes for defending society against the negative effects of certain drugs were in place. In fact, for Abraham , the pharmaceutical sector escaped social scrutiny for many years, since in the later part of the 19th and 20th centuries, industrialized countries and society were seen as a kind of market for the products of an expanding scientific-medical industry. The fact that Massengill was only concerned with the commercial elements of his product is a proper evidence of this issue. The United States Federal Food, Drug and Cosmetic Act is the beginning of a different perspective, as well as the intertwining of the social and the pharmaceutical. In fact, this regulation is the seed of the current pharmaceutical legislation focused on a preventive process that conditions the marketing of industrial products, and that requires tests on the safety of pharmaceutical products and also it grants the FDA surveillance powers after the products have been authorized for marketing . Nevertheless, and despite the implementation of a regulation that gave the US FDA more power, this did not prevent other similar events from occurring. As a matter of fact, on 19th March 1941, George Adams, the head of the Food and Drug Administration's Boston Station, found that three girls in his area went into a coma after taking fifteen grams of sulfathiazole . The problem was caused by a deficiency in manufacturing and in quality control related to the production of the drug. On 24th December 1940, analysts at the marketing company "Winthrop, " confirmed that some of their sulfathiazole, specifically the batch MP 29, was contaminated with Luminal, which was the brand of phenobarbital they produced . This issue arose because the company did not alert the FDA about the contamination, and thus, there was an inefficient recall of the affected batch. William Weiss, who was the chairman of the board of Sterling Products at that time, told the FDA that he thought Winthrop had not tried to conceal the contamination, but that it was possibly due to poor decision-making resulting from a misjudgement of the seriousness of the situation . Around 120.000 tablets of Winthrop's contaminated sulfathiazole were circulating in the United States with a subsequent risk to the population. Although the Sulfanilamide Elixir tragedy, which was the event that marked the beginning of the Food, Drug and Cosmetic Act of 1938, was still remembered by American society, Winthrop did not alert the FDA about the contamination. It is possible to affirm that, in these early years of the development of the pharmaceutical industry, there were a series of events related to the lack of control processes and regulatory systems for production and marketing. These events were preceded by a positive image of the potential in the healing process of several pathologies . This act could possibly have led to a certain overoptimism among the public regarding the benefits of chemical products, which on the other hand, they were not being controlled. Once the "Sulfanilamide Elixir" event occurred, social perception changed again, partly as a result of the information exposed in the various articles of the media at that time. It is conceivable to consider that, although the media played an important role, it cannot be forgotten other relevant element which explains the social behavior toward sulfanilamides: the economic crisis. In 1929, a severe economic crisis emerged in the United States under the name of "The Great Depression, " whose effects had an impact on the life of American citizens and on their social perception. The socio-economic transformations of that time led to an increase in the number of suicides, although there was also a notable increase in the economy. On this account, President Roosevelt generated several measures aimed at greater state intervention in investment and the implementation of public works in order to relieve the effects of the crisis . During those years, the life expectancy at birth of US citizens varied substantially, showing very marked peaks. In 1936, specifically, a notable drop was shown in the life expectancy of women and men regardless of their origin . Nevertheless, health indicators of the US population show that the collective health condition of the population improved at that time. However, for most older age groups, mortality tended to peak during the years of strong economic expansion . This social, economic and health reality has led to the current welfare state, in which the control of commercial products, that could have a negative impact on society, is of vital importance. Hence, it was at this historical moment that the seeds of the pharmaceutical controls that are known today were sown, but it was necessary to wait a few years for the germ of such systems to take full shape. --- The maturity of pharmaceutical control systems: The case of thalidomide In 1954, the German company Chemie Grünenthal succeeded in obtaining the molecule alpha-phthalimidoglutarimide, known as thalidomide. This drug was classified as a sedative and hypnotic, and was used in 1957 for the treatment of anxiety, insomnia, nausea and vomiting in pregnant women . In 1956, the first isolated case of phocomelia was documented after the exposure of thalidomide, and in the following 5 years, 3.000 cases of dysmelias, congenital malformations such as amelias, phocomelia or absence/hypoplasia of the thumb or fingers, among others, were gradually reported worldwide . However, in a short letter to the British Medical Journal, Florence indicates that patients treated with thalidomide for extended periods reported negative effects of thalidomide intake complaining of: Paresthesia affecting first the feet and then the hands. Coldness of the extremities and marked paleness of the toes. Occasional slight ataxia. Nocturnal cramps in the leg muscles. When the treatment was eliminated and the patients stopped taking the substance, the negative effects subsided. This led Leslie Florence to suspect the toxicity of thalidomide. Subsequently, in January 1962, The Lancet magazine published a series of letters of the effects of thalidomide. The first of these letters, which was signed by Lenz , describing 52 children with malformations caused by the ingestion of this substance by their mothers during pregnancy. However, in this letter Lenz states that at a conference held on 18th November 1961, in which the author took part, they had already discussed the role of this substance in the development of human malformations. The same issue of The Lancet also published another letter by Pfeiffer and Kosenow in which he indicated the existence of a high statistical significance between the intake of thalidomide during the first trimester of pregnancy and the occurrence of defects. The third letter, which is signed by Hayman , the managing director of the Distillers Company, begins by thanking them for the expressions of appreciation they received, and in which thalidomide is highlighted. He goes on to say that due to the small amount of data and official statistics, it is particularly difficult to establish the harmful effects of this substance. Irrespective of one's personal assessment of Hayman's writing, the objective data of the various researchers showed that thalidomide was not as harmless as it was claimed to be. Papaseit et al. state that it was the Lenz letter that led to the withdrawal of thalidomide from the German market and its gradual elimination from the market worldwide . Salvador Coderch et al. state that this withdrawal was caused by an article published in the Welt am Sonntag newspaper on the 26th November 1961 discussing this issue. Grünental's action took place the following day, on the 27th November. It is difficult to establish a specific cause, since social reality is more complex than that and every social action is the result of a concatenation of events. Regardless of its origin, the process took time to reach Spain, which was one the last regions to officially ban its marketing as this took place in January 1963 . In Spain, a Ministerial Order was published on 18th May 1962 prohibiting the marketing of medicines containing thalidomide. Despite this, the Royal Decree 1006/2010 of the 5th of August states that there may have been some instances in the period between 1960 and 1965 in which "substances containing thalidomide could still be in circulation or in the possession of private individuals." In Spain, the social process generated by thalidomide has been particularly dramatic. This was caused by the denial of thalidomide sales by the Spanish authorities for more than 30 years. At that time this implied that there were supposedly no cases in Spain and, for this reason, it put those affected individuals in a situation of institutionalized helplessness, exclusion and marginalization. Currently, it has been estimated that there are between 1.500 and 3.000 newborns with malformations . The seriousness derives from the lack of official registry, which has prevented affected individuals and families from accessing political and social recognition, as well as any financial compensation or health assistance. The opposite pole to Spain is the United States. In that territory, no thalidomide patients were affected thanks to the caution of the FDA supervisor, Dr. Kelsey, who rejected the application for authorization to market such drugs. In view of conflicting information, the decision was made to wait for more data on its safety. For this reason, Dr. Kelsey was decorated by President Kennedy on 7th August 1962 with the "President's Award for Distinguished Federal Civilian Service" . As a consequence of these events, on 10th October 1962, the United States Congress unanimously passed the Judiciary Committee's bill on amendments to the United States Federal Food, Drug and Cosmetic Act. In this amendment, an administrative procedure was established for the authorization of clinical trials and the need to demonstrate the therapeutic efficacy of medicines before applying for marketing authorization . This regulation puts health before marketing, substantially institutionalizes the production of pharmaceuticals in the social context and strengthens what later became known as social medicine : "In short, social medicine means what it says. It is to embody the idea of medicine applied to the service of man as socius, as companion or comrade, with a view to a better understanding and a more lasting help to all fundamental problems and contributing to the avoidance of active health, and not the mere removal or relief of a present pathology. Social medicine also embodies the idea of medicine applied to the service of the societas, or community of men, with a view to reducing the incidence of all preventable diseases and raising the general level of human physical fitness." The worldwide tragedy of thalidomide generated such a social effect that it led to a second sept toward the strengthening of voluntary adverse reaction reporting systems, which gave rise in 1963 to the International Pharmacovigilance Programme of the World Health Organization with centers in 10 countries in that year. Since 1971, they have been under the authority of the world pharmacovigilance center . In Spain, the spontaneous adverse reaction reporting programme began in 1982 and, 2 years later, it joined the WHO programme. --- A third prominent example: Rofecoxib Rofecoxib is a non-steroidal anti-inflammatory drug that functions as a selective inhibitor of the enzyme cyclo-oxygenase-2 and thus of prostacyclin synthesis . Vioxx R was a drug marketed by Merck Sharp & Dohme and it was indicated for the symptomatic treatment of rheumatoid arthritis and osteoarthritis. In the United States of America, the FDA considered the benefitrisk assessment of the drug to be favorable and it granted marketing authorization on 20th May 1999 . In February 2001, the FDA prepared two reports on notifications of possible cardiovascular adverse events associated with Vioxx R . The FDA required only Merck to incorporate precautions in its labeling . The scientific community urged the FDA to request further clinical safety testing, but the FDA did not do so . The scientific community therefore considered that the FDA's actions were insufficient to prevent possible adverse drug reactions . In this regard, studies and critical comments were published in various prestigious international scientific journals on the methodological deficiencies of the clinical studies carried out on Vioxx R , warning of its link to serious cardiovascular risks. The FDA only required Merck to incorporate a series of precautions in this respect in its labeling. Despite the doubts and deficiencies, on 20th July 2001, Merck Sharp & Dohme obtained marketing authorization for another drug with rofecoxib as an active ingredient, Ceoxx R , indicated for the symptomatic treatment of short-term acute pain and primary dysmenorrhoea. Publications warning about Vioxx R ADRs were published from 2000 to 2004. In 2004, the serious ADRs associated with this drug became undisputedly evident. Merck notified the FDA of these findings and on 30th September 2004 voluntarily withdrew Vioxx R and Ceoxx R 100. The unethical problem of the corporation is highlighted by a Wall Street Journal investigate journalism report revealing the existence of emails confirming the knowledge of the adverse cardiovascular effects of Vioxx R by some Merck executives . On the other hand, harsh criticism of the FDA's performance led to calls for more power, control and independence for the FDA . In addition, Horton questioned the very structure of the institution, stating the too often the FDA considers the pharmaceutical industry to be its client and, therefore, a vital sources of funding for its activities. Then, this fact undermines the FDA's performance by failing to act as a sector of society in need of sound regulation. --- The social importance of pharmacovigilance Pharmacovigilance in Spain, according to Royal Decree 577/2013 of 26th July, is defined as the public health activity whose objective is the identification, quantification, evaluation and prevention of risks associated with the use of medicinal products once authorized. This implied that PV is a biomedical risk control activity and, potentially, it could be also a pharmacological social risk minimization activity. Additionally, it is an inherent part of the clinical use of medicines, and it starts during the pre-marketing phase of medicines, as well as it reaches its peak after their authorization and marketing. In fact, PV has been a discipline focused on the post-authorization and post-marketing period . Nevertheless, this has gradually changed. PV, under the influence of biological disciplines, has evolved toward an anticipatory and proactive approach to the potential risks/benefits of medicines in the pre-and post-approval stages of drug development . Pharmacovigilance is of great relevance today. In fact, during the recent pandemic caused by the SARS-CoV-2 virus, it was crucial for the rapid commercialization of new drugs against this virus . Other outstanding examples of the importance of this discipline today are related to the use of opioids in the USA, to Levothyrox in New Zealand and France, or to the use of Ibuprofen in regions such as New Zealand or Spain. Likewise, the perspectives of analysis offered by the subsections of pharmacovigilance, such as cosmetovigilance and herbavigilance, are also remarkable . The examples are numerous and the challenges for this and other disciplines are proven to be enormous by negative consequences of ADRs. ADRs are a major cause of morbidity and mortality, making the avoidance of ADRs extremely important for the population. In a classic study, Lazarou et al. analyzed 39 prospective studies conducted in US hospitals between 1966 and 1996. They found that ADRs accounted for 6.7% of hospital admissions and that they represented the sixth leading cause of death in the United States. On the other hand, currently the World Health Organization has established that adverse drug reactions are one of the 10 leading causes of death in the world. Pharmacovigilance has undergone major changes since the thalidomide case. These changes were made mainly in the management of suspected cases of AMR , in the management of signals that raise suspicion for the detection of possible links between a given drug and its administration, and finally, in the management of the risk/benefit balance to implement processes that reduce risks for patients . Therefore, twenty-first century pharmacovigilance is not a discipline that simply discovers, reports and manages adverse events associated with approved and marketed drugs, but it is concerned with the systematic monitoring of the premarketing review process and post-marketing surveillance, which includes the use of drugs in everyday practice. However, all these considerations about pharmacovigilance are focused on the biomedical domain. Nonetheless, there are other actors involved in the systemic PV process that need to be taken into account and even explicitly incorporated into the PV process. The first of these agents are pharmacists themselves. Obviously, as we have already indicated, in addition to pharmacists, physicians also have a preponderant role that should not be overlooked, especially general practitioners. Kumar notes that pharmacists' involvement in AMR reporting is, as he states, largely unknown. In fact, in the United States of America, a survey of 377 pharmacists in Texas found that 67.7% of the pharmacists surveyed had inadequate knowledge of the process of reporting to competent authorities . The second major player that cannot be ignored in PV is society itself, which, through its interactions, could offer new opportunities for the management of PV-related information . This is because a large proportion of patients are often active participants in the exchange and dissemination of health-related information through social networks and, in particular, health social networks . However, although the potential for obtaining useful information for PV is high, it is also necessary to bear in mind that the incorporation of data from social networks or everyday interactions between people generates serious drawbacks: credibility, timeliness, frequency, relevance, etc. . On the other hand, the same author indicates that when trying to process natural language into computer language, it is found that consumers tend to use misspelled words, terms without medical correspondence and descriptive expressions to refer to health problems. Sarker et al. also indicate that a small proportion of drug-related data collected through social networks tends to contain information associated with AMR. Therefore, pharmacovigilance also has an inescapable social component as it identifies previously unrecognized adverse events or changes in the patterns of these same effects, as well as the quality and adequacy of drug supply, and ensures effective communication with the public, healthcare professionals and patients about the risk/benefit balance and use of drugs . Another important aspect of pharmacovigilance is centered around patient reports. These are often incomplete or unclear. In addition, there is also the possibility of reporting adverse drug effects via social networks . Given this reality, we wonder if pharmacy professionals could play a more active role in regard to this by obtaining information directly from patients. Now, this aspect of pharmacovigilance has been traditionally done by relying on post-marketing spontaneous reporting systems , such as: the EudraVigilance system or the Adverse Event Reporting System . These systems gather voluntary reports produced by healthcare professionals, marketing authorization holders or consumers. However, the reporting rate of such systems is low, causing delays in the detection of ADRs . In this regard, several authors have studied the usefulness of social media in pharmacovigilance. These works, together with other ones, show the enormous possibilities that exist in this social sphere. Sinha et al. even conclude that the FDA could develop strategies to more actively disseminate drug safety information through these social networks. They even argue that the FDA could benefit from information dumped on websites such as Wikipedia, which are frequently accessed for drug-related information. Most critical of such strategies, Lardon et al. suggest that there is a sufficient volume of pharmacovigilance data on social media to work with. However, they are aware that the quality of this information is variable and that further studies are needed to improve the process. For all these reasons, it could be concluded that these mechanisms are not yet sufficiently developed to be used with complete efficiency and reliability. The use of social media to improve pharmacovigilance is one of the possible strategies of what has been called social pharmacology . This discipline, according to these authors, is the study of interactions between pharmaceuticals and society. In line with this Knight et al. , a study on the pharmacovigilance of opioids, showed that social elements, mainly structural ones, affected opioid access. Similarly, in Canada, social groups have been found to be more prone to AMR. In fact, women have a lower proportion of ADRs compared to 60.9% of men. Furthermore, these authors also indicate that AMR have a direct social impact, i.e., they directly affect people's lives. For this reason, Castillon et al. suggest that social dimensions such as social and family functioning, psychological functioning, functioning related to daily life, and functioning at work or school should be included and assessed in AMR reporting. This gives an idea of the importance of the social aspects in pharmacovigilance. On the other hand, a study previously conducted found that the development of collaborative professional practices between pharmacists and physicians was beneficial because, among other things, it provided clinical safety for physicians. Well, we believe that, in a similar way, the collaboration of pharmacy professionals would allow us to broaden our understanding of the social world. One possibility would be to develop strategies for ongoing collaboration and communication when analyzing human behavior or social perceptions. Another more recent and enlightening study shows how it is possible to develop virtual forums to share information, motivate and understand the practical constraints that influence pharmacovigilance . The question would then be similar: wouldn't it be desirable that sociologists could actively participate to help better understand the social and practical determinants of pharmacovigilance? --- Conclusion For all these reasons, we believe that it is essential that the biomedical, pharmacological and social research fields interrelate in a more effective way. This would require a different strategy to the current one. In this sense, we could say that there would be several main actors involved: those who report ADRs, those who investigate ADRs, and those who study the mechanisms of prevention, education and social perception of medicines in order to understand ADRs and, if possible, reduce them. In addition, we believe that this interaction would allow the information obtained and issued by pharmacists to be previously filtered and have greater reliability than that coming, for example, from social networks. On the other hand, the way in which the misperception of medicines, vaccines, etc., is generated in the citizenship would be better understood, and also the behaviors that promote or facilitate AMR could be more effectively reduced. We also assume that it would be easier to reduce the likelihood of selfmedication or, at least, to increase the decision-making of those who choose to self-medicate. Hence, and in this context, pharmacy would become an agent of socio-biomedical democratization, since it would act as a "translator" of citizens' impressions. However, in this hypothetical process of interrelation between pharmacists and society, it would also be of vital importance to establish mechanisms for dialogue with social scientists. The latter have a better understanding of social conditioning factors and could encourage better vigilance and greater social acceptance of pharmaceutical vigilance itself. In any case, the challenges of PV in today's society are numerous and, in our opinion, it is clear that they require the incorporation of the greatest number of social agents that make possible a dynamic of constant information in order to implement flexible and appropriate control and management strategies. Finally, we believe that further research would be necessary to encourage the development and structuring of this process of interrelation that we are discussing. --- --- --- 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.
Coca JR, Coca-Asensio R and Esteban Bueno G ( ) Socio-historical analysis of the social importance of pharmacovigilance.
IntrOductIOn There is a widespread consensus regarding the pivotal role of the utilisation of maternal healthcare services in reducing maternal and child mortality and promoting women's reproductive health. Maternal mortality refers to deaths caused by pregnancy or childbirth-related complications. Since 2015, global maternal mortality rate dropped by 44% at an average annual decline of 2.3%; however, it still remains the leading cause of death among adult women aged between 15 and 49 years. 1 The burden of maternal mortality is also disproportionately skewed towards the middle-income countries. 2 The most important causes of maternal mortality in middle-income countries are unsafe abortion, haemorrhage, eclampsia and obstructed labour as they together account for nearly two-thirds of total maternal mortality globally. 3 4 Growing consensus suggests that a vast majority of Women's decision-making autonomy and utilisation of maternal healthcare services: results from the Bangladesh Demographic and Health Survey Bishwajit Ghose, 1 Da Feng, 1 Shangfeng Tang, 1 Sanni Yaya, 2 Zhifei He, 1 Ogochukwu Udenigwe, 2 Sharmistha Ghosh, 3 Open Access these deaths are actually preventable simply by adopting the necessary precautions provisioned through basic MHS. 3 5 The burden of maternal mortality is historically high in Bangladesh. However, the country has achieved noteworthy progress in terms of reducing MMR by three-quarters by 2015, as a part of its meeting the Millennium Development Goal 5A . 6 According to a study based on Bangladesh Maternal Mortality Surveys, maternal mortality was the largest single cause of death for women aged 15-49 years followed by malignancy and infectious diseases, and ranked third a decade later . 7 Despite the continued progress, the country is lagging far behind in ensuring universal access to reproductive health , and the rate of utilisation of the basic MHS at the national level remains quite low. 8 According to Bangladesh Demographic and Health Survey , only about half of all mothers attended one or more antenatal visit and about one-fifth received at least one postnatal service. Mothers who do not attend antenatal care services are also more unlikely to deliver at health facilities and receive postnatal services, 9 which increases the risk of pregnancy and childbirth-related complications. 5 9 10 The rate of health facility delivery is also notably low in Bangladesh with three-quarters of all births occurring at home and merely one-fifth are attended by a skilled birth attendant , 10 which is far below the internationally agreed target . 11 Previous studies have attempted to explore the barriers to the utilisation of MHS, some from demographic, economic 9 12 13 and some from sociocultural and behavioural perspectives. 9 10 14 15 Apart from the socioeconomic aspects, there is also a growing number of study emphasising the role of women's decision-making autonomy on maternal health service utilisation and pregnancy outcomes. 16 17 However, the results remain somewhat mixed as some researches stress on the importance of wife's autonomy on making decisions and some proposing that joint decision-making by husbands/partners and wives can produce better reproductive health outcomes than when one partner is left behind from decision-making tasks. In the perspective of Bangladesh however, involvement of husbands/partners in decision making is particularly important because most families are male-headed and it is also the male figures who usually play the dominant role in important household decision making such as income expenditure and healthcare-related movement. 17 In South Asian countries including Bangladesh, gender discrimination and inequality remains a widespread phenomenon across various walks of life such as decision-making autonomy, intrahousehold resource allocation, property rights and access to healthcare. 18 19 Women's autonomy is a multidimensional concept which is hard to represent in a single definition. In short, it conveys a set of discrete components or phenomena essential for ensuring that women can exercise their rights with full potential. Therefore, the aim of this study was to determine the association between women's decision-making power and utilisation of MHS among Bangladeshi women. For, this study, women's decision-making autonomy was measured across four different themes ranging from having a say in their own and children's healthcare decisions to household purchases and visiting family and relatives. Data were sourced from the latest BDHS survey which provides a large-scale quality data and representative of the general population. --- MethOds The survey: BDHS 2014 This is a cross-sectional study based on data from the Bangladesh demographic and health survey conducted in 2014. The 2014 survey was the sixth to be conducted in the country. This is a nationally representative survey that included both urban and rural areas encompassing all seven administrative divisions-Dhaka, Rajshahi, Rangpur, Chittagong, Khulna, Barisal and Sylhet. A division is a collection of districts , and each district is further divided into administrative units , which are further divided into urban and rural areas. Sample households were selected by a two-stage stratification technique. First, 207 clusters in urban areas and 393 in rural areas were selected for 600 enumeration areas with proportional probability. In the second stage, on average 30 households were selected systematically from the enumeration areas. Finally, 17 989 households were selected for the survey of which 96% were interviewed successfully. Details on the survey and sampling technique are available in the final report. --- Variables Outcome variable: the outcome variables chosen for this study were three basic types of MHS offered by the healthcare system in Bangladesh: 1) ANC services, 2) facility delivery services and 3) postdelivery check-up services. Information on these topics were collected by face-to-face interview with the respondents. Women were asked the number of times they received ANC, and the frequency ranged from '0' to '20'. However, for this study, ANC was categorised as adequate and inadequate as per the WHO recommendation, which suggests at least four ANC attendance during pregnancy. Place of delivery was categorised as 'facility delivery' and 'delivery at home'. Facility delivery included delivery in public or private hospitals or clinics, NGO clinics. The third outcome variable, postdelivery check-up services, was categorised as yes and no . Explanatory variables of interest were women's decision-making power on the following four themes: 1) person who usually decides on respondent's healthcare, 2) person who usually decides on large household purchases, 3) final say on: child's healthcare, 4) person who usually decides on visits to family or relatives. In types of decision-making tasks, a joint decision by women and their husband was highest. Possible answers were respondent alone, respondent and husband/partner jointly, husband/partner alone and other. The categories were collapsed into three by combining the last two into one . The covariates included in the analysis were age: 15-20/21-24/25-29/30+ years; Educational attainment: no education/incomplete primary/complete primary/ incomplete secondary/complete secondary/higher; currently working: no/yes; wealth index: poorer/middle/ richer/richest/poorest; parity: 1/2/3/3+. dAtA AnAlysIs Datasets were checked for missing values and outliers and weighted prior to analysis. Basic sociodemographic variables were described by descriptive statistics. Chi-square bivariate tests were performed to examine the group differences for all the explanatory variables. The variables that showed significance at p≤0.25 in the bivariate tests were retained for final regression analysis. The association between utilisation of MCHs and the independent variables was measured by binary logistic regression. Three separate regression models were run for each of the outcome variables. Results of the regression analysis were presented as adjusted ORs with corresponding 95% CIs. The outcomes of the regression analysis were reported in terms of AOR and corresponding 95% CIs. Model fitness was verified by the Hosmer-Lemeshow goodness-of-fit test. All tests were two-tailed and was considered significant at 5%. Data were analysed using SPSSV.22. ethIcs All participants gave informed consent prior to taking part in the voluntary interview. The survey was approved by the ICF International Institutional Review Board, who is responsible for reviewing the procedures and questionnaires for standard DHS surveys. --- results --- Population characteristics Table 1 shows that majority of participants belonged to the youngest age groups of 15-20 years. About one-third of the women were from urban areas which is similar to the country's level scenario; 13.3% of the women had no formal education and 11.4% had completed primary level of education. Rate of illiteracy was high among rural women compared with their urban counterparts . Rate of completion of secondary was 7.5% and 11.8% had higher than secondary level education. Only about one-fifth of the women reported having an employment, and urban women had slightly higher rate of employment than rural women. Majority of the women belonged to the highest wealth quintile and a little less than one-fifth in the poorest wealth quintile . A wide wealth disparity was observed between participants in urban and rural areas as 43.2% of the women in the highest wealth quintile were from urban areas compared with only 9.2% from rural areas. Two-fifth of the women had only one child and 14.2% had more than three children. Based on the availability of on the dataset, four types of decision-making tasks were considered relevant to MCH in this study: 1) person who usually decides on respondent's healthcare, 2) person who usually decides on large household purchases, 3) final say on: child's healthcare, 4) person who usually decides on visits to family or relatives. For all types of decision-making tasks, a joint decision by women and their husband was highest. Table 2 shows that frequency of having autonomy in all types of the decisions was lower among rural women except for final say on child's healthcare. In majority of the cases, decisions were made jointly by women and the husband/ partner. Husbands/partners had notably higher rate of autonomy than women in making these decisions in both rural and urban areas. Table 3 shows the prevalence of availing the three types of MHS stratified by place of residency. Prevalence of ANC attendance, facility delivery and postnatal check-up were respectively 32.6%, 40.6% and 66.3% . Results of cross-tabulation show that the rate of utilisation of these services were higher among urban women compared with their rural counterparts, higher among women aged between 21 and 24 years, having incomplete secondary level schooling, living in the richest households, currently not working and had given birth only once. In majority of the cases, women who could make the decisions jointly with husband/partner were more like to enjoy the MCH services. --- Association between decision-making ability and utilisation of Mch Results of regression analysis on the association between decision-making ability and utilisation of MCH are presented in table 4. In the urban areas, women who could decide their healthcare with husband/partner had 20% higher odds of attending at least four ANC compared with those who could make decisions alone. In the rural areas however, women who could make decisions alone were 35% less likely to do so. The odds of delivering at a health facility were 25% higher among rural women who made own health decisions jointly with husband/ partner. Women in urban and rural areas had respectively 43% and 28% higher odds of receiving postnatal check-up when they made their health decisions jointly with husband/ partner. Women in urban and rural areas who had less autonomy on deciding large household purchases were respectively 28% and 20% less likely to have at least four ANC visits. Rural women who had to decide on large household purchases with husband/partner had 15% lower odds of receiving postnatal check-up. Having autonomy in deciding children's healthcare did not show noticeable impact on receiving ANC services. Odds of receiving postnatal check-up were respectively 22% and 31% lower and facility delivery respectively 11% and 12% lower among urban and rural women who had to make the decisions jointly with husband/partner. In urban areas, women who did not have the autonomy to decide on visiting family or relatives alone were 18% less likely to attend at least four antenatal visits. The odds of receiving postnatal check-up were respectively 32% and 11% higher among urban and rural women who could decide on visiting family or relatives jointly with husband/partner. --- dIscussIOn And cOnclusIOn --- Main findings Based on a nationally representative data from BDHS, this study explored the association between women's decision-making power and utilisation of ANC, facility delivery and postnatal health check-up among adult non-pregnant women aged between 15 and 49 years in Bangladesh. Our results show that the prevalence of ANC attendance, facility delivery and postnatal check-up were respectively 32.6%, 40.6% and 66.3%, which indicates a considerable improvement compared with the previous estimates. In urban and rural areas respectively, the rate of attending at least four antenatal visits increased from 36.7% and 11.7% in 2004 to 46.1% and 26% in 2 01 20 . Utilisation of health facility delivery increased from 12% in 2004 to >40% in 2014, 21 and postnatal check-up of mothers increased from 27.3% to >66% during the same period. 22 Compared with women who decided on their healthcare alone, those who decided jointly with husband/ partner had higher likelihood of using all three types of services . However, women could decide large household purchases alone had higher likelihood of attending at least four antenatal visits. Similar association was observed for utilisation of postnatal care among women in rural but not urban areas. Having decision-making autonomy on child's healthcare showed significant association with the utilisation of facility delivery and postnatal check-ups but not antenatal visits. Having decision-making autonomy on visiting family/relatives showed significant association with the utilisation of postnatal check-ups but not antenatal visits and facility delivery. Open Access , Bangladesh and India . 23 Regarding the association between decision-making autonomy and MHS utilisation, comparison between the findings of the present study with the existing ones requires consideration of several important issues. First, different studies uses different indicators of women's decision-making autonomy and different types of MHS. Moreover, some studies report involvement of various family members and not just women and husbands/ partners. Regardless of that, our findings have consistent and conflicting points with previous ones. Low level of women's autonomy was found to be a contributing factor to poor maternal health service utilisation in Nepal, 24 India, 25 but not in Kenya. 26 In Ethiopia, decision-making autonomy on place of birth showed a positive association with utilisation of institutional delivery. 27 While women's lack of decision-making autonomy can be attributed to poor utilisation of MHS, it however should not be ignored that autonomy in certain circumstances can also result in less spousal communication and low male involvement in reproductive care. Growing number of studies indicate that inadequate spousal communication and male involvement in reproductive care are associated with poor reproductive and sexual health consequences, and recommend policies to promote spousal communication and cooperation for improved maternal health outcomes. 28 29 In Nepal for instance, economic autonomy among women was associated with lower likelihood of couple communication during pregnancy, while domestic decision-making autonomy was associated with both lower likelihood of intraspousal communication during pregnancy and husband's presence at antenatal visits. 30 Husbands' involvement in ANC has been shown to have a positive influence on utilisation of antenatal visits in Ethiopia. 27 Husbands' involvement was also associated with utilisation of professional care during delivery in rural Bangladesh and India. 31 In light of the above-mentioned discussion, it is suggestible that health projects aiming to improve the utilisation of MHS should try to focus on women's autonomy and at the same time promote male involvement in women's reproductive care. A qualitative study on male participation in reproductive health in Bangladesh reported poor interaction between husband and wife regarding sexual reproductive health issues which makes it difficult for men to recognise the reproductive health issues of women. 32 The study also reported that men do not feel comfortable to take their wives to the health facility, which suggests the presence of complex social and cultural factors preventing effective spousal communication regarding reproductive health issues. In the traditionally male-dominated society in Bangladesh where male figures are usually involved in family decision making, excluding men from maternal health decision-making issues could prevent men from making informed decision for their wives/partners. This study has several limitations. First, this study included only four aspects of women's decision making. Thus, the findings do not indicate women's overall mobility and empowerment but rather specifically focuses on a limited range of indicators. As the participants were only women, there remains a potential for bias/ discordance regarding the level of autonomy enjoyed by women as this is to a large extent a subjective phenomenon. Arguably, collecting information from both men and women could generate more a reliable picture on women's mobility and empowerment. So the association between women's autonomy and healthcare service use may be underestimated when only women's reports are considered. 30 In addition, spousal autonomy is a complex concept and difficult to quantify and there is no universally agreed definition or tool for measurement. Last but not least, utilisation status of MHS was reported by women and was not verified from medical records, and therefore subject to recall bias.
Objectives The aim of this study was to determine the association between women's decision-making power and utilisation of maternal healthcare services (MHS) among Bangladeshi women. settings This is a nationally representative survey that encompassed Dhaka, Rajshahi, Rangpur, Chittagong, Khulna, Barisal and Sylhet in Bangladesh. Sample households were selected by a two-stage stratification technique. First, 207 clusters in urban areas and 393 in rural areas were selected for 600 enumeration areas with proportional probability. In the second stage, on average 30 households were selected systematically from the enumeration areas. Finally, 17 989 households were selected for the survey of which 96% were interviewed successfully. Participants Cross-sectional data on 4309 non-pregnant women were collected from Bangladesh demographic and health survey 2014. Decision-making status on respondent's own healthcare, large household purchases, having a say on child's healthcare and visiting to family or relatives were included in the analysis. results Prevalence of at least four antenatal attendance, facility delivery and postnatal check-up were respectively 32.6% (95% CI 31.2 to 34), 40.6% (95% CI 39.13 to 42.07) and 66.3% (95% CI 64.89 to 67.71). Compared with women who could make decisions alone, women in the urban areas who had to decide on their healthcare with husband/partner had 20% (95% CI 0.794 to 1.799) higher odds of attending at least four antenatal visits and those in rural areas had 35% (95% CI 0.464 to 0.897) lower odds of attending at least four antenatal visits. Women in urban and rural areas had respectively 43% (95% CI 0.941 to 2.169) and 28% (95% CI 0.928 to 1.751) higher odds of receiving postnatal check-up when their health decisions were made jointly with their husband/partner. conclusion Neither making decisions alone, nor deciding jointly with husband/partner was always positively associated with the utilisation of all three types of MHS. This study concludes that better spousal cooperation on household and health issues could lead to higher utilisation of MHS services.
Introduction On September 20, 2017, Hurricane Maria made landfall in the southeastern part of Puerto Rico, causing catastrophic damage estimated at $90 billion and sustained outages of power, water, and communications. 1 The measurable effect to the infrastructure and length of time necessary to restore services marked the longest basic utility outage in US history. In addition, the hurricane resulted in an estimated 2975 to 4645 deaths. 2,3 Thus, Hurricane Maria was, and continues to be, a public health crisis for the people of Puerto Rico. Children are especially vulnerable to the long-term negative outcomes of natural disasters given the disruption to their primary systems of social support . 4 Although previous studies have indicated that approximately half of children will adjust and recover within 1 year of a natural disaster without intensive intervention, other studies have demonstrated that up to one-third will develop chronic symptoms such as posttraumatic stress, depression, anxiety, substance use, suicidal ideation, and/or aggressive behaviors. [4][5][6][7][8][9][10][11][12][13][14][15][16][17] In samples of mainland US youths, these symptoms were found to be more pronounced among ethnic minorities. 18,19 Puerto Rico's population of children and adolescents just prior to Hurricane Maria was an estimated 657 000, suggesting that a large number of youths could experience mental health difficulties directly attributable to their exposure to this climatic event. 20 Knowing that the health and educational risks to students were high, the Puerto Rico Department of Education established a program to screen all youths enrolled in public schools for disaster exposure and signs of emotional distress after Hurricane Maria in consultation with trauma researchers familiar with best practices for screening after a natural disaster. Briefly, those best practices are assessment beginning at 3 months after the event, using data to apportion whatever resources exist to the areas of highest need, and measuring symptoms of posttraumatic stress, anxiety, depression, and other known risk factors-for example, demographic characteristics, degree of exposure to disaster, and proximal and sustained stressors as a result of the climatic event. 8,9,11 This study presents the initial results of this screening effort, which are being used to facilitate the development and wide-scale implementation of an evidence-based system to address the ongoing mental health needs of Puerto Rican youths after Hurricane Maria. 21 The survey described herein was offered to all public school students in grade 3 or higher in Puerto Rico, representing, to our knowledge, one of the largest postdisaster screening projects in US history and the largest sample of Hispanic youths affected by natural disaster . 18 In addition to the best practices cited earlier, the methods were informed by seminal postdisaster studies in Puerto Rico and were culturally and linguistically tailored to the unique social context of the island. [22][23][24][25][26][27] --- Methods --- --- Distance and Income Additional calculations were conducted at the level of municipality to discern aerial distance from Hurricane Maria's landfall in Yabucoa and driving distance from San Juan, which was the central location for relief efforts and disbursement of aid. These values were derived from Google Maps using either Yabucoa or San Juan as the starting point and each individual municipality's name as the ending point. Distance was incorporated into analyses to examine the association between geography, initial and delayed stressful experiences, and symptoms of posttraumatic stress. Median income for each municipality was obtained from the US Census and also included as a predictor. 20 --- Procedures --- Statistical Analysis Descriptive statistics were compiled for all outcome variables, as was the frequency of individuals reporting clinically elevated symptoms of PTSD or depression. Differences in these statistics across sexes were also examined via t tests. Correlations between demographic, geographic, and main outcome variables were also calculated, and regressions were conducted to examine their association with symptoms of PTSD. The first of these analyses entailed sex, grade level, and municipality as the first of 2 regression steps, with individual risk factors in the second step. The second analysis involved the same first step, but included municipality median income and distance from hurricane landfall in the second step and individual risk factors in the third and final step. All tests were 2-sided and were conducted using P < .05 as the criterion for significance. Given that large samples tend to facilitate statistical significance for even minor discrepancies or associations between groups or variables, the results were also examined in terms of absolute differences. All calculations were conducted using SPSS, version 25.0 . --- Results A total of 226 808 youths were solicited, of whom 96 108 participated. As a result of the hurricane, 83.9% of youths saw houses damaged, 57.8% had a friend or family member leave the island, 45.7% reported damage to their own homes, 32.3% experienced shortages of food or water, and 16.7% still had no electricity 5 to 9 months after the hurricane . All results for exposure to hurricane stressors by region are shown in Table 2. Finally, a regression analysis was conducted to examine demographic and risk variables in terms of their association with PTSD symptoms. Sex, school grade, and municipality were entered as the first step in this analysis, and individual risk subscales were entered simultaneously as the second step. The results of this regression were significant and accounted for approximately 20% of variance in symptoms of PTSD , almost all of which was attributable to risk variables entered in the second step. Repeating this analysis with median income and geographical distance from landfall and aid entered as the second step, with risk variables moved to a third step, did not materially change the results . --- Discussion The main findings of the study indicated that youths in Puerto Rico experienced significant disasterrelated exposures as a result of Hurricane Maria. Unlike most disasters or negative etiologic risk factors, however, this devastation and concomitant child and adolescent mental health impairment appeared to be nearly ubiquitous regardless of geographical location or socioeconomic status. In addition to the direct effects of the hurricane, the subsequent implications for Puerto Rico's economy, culture, and rebuilding efforts were compounded given the mass exodus of much of its populace. 29,30 This expatriation is reflected in the current data in that 57.8% of respondents reported having a friend or family member who moved away from the island after the hurricane, representing substantial social upheaval and the need for individual adjustment. Overall results also indicated broad exposure to numerous stressful characteristics associated with the hurricane, including witnessing one's home and other homes being damaged; having belongings damaged; being forced to evacuate; having a family, friend, or neighbor experience injury or die; or fearing death or injury of self. In addition, children also reported numerous stressors associated with the aftermath of the storm, including shortages of food and water, theft and violence in neighborhoods, and friends or family leaving the island. Based on the results of the screening for traumatic stress symptoms, 7.2% of children would likely have a diagnosis of PTSD at the time data were collected for this study. This latter finding was disproportionately present for girls, which is consistent with previous examinations comparing rates of posttraumatic symptoms across sexes. 31,32 Initial loss, social disruption, and fear for one's life were associated with contemporaneous symptoms of PTSD, but long-term disruptions to resources were not. This finding suggests adaptation to disrupted and impoverished circumstances, unprecedented in US history prior to this point, and resilience on the part of the Puerto Rican people in facing this adversity. It is also possible to further contextualize the results of this study in comparison with previous examinations of children and adolescents subsequent to a natural disaster in Puerto Rico. For potentially traumatic events and hurricane-related stressors, but much lower rates of likely diagnoses of PTSD . 24 These discrepancies could be attributable to differences in the magnitude of the storms, given that Hurricane Georges was a category 3 storm and Hurricane Maria was a category 4 storm. In addition, the previous study was conducted approximately 18 months after the hurricane, whereas the current surveys were administered between 5 and 9 months after Hurricane Maria. It is possible that the elapsed time between disaster and measurement of the former study contributed to remission of symptoms in many youths who would have been categorized as having a likely diagnosis of PTSD. Evidence suggests that this pattern of gradual remission has a pronounced escalation between 8 and 15 months after a disaster, wherein measurably 50% of diagnoses of PTSD dissipate. 12 These differences are unlikely to account for the entire range of differences in diagnoses of PTSD, however, given that even liberal application of these data on diagnostic trajectories would estimate an approximately 2% base rate of PTSD by 8 months after Hurricane Georges in the former study. 24 Comparison with studies conducted after other mainland US disasters, however, indicated that the rates of likely PTSD observed in the current study were lower than those typically reported . 8,12,33 Similar to the trends in trajectory of diagnoses of PTSD noted earlier, the consensus findings of these studies indicated a steep rate of remission beyond 8 months after the disaster. Although direct comparisons across studies conducted at different times and in different contexts are not fully informative, the differences noted in the base rates of PTSD are suggestive of some interpretations. In particular, the fact that likely diagnoses of PTSD were much less common in the current data confers the possibility of moderating factors between traumatic exposure and the eventual development of symptoms of PTSD that were not assessed in the current study. For example, biological differences have been previously noted to be associated with differential responses to traumatic events, and the possibility of sociocultural factors such as familismo, a cultural value placing importance on strong family ties, may play a role in a given population's collective response to adversity and confer potential resilience. 34 The lack of inclusion of such potential moderating factors is a limitation of this study. --- Limitations Another potential study limitation is the lack of validation of the Spanish translation of the NCTSN-HART measure, which was not validated in Spanish at the time of the study and had not been previously implemented in Puerto Rico. Although the performance of this instrument in its other applications has been noted to be psychometrically strong, future studies should nonetheless examine whether these findings hold for studies in Puerto Rican or other Spanish-speaking samples. Additional limitations include a somewhat narrow focus on PTSD and depression, given that traumatic exposure could have had a broader association with many more areas of youths' lives. This was unfortunately a calculated trade-off in the design of this study, particularly considering the costs and attempts to move quickly in data collection to help prioritize deployment of resources to schools . In addition, the lack of predisaster data on these same children and adolescents limited the ability to discern a more precise and/or individualized effect of the hurricane. Given the thorough response of the Puerto Rico Department of Education and greater public recognition of the association of disasters with mental health, it is possible that policy development may eventually allow future studies to address this limitation by facilitating annual, identifiable completion of mental health surveys by all students every school year. --- JAMA Network Open | Psychiatry Mental Health Among Puerto Rican Youths After Hurricane Maria --- Drs Orengo-Aguayo and Young had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. --- Conclusions Despite the noted limitations, this study contributes to the knowledge of the magnitude of natural disasters and mental health symptoms of Hispanic youths and broadens the scope of investigations by including a large population of public school-based children and adolescents. It is also illustrative of the benefits of research and applied partnerships in responding to social and public system difficulties. 35,36 The work described herein began when the Puerto Rico Department of Education approached Medical University of South Carolina personnel the day after Hurricane Maria had dissipated, and was constructed from the onset to entail a community-based participatory approach. [36][37][38] Ongoing collaboration is also explicitly intended, which will, we hope, enable infusion of science into practice through development of an evidence-based system and eventual diffusion into the fabric of typical educational procedures. 21 In particular, the Puerto Rico Department of Education is currently using the findings of this work to most efficiently and effectively deploy
Quantifying the magnitude of disaster exposure and trauma-related symptoms among youths is critical for deployment of psychological services in underresourced settings. Hurricane Maria made landfall in Puerto Rico on September 20, 2017, resulting in massive destruction and unprecedented mortality. OBJECTIVE To determine the magnitude of disaster exposure and mental health outcomes among Puerto Rican youths after Hurricane Maria. DESIGN, SETTING, AND PARTICIPANTS Survey study in which a school-based survey was administered to each public school student at all schools in Puerto Rico between February 1 and June 29, 2018 (5-9 months after Hurricane Maria). Of the 226 808 students eligible to participate, 96 108 students completed the survey.Participants were assessed for exposure to hurricane-related stressors, posttraumatic stress disorder (PTSD), and depressive symptoms, using standardized selfreport measures administered in Spanish. Descriptive statistics were compiled for all outcome variables, as was the frequency of individuals reporting clinically elevated symptoms of PTSD or depression. Differences in these statistics across sexes were also examined via t tests. Correlations between demographic, geographic, and main outcome variables were also calculated, and regressions were conducted to examine their association with symptoms of PTSD. RESULTS A total of 96 108 students participated in the study (42.4% response rate; 50.3% female), representative of grades 3 to 12 across all 7 educational regions of Puerto Rico. As a result of the hurricane, 83.9% of youths saw houses damaged, 57.8% had a friend or family member leave the island, 45.7% reported damage to their own homes, 32.3% experienced shortages of food or water, 29.9% perceived their lives to be at risk, and 16.7% still had no electricity 5 to 9 months after the hurricane. Overall, 7.2% of youths (n = 6900) reported clinically significant symptoms of PTSD; comparison of the frequency of reporting clinically elevated symptoms of PTSD across sex yielded a significant difference (t = 12.77; 95% CI of the difference, 0.018-0.025; P < .001), with girls (8.2%) exceeding the clinical cutoff score more often than boys (6.1%). Finally, similar analysis of differences in depression between sexes was also significant (t = 17.56; 95% CI of the difference, 0.31-0.39; P < .001), with girls displaying higher mean (SD) scores (2.72 [3.14]) than boys (2.37 [2.93]). Demographic and risk variables accounted for approximately 20% of variance in symptoms of PTSD (r 2 = 0.195; 95% CI, 0.190-0.200).Rican youths to high levels of disaster-related stressors, and youths reported high levels of PTSD and depressive symptoms. Results are currently being used by the Puerto Rico Department of Education (continued) Key Points Question What was the magnitude of disaster exposure and mental health outcomes on Puerto Rican youths after Hurricane Maria? Findings Results from a public schoolbased survey administered to 96 108 students revealed that 83.9% saw houses damaged, 57.8% had a friend or family member leave the island, 45.7% reported damage to their own homes, 32.3% experienced shortage of food or water, 29.9% perceived their lives to be at risk, and 16.7% still had no electricity 5 to 9 months after the hurricane. Overall, 7.2% of youths reported clinically significant symptoms of posttraumatic stress disorder, with demographic and risk variables accounting for approximately 20% of variance in symptoms. Meaning Puerto Rican youths experienced significant disaster exposure and reported trauma-related symptoms that warrant evidence-based mental health services.
Introduction Nigeria has the third-largest HIV epidemic globally and one of the highest incidence rates in sub-Saharan Africa [1]. e prevalence of HIV in Nigeria is 1.3% among the adult population, representing 1.6 million Nigerian adults living with HIV at the end of 2020 : 960 thousand of these cases are women, while 650 thousand are men [2]. e Test and Treat policy was introduced into the guidelines for managing HIV/AIDS by the Federal Ministry of Health in December 2016. is policy was implemented in response to the Treat All initiative of the World Health Organization [3]. e policy provides universal access to comprehensive HIV treatment and care and reiterates that all people with HIV are eligible for antiretroviral therapy immediately after diagnosis. Retention in HIV medical care measures one's engagement with care [4]. Multiple methods for estimating retention in care are often based on the number of HIV clinic visits attended regularly [4]. e ability to be retained in care for HIV-positive individuals is critical to achieving good treatment and health outcomes and curbing the incidence of HIV infection [4]. Recent studies have shown that lower retention in HIV care is a significant barrier to optimizing HIV care, leading to a worse health outcomes and increased HIV infection [5]. Retention in care and adherence to treatment is critical for favorable outcomes in HIV care, making it imperative to assess the retention in care under this new policy and the factors associated with patients' retention in HIV care, especially in settings such as Nigeria, where the loss to follow-up can be common [6]. Program studies in Nigeria often report more than a 20% loss to follow-up greater than 12 months before the Test and Treat policy was implemented [7,8]. According to the United States Agency for International Development [9], potential barriers to retention in care include side effects of the ARTs, perceived stigma of antiretroviral drugs, and difficulties accessing HIV care centers during operating hours of work. Others include poor service quality, the discriminatory attitude of the clinic staff, depression, anxiety, and lack of family support. For persons with HIV, being retained in care is vital for achieving good health outcomes and preventing HIV transmission. Women make up the more significant proportion of people with HIV/AIDS and need to be supported in every way possible to ensure that they remain in care and have positive health outcomes [10,11]. Nigeria has several public health challenges due to the lack of appropriate health policies, poor resource allocation, and limited resources. HIV/AIDS remains a significant public health issue in Nigeria, with women disproportionately more affected, accounting for 56.5% of infected cases [12]. Gender inequality, often perpetuated by cultural and societal norms, remains integral to HIV/AIDS transmission [12]. Young women are more vulnerable to the disease, while older women and young girls are disproportionately affected by the burden of care for other family members with HIV in the wake of the scourge [12]. Nigeria has one of the highest unequal balances of power between men and women globally. Gender power imbalances mean that women often face barriers in dictating their sexual partner selection, use of contraception, number and spacing of children, and their healthcare, all of which put them at greater risk of HIV [13]. is study aimed to explore the facilitators and barriers to retention in care among HIV-positive women after the Test and Treat policy was implemented in Nigeria. Using a qualitative approach, we interviewed a sample of women seeking HIV care and enrolled as patients at the AIDS Prevention Initiative in Nigeria treatment center, Lagos University Teaching Hospital . --- Methods We conducted an exploratory qualitative study to examine the facilitators and barriers to retention in HIV care among women seeking HIV care at the AIDS Prevention Initiative in Nigeria clinic in Lagos, Nigeria. is clinic is located at the Lagos University Teaching Hospital . It is one of the largest HIV clinics funded by the United States Presidential Emergency Plan for AIDS Relief in Nigeria. From April 1, 2021, to October 31, 2021, we scheduled and conducted interviews by individual phone calls with women retained in HIV care using a pretested interview guide with open-ended and probing questions adapted from the literature review [14]. --- Participant Recruitment. To be eligible for the study, respondents must be female adults clinically diagnosed with HIV and must have been enrolled in HIV care at the APIN clinic between January 1, 2017, and December 31, 2019. e women must have been in care for at least 12 months when the interviews were conducted. According to APIN treatment center guidelines, retention in care was considered as women known to be alive and attending a minimum of two HIV care visits greater than 90 days apart within 12 months after ART initiation [15]. Recruitment occurred through a purposive sampling approach. We obtained a list of all patients registered at the clinic between the stipulated periods to identify respondents. is list was filtered to obtain the compilation of HIV-positive women retained in care at the clinic for twelve months and over. e final sample of eligible women was 252. Fifty of the eligible women were randomly selected and were contacted by phone, informed of the study and its objectives, and asked about their interest in participating in the study. For the women who showed interest, a study team member contacted them by phone calls to inform the women about the study method, its scope, and objectives. e team member called back after one week to obtain consent from the women, and interviews were scheduled at a convenient time for each woman. Interviews were continued until no new information was obtained from the women. --- Data Collection Tools and Techniques. e interview guide had five sections: Section one contained questions on demographics. Section two explored the knowledge of the women on ARTs and the benefits and frequency of taking the medicines. Section three explored the presence of social support and how the social support assists the women to remain in care, the source of income, and challenges that may arise in earning income for daily living, and motivation for staying in HIV care. Section four was in two parts: the first part dealt with the ease of transportation to the clinic, cost of transportation, and travel time, while the second part of the section attempted to explore the perception of the women on the quality of care received at the treatment center and how they feel the services can be improved to ensure continued retention in HIV care. Other questions explored the challenges they may experience in accessing care and how they overcome some of these challenges. Section five contains questions on the intention to remain in HIV care. Using Andersen and Newman's Behavioral Model for healthcare utilization [16][17][18], we defined and analyzed the factors that may influence retention in HIV care. is model provides a framework for understanding how patient and environmental factors may impact retention in HIV care and outcomes. ANBM is based on three major components, which are as follows: 2.2.1. Predisposing Factors. Individual predisposing factors include the demographic characteristics of age and sex, social factors such as education, occupation, ethnicity, social relationships, values, and knowledge related to health and health services. --- Enabling Factors. Financial capability and institutional factors enable services utilization. Individual financial status involves the disposable income and wealth at an individual's disposal to pay for health. Institutional factors deal with availability and access to a regular source of care. --- Need Factors. At the individual level, these include perceived need for health services and evaluated need . A total of twenty-four interviews were conducted between April 1 and October 31, 2021, and each lasted 35 minutes on average. e interviewer was trained to prevent interference of personal bias, judgments, or assumptions. All interviews were conducted in English; field notes were made during the interviews and used to augment analysis. Incentives were given to the participants in the form of airtime phone credits. Interviews were confidentially conducted with the informed consent of the participants. We obtained informed consent from the women to audiotape their responses by phone. --- Data Analysis. Responses of the participants were audiotaped and the information later transcribed verbatim. e interviewer and one trained research assistant reviewed the transcription for accuracy. e data were analyzed manually using narrative and content analysis by two research assistants who participated in a two-day training on developing a qualitative codebook and identifying themes using our study objectives. We applied the generated codes to the transcribed responses of the participants, separating the responses to each of the questions using Microsoft Excel; recurring themes were identified and presented cohesively in line with the study objectives and analyzed using the ANBM of healthcare utilization. Participant quotations were presented in line with the themes, with each quote deidentified. Central themes are presented in Table1. Ethical approval was obtained from the Health and Research Ethics committee of the College of Medicine, University of Lagos, with the approval number CMUL/HREC/01/21/791. --- Results --- Participant Demographics. A total of 734 women were registered in care; 411 were still in care at the end of 2019, of which 252 were eligible for the interviews. Fifty of the women were randomly selected and contacted for the interview. Twenty-four in-depth interviews were conducted among HIV-positive women retained in HIV care. e ages of the women ranged from 18 to 56 years, with a mean value of 37.4 ± 9.27 years. Most women had postsecondary education , 70.8% were employed, and 41.8% were married. Table 2 provides the demographic characteristics of the respondents. 1), we summarized the themes and the subthemes of the determinants of retention in care as perceived by the respondents. --- emes. Using the ANBM (Table --- Predisposing Factors. Several key themes emerged from the qualitative data that describe the predisposing factors women have toward knowledge of and benefits from taking ARTs. --- Knowledge and Attitude of the Women to ART --- Most Women Are Aware of ARTs and eir Benefits. Sixty-eight percent of the respondents knew what ARTs are. Some could not describe the function of the drugs in clear terms, but they were able to state that they no longer fall ill if they are on ART. Some participants reiterated this in the following excerpts: "I know that if we stop taking the drugs, we will start falling sick again." ". . .what I understand when I started taking my drugs, not that the drug will make it to go, but it will make somebody live for the meantime, not forever." When asked about their perception of the benefits of taking the drug for women with HIV and the people around them, all the respondents mentioned that taking the ART benefits people living with HIV/AIDS . Some of the mentioned benefits include better health, more strength, and the ability to carry out activities for daily living as stated below: "For me, I see myself as a living person when I am taking the drug because all those symptoms that are there before are going gradually." ". . .so that the virus does not get out of hands to be fullblown AIDS." In comparison, 28% of the women were not aware that taking ART regularly has its benefits for the people around them. Some responded: "No, they do not know I am positive." Others mentioned that it is beneficial to the people around them: "You are not spreading the virus to them, so you are keeping them safe." Ten percent of the respondents mentioned the incidence of side effects as one of the disadvantages of taking ARTs. When asked how they could overcome this challenge, the women said they notify the clinic about the challenges with the drugs. e drugs are either changed, or the women are taught some coping mechanisms with the side effects once the clinic is notified: " e one I took before if I take it and I do not eat on time, it will weaken my body, and I stool. I complained, and they changed the drug for me." When asked how often they feel the ARTs should be taken, 90% of the respondents said every day, but some of the women admitted skipping a few doses due to lack of access to where the drugs were kept or tiredness. "Every day, but I will not lie; I do not take it every day, sometimes I am far away from where the drug is. I have been away from it for up to 2 months." "Every day, I take at night, and I do not forget, no matter how tired I am, there is timing for it. Occasionally I miss it, maybe once or twice a month when I am tired and sleep off. I will not lie to you." --- Social Norms and Perceived Control --- Household Awareness about Respondents' HIV Status. e women were asked if anyone in their household knew about their HIV status; 79% of respondents affirmed that their family members were aware of their status. e respondents gave reasons such as informing certain household members based on trust. Some household members knew because they were present during the screening and diagnosis process or due to their involvement in taking care of the sick. "My older brother and my older sister, I told my sister two weeks after my diagnosis. I have to tell her, and I trust her. She has been very supportive; even when I cut my hair, she cut her hair." "My mum and my sister, it was a long story. . . .it was my mum that took me to the hospital, so she knew automatically." However, some respondents stated that no one in their household knew about their status because they do not trust anyone with such information to avoid being stigmatized or to prevent divorce from their spouses. "I do not want, people I have are lousy, so I do not want to tell anyone." irty-seven percent of the women responded that they do not have anyone they depend on for social support. e respondents cited the inability to trust other people with information about their HIV status as the primary reason they do not have social support. "I cannot tell my friends o! My family members disowned me talk less of my friends. Yes, she is different, and even at that when I offend her, she uses it to insult me. I cannot tell anyone again, except maybe I met someone at the treatment clinic, and we became friends. I do hide my drugs; it is my secret." Enabling Factors. e key themes were as follows: the ability to pay, availability and accessibility of the treatment facility, and treatment facility factors. --- Ability to Pay --- Sources of Income and Challenges Encountered in Obtaining Income for Daily Living. Many respondents stated that they depend on their spouse/partner or other family members for income, "Yes, I am helping my cousin out at least, and I am dating someone. He supports me with transport money." "Yes, my husband , because we do everything together" irty-seven percent of the women responded that they have an adequate source of income and do not depend on other people. "No, I do not depend on anybody. I sustain myself with my business." On the challenges that HIV-positive women may face with obtaining income for daily living, 66.7% of the women responded that they do not have any challenge in getting income for everyday living, while 33.3% gave reasons such as stigmatization, loss of job, other family responsibilities, and poor economic downturn. "Where I worked before, because of my frequent illness, some fraudulent guys signed documents I did not sign and obtained company money, and I was laid off. I got a new job; coming to the clinic is challenging, especially when trying to hide your status." "I had a job before I fell sick; I did not resign; I took an extended leave to care for my health. I tried to sue the initial hospital I visited; that was how my employers discovered my status. When I apply for a job, they say no chance once they know my status" "For now, I am taking care of my mum, and I eat whatever she eats. I pray she gets ok so that I can try to start up my life again. I have been with her since December 2019 now." "My shop just got demolished, so I am looking for a new place to trade." 3.6. Availability and Accessibility of Facility 3.6.1. Difficulties/Challenges Encountered in the Process of Accessing Care at the Clinic. Sixty percent of the women stated challenges in access to care at the clinic. ese challenges include transportation costs, delays at the clinic, taking time off work to be at the clinic, cost of laboratory tests, secrecy, and other family responsibilities: "Like me, for more than five months I was not able to come because of no transport money, talk less of money to run my test." "Transportation cost and taking excuses from work; as I said earlier, it already cost me one job." "I said I work in a company; when I come to the clinic, they do not attend to us on time, you will be there 2 o'clock, 3 o'clock." "Just the regular Nigerian system; -like you going early and they change your file for their friends'." "Some people, if they are secretive to their partner or somebody next to them, it will be tough for you to go to the clinic and get your drugs, except you work and you do not work with your husband, or else how will you come to the clinic secretly." Forty-five percent of the respondents mentioned that they plan and organize transportation to the clinic before the set date or save up until they can afford the transport and laboratory test costs, often leading to missed appointments; others ask for a rescheduled clinic appointment or take unpaid leave for the day to attend the clinic. "So what I do is to get a vehicle that will agree before my clinic day so that I do not miss my appointment." "I save up the transport fare, and I try to be as discrete as possible at work." "I come when I can, but before my drugs finish." "It has not been easy, especially when appointment clashes with work. Once I know the next appointment will clash, I ask the doctors to reschedule it for me-during midterm breaks and public holidays. Or I give excuses at work, highest they will deduct the day's pay from my salary." 3.6.2. Ease of Access to the Clinic, Travel Time, and Transportation Costs. Some of the women responded that getting to the clinic is challenging; they spend over an hour on average as travelling time to the clinic and between an average of 1,000 and 1,500 naira on transportation costs to and from the clinic. "It is not easy; sometimes I trek to reduce transport cost." "Transportation is not easy; I live at Ajah, so sometimes I do not come for the appointment." "When I lived in Lagos from Ketu, I think I spent maybe 1000 naira plus, at times my husband would carry me before he got to know about my status. When I moved to my sister's place from Shagam, I sometimes spent 3000 naira on transport to and fro; if I stay late and start pricing, maybe about 2000 naira. It takes about 2 hours to get to the hospital." --- Healthcare Facility Factors --- Presence or Absence of Support from the Treatment Clinic. e women were asked about their perception of the support received from the clinic; most of the respondents said that they had received adequate support from the clinic. e support mentioned includes ART counselling, financial aid, job counselling, and emotional support. " ey have been supportive; there was a time they gave some of us transport fare back. e doctor gathers the youths, advises them, and does get-togethers for them. e youths need such, and she is trying with her money. I commend them." " ey give me advice, and I will never forget that. I go to see the counsellor. Even in the pharmacy, they give advice. Even if I do not have money, they still help out. I have been going to meetings for adolescents. E.g., operation triple zero. We do get-together parties, and we share our stories and go for outreaches." Some women responded that they do not receive adequate support from the clinic, citing reasons such as unfriendly and insulting staff, preferential treatment, and delays. " ey are very insulting; they even made me tired of coming to that place. If I remember my appointment, I will be sad. ey are discriminating against somebody . at is why I said if there is a place they are selling the drugs; I will buy for myself and not bother to come." " ey tell you no network to check your viral load, no doctor, sometimes you spend the whole day, sometimes you will be there till. . ., except I tip them that is when I can leave on time. I wish there were an injection; you hear patients complaining about the drugs where you sit." "Not so bad, but they should be a bit more accommodating and faster. ey waste a lot of time. Some of them are always kind of edgy and act like they are always angry, but the doctors are nice." When asked about any other kind of support they would like to receive at the clinic, the respondents mentioned reducing waiting time, more privacy, and the reduction of the cost of laboratory tests. "Timing, some people work, and you come around 7.30 am to 8 am and leave at noon. I feel they waste time. e accountant is not there even when you want to pay for the test. Since it is an appointment, you should not be kept for more than 2 hours. For people working when you take excuse from work every six months, and you do not return for the day, you are playing with query." "If they can make it private, it is too crowded. e number they see is too much. When they shout your name, everyone sees you before you walk the whole length. I once saw my neighbor from the market and had to dodge." "Like the test we do, and we pay 5000.00 naira , it is expensive before we do not pay, they should do it for free or for a token, the 5,000.00 naira is too high." --- Need Factors. e significant themes were the individual's perception of health, perceived needs, and evaluated needs. --- Individual's perception of health/Self-Perception of Being HIV-Positive. On exploring the feeling of the respondents about being diagnosed with HIV and how they handled the news, the women expressed a range of emotions from being sad, depressed, angry, surprised, or shocked. Some respondents found out about their HIV status from mass screening exercises , while some were from opportunistic testing during child immunization visits. In comparison, others fell ill after contracting the virus. "I was sad; I wanted to bring the hospital down. My husband was sick, and he did not come clean. e doctor suspected it was HIV and asked me to test. It was positive. I lost my husband in 2017. He never disclosed that he had HIV." "I was not happy o, because it was something I was not expecting; I went to church for medical screeningmalaria, typhoid, and HIV. When it came out, they did not give it to me. When my sister saw it, she did not believe it; she asked me to go to another hospital for a test. at was how I came to LUTH." "I was depressed. It was during my child immunization, and we already had two kids. I was told that my baby is positive." All the respondents expressed that they currently feel better and are hopeful for a cure for HIV/AIDS. "I am better; if I tell you I have it, you will not believe; I am healthy. I take my drugs, and I eat well." "You always still have the stigma. I feel if it has gone, I will be much better." " ere are plenty diseases now-cancer, diabetes, etc. I use that to console myself that the HIV is not a death sentence. I just take it as normal; people who do not have HIV also die." 3.9. Perceived Needs. When asked about their motivation for remaining in care, the reasons given by the respondents were as follows: 3.9.1. Personal Drive and Focus on Health and Life Goals . "So the motivation is to be healthy so that you can be at the same level as other people or even better. "I want to live, and I want to fulfill my purpose in life. I have to." " ere are a lot; one will be okay, they said if you do not take it the disease will come back, one will live long and will be able to take care of my children." "I want o to be ok; I do not want anything to happen to me because my children are still small." 3.10. Evaluated Needs 3.10.1. Linkage to Care. On time from diagnosis to linkage to care, 25% of the respondents mentioned that they were started on ART the same day. In contrast, the remaining 75% said a time lag of about one or two weeks for the results of laboratory investigations to be ready before they were placed on ART. "I started immediately. I was informed about my status. I was at LUTH because my baby was sick..." " e following week, I was pregnant, and I started immediately. My viral load dropped drastically." 3.10.2. Intention to Remain in Care. e women responded that the first step taken after a clinic appointment is to check for the date of their next clinic appointment and then keep the drugs in the usual place to facilitate easy access and out of prying eyes. --- Discussion Several factors interplay to influence women's retention in HIV care in Nigeria. Women's existing knowledge and beliefs about HIV and ART facilitated retention in their HIV care. e respondents in our study mentioned some of the benefits of taking ART to include improving health and having the strength required for daily living. A similar qualitative study in an HIV clinic in Southern Ethiopia identified personal factors such as misconceptions about HIV and ART as deterring factors to retention in care. Participants in their study reported that persons who received a positive HIV result were often unaware that ART and other medical interventions could help them remain healthy [19]. Most of the respondents who had disclosed their HIV status to their partners or other household members mentioned that they had adequate support to remain in care. In contrast, HIV status disclosure has been a devastating experience for a few, leading to stigmatization. Several studies have demonstrated that disclosing an individual's HIV status to household members enhances retention in care and provides social support [20,21]. Although disclosure of HIV status may have dual effects regarding accessing social support, the benefits of disclosure overwhelmingly outweigh potential adverse effects [22,23]. A cross-sectional, descriptive study conducted in Kwa-Zulu Natal, South Africa, in 2008 explored the relationship between social support, HIV-related quality of life, and adherence and concluded that having close friends and family was significantly associated with a greater sense of social support [24]. Our study findings also suggest that a supportive social network is essential for retention in care among women living with HIV/AIDS. However, a prospective observational cohort study of persons newly diagnosed with HIV infection carried out among 168 HIVpositive individuals followed up for over one year in Texas noted that social support may not be sufficient to ensure success across the HIV care continuum [25]. Enabling factors mentioned by the participants include the following: the ability to pay , availability and accessibility of care facility , and health facility factors . We observed that the ability to be financially self-sufficient or have a dependable income source plays a significant role in retention in care for the respondents. Poverty and economic insecurity are known barriers to routine access to HIV care and treatment services. With the global HIV burden higher in resource-limited settings, direct and indirect costs of seeking care can prevent retention in HIV care [26]. High transportation costs, time away from incomegenerating economic activities, and the costs of medical services create barriers to care and treatment, which is more challenging for those who are not economically stable [26]. In as much as the direct costs of ARTare free, there is still the ancillary care cost, such as the cost of laboratory tests, which is 5000.00 naira . Some participants consider the laboratory test costs as a deterring factor to retention in HIV care at the clinic. Similarly, a study conducted in Botswana among HIV-positive individuals and their health care providers noted that if cost is removed as a barrier, adherence will be predicted to increase from 54% to 74% [27]. In Nigeria, where 40% of the citizens live below the poverty line [28], food insecurity may affect adherence in multiple ways. ere will be trade-offs will be between paying for food and accessing treatment, leading to missed appointments [29]. e respondents in our study mentioned clinic barriers such as long wait time, poor attitude of some clinic staff, and lack of privacy. Other barriers mentioned were nondisclosure of HIV status, time away from work, transport costs, and laboratory test costs. Lifson and colleagues [19] noted that negative experiences of receiving HIV care, which may adversely affect retention in HIV care, can be provider-and system-based. Negative provider interactions included the perception that doctors or nurses are impatient or do not express a welcoming attitude. Also included are concerns about the lack of confidentiality by clinic staff, including counselors. Other adverse health system factors included the frequent change of clinicians, which may result in changed treatment plans; a poor medical records system; overcrowding and shortage of chairs in waiting rooms; and long waiting time for appointments, test results, or other services. For example, because results for laboratory tests such as CD4 count were not immediately available, patients might have to return several days to a week after an initial visit for counselling about their results [19]. Need factors were an individual's perception of health , perceived need to remain in HIV care , and evaluated needs . On self-perception of being HIV positive, the respondents expressed various emotions when told about their HIV diagnosis, but finally accepting their HIV status was seen as a positive influence on remaining in care. Similarly, a study conducted in the Shiselweni region of Swaziland exploring the influence of acceptance and denial on linkage to HIV care concluded that acceptance of HIV-positive status appears to be crucial to the success of the Test and Treat initiative. At the same time, disbelief on receiving a positive diagnosis can prevent accessing HIV care [30]. e respondents in our study stated that they take their medications regularly except for occasional missed doses. e motivation for attending the clinic and taking the ART was to be healthy and live long, to be able to care for their children, and also as a result of encouragement from the healthcare workers at the clinic. A qualitative study conducted in three Ryan White-funded HIV clinics in Philadelphia, USA, in 2015, mentioned the perceived need for retention in HIV to include the belief by the respondents that the medications are keeping them alive [31]. On the time of clinical diagnosis to linkage to care, the respondents mentioned that they were linked to HIV within two weeks of diagnosis. is is an essential step to facilitate retention in care under the test and treat policy. It has been demonstrated in several studies [32][33][34] that immediate linkage to care and commencement of ART is essential to achieving and maintaining viral suppression. Retention in care and adherence to ART have been independently associated with good long-term HIV outcomes [35]. Still, the underlying behavioral factor is the intention to remain in care. Our respondents mentioned looking out for their next clinic appointment once they receive their medications and keeping the newly collected ART packs in the usual place not to forget to take them. A study carried out among 244 adults in two HIV clinics in Houston, Texas, noted that only intention to adhere to HIV treatment remained a statistically significant predictor of antiretroviral adherence after adjusting for other confounders [36]. A study assessing the status of HIV-positive individuals considered lost to follow-up at APIN clinic before the implementation of the Test and Treat policy noted that the primary reported reasons for HIVpositive individuals' discontinuation from the clinic were long distance and high transportation costs to the clinic, unfriendly staff, and feeling healthy [37]. --- Study Limitation. ere are several limitations to this study. e HIV-positive women retained in care were purposively sampled, which can be prone to selection bias and may reduce the generalizability of the results. Additionally, participants' responses may have been influenced by social desirability bias. However, the interviewer was trained to ensure confidentiality and avoid judgmental reactions to minimize this risk. Our interviews were limited to women retained in care, so while we could garner some ideas of potential barriers to care, the absence of poorly retained patients decreases our ability to draw strong conclusions about true barriers. Finally, as with all studies of a purely qualitative nature, the findings of this study may not be generalizable to other populations, particularly as the respondents are all women, and clinical practices and geographic and cultural environments may vary by gender. --- Conclusion Test and Treat hold great promise to deliver ART to more persons with HIV. However, many of the same barriers to long-term retention are present in the context of where the patients live and attend clinic. Our results emphasize the need to educate patients about HIV and treatments; understand patients' social environment, disclosure, and levels of stigma; understand patients financial and transportation situations; and improve customer service and efficiency at the level of the clinic. ere is the need to seek contextually appropriate interventions to address these factors to reduce the transmission of HIV infection and ensure good health outcomes for HIV-positive women. --- Data Availability e data generated during or analyzed during this study are not publicly available in order to protect patient privacy. Data are available from Omoladun O. Odediran, email: [email protected], for researchers who meet criteria for access to confidential data. --- Conflicts of Interest e authors declare that there are no conflicts of interest to declare. --- Authors' Contributions --- Supplementary Materials e semistructured interview guide used to carry out the interviews with our study participants. Completed SRQR checklist.
Background. In Nigeria, various sociocultural and economic factors may prevent women from being retained in HIV care. is study explores the factors associated with retention in care among women with HIV in a large HIV clinic in Lagos, Nigeria, under the Test and Treat policy. Methods. Women living with HIV/AIDS (n 24) enrolled in an HIV study at the AIDS Prevention Initiative in Nigeria (APIN) clinic in Lagos, Nigeria, were interviewed from April 1 to October 31, 2021, using a semistructured interview guide. Interviews were audio-taped, transcribed verbatim, and the themes were analyzed using the framework of Andersen and Newman's Behavioural Model for Healthcare Utilization. Results. e mean age of the respondents was 37.4 ± 9.27 years. e identi ed themes were as follows: being aware of the antiretroviral medications and their bene ts, the household's awareness of the respondents' HIV status, and the presence of social support. Other themes were the presence of a dependable source of income and the ability to overcome the challenges encountered in obtaining income, ease of travel to and from the clinic (length of travel time and transportation costs), securing support from the clinic, challenges encountered in the process of accessing care at the clinic, and the ability to overcome these challenges. Also mentioned were self-perception of being HIV positive, motivation to remain in care, linkage to care, and intention to stay in care. Conclusion. Several deterring factors to retention in HIV care, such as nondisclosure of status, absence of social support, and clinic barriers, persist under the Test and Treat policy. erefore, to achieve the "treatment as prevention" for HIV/AIDS, especially in sub-Saharan Africa, it is essential to employ strategies that address these barriers and leverage the facilitators for better health outcomes among women with HIV/ AIDS.
Background The disposal of human faces in the fields, bushes, forests, open bodies of water, beaches, and other open spaces is called open defecation [1]. According to World Health Organization and United Nations Children's Fund Joint monitoring program 2021 reports, 494 million people practice open defecation [2]. Most of these people lived in rural areas and nearly half of them lived in sub-Saharan Africa [2]. There was a nearly 50% decrement in open defecation practice in Central and Southern Asia from 20,015 to 2020, whereas in sub-Saharan African countries, it decreased only from 22 to 18% [3]. Diarrheal disease is the second major cause of death in children under the age of five, causing 1.7 million morbidities and 760,000 deaths every year globally [4]. In Africa, it is also one of the main causes of death in underfive children [5]. Poor sanitation is a serious public health issue that has been related to several undesirable health outcomes, including diarrheal diseases and trachoma [6]. The practice of open defecation aids in the transmission of microorganisms that cause diarrheal diseases [7], with children being the most vulnerable [8]. A study showed that the prevalence of diarrhea was four times higher among OD practice communities as compared to OD-free areas [9]. Open defecation also the risks of exposing hundreds of millions of girls and women around the world to increased sexual exploitation and lack of privacy when they are menstruating [10]. Studies showed that the majority of OD practices were taken place in rural areas of low-income countries [11]. Other factors such as financial status of the household [12,13], household size [13], occupation [13], and region [14] had an association with open defecation. Interventions to improve human excreta disposal facilities have been demonstrated to be successful in preventing diarrheal diseases at their most important source by preventing human fecal contamination of water and soil [5,15]. According to the 2030 Sustainable Development Agenda, no child should die or get sick as a result of drinking contaminated drinking water, and/or being exposed to other people's excreta [16]. However, with these interventions, the practice of OD in sub-Saharan Africa is not significantly decreased [2,17,18] as a result, children's death due to diarrheal disease is common [19]. However, there is little evidence on the pooled prevalence and factors contributing to OD practice among households in SSA. Therefore, this study amid to assess the pooled prevalence, wealth-related inequalities, and other determinants of OD practice among households in SSA. Understanding these different patterns of inequality is an important first step in devising appropriate strategies to reduce them [20]. It is also critical to understand what factors influence the pace of improving sanitation and reducing diarrhea morbidity and mortality caused by the lack of sanitation. --- Methods --- Study setting, and period This study was conducted among 33 SSA countries. The sub-Saharan is the area in the continent of Africa that lies south of the Sahara and consists of four vast and distinct regions, i.e., Eastern Africa, Central Africa, Western Africa, and Southern Africa. Together, they constitute an area of 9.4 million square miles and a total population of 1.3 billion inhabitants [21]. Recent standard DHS data set of SSA countries within 10 years were our data source. To get a representative sample of recent standard DHS data from each region of SSA, 10 years of DHS data were taken. The surveys are nationally representative of each country and population-based with large sample sizes [22]. A total of thirty-three SSA countries were represented for this study in the four regions. In Eastern Africa, eleven countries , in Southern Africa three countries , in Central Africa six countries , and in Western Africa thirteen countries were included for this study. --- Population Of the total of 47 countries located in SSA, only 41 countries had Demographic and Health Survey reports. From these, five countries, namely, Central Africa Republic , Eswatini , Sao Tome Principe , Madagascar , and Sudan have a survey report before the 2010 survey year and excluded from further analysis. Moreover, three countries were excluded due to the DHS data set not being publicly available. Finally, a total of 33 sub-Saharan African countries were included in this study. All households which were found across 33 SSA countries during the survey period were our source population. Whereas households assessed for sanitation facilities during each survey across 33 SSA countries were our study population. Finally, the analysis contained a total weighted sample of 452,281 households. --- Sampling method The most recent standard census frame was used in all of the surveys conducted in the selected countries. Typically, DHS samples are stratified by administrative geographic region and by urban/rural areas within each region. DHS sample designs are usually two-stage probability samples drawn from an existing sample frame. Stratification was achieved by separating every geographical region in the countries into urban and rural areas. In the first stage of sampling, Enumeration Areas were selected with probability proportional to size within each stratum. In selected EAs, following the listing of the households, a fixed number of households is selected by equal probability systematic sampling The detailed sampling procedure was available in each DHS reports from the Measure DHS [22]. The household records data sets were used. Weighted values were used before using the DHS data set to restore the representativeness of the sample data. Since the overall probability of selection of each household is not constant. DHS guideline set four sampling weighting methods and from that, we used the household sampling weight . Sample weights were generated by dividing by 1,000,000 before use to approximate the number of cases [23]. However, there was no change in the value of the total sample size after weighting which was 452,281 . --- Study variables The outcome variables of the study were open defecation which includes households with a lack of sanitation facility, defecating on bush or field [24]. The independent variables considered for this study were categorized as individual-level variables, such as age, sex, marital status, and educational attainment of household head, household family size, media exposure status of the households, and household wealth index. Whereas community level variables, such as place of residence, region in sub-Saharan Africa, survey year, and country income level . --- Data management and analysis This study was performed based on the DHSs data obtained from the official DHS measure after permission was obtained. The set of household data data was used to extract the outcome and the independent variables. The data clearance, descriptive, and summary statistics were conducted using STATA version 14 software. Before we conduct any statistical analysis, the data were weighted for the sampling probabilities using the weighting factor to restore the representativeness of the survey and to get reliable statistical estimates. The pooled estimate of open defecation practice among households in SSA and sub-regions was estimated using a metan STATA command. It was determined using the proportion of OD of each SSA country and the standard error which was calculated from the proportion and sample size in each country. Then further subgroup analyses were done to minimize the heterogeneity between studies using region in SSA, level of income of the country, and the DHS survey year. --- Mixed effect analyses and model building Since the DHS data have a hierarchical structure, where households are nested within a cluster/EAs, which violates the assumption of independence of observations and equal variance across clusters, mixed effect models which include both fixed and random effects were used to assess the clustering effect of open defecation usage among 33 sub-Saharan African countries. The fixed effects were used to estimate the association between the likelihood of OD and explanatory variables at both individual and community levels. In the multivariable analysis, the associations between dependent and independent variables were presented using adjusted odds ratios and 95% confidence intervals with a p value of < 0.05. Random-effects were used to estimate a measure of variation and estimated using the Interclass Correlation Coefficient , Median Odds Ratio , and Proportional Change in Variance . The ICC reveals the variation of OD between clusters is calculated as; ICC = VC VC+3.29 * 100% , where VC = cluster level variance. The MOR is defined as the median value of the odds ratio between the area at the lowest risk and at the highest risk when randomly picking out two clusters. MOR = exp.[√ × 0.6745], or MOR = e 0.95 √ VC where VC is the cluster level variance. The PCV shows the variation in OD among households explained by both individual and community level factors. PCV = V null-VC V null * 100% where Vnull = variance of the initial model, and VC = cluster level variance of the next model [27][28][29]. In general, in mixed-effect analysis, four models were fitted. The first was the null model containing only the outcome variables which were used to check the variability of OD in the cluster. The second and the third multilevel models contain household-level variables and community-level variables, respectively, whereas in the fourth model both household and community level variables simultaneously were fitted with the OD. Model comparison was done using the likelihood ratio and deviance test and the model with the highest likelihood and the lowest deviance was selected as the best-fitted model [27][28][29]. --- Concentration index and graph analyses The concentration index and graph approach are used to examine socioeconomic inequalities in health outcomes [30,31]. The concentration curve is used to identify whether socioeconomic inequality in some health variables exists and whether it is more pronounced at one point. It displays the share of health outcomes accounted for cumulative proportions of individuals in the population ranked by wealth status from the poorest to the richest [31,32]. This study's health outcome variable was the cumulative proportion of open defecation practice, whereas the wealth status of the households was ranked the poorest to the richest . The concentration curve would be a 45 0 line indicating the absence of inequity. Whereas, the concentration curve lying above and below the equality line indicated that OD practice is disproportionately concentrated between poor and rich, respectively [33]. The greater the degree of inequity, the more the concentration curve diverged from the diagonal line [31]. Twice the area between the concentration curve and the diagonal --- Marital status The marital status of the household is categorized as married and not married Family size Categorized as 1-3, 4-6, and 7 and above Media exposure A composite variable obtained by combining whether a respondent listens to the radio, and watch television with a value of "0" if women were not exposed to at least one of the two media, and "1" if a woman has access/exposure to at least one of the two media [25] Wealth index The data sets contained a wealth index that was created using principal components analysis coded as poorest, poorer, middle, richer, and richest in the DHS data set. For this study, we recorded it in three categories poor , middle and rich Access to a drinking water source Basic drinking services: drinking water from an improved source, provided collection time is not more than 30 min for a round trip, including queuing [18]. On the other side limited drinking services: drinking water from an improved source for which collection time exceeds 30 min for a round trip, including queuing [18] Community-level variables Residency Urban or rural based on where the household lives in the data set was used without change --- Region The regions in sub-Saharan Africa were categorized as Eastern Africa, Central Africa, Western Africa, and Southern Africa --- Countries income level The countries income status was categorized as low income, lower middle income, and upper-middle-income country based on the World Bank List of Economies classification since 2019 [26]. World Bank calculated country income based on Gross National Income per capita, which categorized as low income $1,025 or less; lower middle income, $1,026-3,995, upper middle income $3,996-12,375,and high income $12,375 or more [26] DHS survey year Survey year means the recent standard DHS data collection period of each country from 2010 to 2020. Categorized as the survey years 2010-2014 and 2015-2020 line is the concentration index [32,34]. It ranges from -1 to + 1 and the sign indicates the direction of the relationship between the health variable and the distribution of living standards [31,35]. --- Result --- Sociodemographic characteristics of the study population A total weighted 452,281 households in 33 SSA countries were included in this study. From these, nearly three fourth 328,270 of the household heads were males. Nearly three-fifths of the study participants were living in rural areas and of them about one-third practice OD. Nearly one-third of the head of household had no formal education and from them, two-fifths practiced OD. From the total 150,716 households, 34.54% were practice OD . --- Individual level factors --- The pooled prevalence of open defecation among households in sub-Saharan Africa The overall pooled estimate of open defecation among households in sub-Saharan African countries was 22.55% with I 2 = 99.9% and ranges from 0.81% in Comoros to 72.75% in Niger . Since the I 2 value was large, which shows the true variabilities of OD among households in 33 SSA countries, then to treat this heterogeneity effect further subgroup analyses were performed based on the region in SSA, level of income of the country and the DHS survey year. Based on subgroup analysis using regions in SSA, the pooled prevalence of OD ranges from 12.02% in Eastern Africa across 11 countries to 31.10% among 13 West African countries. Moreover, the pooled prevalence of OD across countries' income levels was determined. Among 21 low-income level countries, the pooled prevalence of OD was 25.13% , whereas it was 20.23% across 4 upper middle-income countries. In addition, the pooled prevalence in 15 countries whose DHS survey was conducted before and in 2015 was 31.03% , whereas it was 15.48% in 18 countries whose DHS survey after 2015 . --- Multi-level analysis of factors associated with open defecation among households in sub-Saharan Africa In random effect analysis, the ICC in the null model showed that about 36% of the variations of OD practices among study households were attributed to the difference at the cluster level. The MOR value in the null model also revealed that the median odds of using OD between the highest open defecate clusters and the lowest open defecate clusters was 3.64. Furthermore, the PCV valve in the final model indicates the variation in the OD usage among study households was explained by both the individual and community level factors simultaneously. Model comparison/fitness was done using loglikelihood and deviance test, then the last model has the highest loglikelihood and the lowest deviance and was taken as the best-fitted model . In fixed-effect analysis, as the age of household head increase to 26-40 and ≥ 60, the odds of OD usage decrease by 27% [AOR = 0.73; 95%CI; 0.71, 0.75] and 34% [AOR = 0.65; 95%CI; 0.63, 0.67], respectively. The odds of using OD decreases by 43% and 57%, as the head of household educational status increases to primary and above primary educational status [AOR = 0.67;95%CI;0.66, 0.69] and [AOR = 0. Living in the West Africa region were nearly three times more likely to use OD, but living in Eastern Africa region were 52% less likely to practice it as compared to living in Central Africa regions, [AOR = 2.758;95%CI; 2.64, 2.80] and [AOR = 0.48;95%CI; 0.46, 0.49], respectively . --- Wealth related inequality of open defecation In this study, the wag staff normalized concentration index and curve were done to assess the wealthrelated inequality of OD practice among households in SSA. The result showed that OD was significantly disproportionately concentrated on the poor households with [C = -0.55; 95% CI: -0.54, -0.56], which means that when households income status becomes lowest the burden of practicing OD is increasing. The graph in Fig. 2 also showed that the distribution line of OD is above the line of equality. This shows that OD among households in SSA was disproportionately concentrated on the poor household . --- Discussion This study was conducted to assess the pooled prevalence and determinants of open defecation among households in SSA. Based on this the pooled prevalence of OD practice among households of 33 SSA countries was 22.55% . This is in line with a report by the Joint Monitoring Program of WHO and UNICEF 2021 report in sub-Saharan Africa [2]. However, this study is lower than studies in India [36,37] and, higher than a JMP 2021 report worldwide , and Central and Southern Asia [2] of households practicing OD. This might be due to the difference in government commitments and involvement of different community initiative programs, which have a better approach toward the reduction of OD practice and the achievement of the desired sanitation program [12,38]. Having household money constraints to build the sanitation facilities is also another reason to practice it [37]. On the other hand, having a toilet facility at home may not be a guarantee to use toilet facilities [13]. The community accustomed to it as the old habit are also another reason for more practicing OD [37]. In this study as the age of household head increases, the chance of OD practice becomes decreases. This is supported by studies in rural North India and Tanzania, OD practice decreases sharply among the oldest household members [39,40]. The study in Indonesia is also showed that OD practice increasing among adults [41]. This might be due to that, as the age increases people on average are unable to move more freely outside their homes. On the other side, disability or incontinence mostly occurs in the advanced age group, which makes OD difficult or impractical [39]. In this study OD practice decrease as the educational status of the household head increase. This is supported by a study in a systematic review and meta-analysis in Ethiopia [42], a study in Tanzania [43], Nigeria [44], and Ghana [13]. This might be because educated household heads have a relatively better understanding of the relevance of having sanitation facilities and the effects of OD practice. Moreover, a higher level of education status increases the probabilities of income earning capacity of households, which is the main constrain to constructing a toilet facility [37,45]. Households that have limited access to drinking water were more likely to use OD. This is supported by a study in Dangilla Ethiopia, which showed that having limited water access has an association with OD practice [9]. This is could be explained by the fact that households having water shortages could not keep their hygiene and might not have water for toilet usage. In our finding, households who have media exposure were less likely to use OD. It is supported by a study in India [46], in Nigeria [47] which showed that using mass media, social media, and community-based media was important for the prevention of OD practice. Exposure to mass media increases awareness about the impacts of open defecation and enables a better internalize the benefits of using a toilet [44,46]. In this study, having middle and high wealth status of the household, as well as households from lower-middle and upper middle-income level countries, were less likely to have OD as compared to poor households and households from lower-income level. This is in line with a study in Ethiopia [4], Nigeria [44], and Gahanna [13]. The majority of OD practices have been taking place in low-income countries [11]. However, in contrast to other studies, the prevalence of OD in upper middle-income countries was higher than in the lower middle-income countries in this study. This might be due to a small number of countries eventually a small sample sizes included in upper middle-income countries as compared to lower middle-income. The concentration index and graph in this study also revealed that OD was significantly disproportionately concentrated in poor households. This is in line with a study in Tanzania, where a pro-poor distribution of OD practice [40]. Studies showed that there are economic inequalities of OD practices between the poorest and richest households [14]. Absolute sanitation inequalities are greatest in countries such as Pakistan with the largest spread between the richest and the poorest [20]. Countries that practiced OD most widely are those with high levels of poverty [13,20]. A study showed that per capita aid disbursement for sanitation had a strong relationship to OD reduction in low-income countries [11]. In this study, rural households were more likely to use OD as compared to urban. This is in line with WHO reports [14], a study done in Nigeria [44], India [48], and Nepal [49]. This might be due to an unequal distribution of power and limited access to infrastructure, information, and income which leads to poor practices of OD and limited sanitation in rural residences [44]. The main strength of this study was the use of the weighted nationally representative data with a large sample which makes it representative at the national. Therefore, it can be generalized to all households during the study period in SSA countries. Moreover, the use of pooled estimation and a multilevel model took into account the nested nature of the DHS data and the variability within the countries to get a reliable estimate and standard errors. Another strength of this study was estimating the pooled estimate of OD practice in sub-Saharan Africa and sub-regions will give invaluable information for region-specific intervention. However, it is not free of limitations. The heterogeneity of the pooled estimate of OD was not managed using further subgroup analysis. Moreover, since we use the secondary data recall biases and social desirability biases might be expected. --- Conclusions Open defecation practice remains a public health problem in sub-Saharan Africa. Individual level factors, such as being aged, having higher educational attainment, having media exposure, and having middle and higher household wealth status had a preventive effect for OD practice. However, having limited access to drinking water had a positive association with it. Moreover, community level factors, such as living in rural residences, and living in West African countries had a positive association with OD practice whereas living in East Africa and living in lower-income and lower middle income have a preventive effect for OD. There is a significantly disproportional pro-poor distribution of OD practice in SSA which means that its distribution favors the poor households. Each country should prioritize eliminating OD that focused poorest communities, rural societies, and limited water access regions. Media exposure and education should be strengthened. Moreover, public health interventions should target to narrow the poorrich gap in the OD practice among households. Policymakers and program planners better use this evidence as preliminary evidence to plan and decide accordingly. --- --- Abbreviations --- --- --- --- Competing interests The authors declare that they have no competing interests. There are no financial, non-financial, and commercial organizations competing of interests. ---
Background: Open defecation facilitates the transmission of pathogens that cause diarrheal diseases, which is the second leading contributor to the global burden of disease. It also exposed hundreds of millions of girls and women around the world to increased sexual exploitation. Open defecation is more practice in sub-Saharan African (SSA) countries and is considered an indicator of low socioeconomic status. However, there is little evidence on the pooled prevalence and factors contributing to open defecation practice among households in SSA. Objectives: This study aimed to assess the pooled prevalence, wealth-related inequalities, and other determinants of open defecation practice among households in sub-Saharan Africa. Methods: Demographic and Health Survey data sets of 33 SSA countries with a total sample of 452,281 households were used for this study. Data were weighted, cleaned, and analyzed using STATA 14 software. Meta analyses were used to determine the pooled prevalence of open defecation practice among households in SSA. Multilevel analysis was employed to identify factors contributing to open defecation practice among households in SSA. Moreover, concentration index and graph were used to assess wealth-related inequalities of open defecation practice. The associations between dependent and independent variables were presented using adjusted odds ratios and 95% confidence intervals with a p value of < 0.05.The pooled prevalence of open defecation practice among households in sub-Saharan African countries was 22.55% (95%CI: 17.49%, 27.61%) with I 2 = 99.9% and ranges from 0.81% in Comoros to 72.75% in Niger. Individual
Background When considering the principle of medical confidentiality, it is argued that disclosure of genetic information is a special case because of the impact that this information can have on the health and lives of relatives [1,2]. This claim triggers discussions about exceptions to the principle of medical privacy in relation to genetic information. Is it possible to apply the previously established condition that disclosure of information is permitted if there is 'a clear and present danger' which can only be avoided by this disclosure [4], to the sharing of genetic information? Or should we establish new rules for genetic information which enable an individual to make informed choices whether or not the damage can be prevented? The answer to these questions will be determined by whether we take the Enlightenment-rooted individual of Anglo-Saxon culture or the family as the unit of privacy [5]. For example, while the individual's privacy is prioritized in the USA where liberal individualist ethics is dominant, there is an entirely different perspective on sharing genetic information in Japan, where Confucian ethics are dominant and family relationships more central [6]. Even within Western societies, there are different views about the ethics of sharing genetic information, all of which may be reasonable and well thought-out. For example, while Australia and Israel accept the disclosure of genetic information even in the cases in which the risk is not clear, including cases involving unborn babies, the consent of the patient is an absolute pre-requisite in Turkey and France [7][8][9]. These differences could risk opening the door to ethical relativism, and responding to these conflicts involves a re-examination of principlism and openness to the possibility of applying alternative ethical approaches, other than liberal individualism [10]. It is now beginning to appear that, for the time being at least, the traditional medical targets of treatment and cure have been superseded by targets of diagnosis and prevention which rely heavily on the free availability of medical genetic information. This shift in emphasis has resulted in a redefinition of what constitutes 'benefit' and what constitutes 'harm' where genetic information is concerned. These revised, and culture-specific, definitions of benefit and harm in the context of disclosure of genetic information [11] may contribute to the drawing up of new, more comprehensive rules and guidelines for treating sensitive genetic information. This new approach argues that the opinion of a majority of both directly and indirectly affected individuals will be crucial in establishing the rules governing the disclosure of genetic information. For example, although the most common model of the family in Turkey is no longer an extended family group but rather a modern, nuclear group [12], a quarter of all Turkish marriages are still consanguineous, mainly between first cousins [13]. In addition to this, although rapid social and cultural change has lessened the importance of the family as a unit, and has hastened the decline of group consciousness and loyalty within the family group, while the blurring of gender roles has also changed the dynamics, the family unit is still the most important primary and intimate unit within Turkey [14]. The resulting family structure, with its high proportion of marriages between cousins, increases the likelihood of babies being born with genetic defects unless genetic information is shared in a responsible manner. Cytogenetic or molecular genetic tests are carried out in most Turkish medical laboratories and departments of medical genetics within medical faculties. They are also carried out in the increasing number of private medical laboratories. In certain cases, the difficulties experienced in providing genetic counselling, where the aim is to give information about the importance and possible outcomes of genetic tests, provide a context for a number of ethical problems. The absence of any national standards for the use of genetic information makes the field fraught with difficulties. The aim of this study is to explore the attitudes of related parties to the issue of genetic information and how it should be shared. This exploration is considered with particular reference to a recent case which took place in Turkey, and involves subjecting this case to an ethical analysis using existing ethical rules and results from the other countries. --- Methods --- Sample and setting This study was a carried out in Kocaeli, the second largest industrial province in Turkey after Istanbul. The study was carried out in two phases. The first phase focused on establishing which areas of specialization most frequently demand a genetic test. To determine this, we reviewed annual statistics of the Medical Biology and Genetics Laboratory -in which molecular genetics and cytogenetic testing are performedlocated within the Faculty of Medicine of Kocaeli University b . It was discovered that the departments in which genetic testing were most likely to be requested were obstetrics and gynaecology, and paediatrics. Professionals specialising in these fields in the Kocaeli University Hospital were contacted and asked for write-ups of the cases where they had experienced an ethical dilemma. These case studies were narrated by the researchers in a manner which brought out the ethical dimension, and this format was finalized between the researchers and specialists in a face-to-face meeting. The Case extracted from this process and used in this study was written up by a neonatologist. It concerns a person named Mahmut, who was found to be a balanced chromosome carrier as a result of a test conducted after his first baby was born with Down's syndrome. However, he refused to share this information with his wife or his siblings. In a balanced translocation, "pieces of chromosomes are rearranged but no genetic material is gained or lost in the cell. The individual with a 'balanced' translocation will usually have the correct amount of genetic information for normal development. But there is an increased chance that there will be reproductive consequences due to the child receiving an 'unbalanced chromosome complement'i.e., the child has more or less chromosomal material than usual [15]." The second phase, a cross-sectional research study, was performed in Kocaeli. Two categories of people were invited to participate: all specialists working in the fields of obstetrics and gynaecology or paediatrics and serving in Kocaeli; and the patients who are referred to the Laboratory of Medical Biology and Genetics in the Faculty of Medicine by physicians working in related departments and who gave their consent for genetic tests. Structured questionnaires, developed by the researchers, were left for the physicians to fill in, while the patients and parents were given structured face-to-face interviews covering the same series of questions. Patients and parents were informed about the study, and emphasising voluntary participation, oral informed consent was obtained. The physicians were reminded that returning a completed study form implies informed consent. This study was approved by the Human Research Ethics Committee of Kocaeli University . --- Questionnaire and data analysis The questionnaires for the study were developed in the following way. Firstly, ethical issues arising from genetic testing were identified through a literature search. These issues were then used to gather opinions from medical ethics specialists, medical biology and genetics specialists, gynecologists and obstetricians and child health and disease experts, in order to create a draft questionnaire. The draft questionnaires were shaped based on the characteristics of the two groups that would be targeted by the study and were checked by an expert in the Turkish language. Pilot studies were conducted involving two groups, one of ten physicians and the other of ten patients to ensure clarity of the questionnaires . In this main study the questions which explored the socio-demographic and professional characteristics of the groups and the attitudes of these groups regarding the ownership of genetic information both in general and with specific reference to the case study were used. The first four statements about the case were related to the ethical obligations of the physician, the fifth statement was related to Mahmut's personal responsibility and the last statement concerned the obligations of the state in terms of social justice. The relation between the answers of the parties to the questions and the personal characteristics of the participants and the professional features of the physicians, and the relation between the information level of the patients/parents and the attitudes of the parties towards the issue of ownership of genetic information were analyzed with the Kruskal-Wallis test and p < 0.05 was accepted as the significance level. --- Results The case 26-year-old Nurgül gave birth to a premature baby. The baby had hypertelorism, simian crease, endocardial cushion defects, chronic lung disease and pulmonary hypertension. A chromosome anomaly was detected in the test which had been suggested by Dr. Elif, the neonatalogist, who suspected that the baby might have Down syndrome. The mother, who was hoping to have another baby in the future, insisted that the cause of the Down syndrome be investigated and asked for tests to be carried out both on her and on her husband. Realizing that the father was unwilling to participate, the neonatalogist Dr. Elif gave information to the spouses about prenatal diagnostic tests which could be carried out in the course of a future pregnancy. Two weeks later, Nurgül and her husband Mahmut, who could not withstand his wife's determination, applied to have the test. Mahmut was identified by the test results as a balanced translocation carrier. Mahmut has younger siblings, all of whom may wish to have children in the future. Dr. Elif suggested to Mahmut that it would be helpful to them if he were to share this information about his condition with his first degree relatives and his wife who was keen to start a second pregnancy. However, Mahmut said that his communication with his relatives was not at all good anyway, and he was not planning to have a second baby. For these reasons, he refused to tell his family members, or his wife, about the test result. Of the physicians who were approached to take part in the research, 155 participated. The age range of this group was 30-60 years, with a mean age of 44.4 ± 10.3. Socio-demographic characteristics of the participating physicians are shown in Table 1. Of the 155 participating physicians, 80.6% stated that they suggest genetic testing to their patients as part of their daily practice, while 40% of the physicians stated that they suggest genetic testing to their patients at least once a month. When the physicians were asked what they thought about the ownership of genetic information, 62% of them stated that it belongs to the individual, 26% of them said it belongs to the family and 12% of them said that it belongs to humanity. The average of age of the 104 patients/parents participating in the research was 32.4 ± 7.0 . As all participants had been pre-diagnosed, they had all already given blood for karyotype analysis either on their own or behalf of that of their children. Nearly two thirds -64.4% of the participants had been referred to the genetics laboratory from the department of obstetrics and gynaecology, and the remaining 35.6% had been referred by the department of paediatrics. Only 58% of these participants said that they had been given sufficient information about the test. When the patients were asked about the ownership of the genetic information; 39% stated that it belongs to the individual, 49% to the family and 12% to humanity. The responses of the participants to the case study, and the relationship of these responses to the independent variable are shown in Table 3. A small proportion of both groups agreed with the statement that Dr. Elif should respect Mahmut's decision. Men were more likely to respect Mahmut's decision than women in the group of patients . The majority of both groups agreed with the statement that Dr. Elif should notify Mahmut's wife about the results despite Mahmut's request to keep his genetic information confidential. Physicians who were over fifty years old and believed their knowledge about genetic testing to be 'sufficient' were the most likely group to agree with the statement about notifying Mahmut's wife . The majority of participants disagreed with the statement that Dr. Elif should avoid revealing the truth to Mahmut's wife in the interests of family unity; however men in the patient group were more likely than women in the same group to agree with this statement. The statement Dr. Elif has a responsibility to warn Mahmut's siblings about the genetic test results provoked a mixed reaction with agreement from 41% of the physicians and 53% of the patient group. The older and more experienced the physicians were, the more likely they were to agree about the importance of warning Mahmut's siblings. In addition, the idea that it was the physician's responsibility to inform siblings was one that found particular support from physicians and from those patients who think genetic information belongs to the family. The majority of the participants agreed with the statement that Mahmut has an obligation to reveal the truth to his siblings and to advise them to take test. Most of the physicians who believe genetic information belongs to humanity agreed with the idea that the responsibility of warning siblings belongs with Mahmut himself. The last question about this case was whether there was an obligation for the state to provide free genetic testing for people in the case of chromosomal abnormalities which affect subsequent generations. The response to this was a positive one with 78% of the physicians and 94% of the patients agreeing with the idea that the state should be obliged to make such tests available free of charge. No relationship was detected between these responses and the independent variables. Those patients who disagreed with this idea thought that the state should only pay for testing those people who could not afford to pay for the tests themselves. --- Limitations There were several limitations to this study. First, since we conducted the study only in Kocaeli, the findings cannot be generalised to the Turkish population as a whole. Second, there is potential for selection bias as the participants were those who were willing to give their --- Discussion The extent of the individual's right to privacy, and the extent to which the physician has an obligation to protect the third parties involved, constitute the ethical dilemma at the heart of the case-study. -One quarter-of the physicians surveyed and -one eighth-of the patients believed that Mahmut had a right to expect this information to be kept confidential. The majority of those who supported this view were male patients. The responses of participants to questions about the issue of protecting the unity of the family overlapped with the responses about the respect for the privacy. --- Effect of gender on disclosure of third parties Gender has a clear effect on attitudes towards concealing this information, both in our study and in a similar research study carried out in France. In both studies, a substantial proportion of the men surveyed were sympathetic to the idea that test results should not be disclosed if the subject of the tests so wished [16]. Although it could be argued that this sympathy on the part of males is likely to be affected by the patient's gender, this result is also consistent with other research findings which show that women are more likely to take responsibility for warning others who might also be at risk [17,18]. When considered from the perspective of feminist ethics, this finding seems to support the idea that it is characteristic of women to protect everyone's benefit, take care of other people's needs and sympathize with others [19]. For example, it has been reported in a Canadian study that, among the individuals who have BRCA1/2 mutation, women are more willing to share the information about risk by contacting others, even distant relatives [20]. --- Medical confidentiality versus protecting others The obligation of protecting patient confidentiality, which is also a requirement of respecting patient autonomy and privacy, is an integral part of the duty of medical confidentialitywhich itself is one of the earliest obligations of medicine. The main exception to this duty arises when third parties might be exposed to an unacceptable degree of damage, especially within the context of HIV/AIDS or psychiatry [4]. In Turkey there are no legal standards about a duty to warn in such situations. Although there is a bill of law about HIV/AIDS in which partner notification in limited situations is mentioned, it is not yet legalized [21]. There are also public health reporting requirements for some contagious diseases; however, these notifications are only required for establishing health policies and do not include partner notification [22]. On the other hand, both physicians and those who have had genetic tests seem to find the idea of sharing the test results with a spouse more appealing than the idea of sharing them with another individual, such as a sibling, who runs the risk of experiencing physical or social damage on the basis of these genetic test findings. This situation, which cannot be evaluated within the scope of the available exemptions of the medical confidentiality, is noteworthy. Although the carriers of balanced chromosome will not have a risk of experiencing a serious medical problem themselves, it is possible that their children will. A definite decision needs to be made, therefore, about whether this risk is sufficient to allow violation to the principle of medical confidentiality [16,23], because concealment of a secret such as that involving Mahmut may cause harm and considerable distress to any third parties who may be affected. There is a conflict here between the obligations of the physician in terms of medical confidentiality and the ethical obligation to prevent other people from incurring damage or minimizing the damage. There is also a conflict between the principles of nonmaleficience and justice [3]. Although Mahmut's request for his test result not to be disclosed to his wife was not met with approval from the participants in our study, there is only one article in the Regulation on the Centres for Diagnosis of Genetic Diseases covering this topic. The article states that "…genetic test results cannot be revealed to third parties without the consent of the person [9]". This ethical approach is supported by the Regulation of Patients' Rights [24] and the Turkish Medical Association's Code of Medical Ethics [25] within the scope of the obligation to respect patient privacy and confidentiality. The only exemption stated in the TTB's Code of Medical Ethics is when the life itself is endangered: "The obligation of confidentiality of the physician becomes invalid in circumstances where keeping confidentiality would put the life of the patient or other people in jeopardy ". The exemptions in which the breach of the confidentiality can be approved ethically are grounded in the possibility and degree of damage in these ethical codes. While the current regulations include this proviso, an ethical concern arises from the fact that physicians prefer to disclose the genetic information to the patient's wife rather than to his siblings. Older, more experienced physicianswho presumably have more knowledge about the implications of genetic testingshare this concern. The duty of the physician regarding the prevention of damage to third parties is likely to make them more aware about people who are at serious risk of damage. Therefore, the benefit and harm of revealing or hiding the information should be evaluated in each case with respect to the principle of proportionality [23,26]. When the ratio of benefit and harm resulting from sharing the information with the spouse is evaluated objectively, the fact that the mother who gives birth to a baby with Down syndrome is already at higher risk than other mothers in her next pregnancies [27], makes it difficult to justify violating Mahmut's confidentiality when considering the 'clear and present danger' rule. Nevertheless, the physician is expected to encourage Mahmut to discuss his results with his wife Nurgül so that she can make informed decisions about future pregnancies and have choices about whether to give birth to a baby with Down syndrome. This will also increase honesty within the marriage. In addition, the physician should encourage Nurgül to speak about her own health condition, and her plans about having children, with her husband [5]. The patients interviewed felt less responsible for warning siblings who might be at risk of being damaged by these results than they did about warning the spouses. However, physicians who were in their fifties and who were more experienced were more likely to give serious consideration to the potential harm to other people. The belief that the test results belong to the family as a whole appears to be behind the willingness to disclose information to siblings rather than to the spouse. Our opinion is that the number of participants in our study who felt that the primary responsibility for informing siblings lay with Mahmut rather than with the physician supports this theory . Although some of the patients appear to hold the view that it should be Mahmut who should inform his siblings about the result of the genetic testing, rather than the physician, because it would be difficult for physicians to communicate with the patient's relatives in their intense work environment, the physicians who believe that genetic information belongs to the family as a whole are even more likely to support this course of action . Research studies carried out with groups of balanced chromosome carriers in the USA [28] and England [29] found that brothers, sisters and other relatives were likely to be given information, in contrast to the studies carried out in Germany [30] and France [16]. In these latter countries, as in our case, the patients being tested refused to inform their relatives. The reasons they gave for their decision were that they want to take decisions about their family planning with reference to the present situation rather than to the future [16]; psychological reactions like guilt and shame; the fear of being stigmatized in the family on account of being a carrier; feeling inadequate to the task of informing relatives, or denial of the results and their implications and subsequent depression [30]. All of the participants in a Canadian study on patients with breast cancer felt not only that they had a responsibility to share the information but also that their relatives have the right to know [20]. It is important to determine the degree of harm that can be caused by the failure to share information, and seek reliable and valid evidence about whether the sharing of information can help prevent harm before making a decision about genetic information which could violate the principle of medical confidentiality [23,26,31]. Although the degree of potential risk of harm may change with time, as the field of medical genetics advances, the findings currently available indicate that the likelihood of adults appearing phenotypically normal but carrying balanced chromosome anomaly is 1/500 in the general population, and 80% of these cases are hereditary [29,32]. Consequently, it is possible to discuss certain risks, such as having a baby with an unbalanced chromosome anomaly [30,32], spontaneous miscarriage , infertility, or recurrent miscarriage in relatives. However, these risks can be prevented with prenatal or preimplantation cytogenetic diagnostic tests [30,33,34]. As a result it is argued that, when genetic risk and diagnosis is taken into consideration, sharing the information that a person is a carrier of balanced chromosome anomaly, even with distant relatives, can be justified [30]. On the other hand, researches in France and the USA suggest that some relatives who are informed by the testees do not feel any need to find out more information [16,30]. The suggestion that testees cannot inform their relatives effectively [35], or that the information can be misinterpreted [16], makes it all the more important that physicians provide relevant knowledge to third parties in the interest of preventing harm. The widely accepted idea that the individual has a moral obligation to inform his/her relatives [11,17,20,23,36] was evidently also held by the patients in our research. This result can be discussed within the framework of the individual's responsibility to his/her relatives. For example, as mentioned by Raz and Schicktanz [37], according to Kenen and Hallowel the increase in access to genetic information also increases the onus on the individual concerned to share his/her genetic information with any relatives who might also be affected, and Konrad defines the conflict between the imperative to disclose and the desire to hide the information as a moral conflict. Most of the German subjects affected by a genetic disorder believe they have a duty to warn their relatives, especially when preventive actions can be taken [37]. Informing the people at risk is also considered less important in our research and in a study conducted in Australia [11]. On the other hand, those who believe that genetic information belongs to the family as a whole tend to support the disclosure of such information, coinciding with the communitarian ethical approach which pursues the benefit of all family members who might be affected by the problems identified [38,39]. In addition to this, the virtues expected from Mahmutsuch as honesty in his sharing of information with his wife, and altruism in sharing the truth with his siblingsmay provide guidelines for ethical behaviour [40]. --- Confidentiality and insurance coverage of genetic testing The responsibilities of the state, in terms of enabling access to genetic tests and minimizing the damage people might experience if they lack access to such tests should be discussed with reference to social justice. The state's obligation relating to equal allocation of medical resources among the people who have similar needs is based on social justice. The responsibility of the state to enable the access to genetic tests not only for those who can pay but also for those who need them but who cannot pay [41], is based on an understanding that it is important to prevent damage, as far as possible, in those who are most likely to suffer from this damage [42]. The physicians and the patients in our study believed that, in situations where the reproductive choices for healthy generations might be affected, the state has an obligation to provide the relevant genetic tests free of charge. The regulations in Turkey appear to be compatible with these expectations. Although genetic tests are covered by health insurance based on medical need, these regulations also allow people who do not have health insurance to benefit from these expensive tests [43]. However, physicians and patients in our study believe that the cost of the tests should be met by the state even if there is no medical indication, as in our case. In fact, the state policy with regard to genetic tests/advanced diagnostic tests is determined by a cost and benefit analysis of genetic screening programs. The cost-benefit analysis for these programs is measured by their effectiveness in decreasing the incident and mortality/morbidity of the relevant genetic disease [44]. For example, the newborn screening program in Turkey does not include a test for hemoglobinopathy because such a program would have a cost-benefit advantage only if the national incidence of this condition was high. In Turkey, it is low, and so premarital blood tests are considered sufficient [45]. The regulations relating to the coverage of DNA tests, other than the judicial and medical indications, by health insurance [46], provide a legal framework in which the medical profession and the state can work together for the common good. The evidence-based medical indication, which should be pursued by the physician in the decision-making process, is relied upon within the context of the genetic tests, and as long as there is medical indication, the test fees are covered by health insurance [46]. c As a result, this regulation supports the additional duty of the medical profession, which includes the fair allocation of medical resources and prevention of their unnecessary use in terms of the principle of justice, along with the duty to provide medical treatment [47]. As observed in this case study, when there is doubt about the material benefit of the test, it seems difficult to justify the test and deem it a fair allocation of medical resources. --- Conclusions The family unit is still the most important unit among primary and intimate groups in Turkey [14]. The frequency of consanguineous marriage in Turkey may both increase the number of the babies born with genetic disorders, and give rise to more conflicts over whether or not to share genetic information. In our case study, which is valuable in terms of demonstration of the importance of cultural differences, the following conclusions were reached: Although many physicians believe that genetic information belongs to the individual, which suggests they support individual privacy, they also believe that, in certain situations, it is justifiable to breach the confidentiality of a testee. The majority of the patients interviewed appear to believe that informing the spouse, who is not personally at risk of serious damage at present, is the physician's responsibility, while informing siblings, who have the possibility of facing risks, is the testee's responsibility. This tendency to believe the spouse should be informed by the physician may arise from the importance given to the institution of the family, and the perception of the family as the keystone of society in Turkey. Finally, the majority of those patients interviewed believe that it is the responsibility of the state to provide genetic testing free of charge, even in situations where medical indication of the genetic test cannot be presented clearly and cannot be associated with just allocation of resources. The Turkish Department of Social Security Institution prefers to base such decisions upon the clarity of the evidence that can be gathered and on its applications. On the other hand, this does not seem to be an entirely satisfactory solution because of the concerns for possible discrimination among patients in the future. All these results demonstrate the necessity and the importance of informing all parties about the availability of genetic counselling and testing. Such information has not as yet been disseminated sufficiently in Turkey. In addition, we believe that opening ethical discussions with clinicians about the sharing of genetic information, establishing guidelines for practice and sharing these guidelines and the reasons behind them, with the wider population will help to pre-empt ethical dilemmas. As outlined in the case study, participants prefer breaching confidentiality in situations like those described the case story. Although we do not know the reasons underlying this belief, it is noteworthy and should be considered when establishing ethical guidelines for exceptions to medical confidentiality in Turkey. The Hospital of Kocaeli University is the oldest research hospital serving the West of the Black Sea Region and is a center for specialist referrals from the services. c However, the Turkish Department of Social Security demands the original document containing the test result before reimbursing costs. This rule, which was originally instituted to prevent the unnecessary use of the genetic tests, should be revised on the basis of potential damage to the individual. --- Additional files Additional file 1: Physician's Form in Turkish. Additional file 2: Physician's Form in English. Additional file 3: Patient's Form in Turkish. Additional file 4: Patient's Form in English. --- Competing interests We certify that we have no competing interests in respect of this manuscript. ---
Background: When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.The study was carried out in Kocaeli, Turkey. Participants were either paediatricians and gynaecologists registered in Kocaeli, or patients coming to the genetic diagnosis centre for karyotype analysis in 2008. A self-administered paper questionnaire was given to the physicians, and face-to-face structured interviews were conducted with patients. We used a case study involving a man who was found to be a balanced chromosome carrier as a result of a test conducted after his first baby was born with Down's syndrome. However, he refused to share this information with his wife or his siblings. Percentages of characteristics and preferences of the participants were calculated, and the results were analysed using Kruskal-Wallis test. Results: A total of 155 physicians (68% response rate) and 104 patients (46% response rate) were participated in the study. Twenty-six percent of physicians and 49% of patients believed that genetic information belongs to the whole family. When participants were asked with whom genetic information should be shared for the case study, most of the physicians and patients thought the physician should inform the spouse (79%, 85%, respectively). They were less likely to support a physician informing a sibling (41%, 53%, respectively); whereas, many thought the testee has an obligation to inform siblings (70%, 94%, respectively). Conclusions: Although Turkey's national regulations certainly protect the right of privacy of the testee, the participants in our study appear to believe that informing the spouse, who is not personally at risk of serious damage, is the physician's responsibility, while informing siblings, is the testee's responsibility. Therefore we believe that opening ethical discussions with clinicians about the sharing of genetic information, establishing guidelines for practice and sharing these guidelines and the reasons behind them with the wider population, will help to pre-empt ethical dilemmas.
Introduction The public, government departments and religious organizations themselves have multiple understandings or expectations in regard to the mission and role of religious, social services. As far as Christian social service organizations in contemporary China are concerned, there are complex overlapping or parallel relationships among their belief types, legal status types, and professional types. Under a broad concept, any religious organization with the function of social service or charity can be called a "religious social service organization"; in a narrow sense, religious social service organizations refer to those direct service agencies that mainly provide professional and specialized social services, which are different from membership associations, non-operational foundations, seminaries, etc. This paper discusses the functional characteristics and policy environment of different types of Christian social organizations participating in social services in China and is mainly based on the broad concept type of organizations. When discussing religious social service organizations in a narrow sense, the term "religious social service agencies" is utilized instead to show its difference from the broad meaning of the concept. --- 1. What is the impact of the inherent structure and function of the three types of organizations-namely, faith-based organizations, legal person organizations, and professional organizations-on their functional positioning and service provision? 2. What are the practical characteristics of each of the three types of systems in the operational field? 3. What are the public policy issues that need to be raised by each of the three types of systems? It involves two dimensions: how can new policy tools and implementation mechanisms be developed from the perspective of government policies to effectively promote the standardized development of religious social service organizations? For the purposes of Christian social organizations specifically, what are the strategic options for realizing their multiple service functions in order to improve performance management? --- Literature Review Christian social service organization research is an important multidisciplinary, or even interdisciplinary, research field. The Blue Book of China Charity Development Report has conducted a series of reviews on the status of religious social services and organizations . Theological experts and scholars from different disciplines have conducted a number of useful discussions on the pluralistic model of religion and the type of service organizations based on theological typology, the relationship between service organizations and sectarian churches, and the relationship between the gospel and service . The sociological perspective on religious service organizations entails a focus on typological function, modernity , cultural interaction, etc. ; some of the literature notes that the relationship between Christian social service organizations and the state and society is studied from the perspective of religious characteristics . The legal status type of religious social service organizations is a relatively local issue, mainly focused on basic research related to public administration and law , as well as organizational case studies . With regard to the development of social work and welfare policy disciplines, the professional issues of Christian social service institutions have also begun to enter the research horizon . The research on the development policy of religious social service organizations has not yet formed a separate topic, which is usually included in the history, role, and current situation of Christian charitable services , as well as the special research of foreign religious NGOs . There have been some developments and breakthroughs in the comprehensive research and case studies on the attributes of the types of religious social service organizations in China, which have enriched and fulfilled the research literature base. However, compared with the development scale and potential of Chinese Christian social service organizations, the breadth and depth of the existing research is far from enough. This study attempts to introduce and build a multidisciplinary analysis framework, thereby focusing on the triple typological attributes, practical characteristics, and policy issues of Christian social service organizations in China. This is performed in order to fill certain gaps in the existing research dimensions and evidence. --- Methodology 1.4.1. Multidisciplinary Perspectives A multidisciplinary perspective reveals the diversity of the same topic from a number of different methodological perspectives. Whilst drawing on Sider and Unruh's typological framework, in this paper, the religious characteristics of Chinese Christian service organizations are discussed; this study is based on the type of legal status of non-profit organizations in China and the social service functions of Christian service organizations in China are explored. Furthermore, the professional functions of Christian social service organizations in China with reference to the classification of professional service organizations are also discussed; this is after sorting out and summarizing the main practical characteristics of the three types of organizational systems. When drawing on the concepts of policy tools in the public management academic community , we propose issues that require inclusion into policy actions, as well as attempt to construct a certain guiding policy matrix. The historical perspective of this paper focuses on displaying key events, factual data, and sequences of development. Further, using only a few concepts, patterns, and inferences to illustrate the themes is avoided. --- Method This study is conducted via literature-based research assisted by the field research method. Literature-based research is conducted in order to construct a specific "space-time" presentation of social facts and scientific cause-and-effect explanations. The main literature analysis methods used in this paper include: the literature review and citation is mainly achieved by aiming at or borrowing the research literature and data published by academic and professional circles in China and abroad; case and historical analysis mainly entails focusing on various case data, including various reports on institutional websites , professional newspapers , and WeChat official accounts; content analysis entails mainly focusing on official government documents, including government policies, regulations, work summary reports, etc. Field research is conducted by on-site visits, as well as observational, individual, and group interviews. The authors visited twelve service organizations of Christian and Catholic backgrounds, four local Christian associations, two venues for Christian activity, and one secular faith-based partner organization in the Shandong, Hebei and Fujian Provinces during 2018-2022. Informed consent was obtained from each respondent to participate in the study. Ten of these organizations and their project examples are cited in this paper. The authors conducted a multilevel thematic analysis of the qualitative attitude data and the qualitative behavior data ; moreover, certain interview transcripts and field observation records are cited in this paper. --- Triple-Type Attributes of Chinese Christian Social Service Organizations There is a complex intersection or parallel relationship between the belief types, legal status types and professional types of Christian social service organizations in China. --- The Types and Attributes of Faith-Based Organizations In China's current development stage and policy context, the "sensitivity" of Christian social service organizations mainly stems from their belief characteristics but not their legal status and service functions. --- Type Connotation According to the degree of correlation of the contributing factors or defining features of the religious NGOs and programs, American scholars Sider and Unruh proposed a six-tiered continuum classification: faith-permeated organizations, faith-centered organizations, faith-affiliated organizations, faith-based organizations, faith-secular partnerships, and secular organizations. The first five types can be generally differentiated by the degree of their relevance to religious matters, which are: highly relevant, relatively high in relevance, fairly relevant, relatively low in relevance, and lowly relevant . In terms of the proportion of types, the first two types of 5-star and 4-star service organizations are small in number. As such, of the organizations that were investigated, mainly 3-1-star organizations were found to be operating. The naming of the organization can reflect the attributes and degree of faith. According to the government social organization inquiry platform, the vast majority of social organizations with "Christian" and "Catholic" in their names were religious groups, and social service organizations account for only 1.4% of them . Comparing two inquiries made in August 2018 and August 2022, the number of social service organizations with the title "Christian" has decreased. This reflects the "neutrality" and "de-sensitivity" of naming on the one hand and indicates that the registration of certain religious organizations tends to be standardized and updated as religious venues from private non-enterprise units or religious bodies on the other . The YMCA/YWCA is the only Christian social service organization with a national association in China. As a professional service organization, its legal status is a religious organization rather than a private non-enterprise unit 2 . The person in charge of the Jinan LCQN Center identifies themselves as a "faith-based organization" rather than a "faithaffiliated organization". "If we put faith organizations at the top, it will greatly interfere with other participants; I hope that more people will participate in the work out of respect for human dignity; we do not emphasize in the work and do not require staff to accept our faith; in this case, we can absorb participants in a wider range, so that people who do not have faith or who reject faith can more freely participate in service work". 3 Huiling, China's largest non-governmental community service organization for people with intellectual disabilities, is a typical example of a faith-secular partnership . The organization and management of Weifang SJ Community Golden Sunshine Elderly Care Service Center is completely secular, thereby allowing for optional religious resources and activities . However, the project has no obvious religious content overall: "with or without clear expression, the faith of religious partners is seen as a project asset". . --- The Types and Attributes of Legal Person Organizations --- Type Connotation Under the conditions of modern society, social organizations have generally become a "Legal Corporation", i.e., they obtain legal status through registration with government management departments. This is conducted so as to play a wide range of social functions. Religious social organizations in Western countries have been among the earliest and largest system of voluntary organization systems and are usually without special registration . The legitimacy of religious social service organizations in Hong Kong usually derives from their Ordinances, which were incorporated into the Hong Kong legal system . In China, similar to other non-religious social organizations , the five types of religious social organizations have gradually been integrated into a diversified legal status system. Furthermore, they are registered as associations, private non-enterprise units, foundations, "donor legal status", and public institutions . Religious private non-enterprise units are direct service institutions that include all kinds of nursing homes, service centers for the disabled, hospitals, etc. Certain larger religious social service organizations are usually registered or rebranded as foundations. The vast majority of Christian registered associations are the local CC and TSPM 4 ; their social service functions are realized in three ways, which is to say by advocating and coordinating the public welfare and the charitable activities of group members; directing and providing social services by directly subordinating social service departments or non-permanent professional committees ; and establishing or funding service organizations with a certain kind of subordinate relationship in order to provide services. The social service functions of religious activity sites are mainly embodied in carrying out public interest charitable activities through donations, materials, and related project operations; conducting community volunteer services through social ministry; and church reordering 5 , i.e., the provision of premises for third-party social services. The social service function of religious schools as non-profit institutions is mainly reflected in participating in various public welfare charitable activities or projects. Institutions of religious education have also begun to direct attention to social service professional education, such as the Shandong Theological Seminary, the Yunnan Theological Seminary, the Jiangsu Theological Seminary, etc., in order to offer social work or social service courses , as well as to plan to open social work professional directions . --- Case Examples There is no special setting for religious private non-enterprise units as a legal status in government religious department documents; furthermore, there is no continuous statistical data from government civil affairs departments. According to official statistics, in 2017, there were 400,000 registered private non-enterprise units nationwide, 115 of which were classified as "religious" . In 2020, 511,000 private non-enterprise units had been registered, of which there was no single datum on "religion". Most social service organizations run by religious circles are not registered as "religious" institutions but rather as "social services" and "health" private non-enterprise units. According to incomplete statistics, in mainland China by the end of 2019, there were 151 foundations with religious backgrounds , of which 15 were with Christian backgrounds and 5 were with Catholic backgrounds, thereby accounting for 13.2% of the total . The Amity Foundation and the Hebei Jinde Charities Foundation are two of the most typical examples of operational foundations. Seven social organizations with Christian backgrounds, including the Sichuan Luzhou Committee of Three-Self Patriotic Movement of the Protestant Churches, have set up a special fund with the Amity Foundation . As of August 2022, a total of 6157 religious social groups have been registered by China's civil affairs authorities, 2085 of which are Christian bodies, and 758 of which are Catholic bodies, accounting for 46.2% of all religious social bodies in China . When a religious association or church establishes a social service organization as the sponsor, the established service organization will be registered as a private non-enterprise unit. They become two separate entities in terms of legal status. In order to maintain the affiliation between the two and to embody the concept of Christian social service in the service organization, "the most common method is that the board of directors of the institution is appointed by the organizer with full power" . According to China's official regulations, religious venues are mainly divided into two levels: "churches" and "other fixed locations for conducting religious activities " . China currently possesses 144,000 religious venues registered with the government's religious administration departments, including around 60,000 Christian churches and meeting points, 98 Catholic dioceses, and more than 6000 churches and activity halls . More and more religious venues have begun to accept service organizations and programs that rely on church annex facilities to provide services. There are currently 22 institutions of Christian education and 12 institutions of Catholic education in China . They are divided into two levels: tertiary and secondary. The institutions of Christian education have long operated under the name of the sponsoring religious bodies of the organizer and do not have independent legal status. According to the Regulations on Religious Affairs , institutions of religious education established with approval may "apply for legal entities in accordance with relevant regulations". In terms of specific policy implementation paths, at present, they are currently registered as "public institutions" by local government institutions. This is while a small number of colleges and universities are registered as "private nonenterprises" . --- The Types and Attributes of Professional Institutions --- Type Connotation In the process of the development of various religious social service organizations, a specialized division of labor has emerged for different service settings, strategies, and target groups. Various professional factors, such as professionalization, industrialization, standardization and qualification certification, have continued to be strengthened. Social service organizations are divided by type of specialization into family and community services, i.e., child and youth services, elderly services, rehabilitation services, etc., according to professional type . They can also be divided into comprehensive social service organizations and specialized social service organizations; these divisions are in addition to local, national, and international service organizations, as well as large, medium, and small service organizations according to their geographical location and size. --- Case Examples At present, the largest comprehensive social service organizations of Christianity and Catholicism in China include the Amity Foundation, the Shanghai YMCA , the Hebei Jinde Charities Foundation 6 , the Catholic social service center of Xi'an diocese, etc., which all have formed subordinate departments or subinstitutions with different functions within the organization in order to provide services to various groups of people. The Amity Foundation has dozens of service departments, institutions, projects, and social enterprises and is currently the largest Christian service organization group in China . There are 86 full-time staff at the headquarters of the Amity Foundation, and nearly 1000 staff in subordinate institutions and projects . It is worth noting that there has been a clear emergence of certain social work service organizations founded by Christian believers, such as the Guangzhou Yiren Social Service Center, which mainly rely on the resource of local government projects and mainly engage in community-based social services. During the period of restoration of Christian social services, out of a need for the legality of services and foreign resource support, an extremely vulnerable group at that time-orphaned and disabled children-was chosen. Certain social service organizations with Catholic backgrounds have played the role of pacesetters, such as the Huiling , the Liming Family , Angel House , the Zhiguang Center , etc. According to a survey by the Ministry of Civil Affairs, there are 878 individual and private institutions that take in orphans and abandoned babies in China, of which 649 are with religious backgrounds, thereby accounting for 74% . Since 2013, the central and local governments have gradually revoked the qualifications of religious and non-religious social service organizations to participate in the adoption of orphaned and disabled children. Further, they have been replaced by child welfare institutions established by civil affairs departments at, or above, the county level . According to available statistics, there were 171 Christian church pension institutions in 2018 . Moreover, a total of 121 nursing homes were established in Catholic dioceses and parishes in China . There are more than 400 elderly care institutions that possess a religious character, with a total of about 29,000 beds . In regard to public information, certain hospitals or clinics with a Christian background , rehabilitation institutions for the disabled , institutions for drug rehabilitation or AIDS prevention, and treatment institutions , etc. can be found. According to available statistics, there are currently eight hospitals, ninety-nine clinics and ten disabled nurseries in various Catholic dioceses and parishes in China . The overseas services of Chinese Christian social service organizations are still in the initial stage of development. Certain well-known Chinese Christian social service organizations relied on overseas resources for the purposes of support and management guidance during the recovery period in the 1980s. Since 2013, the Amity Foundation has raised more money domestically than overseas. Further, it has launched the establishment of an office in Africa and an international office in Geneva. The foundation has also begun to join international organizations . In contrast, as a Christian institution, the Hong Kong Cedar Fund is mainly engaged in international and regional charity relief and development projects. It implements more than 80 poverty alleviation development and relief projects every year, with a financial outlay of HKD 22.372 million in 2021, reflecting its mission goal of "Building a Just and Loving World Together" . --- Practical Characteristics of Chinese Christian Social Service Organizations At present, the developing religious social service institutions and activities have achieved some obvious capacity enhancement but are characterized by certain "dispersed", "temporary", "arbitrary", and "small, scattered, and chaotic" on the other. --- Practical Characteristics as Faith Organizations Religious social service institutions and programs have characteristics, such as "ambiguity", "liquidity", and "diversity" , in specific belief attributes or types. These characteristics reflect the deformation of Sider and Unruh's American practice-based typological model in the context of Chinese politics and culture; it is also reflected in the structural tension faced by traditional religious service organizations and projects in the process of universal specialization and modernization. --- Ambiguity Many religious social service organizations were founded and managed, in actuality, by external religious entities . According to the registration template for the private non-enterprise units provided by government departments, there must be no clear statement of a religious mission in the organization's charter. Moreover, external religious entities usually participate in the management of institutions in their individual capacity and as members. In the early days of their establishment and on their institutional websites, a considerable number of religious social service organizations placed relative emphasis on the "Evangelical Mission", the preferred the value of "Glorifying God", and individuals being responsible for the consequences of their actions; however, in the process of promoting and implementing service projects, the strategy of avoiding the expression of religious beliefs is generally adopted. Judging from the practice since the reconstruction of religious social services, many service organizations and service projects tend to be religiously neutral. This trend is driven by a variety of factors-i.e., the dependence on public subsidies, social fundraising strategies, and the trend towards service specialization. Certain religious organizations and projects are sensitive to different pressures, influences, and patterns of institutional change. They may accept restrictions on the religious character of a particular project without changing the religious nature of the organization as a whole. --- Liquidity The religious identity and expression of service providers may be separated or conflicted with the non-religious or different religious identities and the expression of the service recipients. As such, certain service institutions have changed their evangelical orientation to a professional services or public welfare charity positioning, as well as accepting the supervision and accountability of the public, including believers . In the abovementioned cases of religious faith, the Shouguang Faith Hope Love Elderly Home began to transform from a "faith-centered institution" to a "faith-affiliated institution", after 2018. The Jinan Faith Hope Love Disabled People Service Center for the Disabled was originally founded by religious individuals. Further, the previous council members and ordinary employees did not have a single faith background. However, after the current institution came under the supervision of the provincial CC and TSPM, it changed from a social service organization with a faith-based focus to a faith-centered social service organization. --- Diversity There are a variety of differences between the various religious social service organizations and the programs they operate, such as: they may operate a program with different religious characteristics from the organization. For example, a faith-centered organization may run a program that works with the secular community or a secular organization may accept a service program that is of a religious nature; an organization can run several projects that fall into different faith attribute categories. Differences in the type of belief mean that social services, including spiritual services, can be applied to diverse needs. Social service organizations with religious backgrounds usually provide specific and diverse forms of spiritual services, which are beneficial to different degrees in order to enhance the "spiritual well-being" of specific service recipients, i.e., religious, social, and cultural capital brings a sense of belonging and security to clients with the same faith background . Similarly, certain secular service institutions provide places of worship for service recipients with different religious beliefs, thereby reflecting unique service advantages. --- Practical Characteristics as Legal Person Organizations During the harmonious society period of the Hu Jintao and Wen Jiabao governments, a nationwide upsurge of public volunteer activities was triggered by the Wenchuan earthquake disaster in 2008. The legal status registration policy for social organizations was loosened, and the number of social service organizations with various religious backgrounds that were registered increased. Religious social service organizations with legal status can obtain independent civil subject status, conduct civil activities autonomously, and also are subject to more restrictions from state institutions. --- The Improved and Still Limited Capacity The "Social Service Department" of the Chinese CCC/TSPM and the "Charity and Social Service Committee" of the Chinese Catholic Patriotic Association have always served an important guiding and exemplary role in the advocating for and implementing of social services; their work development goals are largely guided and restricted by various government policies . The members of the Shandong CC/TSPM have enhanced the organizational functions of the Provincial CC/TSPM and thus strengthened the capacity of direct service institutions by joining the Council of Jinan Faith Hope Love Disabled People Service Center for the Disabled. As the person in charge of the latter stated, "the provincial CC/TSPM have given us more resources to coordinate, including the church members' donation, public fund raising, training and learning opportunities" . However, according to the search statistics of the official websites of the CC/TSPM and the Catholic One Mission in 31 different provinces in China, 13 provincial-CC/TSPM had created official websites in July 2022 -of which Shandong, Zhejiang, and Sichuan provinces were those who had only set up part-time professional committees of social services. When compared with the search results in January 2020, there is little change 7 . When looking at the current operation of more than ten Christian foundations, the vast majority are operational and non-public funds, with many limitations in terms of service efficiency and fund-raising capacity. In general, in recent years, religious public welfare charity has been affected by objective environmental factors, as well as a lack of major breakthroughs and innovations in terms of scale, form, etc. . --- The Transition of Internal Management System from the Traditional Rule of the People to the Modern Rule of Law Certain religious social service organizations are partly initiated and sponsored by churches, while many are run by individual Christians either independently or in partnership. According to the authors' field research on 12 social service organizations with Christian backgrounds, such as the economic organizations in the early stage of marketization, many social service organizations rely heavily on the personal ambition, cognition, and social relationship resources of the founders and responsible persons, who often show the following characteristics: a reliance on the personal authority of the first generation of founders and the operation process being highly unstable ; limited staff, often one employee is responsible for the work of several positions or even several departments, without a clear job responsibility and process system; and in regard to institutions founded by individual Catholics, it is a common phenomenon for key positions to be held by family members. According to certain statistics, among the 151 foundations with religious backgrounds mentioned in China in 2019, only 24 could be understood to possess a clear organizational structure and department composition . As such, in this vein, the degree of transition from humanistic to institutionalized management is a sign of maturity in the management of social service organizations. --- Multiple Restrictions from a Localized Dual Management System of the Registration and Operation These restrictions are manifested in four aspects: Restrictions on territoriality. That is, social service organizations cannot operate across regions and can only be managed by government departments and, thus, conduct services in their local areas . The Huiling Service Group has formed a cross-regional chain operation, but under the territorial management mode, it cannot be named "China Huiling Headquarters" and, thus, cannot officially implement group operation management; restrictions on the business supervisor. Social organizations need to find a local government functional department or group organization to be the professional supervisory unit. Then, they can apply for relevant registration management at the civil affairs department. Non-profit social organizations do not enjoy the market-oriented openness of for-profit organizations and the right to have no professional supervisory unit. The government once stipulated that the four types of social organizations did not require direct registration by the competent business authorities . However, this has not resulted in any significant practical improvements; restrictions on civil registration and annual inspection. Organizations require applying for and completing the registration in accordance with the document content template prescribed by the registration department. In the recent annual inspection of social organizations, the criterion of "party building" has been added, and institutions without party members, workers, or dispatched party building work instructors cannot pass the annual inspection; and restrictions on the exchange with overseas institutions and funds. The government has imposed strict regulations on the amount of overseas funds and the movement of personnel , effectively cutting off the opportunities for Chinese religious service organizations to engage in exchange with overseas professionals and to receive foreign donations. At the same time, it is difficult for religious social service organizations to form or participate in national or regional professional alliances, and they have long been isolated from each other and lack cooperation. --- Practical Characteristics as Professional Organizations The practical characteristics of the trend toward specialization of Christian service organizations in the new era are mainly manifested in the following aspects: --- The Transformation from Volunteering to a Professional Service In the early days of reconstruction, religious social service providers were generally not paid a formal salary and received only a small subsistence allowance. At present, this situation of non-professional employment has changed, and the staff of religious social service institutions generally enjoy wage remuneration and social insurance: "When we started working in 2004, wages were very low and there was no social insurance. But the departure of a very attentive young colleague had a great impact on us and led to our transformation; her parents vehemently opposed her doing the job and forced her to leave; I am also reflecting that if you continue to committed to your work based solely on your enthusiasm for your work, it seems noble, but in fact it can't last and it's not fair . . . . From 2009, we started to raise wages as much as possible and pay social security" . The latest government regulations require clergy to "participate in social security and enjoy relevant rights in accordance with the law" . However, according to the authors' field research data, the current salary standards of the staff of these service institutions are generally lower than the official average social wage level, and there are fewer types of social security insurance paid by institutions for them. 3.3.2. The Transformation from "Religious Charity" to "Social Welfare" Service risks, civil rights, and third-party government commissions in modern society have had many countervailing effects on the professionalism of religious services. In the Modern Litigious Society, the service of religious affiliates is subject to many legal constraints . According to a local survey, most of the social service activities of church bodies in a certain area are organized and institutionalized as "modern charity" activities, and the beneficiaries are more concerned with the general public . The Shanghai Huaai Community Service Management Center under the Shanghai YMCA and the YWCA have commissioned the management of 10 community service organizations , generating a brand effect of professional management of non-profit institutions. Service provision is separated from faith transmission-the service process generally does not "bundle" with the function of faith transmission function. When resolving differences in faith with clients, they can consciously take the client as the primary starting point and respect the principle of self-determination of the client. --- The Transformations Led by Process Management and Quality Evidence Increasingly, religious service organizations are beginning to focus on the professional qualifications of management and service personnel rather than faith affiliation. They are transforming to specialization in terms of concepts, procedures, standards, etc., and are gradually introducing professional social workers and even setting up a social work department. If the government department grades our institutions, we also need this social work certificate. With professionalism, there is a vision and a pattern. If we can improve the professionalism of our service staff, we may provide more professional services. Faith is what lifts us up on a spiritual level, that is, to focus on a belief. For example, I do these things, serve a child who is very dirty , the Lord Jesus can give us a motivation, but I want to serve, only motivation, if I have no way, I don't know how to put it into practice with this child, if we feed, we have the motivation to be willing to feed him, he spews out food, we don't dislike him, but we don't know, what kind of skills are better to serve him, how to better speak for her, how to better equip it with assistive devices, so this all requires professional knowledge. --- Policy Issues of Chinese Christian Social Service Organizations --- Regarding Faith Organizations Policy tools-also referred to as policy instruments, "governing instruments" and the "tools of government"-are the techniques of governing that help define and achieve policy goals. From the perspective of public policy, it is necessary to establish the guiding principle of classifying operations according to their faith attributes and practical characteristics of religious social service organizations. This is, in addition, to the need to promote social development and change by formulating and using appropriate and diversified policy tools . --- A More Precise Definition of the Legality and Boundaries of Religious Activities The policy tools of Western academia do not usually include the tools of policy ideas or principles. Yet, in China's policy process, it is necessary to establish a universal concept tool first. Respecting the constitutional right to "freedom of religious faith" and other civil rights implies recognition of the right of religious organizations to engage in social services. The government departments and the professional community need to distinguish between the following two provisions: "No organization or individual shall make use of public welfare and charitable activities to propagate religion" and "No religion shall be spread in charitable activities" . The former, as the latest legal provision, has a clearer meaning, i.e., it can be specifically interpreted as such that in public welfare and charitable activities, service users without religious beliefs or other religious beliefs are not allowed to attach specific religious activities or convert expectations, rather than being prohibited from other signs and activities without religious and cultural sensitivity, or from service users' related faith activities. Cultural tolerance among secular and interreligious people is promoted through the implementation of "freedom of religious faith". Chinese mainland government administration methods can be modeled upon the HKSAR Social Welfare Department's "Service Performance Monitoring" metric. That is to say, through such documents and procedures, such as the Funding and Service Agreement, Service Quality Standards and Service Quality Assessment , this can be achieved. This is further conducted by restricting or regulating the service projects commissioned or funded by government departments to meet the needs of the public, as well as to avoid or prevent forced faith transmission and religious service discrimination. 4.1.2. Recognition of the Important Role and Function of Religious Service Resources in the Welfare Provision of Specific Groups of People and Communities Religious social services play an irreplaceable role and function in safeguarding the objective and subjective well-being of believers. The extent to which social services or public interest charities can retain their faith-based attributes should respect their industry codes of practice and give due consideration to the wishes and needs of the target population they are intended to serve. In certain districts and counties where the elderly believers of Christianity are relatively concentrated, Christian homes for the elderly have developed rapidly, which reflects the internal norms and responsiveness, self-help, and resource mobilization ability of the religious social service organizations in meeting the specific social needs of their adherents. In the context of policy discourse, protecting freedom of faith and encouraging interfaith exchanges are complementary policy tools. --- Provision of Effective Public Support According to the Principle of Classification Operation The HKSAR Social Welfare Department recognizes the legitimacy and rationality of religious social service organizations and provides fixed public funding to many religious service organizations . There are policy tools that need to be developed for policy issues that specifically distinguish the differences or plurality gradients of the faith-based characteristics of Christian social service organizations, as well as make appropriate distinctions in policy implementation and project cooperation . There is also a need to promote the establishment of public information platforms in order to encourage and supervise religious social service organizations rather than administrative information shielding . Further, there is a need for relaxing restrictions on normal international exchanges 8 , thereby strengthening the capacity of religious social service organizations. --- Regarding Legal Person Organizations NGOs are independent organizations with civil rights and bear civil obligations in accordance with the law. This is achieved through their autonomy and self-governance, as well as through the realities and problems that have come forward with many new demands for future policy objectives, issues, texts, and implementation. 4.2.1. Implementing an "Equalization" Policy for Religious Public Welfare Charity Activities under the Framework of "Partnership" Judging from Christian social resources and the experience of developed countries, the number and proportion of social service organizations with a Christian background in China has greater intrinsic development potential. The "equalization" policy measures to encourage and support public welfare and philanthropy in religious circles imply a multiple "partnership" which can strengthen the capacity building at a higher management level through the establishment of social service departments or special committees under the CCC/TSPM and CCPA/BCCCC. In regard to religious bodies such as the YMCA , which have been transformed into professional social service organizations, the rehabilitation or rebuilding of these organizations in major cities should be ramped up in due course. More government subsidies should be provided to religious service organizations and projects. At the same time, the localized dual registration process requires further reform such that religious non-profit organizations can enjoy more equal rights in the context of their operation . --- Policies and Measures for Optimizing and Improving the Internal Governance of Religious Service Organizations Requires More Analysis In order to enhance the construction of Christian social service organizations in China, it is necessary to coordinate the links between direct government administration with self-management via legal entities. Furthermore, there is a need to improve the internal governance structure of various legal entities through research and development contracts, information services, annual inspections of competent units, etc. In the policy document , which encourages and regulates religious circles to engage in public interest charitable activities, there are six departments that have proposed a series of goals for improving organizational mechanisms. These mechanisms include: cultivating a team of specialized talents, formulating and improving work plans, reporting systems, evaluation systems, information disclosure systems, and property management systems. These all improve the ability and level of self-management, self-education, self-monitoring, self-service, and self-improvement, as well as accepting guidance, management, supervision, and inspection from the relevant departments. Although it is also mentioned to accept "supervision from all sectors of society", the question of how to solve the problem of shortcomings of social supervision commonly faced by government departments and social organizations through the rule of law will undoubtedly require changes in China's political and social system. --- Improving the Level of Rule of Law in the Categorical Management of Legal Entities At present, China's religious social service organizations, foundations, and social organizations have been incorporated into the official legal status system comprising three types of social organizations. Further, the initiative of the government department to grant religious activity sites the status of "donor legal persons" has not yet been realized. There is a kind of dual-track framework between the official legal status system of the three types of social organizations and the nascent "donor legal status". Therefore, certain legal experts have proposed that a "comprehensive religious legal status system"-consisting of three types of legal status, namely religious bodies, institutions of religious education, and religious venues-can be established under laws and regulations, such as the Regulations on Religious Affairs, the General Principles of the Civil Law, and the General Provisions of the Civil Law . This could be in addition to another option, which is creating a separate type of religious legal person under "non-profit legal status" in the General Provisions of the Civil Law, by including religious associations, religious activity sites, and religious schools, as well as all religious organizations that are recognized as religious legal persons . By setting up a separate religious legal entity in order to participate in welfare provision, the principles of the "separation of church and state" and "categorical operation" can undoubtedly be optimized. --- Regarding Professional Organizations How can policy formulation adapt to the trend of development reform and be more effective in achieving the desired results in the process of policy implementation? The abovementioned service practices can provide certain expansive and innovative insights. --- Recognition of the Professional Contributions of Christian Social Service Institutions Support policies for religious social services that need to be based not only on the affirmation of their faith foundations and historical traditions but also on the recognition of their professional contributions and technical value. In terms of the appropriate social division of labor, the emergence of the Christian social service organization system and professionalization has promoted the professional development of the entire human service cause. In terms of service areas, clinical applications, and professional methods, Christian professionals have input valuable knowledge into the mentally disabled, drug rehabilitation, and community service. Further, this is in addition to hospice and palliative care staffs' "self-awaken" ability and their awareness of the integrity of people and services. When accounting for the Hong Kong Social Welfare Department , as an example, there are about 800,000 Christians and 400,000 Catholics. Furthermore, Christian and Catholic groups have run a large number of different types of service organizations, undertaking more than 60% of social welfare services 9 , of which 60% of the social welfare subsidized by the Social Welfare Department are also provided by churches or church institutions in Hong Kong . Therefore, in the policy guidance of government departments, recognizing the practical methods and clinical value of Christian social service organizations, as well as supporting religious social service agencies to hire more professional social workers by setting industry standards and providing job subsidies, will be conducive for the purposes of further tapping into the utilization potential of these resources. --- Expanding the Policy Space for Industry Management The trend of "modern governance" calls for, on the one hand, a greater expansion of the social participation of religious social service organizations by opening up policy space to promote religious circles in order to establish their own coordination and communication mechanisms . On the other hand, there needs to be a line drawn between direct government administration and self-management by industry associations. The Hong Kong Council of Social Service provides a good example in this regard. According to the latest statistics in November 2022, the HKCSS has a total of 503 members, covering more than 3000 service units. Further, there are 154 organizations that indicated a "religious background" in the member profile form, of which there were 142 institutions with Christian or Catholic backgrounds 10 . Hong Kong Christian social service organizations recognize and fulfill the unified mission of the Hong Kong Council of Social Service, which undoubtedly has enhanced the social accountability of various types of welfare service organizations, promoted better religious social welfare services, and facilitated the ability of institutions to serve society. --- Exploring Inclusive Spiritual Services In the late 20th century, developed countries developed spiritual social work , which raised the level of professional services for those in need. Religious and non-religious spiritual services have also become more popular in China with the growth of various service organizations , and they have continued to develop and embrace each other. The important role of religious spiritual services in regard to terminal care for the sick, hospice care, family adoption, drug rehabilitation, reassurance in the event of the death of relatives and friends, and relief from disasters and pains is widely recognized by society as good . Advancing the professionalization of social services and advocating for culturally or spiritually sensitive services requires promoting compatibility rather than segregation between religious and non-religious services. Based on the development experience of developed countries and regions, professional communities and policymakers need to jointly explore and construct service policies that can conform to and promote professional and culturally sensitive services, as well as facilitate certain innovative and inclusive spiritual social services through government purchases, grants funds, supervision and evaluation, and international exchanges. --- Update of Policy Toolbox and Policy Matrix In this paper, various policy tools that can be used to address the multiple legitimate rights, interests, and types of attributes of Christian social service organizations are proposed. In particular, in view of the lack of ideas and misalignment in China's policy system, universal principles, such as "freedom of faith", "partnership", and "modern governance", are included in the subcategories of the "policy tools" box, thereby serving as the "litmus test" for policy modernity. In a literal sense, these conceptual tools have been incorporated into the official policy discourse, but they need to be reinterpreted and manipulated in the light of universal concepts and situational conditions in order to advance the level of policy formulation and implementation. Based on Salamon's analysis framework on the attributes of policy tools , policy tools can be further matrixed -according to the type, characteristics, and direction of development of target objects, various policy tools are provided with different degrees of implementation methods, thereby aiming to promote the scientific and legal level of policy governance measures. --- Summary and Discussion Chinese Christian social service organizations are in the comprehensive environment of national religious policies, their own religious traditions, and social welfare systems; further, there are certain types of differences in their legal status types, faith attributes, and professional functions. These typological differences define their organizational mission, structural functions, and performance standards. The pluralistic and transitional characteristic of Christian social service organizations in the process of practice is manifested in the imbalance of their internal and external development. Certain newly established Christian service organizations, who are in the teething stage of dealing with the relationship between the evangelization mission and universal responsibility, do not understand the broad connotation of cultural sensitivity and tend to integrate social service with the transmission of faith. These organizations are in need of further professional growth. A Christian community organization or activity site needs to maintain corresponding boundaries in the scope and form of its social services. It requires those service items suitable for the legal person organization of the community or place of activity to be developed and to form a reasonable division of labor with professional service institutions. The practices in developed countries and regions show that most service organizations with Christian backgrounds, in terms of specialization and globalization, are similar in organizational structure and mode of operation to secular social service organizations. For example, services are provided by professionally qualified people who usually do not share a common religious faith or affiliation with the employing agency. A growing number of Christian professional service institutions in China are also beginning to converge and cooperate with non-religious service institutions in terms of industry codes of practice, service philosophies, and clinical models, especially in the area of client-centered, culturally sensitive services, thereby forming a complex symbiosis and interlocking relationship with the non-religious professional service system. When cooperating with various types of religious legal person organizations to conduct service projects and allocate service resources, government departments need to identify the functional expertise and practical capability of different legal person organizations. Certain service organizations with strong Christian faith characteristics have an irreplaceable role in meeting the mind well-being of the Christian community or in using religious spiritual services and thus require to be provided with specific policy space. Under new social conditions, however, through the full implementation of the "equalization" support and encouragement policy, Christian social service organizations can be promoted to have full discretion in utilizing their traditional advantages in human services, such that they can truly become one of the organizational subjects of welfare services and collaborative governance. For the time being, the above policy issues raised in this study are difficult to incorporate into present China's highly regulated religious policy process. However, the accumulation of academic knowledge of the types and attributes of relevant policy instruments will help to enhance the social potential for future policy changes. There are also a few registered religious research associations or societies, such as the Xinde Cultural Society of Hebei Province. 5 This refers to the rearrangement and adjustment of religious buildings in order to adapt to the changes in religious activities. These activities mainly involve the introduction of secular services and cultural purposes in order to increase the utilization of religious facilities while retaining their main purpose as places of worship. See "Church reordering" . 6 These three institutions are foundations or associations according to their legal registration status but still mainly operate variable social service projects rather than supply fund support or member services. As such, they are exemplified as comprehensive social service institutions according to their institutional functions. The Regulations on Religious Affairs before the amendment, stipulated that "national religious organizations can select and accept religious students according to their own religious needs". The revised Regulations on Religious Affairs cancels the right of exchange in overseas students of the above religious groups, and further stipulates that "religious institutions should go through the relevant procedures at the local foreign affairs administration department after obtaining the consent of the religious affairs department of the State Council to employ foreign professionals". 9 The Christian community in Hong Kong operates and manages 7 hospitals, 17 clinics, and about 110 social welfare organizations. These social welfare organizations include 100 family and youth centers, 11 children's homes, 170 centers and homes for the elderly, and 59 rehabilitation centers for drug addicts or people with disabilities. Caritas, Hong Kong is the organization that coordinates the various social welfare services of the Catholic Diocese of Hong Kong; moreover, the medical and social service organizations run by the Catholic Church include: 6 hospitals, 13 clinics, 41 social and family service centers, 23 hostels, 19 homes for the aged, 30 rehabilitation service centers, and a number of self-help clubs and associations . 10 The statistics were completed with the assistance of Qi Shuaihua, Shao Yingxue and Liu Qi, MSW students of the Department of Social Work, Shandong University. These data are consistent with a statistical result obtained in 1999: 28.3% of the members of the Hong Kong Federation of Social Services are service organizations with Christian backgrounds . 11 The "policy matrix" in this paper incorporates only the first three of the four dimensions of Salamon's policy instrument attributes. These four dimensions are the degree of coerciveness ; degree of directness ; degree of autonomy ; and degree of visibility . --- Data Availability Statement: The data that support the findings of this study are available from the corresponding authors, upon reasonable request. --- Author Contributions: Conceptualization, J.G.; Methodology, J.G.; Formal analysis, J.G.; Investigation, J.G., X.S., and X.W.; Resources, X.S. and X.W.; Writing-original draft, J.G.; Writing-review and editing, X.S. and X.W. All authors have read and agreed to the published version of the manuscript. --- --- Notes 1 According to the search conducted in February 2020, there were 41 social service organizations with the word "Christian" in their names. Of these, 37 were in the original list of 51 civil society organizations, 14 were withdrawn or changed via association registration, and 4 new organizations were added. 2 Before the 1950s, 32 urban YMCA centers were established in mainland China . So far, 10 urban YMCA have been restored.
This paper explores the typological attributes, practical characteristics, and policy connotations of Christian social service organizations in present China. This is achieved from the perspectives of religion, public administration, social work, and history. Data collection and analysis are based on the literature research and field research methods. The main points are as follows: (1) Christian social service organizations are simultaneously faith-based organizations, legal-person organizations, and professional organizations. These different types of characteristics put forward different requirements for their service functions and performance standards. It is necessary to understand their corresponding boundaries in theory and coordinate or optimize their corresponding functions in the system; (2) Christian social service organizations present the characteristics of pluralism and transition in the practice process, as well as form complex symbiosis and embedded relationships with non-religious professional service systems. Further, they have begun to reach a consensus on industry codes of practice, service concepts, and clinical models, especially in regard to the culturally sensitive service centered on the clients; and (3) the triple-type attributes of Christian social service organizations require government departments and professional circles to direct more attention to the "matrix" of policy tools-in other words, formulate more discerning and diverse policy measures in line with policy objectives, as well as strengthen the legalization of the policy implementation mechanism and the level of collaborative governance of religious social service organizations.
INTRODUCTION The ideas presented in this text are synthesized in reflections that the authors have been developing in recent years, based on collective theoretical discussions and practical experience, experienced by professors and researchers of the Center for Integrated Research in Public Health in the Department of Health of the Feira de Santana State University and other partner institutions, involving groups and researchers in nursing and public health. This article seeks to consider the production of comprehensive health care, which necessarily includes reflection on the Brazilian Unified Health System . The numerous discussions on this subject have spurred challenges to conceptions of models of health care, causing tensions that propel further reforms in ways of thinking and doing health care in the daily services and practices in the SUS. That is, to consider comprehensiveness as a guiding tenet of the organization of care, the network of care and policies, implies dialogue and democratic interaction of the subjects involved in the construction of responses capable of considering the differences expressed in the demands in health care . In this sense, the practices learned during the process of care production would have to address the needs of users with tools that go beyond implementation of technical, scientifically-based knowledge, but which are also drawn from political, organizational and symbolic fields. Specifically, this means putting at the center of the discussion the way care has been outlined in the daily services that can respond, in large part, for the low impact of the actions produced and the dissatisfaction of users in relation to the system. One of the weaknesses of these actions is the structuring of the health care system, still focused on procedures, with a core technology that values biomedical knowledge and practices as guiding principles in the production of health care actions. Health care services need to assume one of its most important tenets: to promote intervention focused on the user that is capable of enabling autonomy of individuals in their lifestyles, without losing sight of the dimension of care that should be present in every health care action. It is through dialogue and negotiation, marked by intersubjectivity between worker and user, that it is possible to find ways to meet the needs set forth at this meeting. That said, it is important to reflect on the operating mode of health care practices, and its interfaces with the SUS system, as well as the purpose of these to meet the needs of system users. Such practices are social and historical, and recognize the nuclei of specific and interconnected skills operating in individual and collective care, demarcated by health care as the possibility of more comprehensive and better quality health care work. In this perspective, the powers and questions that permeate the practices are highlighted, with openness to creativity and innovation. Workers need to step aside and let of their centrality, guided by systematic and univocal knowledge. Workers need to facilitate, and must produce encounters among people for the passage of flows, affections and desires in an intersubjective manner . Management practice is inserted as part of this care, with actions of coordination, supervision, evaluation and educational practice, which is produced in acts, orientation processes, dialogue and negotiation among staff, users and families. Thus, the incorporation of comprehensive practice is one of the challenges in building a universal and equitable health care model, considering that the work of nursing in primary care has two dimensions: care and management. The first, focused on individual and public care, and the second, on actions of coordination and supervision of care, are both prevalent in nursing, constituting a human work process in the field of health, which is first and foremost the production and reproduction of social humans, historically determined by producing goods and services geared to health needs . However, when taking the practice of nursing as the object of analysis, its centrality in everyday dynamics of health care , through activities of promotion, prevention of disease, recovery and rehabilitation of health, indicates interfaces with other knowledge and practices. Nursing is responsible for the care, comfort, embracement and well-being of patients, by providing care and coordinating other sectors for the provision of care, and promoting patient autonomy through health education . In this perspective, the process of health care education would have to recognize the coexistence of scientific knowledge and applied science with life standardization strategies, thereby placing in health care practice possibilities of aligning different modes of living and lifestyles in processes of micropolitical meetings between health care workers and users , encouraging freedom and the possibility of exercising creative capacity for problem solving in the exercise of care. What must be emphasized here concerns the relationships built by the subjects in action, to produce care that establishes connections with different knowledge, practices and people. Thus, to discuss comprehensive health care requires critical reflection on the political, organizational and technical dimensions that guide it. The political dimension involves access to health care services in their complexity and polysemy ; the organizational and technical dimensions are portrayed in meetings, in distinct spaces of the care network, by incorporating the relational dimensions to the clinical, and enable specialist orientation and the consolidation of lines of care for the resolution of real and symbolic health problems/needs . The production in the field of nursing lacks reflections that address dimensions of analysis based on the fields above, considering that studies in this direction were not identified. This production concerns specific clippings or the process of care related to the organization of work in health and nursing . The aim of this study was to propose analytical dimensions for the production of comprehensive care in the SUS network, emphasizing the dilemmas and challenges of nursing. The dimensions shown in Table 1 provide the potential to develop studies for critical and reflective analysis of the object of study. Rev Bras Enferm. 2015 Mar-Apr;68:304-9. --- ANALYSIS DIMENSIONS OF THE PRODUCTION OF COMPREHENSIVE HEALTH CARE The dimensions of analysis are summarized in Table 1: access to health care services, embracement, bonding, lines of care, accountability and responsiveness. The aim is to establish connections in the organizational dynamics of the network, in its political and technical aspects. The first dimension is political, and considers access to health care services as a category of analysis of health care policies, relating it to living conditions, income and education, and encompassing accessibility to services that goes beyond the geographical. It also involves other issues, including economic , cultural , and organizational , in accordance with the requirements of the population . Access is a complex and fundamental theme, present in the international literature , concealed by economic difficulties and barriers related to lines to schedule consultations and medical care. Whereas 80% of the health care needs of the population can be resolved in primary health care , the organization of care at this level is pressing, involving the location of the unit close to the population it serves, timetables and days when it is open to treat people, the degree of tolerance for unscheduled consultations, and how much the population perceives the convenience of these aspects of access . In the national context , access is discussed in different perspectives, involving the availability of health care resources and the capacity of the public network to produce services that respond to the needs of the population. In this sense, health care workers recognize the limitations of access to the Family Health Strategy and the strengths . Thus, having access to health care services not only means an entry of the users to the primary health or hospital network, but also seeking care that attends to their health care needs, transforming the reality . Quality access to health care services improves peoples' lives, considering that by obtaining access to services, users have their demands and needs met. Inequalities of access are one of the main challenges to be overcome so that the Brazilian public health care system is responsive, in accordance with its established principles and guiding directives. In this sense, the production of comprehensive care should be designed and implemented according to socially determined needs, in addition to intervening in reality, in an articulate manner in which accountability is shared . Embracement is the second dimension of analysis in the formation of a new practice, valuing communication of the health care team with users, as a space for attention and active listening, giving appropriate responses to each person during the entire process in health care units . Embracement provides a range of services needed, as well as full accountability for the health problems of a collectivity, by means of available technologies, valuing light technologies and recognizing their relevance in health care . Bonding is the third dimension, and can enable the expansion of relational bonds, developing affection and increasing the potential of the therapeutic process. In this sense, shared accountability is paramount, that is, the ability to perceive singularities and invest in individual and collective capacity to make choices . Table 1 -Dimensions of analysis of the production of comprehensive health care --- Dimension of analysis Definition Access to health care services This dimension crosscuts all health care practices, and involves aspects related to practice and the organization of care, as well as political, economic, social and symbolic aspects, from access at the entrance to exit from the health care network . --- Embracement This involves establishing relationships with the model of health care and quality of services, and accountability as product and producer of care. After all, health care professionals who actively coparticipate in the health problems of people, listen and talk, establish accountability in two ways, providing care -and inexorably establish embracement and vice versa . --- Bonding Bonding enables exchange of knowledge between the technical and the popular, the scientific and empirical, the objective and subjective, converging them to perform therapeutic acts shaped by the subtleties of each public and person, delineating other meanings for comprehensive health care . Lines of care Organization of production processes of care in the network from various fields of knowledge and practice, at the individual and collective level, in the construction of a comprehensive and effective health care model. --- Accountability Accountability in the act of caring for people, in a movement aimed at expanding the therapeutic act, valuing the uniqueness of each service user, in a manner that is shared among staff, users, families and managers of the system. --- Responsiveness Responsiveness to demands according to individual and collective needs, whether at the entrance or other levels of the system. Thus, bonding must be inherent to teamwork, in order to solidify shared and pleasurable work, placing the user at the center of the process of producing practices. The fourth dimension is cross-cut by lines of health care, conceived as institutional arrangements and ways of managing micropolitics of a particular service or institution, so as to result in work based on solidarity and responsiveness on the part of all health care workers, to meet the needs of users . Work would have to be integrated and not fragmented, gathering in the production chain of care a cast of programmatic actions and services the unit offers, and referrals to specialized consultations , tertiary services, domiciliary hospitalization and other community services . Without breaking the isolation, without the production of new technologies for health care, and without putting the construction of lines of care on the agenda of management of the system , it will be difficult to break with hegemonic concepts and practices of health care, or to produce quality health care that meets the expectations of users. All these elements are indispensable to the policy of consolidating the SUS. Accountability, the fifth dimension of analysis, seeks to face the challenges of the health-disease process, incorporating into the therapeutic act the appreciation of the other, concern with care and respect for the worldview of each person. Therefore, accountability is to aid the strategies of promotion, prevention, cure and rehabilitation of users. Responsiveness goes far beyond the technical effect that health care professionals can achieve, and simultaneously involves practical success, namely, the appropriate response so that users and communities understand what life and health mean in their contexts. In this perspective, it involves issues that relate not only to the organization of care, but also professional conduct and the relationships established between health care teams and users . Thus, responsiveness is closely related to the act of embracement, since the identification of health care needs involves the incorporation of the diversity of people who demand the health service for the production of care. Tolerance of differences is fundamental in the relationship between professional health workers and users, and, therefore, the practice of listening needs to be developed considering the situational singularity of each user. This will make it possible to expand identification of needs and potentials for practice guided by comprehensiveness. The proposed dimensions refer to meeting health care needs, according to the precepts of the SUS, since they seek to discuss the organization of practices as part of an articulated health care system, resulting in greater satisfaction of workers and users, in relational dynamics, without losing sight of political and technical aspects which underpin the health care system. --- DILEMMAS AND CHALLENGES OF NURSING Health care, in particular nursing, as one of the professions responsible for care of individuals and the public, is redefining its knowledge and practices, seeking to prioritize the discussion of meanings related to the construction of subjects to solidify a new health care model. When cutting to the cores of nursing skills , dilemmas are present regarding practice. On the one hand, intervention is focused on managing therapy by nursing staff, with the tensions inherent in the hierarchical process and relationships between people and, on the other hand, requires articulation with the various nuclei of knowledge and practices to exercise the role of a collective worker with a comprehensive and interdisciplinary character. When the institutionalization of nursing is recovered, a retreat of intervention in the domestic, private and family sphere is observed, to a movement of insertion in the public space, even in the 19th century, with the re-structuring of health care systems and the resizing of practices in the national context, with a predominance in the global scenario, still of private acts geared to individual care . This panorama is based on scientific rationality, aligned with technologies that emerge from the productive processes that lead to capitalist society. However, due to the fact that nursing adopts care as the essence of its work, it cannot dispense with intersubjective and humanized relationships that permeate encounters with users and families in the daily practice of health care services. This, without losing sight of other important elements such as beliefs, gender relations, religion and ethics, among others, seeking interface with scientific rationale. That is, humanized and therapeutic encounters are needed, articulated by teamwork projects. Thus, care can be placed as a symbol of the essence of the field of health care, that should be a place that cares for individuals and the public, in the act of its production and how care is performed, directed, which, after all, is the purpose, if they are going to meet the world of the users with receptivity of actions and services provided. In this sense, one of the dilemmas experienced by nursing resides in how care is performed on a daily basis: fragmented, focused on specific aggravations and centered on health care professionals. One of the main challenges is the construction of new therapeutic bases to ensure comprehensive care, as opposed to a technical model that is individualized and focused on disease, biological knowledge and individual professional action. It aims to achieve health lastly, which extrapolates the normative horizon established by biomedicine, of a techno-scientific character, in which it relates only to morphofunctional normality. Health is expressed as a value of contrafact and intersubjective character that will never be complete, because it depends on the relentless and continuous search for ideas of well-being while one is alive, i.e., the pursuit of health is oriented by a kind of normative horizon, which can be called the "happiness project," that will always be unfinished and under construction . The complexity of the challenge is to assume the production of comprehensive care as inherent to health professions and as a consequence of nursing practices, which should align with the principle of comprehensiveness, defended in the premise of the SUS. This seems to be one of the great dilemmas: its precise definition and its operationalization. However, these dilemmas do not reduce its importance. The legitimacy in producing comprehensive care constitutes a fundamental mechanism to strengthen the other two principles, universality and equity. For this purpose, it is necessary to think in two directions: a policy which extends the commitment of governments and managers of the system in the formulation of guidelines that enable the redesign of financing and the model of management and health care. In this perspective, the increase in supply of services would supercede bureaucratic and productivist criteria by overcoming the repressed demand for health care services at the same time when the intermunicipal agreement would be resignified with other levels of procurement; another technique, which seeks to revitalize the capacity of health care workers in defense of a health care model that values quality of care in a manner that is articulate, interactive, interdisciplinary and committed to the social determination of the health-disease process of people who require services in the SUS network. The idea of connectivity is defended, valuing the specific knowledge of each profession, while establishing commitments to collective work. In summary, to provide comprehensive nursing care, it is necessary to recover the dimensions mentioned earlier: embracement, bonding, accountability and responsiveness to the demands of users and families, with ethical and social commitment. Nursing cannot exercise care that is disjointed from other practices and the organizational context of the health care system, at all levels of technological density in the SUS network. These challenges point to possibilities of interconnection in the thinking about and deploying of health care, demarcated by policy, management, technical procedures and collective interaction in the act of care production. In this sense, health care practices, and in the case in focus, nursing, must have comprehensive care as the ultimate goal, operated by technological knowledge that values the relational field and intersubjectivity, entering into the world of the users' needs. --- CONCLUSIONS Health and nursing care practices persist with characteristics of the biological-based medical model, which is mechanistic and centered on health care professionals, and emphasizes super-specialization, to the detriment of health care work that is able to grasp the broader needs of users and families, in a context which strives for comprehensive care. This study reaffirms that the production of care must be the focus of all health care work, bearing in mind that intervention by technological action of each profession goes beyond the core of isolated knowledge, as is the case of nursing which, connected to other professional practices, can enter new territories of knowledge and practices that function by means of relational technologies. The field of relations is fundamental for the production of care that improves the health of users by means of light technologies , in which intercessor relationships are established aimed at embracement, bonding and accountability. Changing the way health care work is produced is no easy task, and an inversion of logic that has been operational to the present is needed. This should take place in the actions of all the subjects involved in the process . Health services need to assume one of its most important tenets: to promote intervention focused on the user, without devaluing workers, that is capable of enabling autonomy of individuals in their way of living, without losing sight of the dimension of care that should be present in any act. It is through dialogue and negotiation, marked by intersubjectivity between worker and user, that it is possible to find ways to meet the needs set forth at this meeting. Nursing is assuming significant spaces in care management, both at the micro and macro social levels. However, the spaces occupied have still not turned into spaces of change of practices, because the social determinations and historical contexts that influenced the way nursing exercised and exercises the care process cannot be denied . The management model is bureaucratized, vertical, systematized in tasks and production of services. Finally, challenges arise from new forms of organization of work in a modern and competitive world. Nursing needs to foster care that is more horizontal, seeking interfaces with other professionals and with other practices to rebuild its social role, seeking innovation and a balance among the technical, political and organizational dimensions.
Objective: this article discusses comprehensive care as a guiding tenet of the Brazilian Unifi ed Health System (SUS), outlining health care practices, especially nursing, and the relationships built by subjects in action by means of different knowledge. Methods: this is a theoretical refl ection that aims to propose dimensions of analysis (access to services, reception, links, lines of care, accountability, and responsiveness), with an emphasis on the dilemmas and challenges of nursing. The proposed dimensions analyze the production of care and its political and technical aspects. Conclusion: care should be the focus of all health care work, bearing in mind that intervention for technological action of each profession goes beyond the core of isolated knowledge, as is the case of nursing, which is connected to other professional practices, and can peruse other territories that operate through relational technologies, entering into the world of the needs of users and families.
Nine months earlier, Maria had arrived at the US-Mexico border to seek asylum and was shocked to find out that she not only would need to wait to get a number before waiting again for her initial processing by Customs and Border Protection but also-even after she passed her initial "credible fear" interview-would be forced to remain in Mexico while she waited for her immigration hearings, as part of the Migrant Protection Protocols. Her hopes for solace and safety disappeared, and her despair grew stronger. Around that time, devastating storms passed through south Texas, almost wiping out the entire tent encampment and causing many migrants to drown in the Rio Grande. Maria knew several of the dead. Life in the tent encampment was harsh.When she first arrived, there were no bathrooms or showers. Families bathed in the Rio Grande, only steps away from the refugee camp where others were living and from the area where families harvested vegetables, beans, and fruit.With no interior living facilities, a campfire was the only option to keep the refugees warm during the winter months. A large potable water pump system was installed to draw water from the river. Later, in the absence of any US government efforts to provide aid, international nonprofit organizations arrived to provide food and basic medical services in the camp. The only schooling the children were able to receive amounted to just a few hours a week and was organized by a pastor and a loose coalition of volunteers. With no end to the insecurity of life on the border in sight and overwhelmed by fear of what such a future could mean for Lucy and Carlita, Maria and Jose made the desperate decision to send them across the Gateway International Bridge alone to seek asylum as unaccompanied minors, recognizing that the Migrant Protection Protocols made an exception for unaccompanied children. On that unfathomable day, a group of other families gathered alongside the bridge next to the Rio Grande to offer Maria comfort and support as she watched her daughter and niece cross the bridge. As they walked across the bridge in tears, Maria cried, "Take care of each other, and God bless you!" After that day, at times Maria felt hope about the future for the children, but at other times she felt only despair. No parent should be forced to make that decision. Both optionswaiting in the inadequate refugee camp together or sending your children ahead alone-are fraught with peril and leave a parent to agonize and second-guess whether the option chosen was the best one. The wounds left on both parents and children will likely lead to irreparable lifelong psychological damage. The sense of loss and grief was evident in Maria. Even if she were reunified with her daughter someday, their bond may be disrupted and may lead to an insecure attachment. Both would likely feel guilt or shame for years to come. These are the overwhelming risks that come with all family separations. --- A Nightmare In Juarez More than eight hundred miles away in Juarez, Mexico, a town on the US-Mexico border that ranks among the most dangerous cities in the world because of violence from organized crime, a family from El Salvador awaited their asylum hearing. Because of the COVID-19 pandemic, their hearing was currently unscheduled: Approximately 850,000 immigration cases or hearings had been put on hold by the pandemic at that time. In the meantime, the family-Antonio and his parents-was staying at one of the many migrant shelters in Juarez. Before they traveled to the border, Antonio's family had been extorted for months by members of a local gang in El Salvador. The gang demanded a weekly fee for protection. When Antonio's father was assaulted for not making the payment, leaving him severely injured and permanently blind in one eye, the parents knew it wasn't safe to raise Antonio in their hometown. So in early 2019, when Antonio was just six years old, the family fled from El Salvador toward the US to seek asylum. After almost two months of grueling travel, the family arrived in Juarez. But their nightmare was far from ending. As their days in the shelter dragged on, Antonio was becoming increasingly withdrawn and fearful. Both of his parents were away most days trying to earn money to survive. The shelter was run by a local church group, and Antonio's parents had to contribute financially, as resources were very scarce because of the hundreds of families being housed there. They both worked making zippers in a warehouse near the shelter. One afternoon after returning from work, Antonio's parents noticed that he was not himself. Normally a joyful child, he was now quiet and tearful and had bouts of anger. Although Antonio did not tell his parents for several days, he eventually responded to his mother's constant plea of "¿Que te pasa?" : Six-year-old Antonio had been sexually assaulted on multiple occasions by a teenager in the shelter. In addition to the change in mood his parents had first noticed, he now struggled to sleep, was not eating well, and was soiling himself. The family needed to get out. They crossed the border without inspection but were deported immediately and sent back to Mexico without an opportunity to request asylum. The Customs and Border Protection officers told them they needed to wait in Juarez until their number was called. Antonio would have to return to the scene of his assault. At this point, in the summer of 2020, one of us and a doctoral student were brought in for a virtual psychological evaluation of Antonio at the request of the nonprofit organization that was helping him. The aim was to assess Antonio's emotional and social functioning and gauge the impact of the repeated sexual assaults that he endured while awaiting asylum. A case manager helped connect Antonio and his mother with the virtual platform. When the camera turned on, Antonio sat on a chair looking at the computer with a blank stare. To his right, his mother seemed nervous. The two were greeted in Spanish. His mother began to cry and expressed her gratitude for the meeting. After introductions, Antonio was handed crayons and a coloring book by staff members of the nonprofit and began to color.When it came time for his mother to share the family's story, Antonio was taken to another room; he was brought back later to continue the evaluation. Unlike so many forensic evaluations, which serve to document past torture and trauma endured in clients' countries of origin, Antonio's case detailed the abhorrent consequences of a series of US policies at the border that placed him in an unsafe environment where he was vulnerable to predation and then returned him to that environment after his family once again sought safety. If the family's asylum case had been processed when they first arrived at the US border, the sexual abuse that Antonio experienced would not have occurred. The evaluation will be used as evidence to invoke the principle of "non-refoulement," which guarantees that no one should have to return to a country where they would face torture or irreparable harm. This principle protects not only refugees but also those who have not had their status formally declared. It forbids a country receiving asylum seekers from returning them to a country in which their lives would be in danger. There are multiple examples of US obligation to this principle. For one, the US is one of 148 signatories to the 1967 Protocol Relating to the Status of Refugees. This international treaty ensures that the protections provided in the 1951 Refugee Convention are extended to refugees worldwide. In addition, the Refugee Act of 1980, an amendment to the Immigration and Nationality Act of 1952 and the Migration and Refugee Assistance Act of 1962, created the federal Refugee Resettlement Program in an effort to provide humanitarian support and self-sufficiency for refugees entering the US. Finally, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment, from the United Nations High Commissioner for Refugees, contains a ban on the return of an individual to any state in which the possibility of being subjected to torture exists. The principle of nonrefoulement should prevent countries from forcing families such as Antonio's to await asylum hearings in unsafe environments where they are at great risk for assault, mistreatment, and compounded trauma. As some of us witnessed, this is not what is actually taking place. Advocacy and policy efforts are needed to protect the human rights of these at-risk immigrants. --- Dismantling 'Remain In Mexico' After President Joe Biden's inauguration in January 2021, the dismantling of the Remain in Mexico policy began. On February 25, 2021, families living in the refugee camp in Matamoros were finally able to cross the Gateway International Bridge to seek asylum. The Biden administration said that it aimed to process and release about 100 families a day from family detention centers in South Texas. Some of us returned to the camp after this change took effect to volunteer and meet with families. Even through masks and protective face shields, one could still see the tears in their eyes as they finally stepped onto US soil. "Gracias, mi Dios," one family uttered as they stepped out of the Border Patrol van and waited in line to be processed. Some families were released with an ankle monitor and court documents. At the bus station in downtown McAllen, Texas, the Catholic Charities Humanitarian Respite Center was helping families with their transition to a new, uncertain world. Families were provided with a warm meal, clothing, shelter, and needed medical services. COVID-19 screening protocols were in place. These individuals and families had endured so much as they waited during the past several years. In the summer of 2020 Hurricane Hanna had ravaged South Texas and decimated the migrant camp. In February 2021 the devastating and deadly Winter Storm Uri left millions of Texans without power for weeks. Stories emerged of people of all ages screaming that they couldn't feel their toes and fingers as they bore the freezing conditions in their tents. Among the families in line were certainly more like Maria's and Antonio's, who had also endured trauma and abuse. We have shared just two stories from among those of the thousands of people who were affected by the anti-asylum policies enforced by the Trump administration. --- Advocacy, Policy, And Clinical Implications There is a humanitarian crisis at the US-Mexico border, now set against the backdrop of a global pandemic. In addition to the Migrant Protection Protocols, policies such as "zero tolerance," which required all illegal border crossings or attempted crossings to be prosecuted, have resulted in many families being separated at the border. In fiscal year 2019 the Border Patrol reported that nearly 474,000 family units were apprehended at the southwest border, representing a significant and alarming increase of 342 percent from 2018. The numbers fell sharply in 2020 after the virtual shutdown of the border because of the pandemic. Similar to Maria and her family, thousands of families from Central America's Northern Triangle countries are fleeing extreme rates of gun violence and organized crime, despite numerous attempts by the US government to deter families from migrating north. A 2019 study by Amanda Venta and Alfonso Mercado reported staggering trauma exposure and symptoms among migrant youth and adolescents from Central America. Another 2019 study by Mercado and colleagues documented that 70 percent of recently migrated families reported crime-related trauma and 50 percent reported physical or sexual trauma. Trauma exposure in general, as well as in the specific context of migrant youth, exerts broad, negative effects on well-being known as toxic stress. Among migrant youth and their parents, trauma is associated with mental and physical health concerns. Yet mental health screenings and trauma-informed care are not routinely provided to this population during immigration processing. Instead, migration policies often exacerbate risks for physical and mental health problems in migrants by adding new sources of traumatic stress. Indeed, the vulnerability of migrant youth and families has received recent global attention as a result of both overwhelming growth in these groups and policies that compound their vulnerability, such as the Migrant Protection Protocols and zero tolerance. Family separations have been condemned by a slew of organizations including the American Psychological Association, the National Latinx Psychological Association, and the Latinx Immigrant Health Alliance, and they pose serious trauma risk for immigrant families, with long-term health consequences. The stories in this essay highlight the effects of compounded trauma on the physical and mental health of migrant families as they advance through the different stages of the migration process. With a new administration, the US finds itself in a period of transition. In addition to reversing the requirement that asylum seekers await immigration proceedings in Mexico, President Biden has pledged to reduce family separation at the border and reunify families. It is equally important to facilitate access to health and social services with the goal of reducing risk and preventing further harm for immigrant families. First, there is an imminent need to build a workforce of physicians and mental health professionals equipped to meet migrants' complex health needs. This entails increasing health care professionals' cultural and contextual competence, providing an in-depth understanding of the immigration experience and its consequences, and building an expert support network for consultation on complex cases. In addition, mental health professionals should be trained in the assessment and documentation of trauma within the context of migration, particularly given the essential role that assessment and documentation play in the forensic immigration evaluations that are used in court proceedings. Further, resources should be allocated to create and coordinate emergency response teams to provide quick assistance in the face of compounded crises such as natural disasters and public health crises . Trauma-informed care systems should be embedded across institutions and organizations that come into contact with this immigrant population, including law and immigration personnel. Such systems focusoncreating environments that nurture and sustain traumainformed practices and interactions that prevent retraumatization. To become sustainable, these systems need stable funding and support for research efforts to document their effectiveness while also providing evidence for needed adaptations. The anti-immigrant rhetoric that has prevailed during the past several years in the US has fueled divisiveness among people, increased discrimination, and escalated fear among various immigrant communities, particularly the most vulnerable. For instance, during the COVID-19 pandemic, asylum seekers have been portrayed as potential carriers of disease and a public health hazard, which has been used as an argument to sustain discriminatory policies and practices. Educational programs and campaigns aimed at destigmatizing asylum seekers and undocumented immigrants are needed to build more inclusive and respectful environments and to restore trust in the US government among immigrant communities. One way to reduce stigmatization of immigrant populations is by facilitating avenues that increase social interactions between different sectors of society, such as building community work programs that involve asylum seekers and local volunteer associations. These actions are essential to helping integrate asylum seekers and at-risk immigrants into US society. --- At A Crossroads There is much work to be done, and the US stands at a crossroads. The actions taken to date cast a dark shadow over our sense of social justice and, ultimately, our humanity. Countless organizations and individuals have worked tirelessly during the past four years to mitigate the damage caused by inhumane policies geared toward instilling fear in people to deter them from seeking safety for themselves and their families. Yet because of the intolerable conditions in the countries from which people are migrating, these deterrents have not worked. Until recently, the US government's response has been to ratchet up hateful rhetoric. The fact remains that tearing families apart-or creating such dangerous conditions that family separation may be a parent's best avenue to keep their child safewhen they are most vulnerable is a violation of human rights. Health care providers have an
Crossing over the Rio Grande on the Gateway International Bridge from Brownsville, Texas, to Matamoros in Tamaulipas, Mexico, we saw a swath of dilapidated tents behind wire fences lined up against the street as soon as we crossed the border. More than 2,500 families were being forced to live in a tent encampment in Matamoros as a result of the Migrant Protection Protocols-often referred to as the "Remain in Mexico" program-instituted by the Trump administration in 2019, which required certain individuals seeking asylum in the US to wait in Mexico until the time of their immigration court proceedings. The policy did not call for vulnerable people, including unaccompanied children, people with mental or physical health conditions, or those whose lives were in danger, to be returned to Mexico, although compliance with these exceptions was sporadic. In February 2020 we-a group of psychologists and trainees-toured the refugee tent camp, where we met Maria. She had fled Honduras with her six-year-old daughter, Lucy, along with Maria's brother Jose and his eleven-year-old daughter, Carlita, after several family members were murdered by gang violence. Maria was making handmade tortillas with butter and salt over a campfire outside her small, rickety tent home, constructed with plastic tarps and sticks that seemed to be barely holding everything up. Surrounding her tent were many others like it, mismatched and clustered between mesquite trees. Families without tents slept under unsupported plastic tarps. As she clapped the dough together to make the tortillas, Maria averted her gaze as she shared that Lucy and Carlita were gone. They had crossed the US border alone a few weeks before. She began to weep, trying unsuccessfully to wipe away her tears with her t-shirt.
Introduction Shopping is an integral part of an individual's day-to-day life, so it can conveniently take on the characteristics and symptoms of behavioral addiction, such as loss of control and compulsion . Shopping addiction, which in this study shall be termed passionate shopping, has become a prominent topic in research. Long ago, a German psychiatrist coined buying mania to describe the problem, which now affects about 5% of the world's population . Nearly two billion people have purchased products or services online in the past two years, and e-commerce sales exceeded 4.2 trillion dollars worldwide . A single click is all that it takes. A new era of trade and commerce was ushered in by the introduction of information technology, which transformed users into consumers. Sitting comfortably in their room allows people to acquire what they need without going through the inconvenience of traffic, large crowds, and long queues . With the rapid rise of e-commerce and the emergence of "Payday Sales," "Discounts," "Cashbacks," and "Free Shipping Coupons," the public, most especially the youth, are Maslow posited that human motivation is influenced by physiological, safety and security, social, esteem, and selfactualization needs, which are inherent in every individual. Consumers make purchasing decisions to address a particular need; thus, when a person is motivated to fulfill the need, it influences buying behavior . Motivation is the first and most significant component to examine when evaluating psychological influences on consumer needs, as it pushes a customer to buy certain things . Perception is another factor that influences consumer behavior. It is the process by which a customer gathers and analyzes information about a product to construct a realistic impression of that thing. A customer's impression of a product is formed when they see commercials, promotions, customer feedback, social media comments, and others . Consumer evaluations on the internet supply product information and recommendations from another consumer's perspective and thus can aid another consumer in forming his impressions of the product. In the context of consumer behavior, Schiffman and Kanuk defined attitude as "a learned predisposition to behave in a consistently positive or negative manner concerning a specific object." According to this concept, attitude is not inherent or instinctive but can be affected by marketing messages . The Consumer Behavior Theory also examines social factors influencing consumer buying behavior. It is widely known that every individual belongs to a group , and the process through which people change their minds, modify their views or change their conduct as a product of group interactions is known as a social influence . Every person has someone in their lives who has the power to influence their purchasing decisions because consumer behavior is highly influenced by social factors . According to Perreau , some of these social factors are social circles and family. Their social circle influences consumers' self-image and behavior . Consumers are more strongly affected by individuals whom they have strong social links with compared to individuals who have weak social ties, according to a large body of marketing research . Within consumer behavior, Azjen's Theory of Planned Behavior proposes that an individual's likelihood of engaging in online shopping can be predicted by their intention to partake in this behavior . Per Azjen , intentions indicate the level of effort an individual is prepared to exert for executing a specific behavior. Consequently, the more substantial the intention, the greater the likelihood of the behavior being carried out. Furthermore, Pavlou stated that the willingness of a consumer to buy a product from an online business is referred to as online purchase intention. Under this theory, intentions are shaped by three key variables: personal attitudes, subjective norms, and perceived behavioral control. There is a positive relationship between attitude and behavior , which is why the more positive one's attitude toward action is, the more likely one is to engage in that activity . Marketing factors that can also influence consumer buying behavior include advertising. The process of advertising, selling, and delivering goods to consumers by a company to promote the purchase or sale of a product or service is referred to as marketing . Advertising positively impacts product trust and is one of the most effective factors in influencing shopping behavior. The Impulse Theory proposed by Hawkins Stern is one of the supporting theories of this study. Stern proposed that various external forces can cause impulse purchases. According to this theory, marketers can influence customers to purchase, exceeding their initial intentions . On that note, an online article stated that online shopping can be considered an addiction if consumers purchase more than they need . Stern established four impulse buying categories, but in this study, we will look at only three kinds. The three kinds of impulse buying, as suggested by Stern, include Pure Impulse Buying, Reminder Impulse Buying, and Planned Impulse Buying . The pandemic has hastened the transition to a more digital environment, prompted changes in online purchase behavior , and has contributed to the continued rapid expansion of the e-commerce business, which now offers safer shopping than traditional commerce . With the privilege of shopping online as quickly as possible, consumers' compulsive and impulsive urges to shop could rise. According to Benson , addiction is characterized by impulsivity and compulsivity. First, there is the inability to fight an urge, drive, or temptation, even if it damages oneself. Second, there is a moment of tension or arousal before the act, a period of release during the act, and a period of regret or guilt following the act. . According to Dutta and Mandal , Pure Impulse Buying refers to purchasing products out of pure impulse, which means that the consumers had not originally intended to purchase the item or product. However, they were driven to purchase it because of its appealing visuals. In online shopping, consumers cannot directly touch and keenly inspect the item they intend to purchase, which is why photography and multimedia have a massive influence on consumer buying behavior, as they allow consumers to form a visual connection with a product before purchasing it . According to Rundh , packaging entices consumers to pay attention to a particular brand, enhances its image, and promotes customer perceptions of the goods . The second category identified by Stern is Reminder Impulse Buying, which occurs when a consumer has past knowledge or experience with a product but has not purchased it until reminded through a promotional offer . Planned Impulse Buying happens when a consumer needs a product but is still determining its specifications. According to Stern , reduced prices or other types of sales promotion strategies encourage planned impulse purchases. All three categories of impulse buying suggested by Stern support the main theory of this study, especially in the context of marketing influences on consumer behavior. Stern believed that visuals or the way the products are presented to consumers and promotional offers like discounts or lowered prices are external forces that can influence consumers purchasing behavior. Another theory that will support this study is the Escape Theory. The Escape Theory refers to an individual's tendency to perform certain behaviors to avoid unpleasant psychological reactions . In a paper authored by Adamczyk , O'Guinn and Faber defined compulsive buying as a "chronic, recurrent purchasing behavior that occurs as a response to unfavorable events or sentiments." Compulsive purchasers engage in this type of purchasing to compensate for the difficulties in other aspects of their lives . Consumers try to escape these unpleasant events, so they engage in online shopping activities. This theory builds up the claim of the main theory and appends to the psychological factors that can influence consumer behavior. People are shifting from traditional brick-and-mortar to digital means . Furthermore, because the public is confined to their homes and, thus, has more time to access online shopping platforms, it has increased the perceived risk of passionate online shopping . Passionate shopping is a behavior that is closely related to compulsive buying disorder . Although the American Psychiatric Association does not recognize compulsive buying, attending to such behavior is necessary. The preliminary operational diagnostic criteria define compulsive buying as a problematic buying behavior that is: uncontrollable; distressing, time-consuming, and causing family, social, vocational, and financial challenges; and not limited to hypomanic or manic symptoms . Online passionate shoppers also undergo four stages of compulsive buying, according to Black . These stages are anticipation, preparation, shopping, and spending. Statistics have shown that e-commerce is not a passing trend, as it is expected to grow. Before the pandemic, e-commerce was already growing year-over-year, but with the implementation of lockdowns throughout the globe, eCommerce put online efforts into overdrive . With the current global state where businesses are opening their doors and schools unbolting their gates, the researchers want to see if people will still resort to online shopping despite having the means to shop at physical stores. Furthermore, the researchers' exploration shall revolve around the experiences of the passionate online shoppers themselves to gather firsthand information from consumers who are passionate to online shopping post-pandemic. Hence, the researchers will probe into the influencing factors that drive passionate online shoppers, the challenges they meet for being overly passionate about shopping, and the coping mechanisms these shoppers use to cope with the challenges. Therefore, this study will explore passionate online shoppers among college students at the University of Cebu main campus. This appends the main theory of this study, as attitude is considered one of the psychological influences that can affect consumer behavior. On the other hand, subjective norms consider how consumers perceive other people's perspectives on a particular activity. This could include the consumers' perception of the positive attitude of these reference groups towards online shopping, the more likely a consumer will perform such behavior. Perceived behavioral control pertains to the extent of control a consumer believes they have over their behavior. Consequently, the stronger our belief in our ability to control our actions, the more robust our intentions become to engage in that behavior . Online shopping is defined as directly purchasing goods, services, and various items from sellers through the Internet, as stated by Sunitha and Gnanadhas . English inventor Michael Aldrich was the first to pioneer electronic shopping. He established the first type of e-commerce in 1979, which allowed for online transaction processing between businesses and their clients. Then, in 1990, the World Wide Web was created, paving the door for an interconnected Internet that now houses a variety of e-commerce platforms . As technology continues to innovate, consumers now have diverse mobile applications and websites that can direct them to their favorite shops in just a snap. Consumers can access online shops from the comfort of their homes and conveniently shop while sitting in front of their gadgets . With a turnover of US$ 120,968 million in 2020, Amazon.com leads the worldwide e-commerce market, followed by Jd.com with US$ 83,058 million. . In the Philippines, according to the Statista Research Department, with about 73.65 million monthly web visitors as of the third quarter of 2021, Shopee was the most popular e-commerce site, while Lazada came in second with around 39.43 million monthly visitors. Statistics show that clothing was the most popular online shopping category in 2018, with 57 percent of global internet users purchasing fashion-related products online. With a 47 percent internet buying reach, footwear came in second . According to a poll of social commerce users in the Philippines, an article published by the Statista Research Department stated that clothing was the most popular product category in the first quarter of 2020, accounting for around 76.61 percent of sales. Online shopping has made purchasing goods and services more convenient and faster. Customers can immediately visit and purchase products or services through the Internet using a browser or a mobile application rather than visiting the merchant's physical location . Online shopping is getting more popular among busy individuals, particularly among the youth and those who know how to shop and buy online . About two billion people have bought products or services online in the last two years, with global e-commerce sales exceeding 4.2 trillion dollars . According to the report published by DataReportal, in the third quarter of 2021, 62.5% of Filipino respondents said they shopped online . Locally, 6% of transactions in e-commerce occur in Cebu . Previous research defined excessive shopping behavior as addictive , compulsive , and impulsive . The repeated, excessive, impulsive, and uncontrollable purchasing of things that can give significant psychological, social, vocational, and financial consequences is known as compulsive buying behavior . It has been found that product information found online has greater credibility and relatability , which is why online customer reviews are becoming more and more important in consumers' purchasing decisions . According to a study, consumers' online shopping tends to increase when advertisements benefit them. For example, individuals will be more inclined to pay attention to advertising if websites advertise special discounts on their goods and services . In addition, price is one factor influencing a consumer's buying behavior . According to a study, there is an increase in online shopping tendency in consumers when advertisements are beneficial for them. For example, individuals will be more inclined to pay attention to advertising if websites advertise special discounts on their goods and services . In addition, price is one factor influencing a consumer's buying behavior . According to a study, consumers' online shopping tends to increase when advertisements benefit them. For example, individuals will be more inclined to pay attention to advertising if websites advertise special discounts on their goods and services . In addition, price is one factor influencing a consumer's buying behavior . A previous study has found that online buyers are more susceptible to compulsive buying than those who shop through traditional means. Susceptibility to compulsive buying also rises along with increased online shopping frequency, increased online shopping expenditures, and more positive opinions regarding online shopping . Passionate Shopping is a consumer behavior characterized by an uncontrollable purchasing urge that can affect other aspects of the consumer's life . This research is bound to the study of Lim et al. entitled Factors Influencing Online Shopping Behavior: The Meditating Role of Purchase Intention wherein they stated that internet shopping is a rapidly growing phenomenon due to its convenience, making it a growing trend, particularly in the Generation Y. This study believed that shopping behavior is driven by a consumers' intention to purchase. This research supports the anchored Theory of Planned Behavior that states intentions play a significant role in purchasing decisions. This study has found a strong relationship between purchase intention and online shopping . A study conducted in India entitled Factors Affecting Consumer's Online Shopping Buying Behavior by Pandey and Parmar is another study ground for this research. The study investigated the diverse factors affecting a consumer's online shopping behavior. This research supports our statement of the problem, which states that influencing factors drive passionate online shoppers to shop. This research found that seven factors influence a consumer's online shopping behavior. These factors are perceived ease of use, perceived risk, perceived usefulness, the effect of website design, economic factors, availability of products, and customer satisfaction . A similar study was conducted in Turkey entitled Online Shopping Addiction: Symptoms, Causes, and Effects by Gunuc and Keskin . The said study revealed in its findings that as a result of online shopping, a number of its participants experienced changes in their emotional states. Few participants experienced negative feelings such as regret, worry, and stress during or after purchasing online. The study claimed that these feelings may cause excitement, pleasure, and impulse. In addition, a web article has claimed that the short-term effects of passionate shopping include feelings of positivity; however, long-term effects vary in intensity and scope. Passionate shoppers may face financial problems and debt in the long run . A study from the Journal of Consumer Psychology entitled Coping with Negative Emotions in Purchase-Related Situations is another study ground in this research. The current research will seek answers to the statement of the problem regarding coping mechanisms that passionate online shoppers use to cope with the different challenges they encounter in being passionate about internet shopping. A previous study has found that some of the challenges met by passionate shoppers are feelings of regret, worry, and stress . The study investigated how consumers manage stressful, emotional experiences in purchasing situations. Hence, the study revealed eight coping strategies that consumers may use. Each strategy is linked to four diverse negative emotions: anger, disappointment, regret, and worry. The study indicated that consumers could use distinct strategies to cope with emotions . The emerging trend of internet shopping has made shopping more convenient to consumers; thus, problematic shopping tendencies or being overly passionate about shopping online is a phenomenon that must be noticed. Hence, this research will explore the factors that influence passionate online shoppers, the challenges met by passionate shoppers caused by being a passionate online shopper, and the coping mechanisms of passionate online shoppers on the challenges metusing the Consumer Behavior theory that is anchored to the study and the Theory of Planned Behavior, Escape Theory, and Impulse Theory that is grounded in the study as supporting theory and utilize the related literature and studies to support and answer research problems. --- Objective of the Study This research sought to delve into the experiences of dedicated online shoppers within the college student community at the University of Cebu Main Campus during the academic year 2022-2023. The primary objectives were to examine the determinants --- Research Participants The study included University of Cebu -Main students enrolled during the Academic Year 2022-2023 who could be classified as enthusiastic online shoppers. These individuals were chosen through purposive sampling and subjected to a preliminary assessment. Eligibility for participation in the study was determined by administering the Bergen Shopping Addiction Scale , an online screening tool, to assess their status as passionate online shoppers. --- Research Instruments This qualitative study used two instruments, one for the screening of participants and the other for the interview guide for data collection. The researchers used the Bergen Shopping Addiction Scale to qualify potential participants. The test comprises 28-item questions based on the seven addiction criteria: salience, mood modification, conflict, tolerance, withdrawal, relapse, and problems. The response options are entirely disagree , disagree , neither disagree nor agree , agree , and completely agree . The higher the score, the more likely the participants will be addicted to shopping . The researchers developed semi-structured with open-ended questions for the interview guide to acquire the essential data to visualize the study in its entire student composed of a specific set of questions that is in line with our research aim, which is to explore the experiences of passionate online shoppers and that will answer our statement of the problem. 10-item open-ended questions will make up the research instrument. This interview guide was validated and evaluated by three experts. --- Research Procedure This section presents the study's data collection, analysis, ethical considerations, and trustworthiness. --- Data Collection The study was conducted after the researcher asked permission or approval by sending a letter to the humble office of the Vice-Chancellor for Academic Affairs. The letter was addressed to Dr. Yolanda S. Sayson. It contained our request for approval to conduct our study and gather research participants from the different colleges of the University of Cebu Main. Upon receiving permission from the Vice-Chancellor, the researchers selected students willing to participate. A letter was sent to every student to request approval of the administration of a brief screening test. To the best of their ability, the researchers introduced what the test is all about, explained the nature of the test, and explained thoroughly why the participants are explicitly answering the Bergen Shopping Addiction Scale to see if they are passionate online shoppers. The students undergo an online pretest and will be requested to answer the Bergen Shopping Addiction Scale as honestly as possible. The link to the online test was given to them after they signed the letter of approval. If the test gave high scores and thus identified them as passionate online shoppers, those students would make up the 16 research participants of the study, comprising eight males and eight females. After the brief screening test, the researchers invited the participants individually to a face-to-face interview. The interview was conducted at the participants ' most favorable time if it did not conflict with the class schedules for both researchers and participants. Before the interview, the researchers handed out the informed consent forms and the confidentiality agreement to the participants to obtain the participants ' approval and agreement to participate in the study. The researchers began the interview process after receiving the research participants' signed consent forms and confidentiality agreements. The data was collected through a face-to-face interview. The interview is being recorded to ensure all participants' responses are considered. During the interview, the researchers explained the nature and objectives of the study to the research informant who was with them. The research informant was briefed on the interview process and asked 16 semi-structured open-ended questions. To avoid complications with data collection, the researchers assured the research informant that their information would be kept confidential. They were encouraged to be honest in their responses and can provide other inputs for additional information. After going through all the questions, the researcher will thank the informant for participating to the best of his/her ability. --- Data Analysis The researchers utilized Thematic Analysis for the analysis of data. Thematic Analysis, as described by Braun and Clarke , is a technique to find, analyze, organize, summarize, and report themes in a data set. It allows for the systematic viewing and processing of qualitative data through "coding."The researchers familiarized themselves with the recordings of the online interview by transcribing the data, reading the text, and noting the initial ideas. The researchers coded the data by highlighting sections, such as phrases or sentences, of the transcribed text or interview data and generating shorthand labels or codes to describe the content. The researchers looked over the codes and then identified patterns to generate themes that relate and answer to the statement of the problem. After generating themes, the researchers made sure that the themes accurately represented the data by reviewing the generated themes. The researchers review the transcript to confirm that the data is accurate and that the themes are comprehensive. The researchers created a thematic diagram to illustrate the data, the themes, and the definition. Finally, the researchers created a write-up of the data analysis, discussed how often the theme comes up and what it means, and included examples from the data as evidence. The researchers explained the main points and showed how the analysis answered the statement of the problem. --- Results and Discussion This part of the paper summarizes the findings gathered through participant interviews, questionnaires, and data analysis utilizing thematic analysis by Creswell to gain an in-depth understanding of the study. This qualitative study required a thorough understanding of the participant responses collected for every transcribed response to comprehend the scope of this paper's content fully. The process of obtaining, recording, and encoding the significant statements was done using Microsoft Word. It was efficiently traced and properly encoded with its allocated codes. Significant statements represented the passionate online shoppers' responses to the factors that influence their behavior, the challenges they have met, and the coping mechanisms they use to cope. The researcher formulated meanings for the 160 significant statements taken from the transcripts. A comprehensive description of the participants' responses was presented correctly through the 160 coded formulated meanings. The formulated core meanings were grouped according to everyday thought and structural patterns. These frequently occurring groups of constructed meanings were known as cluster themes. There were nineteen cluster themes generated. Then, the cluster themes were enhanced and reorganized into sub-themes, which led to the merging of two or more cluster themes. There were seventeen sub-themes created. Finally, the seventeen sub-themes were grouped to create the emergent themes. Ten emergent themes were identified, representing the significant topics that offer solutions to the three sub-problems of the study. Nineteen cluster themes were generated using a thorough and prolonged process of core meaning formation using Creswell's thematic analysis. These themes were then regrouped into seventeen sub-themes, further divided into ten major themes known as emergent themes. The three emergent themes were classified under three overarching themes that give meaning to the sub-problems of this study. The major themes and accompanying emergent topics are as follows: --- I. Factors The major themes that were generated to answer the sub-problems of the study with different emergent themes are discussed here: --- Factors that Influence the Participants as Passionate Online Shoppers The generated emergent themes explained the factors influencing the participants as Passionate Online Shoppers. The following are the four themes developed to describe the responses of the participants that provide an answer to the sub-problem number 1: --- Psychological Factors The theme explains how motivation, attitude, positive emotions, perception, and escape mechanisms play a role in influencing the participants to shop online. --- Motivation The subtheme explains how motivation influences passionate online shoppers in their purchasing decisions. Participant 1 asked about her reasons for shopping online, and she answered: Kuan, my reasons for shopping online kay kuan kanang sometimes to feel good and but most of the time kay to satisfy ba nga kanang masuya jud ko haha, masuya ko sa gamit sa akong kauban so mopalit, paliton nako or kanang depende sad sa need like I, usually, I buy stuff because need jud nako siya. Kung ako lang mas mo go ko online kay naa naman koy mga sinaligan nga shops niya ahh kahebaw nako sa ilang quality. Kung ako lang kay prefer nako ang, prefer ko both but mas mo go ko online kay naa naman koy sinaligan na shops niya ahmm kahebaw nako sa ilang quality niya kanang if kuan sad siya if face to face okay ra siya but time consuming lang siya ba and then aside sa time consuming kay ahh naay tendency nga imong ganahan di available so ahhm pwede ka mag balik2 so mas preffered jud nako online. --- Participant 4 added: First, kay kuan necessity, like mga gamit nako daily basis or kanang products nga necessary which is kanang para sa daily para sa daily life ba. Second kay kuan kay ganahan rako hahahah kay maattract ka sa gamit ba, niya unya imuha na paliton. Niya ang 3 rd kay kanang if ever kay murag kanang stress reliever nako, niya basta kanang compulsive buyer kay ko kay kanang ma stress ko kay murag wala koy kwarta physical money mag sige kog add to card niya editso nakog order ba. Participant 16 also stated: Ahhhmmm... there's a lot to mention but 1 st kay mga needs nako ang akong g pangpalit, 2 nd is wants such as mga bags, shoes, and too many to mentions, 3 rd is masuya ko. I feel envy sa akong mga kaila nga naa sila ana then ako wala, silbi magpakanaa ko pero naa jud koy ikabayad. 4 th is madala ko sa advertisement kay samok kaayo kay sigeg balik balik sa akong news feed hangtud sa sigeg pakita mapalit nalang nako. 5 th is renovation sa amoang house and mga butang sa balay nga kabutangan then... hahahahah 6 th is hahahha wa koy reason like malipay lang ko maka checkout ko. Hahahah. The shoppers need to fulfill what motivates these shoppers to purchase their necessities through online shopping. --- Attitude The sub-theme explains how attitude influences shoppers in their online purchasing decisions. Participant 11 was asked about her attitude toward online shopping, and she answered: For me, it's um positive because, for my opinion and my end wala raman kaayo ko na apektohan and naka benefits rasad ko kay um mostly kanang tanan nakong gipang purchase is koan rana satisfied rako then koan sha makapalipay ra jud siya nako which is good for my soul. These shoppers have a positive attitude towards online shopping because of the number of benefits they receive. ( Participant 2 was also asked about his attitude toward online shopping, and he answered: Sa akoa is positive pero mu negative pud siya. Kanang for example kanang nindot na kay ga sale gasale so daghan jud akong mapalit nga sandal. Mupalit ko pero mu abot nako kay lahh di man diay ni nako magamit tanan nga hala uy madismaya sad ka ba kay at the same time ang quality niya ba kay dali ra ma kuan malaksi ahmmm. Ing.ana na siya mao na siya. Positive to negative pero mao raman gihapon mo shop gihapon ko kay maka benefit man kos online shopping jud. The shoppers have both positive and negative attitudes towards online shopping. However, they still shop online because the advantages outweigh the disadvantages. --- Positive Emotions The sub-theme explains how positive emotions influence passionate online shoppers' purchasing decisions. Participant 1 asked about her feelings when she purchases products or items online, and she answered: Base sa akoa kay when I purchase items online they really make me feel good since I have or I have kanang mga gipamili nag id na mga shops ba. If ever di available ang item sa ilaha kay di jud ko mopalit, but rather mo huwat lang ko kung kanus.a sila in stock kay kanang even if like kanang gastador kaayo ko hahaha even if gastador kaayo ko kay atleast man lang ba kabaw ko nga dira jud ko nipalit gani nga kanang kabaw jud ko nga kanang ang akong quality or ang items nga makuha nako kay di gani siya scam, di siya fake in.ana. Participant 8 added: Feel jud nako fulfillment jud. Mas mafeel nako nga mahappy ko niya ig abot sa product mas mu happy ko, kay ang akong kalipay diri ra sa 1 ra niya ig abot sa order mo 10 na hahahah. Participant 11 also stated: It is both satisfying and fulfilling um ang product naimong gi expect kay na meet like that and ang mga product kay barato it makes me koan its makes me happy jud. It is both satisfying and fulfilling when the products meet my expectations and if they are affordable because it makes me happy.) --- Perceptions The subtheme explains how perception influences passionate online shoppers in their purchasing decisions. Participant 4 was asked about how feedback or positive ratings affect her purchasing decisions, and she answered: Maka affect jud siya ate, kay dili man ko mu palit kung dili siya taas og rating gani. Kay para maka para naa ko assurance ba nga nindot ang qualities sa product and dili siya dali maguba ba ing.ana. So, tan.awon jud nako ang ratings niya if taas like 4.9 to 5.0 ing.ana. The shoppers' perception of the items or products is formed through feedback and favorable customer ratings. Positive feedback, reviews, and high ratings influence shoppers to do online shopping. ( --- Escape Mechanism The theme explains how passionate online shoppers use online shopping to escape unwanted feelings and emotions. Participant 12 is asked her reasons for shopping online, she answered: Ahm, if ever ahh koan if I'm doing a lot of tasks kanang overload ko for me uhmm purchasing something is really satisfying for me because uhmm as a reward lang for myself mura syag escape sa mga problema. Shoppers are driven to do online shopping because it is their way to relieve their stress and boredom and escape from problems they face at home. ( --- Marketing Factors The theme describes the marketing factors that influence the participants to perform online shopping. --- Appearance The subtheme explains how appearance or product visuals influence passionate online shoppers' purchasing decisions. Participant 10 was asked about her reasons for shopping online, and she answered: Less hassle, and buy things that I want most, especially the things that became the apple of my eyes hahahah kay kuan nindot niya ga imagine ko ga suot anah nga product basta nindot og design og patterns hahahha. Participant 8 added: Kay need nako niya mga wants nako nga maganahan ko sa akong gi pang shopeefinds nga nindot kayg color, mga designs, then, para nako sa akong needs og deserved jud nako nga magshopping labaw na nga nindot kay nga product sa pangdagway hahahah. . Participant 7 also stated: Moadto ko sa online shop para makapalit kos akong mga gusto like mga sanina and other goods para ma relief akoang stress kay hilabi na makakita kog nindot ako jud na paliton, dali raman gud ko ma attract sa visuals. --- Promotional Offers The sub-theme explains how discounts, coupons, and other promotional offers influence passionate online shoppers' purchasing decisions. Participant 1 is being asked what comes into her mind when she sees on-sale items, free shipping coupons, and discounts in online shops. She answered: Kuan, magka magka anxiety ko hahhaha kay akong pitaka wa namay sud niya ma timing nga sale ana ba kay syempre kanang imong mga backlogs nga gipang palit kay murag nahurot na imohang financial didto wa nakay money adto niya mag timing nga mag on sale magka kuan ko maka feel kog anxiety, ma pressure ko grabe kay nga pressure kay kanang sa akong mindset ba kay dapat makapalit ko kay sale siya, dapat makapalit k okay ngano, kuan ang akong ganahan nga color kay dapat makuha na nako siya hahaha niya in.ana kanang grabe kaayo ka tense nga feeling. Moadto ko sa online shop para makapalit kos akong mga gusto like mga sanina and other goods para ma relief akoang stress kay hilabi na makakita kog nindot ako jud na paliton, dali raman gud ko ma attract sa visuals. Participant 2 added: Of course mo kuan dayon ko mo mo palit kay sale na gud na. Ma tempted jud ko nga kuan mo palit kay uhm barato nalang ba niya kuan pud usahay ang shipping fee kay free nalang so uhm kuan di nako ma stress sa shipping hahahah mao na ma happy jud ko basta mag sale kay kuan man gud daghan kog ma palit ba in.ana. The shoppers feel a strong urge or drive to shop online when they see promotional offers being advertised online. Participant --- Social Factors The theme explains how the family and one's social circle play a role in influencing online shopping purchases. Participant 16 asked how his friends and family affect his purchasing decisions, and he answered: Kuan maka influence sila nakog palit og butang sama sa akong friend nga naa sila new bag nga shoulder bag gud then nasuya ko kay nindot kay sila tan.awon. Niya mao to nagdali dali kog pangutana nila nga send link asa g palit og unsay ikasulti nila, ukay kos online shops uy og mao to ni order kog same product. Then panagsa ayy dili panagsa kuan jud permi akong ate mabudol siya sa akong mga gamit pamaliton masuya siya kombaga og mao to ni order siya iyaha same shades and items HAHAHAHAH. Participant 10 added: Akong ate ug papa. Oo ang friends pud. Kuan example mag facebook akong papa then naay mga ads ads, iya sad kung e encourage nga mo order mi. Participant 16 also stated: Kasagaran kay friends, oo okay like mag sabot mi mag online shopping mi ana like para usa ra ang shipping fee. Then, if naa usa namo makakita sa ge add to cart nako kay grabe kaayo kuan kanang reaction nga palita na kay nindot kay na, so mas ma ingganyo ko mu palit anah. According to the responses, the shoppers were influenced by their family members or friends to shop online. --- Convenience The theme explains how convenience influences these shoppers to do online shopping compared to brick-and-mortar shopping. Participant 5 is asked about her reasons for shopping online: Kuan kanang kuan somehow maka kuan kanang makafeel kog relief kay kanang ka maka kanang makalimot man gud ko kuan sa kanang mga gi pang gipang hunahuna baah nakapastress nako and then kuan pud kanang murag nakauan sad ko nga murag unsay tawag anah ah ayyy sa hhahahahah kuan murag fulfilling sad kay sauna kay mu adto ko sa mall dili gud ko makaafford on the spot mu palit and then sa online shopping kay kanang kanang matimingan ba nga hala! Naa koy kwarta so mu palit jud diritso, niya kuan kuan pud convenient sad siya somehow kay dili naka kinahanglan mo adto sa mall to buy ohh mu adto simply mo adto nalang ka sa app. --- Participant 8 added: Para nako noh, kay positive siya kay kuan man gud siya convenient niya mas barato didto sa online kaysa sa physical store kay if mangutana ka sa physical store diri noh sa colon diha nga part noh kay mangutana ka pila ni miss tag 400 niya nakit.an nimu sa shopee tag 100 ra, so mas kuan siya convenient. Participant 12 also stated: For me is that uhmm, satisfying sha at the same time, fulfilling for me kay kanang nakuha nako akong want, so yeah and in a way of convenient for me not go around sa mall. According to the responses, these shoppers prefer online shopping over traditional shopping due to the convenience they experience. --- Challenges Met by the Participants Brought by Being a Passionate Online Shopper The generated emergent themes explained the challenges the participants met for being Passionate Online Shoppers. The following are the three themes developed to describe the responses of the participants that provide an answer to the subproblem number 2: --- Overspending This theme explains how overspending is a challenge for online shoppers. Participant 1 was asked about the challenges she has met in keeping on shopping online, and she answered: Ahhm for me sa in terms sa akong family kay ahmm mosabot raman sad sila if ganahan ko mag palit2 like og mga butang kay open up ko but not so much nga kanang mag rant ko but if sa akaong partner kay og mo storya ko usahay kay kannag murag syag masuko ba kay kabaw, kabaw siya nga kabalo ko nga dapat wala nako ga gasto2 pero ako raman gihapon gebuhat. Oo kay mura ba syag naka naka system na sya sa akong huna2 nga dapat mopalit jud ko ana kay what if syay makauna so dapat akoy makauna hahaha in.ana jud akong mindset so kanang usahay kanang maaspaot sya nako or its either kanag sya nalang jud ang mo initiate nga sige ako nalay palit pero pahuwtaon sa ko niyag dugay kay siguro para ma discipline ba ang like akong pagka impulsive ba. --- Participant 12 added: There are times jud na nanobra na and then naa toy one time na murag naay money but dili pa jud diha makuha so yes nakuhawam ko and there's a reason behind ngano naing.ato sha but after all nabayaran raman gihapon to. Participant 11 also stated: Para nako koan man gud masobraan ang wants ba like that pero koan jud prioritize jud na nako ang needs like that pero naay instances na ma sobraan ang wants kaysas sa needs. The participants tend to overspend on online shopping, leading them to have financial problems. --- Financial Problems The theme describes how the participants face financial crises due to their online shopping habits that are excessive and consistent. The experience of participant 3 about the challenges of being a passionate online shopper indicates that he faces financial problems. During the interview, he answered: Kuan pareho karon wala nakoy bawn ehe kanang kuan wala na pud koy extra money para pang laag ana kay sa sigeg palit shoppee pareha karon nana sad koy shoppee maabot. Usahay akong mama makabayad pero ako sad sya bayaran og kuan niya kanang usahay ma down ko kay maka realize ko nga di kayko kahebaw mo dala sa akong kwarta, di pako kahebaw mo organize kung unsa akong mga kinahanglan paluton. Dapat nga need nako kaysa sa akong mga wants so murag ma disappointed kos akong kaugalingon. (Like now, I don't have money anymore. I also don't have extra money for travels because I keep on purchasing from shoppee, like today, another parcel will arrive. Sometimes my mom will be the one who will pay but I make sure to repay her. --- Sometimes I feel down when I realize that I really don't know how to handle my money and I don't know how to organize what are my needs first instead of my wants. It's like I feel disappointed with myself.) Participant 9 responded the same as she added: Finances. Financial jud kay kuan like maka ana ka nga akong allowance kay kuwang na kay na shoppee nako tanan hehehe. Kuan if kanang time nga bored ko mao nana siya akong kuan mag rag scroll2 sa shoppee in ana. Participant 1 also stated: Ahmm for me ang usa ka challenge nako sa sigeg purchase online kay ang kanang financial nag gyud nako kay ahh since sige kog purchase online dili na stable ang akong budget plan, sige na syag kauyog, mo collapse na gyud siya so problema na jud kaayo ana ba niya kanang ma problema ko kanang usahay kanang sa akong ka impulsive kay di nako makahunahuna og kanang mag sige nalang kog huna2 og unsa akong paliton usahay niya kanang, kanang unsay tawag ani, kanang dili naba ko maka buhat sa unsa akong angay buhaton unta ana nga day kay kanang maka huna2 nalang ko nga unsa kahay nindot nga tan.awn sa online or kinsa kaha ang ga live selling kay mag mine2 bisag busy kaayo. Kanang kuan lang gyud like for example sad sa kanang books kanang maganahan lang ko sa iyang cover ehehe maganahan lang ko sa iyang smell, kanang I dunno kannag unnecessary lang jud kaayo siya nga di siya angay paliton. Ang visual niya, niya kana sang feel nako kanang ayy kanang naa koy nakit.an babay nya nibasa siya ani, paliton sad ni nako oy kay nibasa man siya, so kung depende kung kinsa akong ge suyaan. Due to their poor financial budgeting, the participants need financial help financially. They have run out of money to the extent that they have borrowed from someone else to pay for their online purchase. Participant 15 stated: Kuan katong naabot ge order onya, ang para bayad onta ato niya kay nagasto man nako mawto nakautang ko para makuha to nako nga order kay maikog tas ga deliver. Na save nako kaso lang nagasto nako kay dugay kay siya naabot gud. --- Participant 6 added: Kana financial status kay kuan kanang wala baya koy akong income ato so magsalig ko sa akong mama kay sa naa koy ganahan paliton niya wala allowance, niya sa financially kay kuan malain koooo kay mangluod ko or something ing.ana oooohhhh. Usahay kay nakatry kog pamaylo sa akong amega HAHAHAH niya ulian lang nako nextweek or ing.ana and then daghan amotan sa school manghuwam ko sa akong amega. Then nakatry ko nga hahahah nanghulam pero wa dayon nako nga ahmm nabayran pero okay raman me pero nakafeel kog guilty kay HAHHAHAH ahmmm nagpromise ko niya wa na buhat ba hahaha. Niya parents nako mangasaba na ig abot na sa parcels hahahahah pero wala ra jud na hahahhaha. --- Participant 2 also stated: Usually kay kanang naka experience ko ana nga wa jud koy kwarta ani pero ganahan man jud ko nanghulam ko sa akong maguwang niya. So, since akong mga favourites kay nagsale man ako jud siya paliton. Mao na siya. Mu palit ko anah kay sale na biya samtang gamay pa siyang presyo paliton jud siya. --- Mawala man gud ang gana kung mu taas na ang presyo. The participants have experienced being in debt to someone else due to online shopping. They borrow money from their siblings or friends to pay for online orders. --- Distraction The theme describes how shoppers get distracted by online shopping and need to remember to perform their daily duties and responsibilities. Participant 1 explained that she usually gets distracted by online shopping. In the interview, she stated: Ahh for me kay kanang oo kanang usually mahitabo jud na sa ako especially if akong tan.awn kay live selling, online niya kanang ma distract ko kay kanang syempre kay isa ra ka phone ako gamiton so dili ko maka multitask kay since ang sa iphone kay wala man syay chat heads so hmhm maglibog ko if mag padayon ba ko og kanang tuon or mag sige lang sa ba ko og tan.aw sa kuan sa live selling. So syempre pillion nako ang live selling hahaha kay kanang malingaw naman ko sa kanang mga sanina nga e sigeg suot ana ba so ang makuan sa akoa kay mag sige rakog huwat sa kuan hangtod saw ala na jud koy matuon, wa na jud koy mabuhat. --- Participant 6 added: Ahhhmmm there's one time nga naay daghan husagon sa balay niya busy kay ba niya gasale sige rakag scroll scroll hahahha ing.ana oo makasab.an ko. Nahugasan na nako anha na nga nangasaba hahahahah. Participant 9 explained how online shopping takes away her time. During the interview, she stated: Usahay kay like wala nakoy time nga, ay gamay nalay time sa pag tuon kay mas online shopping. The shoppers described that they experienced neglecting and forgetting about their tasks at home and losing time to do their schoolwork due to online shopping. --- Coping Mechanism of the Participants on the Challenges Met The generated emergent themes explained the coping mechanism of the participants on the challenges met for being Passionate Online Shoppers. The following are the three themes developed to describe the responses of the participants that provide an answer to the sub-problem number 3: --- Self-Control The theme describes how self-control is an effective strategy to cope with the challenges of online shopping, particularly overspending. Participant 1 is being asked about her coping strategies on the challenges met for keeping on shopping online. She answered: Ahhh so far sa akoa gyud kay well its really working kay uhhh ahhh kay I can really say nga I'm a very big spender gyud kay murag katunga sa akong sweldo, or actually murag mo three fourths sa sweldo kay padong gid na sa shopping noh. So dili man jud siya shopping nga literal nga magsige kog dada og daghang bag but ang deliveries nga mag sigeg padong kay daghan kaayo. Ang akong ge buhat is ako na siyang balik balikan og tutok like kanang I forgot unsa na nga basta naa na siyay way nga sigehan nimo sya og balik balik og tan.aw sigehan nimo siyag example if shoppee balik balikan nimog tan.aw ang item balk balikon nimo og unsa sya kanice nga item, hangtod sa mapul.an naka nga maka realize ka nga ayy dili man diay ko ganahan, di man diay ni nako siya kinahanglan gyud diay. Pwede raman diay ko wala ani or then aside sad ana kay akong buhaton is kanang dili usa ko mo kanang palit dayon but instead ako sa huwaton og if kinsa ang makauna or like if mahalin nani siya dili nani nako siya paliton ang uban. Og kanang tagaan sa nakog time akong self ba, kay ako sa e assess akongs elf if impulsive raba ko nga nitan.aw ko ani niya ron, nya if mo decide ba ko ron is it like more on emotional raba gyud nako kay if ig assess nako sa akong self kay more on emotional di jud ko mo go but if makaana gani ko nga kanang okay rako today di ko stressed, wala ko nasapot, kanang okay ra kanang stable ra akong feeling so mo purchase ko but if feel nako og due to stresss akong pag palit na or due to pressure na akong reasons sa pagpalit dili na gyud ko kay mosamot man hmph mo samot man akong behavior. Participant 8 explained that she would only buy items if she deserved them. During the interview, she said: Awww kana sgurong kanang if makaingon ko nga kanang strategies nako kay if deserved ni nako mu palit ko if dili nako deserved kay dili nako paliton. Niya kung naa lang sad juy kwarta ikapalit. Dili nako maundangan kay anha man nako macelebrate ang akong mga accomplishments. Naa koy gusto paliton niya nagpaabot jud kos birthday nako mads ako na dayon g order hahahahah oo naa nga nagkadugay wa na nako palita kay naa nas ubos hahahahhahahaha. Participant 5 further added: Gi unsa nako pag cope up ahmmmm... kuan kanang... ayy pwde nimu e translate og bisaya? Ahhahah kuan ahhhhh ako rana siya hunahunaon nga kanang if mu palit ka kinahanglan naa kay kwarta, kay mao jud na akong mindset hahahah. So kung way enough nag kwarta dili mo palit hahhaahaha. The participants saw the importance of self-assessment in regulating their online shopping tendencies. To avoid overspending like they usually do, these participants re-check their emotions to see if they are only acting out of impulse, re-check themselves if they deserve it, and re-check their finances to see if they have enough money to make a purchase. --- Budgeting The theme describes how budgeting is an effective coping strategy for the challenges of online shopping, mainly for financial problems. Participant 4 was asked about her coping strategies on the challenges met for keeping on shopping online. She answered: Kanang kuan mao to akong g sulti ganina nga lahi lahi akong mga wallet og alkansiya. Ako ipang lahi lahi akong mga kwarta kay para dili rasad siya mahurot sa kuan ba sa shopee. Niya lahi akong pangshopping lahi akoang pangfuture purposes. Naa pud koy daily basis niya needed niya naa koy mga paliton. --- Participant 11 added: Um for me the stra, strategy that I am using before and even now a days is, I usually budget if um unsa akong paliton ana specific na week or by another week but um of course dili man gud malikayan na naay mga umaabot na mga event koan like naay mga impromptu na mgalakaw like kana koan ko usahay kanang ma short pero koan ra ma bawi raman gihapon sha kay kanang lage kanang you know budgeting is the best. Participant 2 also stated: Unsa gani to Strategies sa? Sa pag? Usually sa akoa is mag matter ko sa kuan man unsa na siya uy sa price. Kay ing.ana man gud kay kani siya dali rani nako ma kuha ang kani nga ing.ani na butang. Dali rani nako ma. Makuan ra jud nako ba ma estimate. Sa price ko magbase ba. Like i said ako siya e manage so murag unsa gani na oyy e kuan e buget, e budget nako ba. Kay kanang naa man koy business. Sari sari store. Ang akoang halin mao akong gamiton sa pagpalit niya ang puhonan kay magpabilin sa tindahan. The participants know that to avoid facing financial problems, they must budget their finances well and establish a well-crafted budget plan. The participants make sure to allot money for shopping and saving so that they will stay within their finances. --- Uninstalling and Deleting Apps Temporarily The theme describes how temporarily uninstalling and deleting apps is an effective coping strategy for online shopping, particularly for distraction. Participant 10, when asked about her coping strategies for the challenges met, answered: Kuan e uninstall. Mao ra jud na ako if feel nako masobraan. E prioritize nako ang mas kailangan. Participant 14 added a similar thought: Ahhhm for me kay akong mga strategies is unsinstall the HAHAHAHHAA ge uninstall nako ang app ang shopee and shein kay distracting kayo sa akong mata hahahaha so kung nakoy need ako ra e install . Kayanon. Pugngan ang kuan hahahaha waman koy choice. Participant 15 also stated: Kuan sa pag kakaron sge naman kog kasab.an sakong parents gd kay sgeg order mawto naka realize pd ko nga dili diay mayo. Ako nalang ge anam2 og uninstall ang mga app. Para diko ma tintal. The participants uninstalled and deleted their online shopping applications to avoid getting distracted by online shopping. It is an effective way for them to avoid getting tempted to scroll through online shops and purchase items again. The data was collected, coded, segregated, sorted, categorized, and summarized to determine the data set's main theme. One hundred sixty significant statements and formulated meanings were taken from the participant responses that were transcribed and translated. These meanings are grouped into 19 cluster themes and subdivided into 17 sub-themes. Grouping the 17 subthemes resulted in 10 common or emergent themes. These themes were developed to convey the factors influencing shoppers to keep purchasing online clearly, their challenges, and their coping strategies. This phenomenological research study explored passionate online shoppers, focusing on the factors influencing their online shopping habits anchored on Consumer Behavior Theory, Impulse Theory, Escape Theory, and the Theory of Planned Action. Furthermore, this study explored the challenges these shoppers met and the coping strategies they employed to cope with the challenges, anchored on the findings of the pertinent literature supporting this study. The main theory, Consumer Behavior Theory, or the Theory of Buyer Behavior, is the primary tenet of buyer behavior theory. Since buying behavior is typically repetitive, it is susceptible to building a familiar purchase routine . Compulsion is a symptom of the addiction process, and it is defined as repetitive behavioral or mental acts that a person feels obliged to engage in. This pattern of behavior is frequently excessive and ritualistic by nature. Furthermore, this theory believes that psychological, social, and marketing factors play a huge role in influencing shoppers' buying behavior. Hawkins Stern's Impulse Theory also supports the results of this study. Stern proposed that a variety of external forces cause impulse purchases. This theory believes that marketers can persuade customers to purchase more than they had initially intended. Stern established impulse buying categories, which are Pure Impulse Buying, Reminder Impulse Buying, and Planned Impulse Buying. Pure Impulse Buying explains that shoppers had not planned to purchase an item but were driven to make a purchase because of its appealing visuals. Reminder Impulse Buying explains that the shoppers make purchasing decisions not because they have planned to do so but because they were reminded through a promotional offer. On the other hand, Planned Impulse Buying is encouraged through various promotional strategies that marketers offer their customers. As proposed by Stern, all three categories support the main theory of this study, specifically under marketing factors; Stern believed that visuals or the way the products are presented to consumers and promotional offers like discounts or lowered prices are external forces that can influence consumers purchasing behavior. Baumeister's Escape Theory is another theory that supports the results of this study. This theory describes an individual's tendency to behave so that any unpleasant psychological reaction is avoided. The theory believes that consumers try to avoid or escape unpleasant feelings or situations, which is why they resort to online shopping to find relief. In addition, Azjen's Theory of Planned Behavior further supports the findings of this study. The theory describes that an individual's desire to engage in online shopping can be predicted by their intentions to engage in it. The stronger the intention, the more likely behavior to be performed; according to this theory, attitude and behavior have a positive relationship. A consumer is more inclined to participate in an activity when their attitude towards it is more positive. In this study, the participants play a vital role in thoroughly investigating the factors that drive online shoppers to continue making purchases, the obstacles they encounter in their passion for online shopping, and the strategies they employ to overcome these challenges. In terms of the ramifications for current and future researchers, this also serves as a foundation for the researchers. References to further theories and pertinent research were used to back up the findings of this study. The study's sub-problems elicited themes from the participants' responses, and these themes are now presented in conjunction with their placement and relevance within the underlying theories. --- Factors that Influence the Participants as Passionate Online Shoppers Four emergent themes under this overarching theme describe the participants' responses about the influencing factors that drive shoppers to keep purchasing online. --- Psychological Factors This theme explains how motivation, attitude, positive emotions, perception, and escape mechanisms play a role in influencing shoppers to shop online. Upon careful analysis of the participant's responses, motivation, attitude, positive emotions, perception, and escape mechanism were the derived sub-themes that emerged as influences categorically placed under Psychological Factors. The main theory of this study, which is the Theory of Buyer Behavior, lends weight to the idea that there are underlying psychological factors that influence shoppers' purchasing decisions. The passionate shoppers who served as participants in this study explained that they continually shop online because they have needs they want to fulfill. These shoppers make purchasing decisions to address their needs, thus paving the way for motivation to play a part. According to Maslow , every individual has needs that are pivotal in motivating behavior. The shoppers are motivated to fulfill their needs, which is why it pushes these shoppers to purchase online. Also, most participants indicated a positive attitude towards online shopping. Although some of these participants have expressed negative feelings towards the disadvantages of shopping online, these shoppers tend to still do it for the various benefits they enjoy. As one of the shoppers mentioned, despite feeling hostile towards online shopping for receiving poor quality items, he still shops online for its benefits. Azjen's Theory of Planned Behavior supports this as these shoppers already have strong intentions to purchase online, manifested in their positive attitude towards online shopping. The positive attitude that the shoppers have towards online shopping indicates the likeliness that they will engage in the activity. As the theory goes, the more positive one's attitude toward action is, the more likely one is to perform that activity . Further, the participants explained that they engage in online shopping because of the positive emotions they can get from the activity. Every time these shoppers engage online, there is a sense of fulfillment, satisfaction, happiness, and relief. With this knowledge, the shoppers are more drawn to keep doing it to feel that sense of satisfaction, happiness, and fulfillment. This is supported by previous research entitled Factors Affecting Consumer's Online Shopping Buying Behavior by Pandey and Parmar , wherein the research findings found that customer satisfaction is among the seven factors that influence a consumer's online shopping behavior. Furthermore, the shoppers revealed that past customers' feedback, reviews, ratings, and recommendations hold substantial importance in shaping their purchasing decisions. This feedback helps the shoppers construct a realistic impression of a product they cannot examine, which is why most of the shoppers who took part in this study explained that they look at the reviews and ratings before making any purchases online. Moreover, the shoppers expressed that online shopping served as an escape route from the stresses and problems they have in life. As one of the shoppers answered, online shopping is like escaping her problems at home. The Escape Theory proposed by Baumeister attests to this idea that shoppers utilize online shopping to escape any unwanted or unpleasant feelings, events, or sentiments. This theory builds up the claim of the Theory of Buyer Behavior and appends to the psychological factors that can influence consumer behavior. --- Marketing Factors This theme describes how shoppers are influenced to shop online by various marketing factors such as appearance and promotional offers. After carefully analyzing the participants' responses, the derived sub-themes that emerged as among the influences falling under Marketing Factors are appearance and promotional offers. The main theory of this study, which is the Theory of Buyer Behavior, lends weight to the idea that there are underlying marketing factors that play a role in influencing the purchasing decisions of shoppers. As one of the participants mentioned in response to her reasons for shopping online, she explained that she buys items online because she got attracted by what she saw. A similar statement came from two other participants, who stated that they shop when they see something they like or something nice. Hawkin Stern's Impulse Theory lends weight to the idea that the shopper's purchasing behavior falls under the category of Pure Impulse Buying. The shoppers did not initially plan to purchase something online, but because of its appealing visuals, they were driven to do so. In online shopping, the shoppers cannot keenly inspect or examine the product they intend to purchase. This is why multimedia and photography greatly influence shoppers, allowing them to form a visual connection with the product before they click the check-out button. Additionally, discounts, free shipping, online coupons, and other promotional offers are among the factors why shoppers shop online. According to the responses, shoppers have this strong urge to purchase when they see promotional offers online. They would grab the opportunity to clear out their online baskets by checking out the products they previously added to their carts. As one of the participants mentioned, whenever she sees promotional offers online, she shops daily, which tripled because she sees promotions as an opportunity to purchase in bulk. Pure Impulse Buying, a category under the Impulse Theory, further supports this. Stern states that reduced prices or other sales promotion strategies encourage planned impulse purchases. The shoppers will grab any opportunity they can purchase items at lower prices. They feel happy whenever there are promotions and feel a sense of pressure to purchase if there are discounts and sales, which is why promotional offers can push shoppers to shop online. Furthermore, according to a previous study, there is an increase in online shopping tendencies in consumers when the advertisements are beneficial for them. Therefore, these shoppers are more inclined to pay attention to advertising if online shops advertise discounts and other promotional offers on their products. --- Social Factors This theme describes how family and friends play a role in influencing their purchasing decisions. The sub-themes that emerged as among the influences that fall under Social Factors are family and friends. The Theory of Buyer Behavior attests to the idea that social factors play a role in influencing shoppers' purchasing decisions. The participants explained that most of their purchasing decisions are influenced by their family members or social circle. As one of the participants mentioned, he asks for the opinions of his friends before purchasing items online. The participant also mentioned that he agrees with his sister to purchase similar items online as they influence each other. This shows that shoppers are more strongly affected by individuals they have strong social ties with. This is further supported by a previous study conducted at Beihang University entitled "How Social Ties Influence Consumers: Evidence from Event-Related Potentials," which states that when friends recommend a product, there are more purchase decisions than those recommended by strangers. In addition, another participant's response mentioned that her father encourages her to purchase whenever her father sees online advertisements. According to Du Plessis et al. , the family is one element that potentially influences a consumer's purchasing behavior. Parents are the experts in the family, and their knowledge is valued and trusted most, especially by their children. This is the reason parents, as role models, have an impact on the consumer behavior of shoppers. --- Convenience This theme describes how shoppers are influenced to shop online due to the convenience that online shopping offers. During the pandemic, there was a surge in online shopping since consumers could not leave their homes for the risk of contamination. Now that the restrictions are loosening up and everything is slowly returning to normal, a follow-up question was inquired if the shoppers prefer online shopping or the traditional mode of shopping at present. The participants explained that most of them would still choose online shopping over brick-and-mortar shopping due to its convenience. One of the participants mentioned that it is less hassle because she does not have to leave her house to buy something. Another response said it is convenient. After all, she does not have to go to the physical stores because she has access to the things she needs through her gadget. This is attested by the previous study conducted by Lim et al. entitled "Factors Influencing Online Shopping Behavior: The Meditating Role of Purchase Intention", stating that shopping through the Internet is a rapidly growing phenomenon due to its convenience. The shoppers are more driven to shop online because they enjoy the luxury of convenience where in they do not have to leave home or go through the inconvenience of long queues. --- Challenges Met by the Participants Brought by Being a Passionate Online Shopper Three emergent themes under this overarching theme describe the participants' responses about the challenges they met brought by being passionate online shoppers. --- Overspending This theme explains how the shoppers see overspending as a challenge of being a passionate online shopper. With the rapid growth of online shopping accompanied by the various promotional offers offered to their consumers, more and more people are engaging in the phenomenon, forming passionate online shoppers. As the saying goes, too much of everything is terrible. Undoubtedly, these passionate online shoppers who uncontrollably shop online face challenges such as overspending. One of the participants who took part in the study explained that she knows she should not be buying anymore because her finances are already affected. However, she still does it because of this seemingly uncontrollable urge to purchase online. Another participant responded that there were times when it was already too much to the extent that she had to borrow money from someone else to pay for her purchases. These shoppers are aware that they tend to overspend in online shopping, which affects them financially. The Impulse Theory by Stern lends weight to this as the theory believes marketers can persuade shoppers to purchase more than they had initially planned. The shoppers are purchasing more than they need, and some participants have explained in some parts of the interview that they have bought items they never got to use or were left idle at their homes. Shoppers find overspending as one of the challenges of being passionate about online shopping, resulting in another challenge: financial problems. --- Financial Problems This theme describes how the participants face financial crises due to excessive online shopping habits. After a thorough analysis of the participant responses, it was revealed that due to their excessive purchasing behavior driven by the various influencing factors that push them to purchase online, these shoppers experience financial problems. As mentioned by a participant, she experienced running out of money because she had spent it all on shoppee, an online shopping site/application. These instances led her to ask for money from her mother to pay for her online purchases. In return, she feels disappointed with herself because she cannot manage her finances well. Due to poor financial budgeting and excessive shopping, shoppers face financial crises and thus need help to balance their finances well. Additionally, another participant explained that her budget plan is badly affected due to her constant spending. In some parts of the interview, most of these participants also explained that they regret shopping online due to their financial problems. The participants experienced being in debt to someone else, and they also felt down after purchasing because they knew that their financial aspect would be gravely affected. These results are further supported by a study conducted in Turkey entitled "Online Shopping Addiction: Symptoms, Causes, and Effects" by Gunuc and Keskin , which revealed that a number of its participants experienced changes in their emotional states that few of the participants experienced negative feelings such as regret, worry, and stress either during or after purchasing online. The same sentiments are mentioned when the participants were asked about their attitude towards online shopping and how they feel when they shop online. Multiple participants expressed that they feel regret after making a purchase, and some expressed worry if the product will meet their satisfaction. --- Distraction This theme explains how shoppers get distracted by online shopping and need to remember to perform their daily duties and responsibilities. To further assess the shoppers' challenges for being passionate about online shopping, they were asked about instances where they could not perform their daily obligations. The responses revealed that online shopping distracts the participants from doing their responsibilities at home and their tasks for school. The participant explained that getting distracted by live selling online usually happens to her because she cannot fight the urge to watch and look for something nice to purchase. She finds it fun to watch these, which is why she lost precious time to study. A similar response described that she needed more time to study because she spent most of it online shopping. Another participant mentioned that she could not perform her household chores because she got distracted by the promotional offer she found online while scrolling through her phone. In return, she got reprimanded for neglecting her duties. Due to the convenience of having access to these shops through gadgets, online shopping is more likely to interrupt shoppers from performing their daily obligations and tasks. The participants were expected in their responses that online shopping could indeed distract them and thus alter their day-to-day responsibilities. --- Coping Mechanism of the Participants on the Challenges Met Three emergent themes under this overarching theme describe the participants' responses about the coping mechanisms that shoppers employ to cope with the challenges met. --- Self-Assessment This theme describes how self-assessment is an effective coping strategy for the challenges of online shopping, particularly overspending. The participants explained that being able to assess oneself is an effective way to cope with the challenges brought by being passionate about online shopping. A participant explained in great detail that to cope with her online shopping tendencies, she takes the time to assess herself, especially her emotions, before purchasing online. She assesses herself to see if she is only acting out of impulse or emotionally unstable when she makes a purchase. If she is, she will not be swayed by it and stop purchasing something because she knows it will only worsen her behavior. In addition, another participant explained that she will only purchase things if she deserves them, which means she will also assess herself if she needs a reward. Furthermore, another response stated that it is all about mind-setting. She will only purchase it if she has the money, but if not, she will not. The participants saw the importance of self-assessment in regulating their online shopping tendencies. To avoid overspending like they usually do, these participants re-check their emotions to see if they are only acting out of impulse, re-check themselves if they deserve it, and re-check their finances to see if they have enough money to purchase. --- Budgeting The theme describes how budgeting is an effective coping strategy for the challenges of online shopping, mainly for financial problems. After thoroughly analyzing the participants' responses, one of the coping strategies that the shoppers utilize to address financial problems is budgeting. This strategy was found effective in some participants as they expressed in some parts of the interview that they did not face any financial challenges. As one of the participants mentioned, she separates her money so that she does not max it all out on online shopping alone. There is money intended for shopping, her daily expenses, and future purposes. This way, she will not be financially broke. The same sentiment is mentioned by two other participants wherein they budget to avoid financial problems. The participants are aware that in order for them to avoid problems financially, they have to budget their finances well and establish a well-crafted budget plan. The participants make sure to allot money for shopping and saving to stay caught up in finances. --- Uninstalling and Deleting Apps The theme describes how uninstalling and deleting apps is an effective coping strategy for online shopping, particularly for distraction. The participants are aware that online shopping is tempting and thus can distract them from performing their daily obligations and can lead them to purchase excessively, which is why most of the participants expressed that in order to address these challenges, they uninstall or delete the app so that they will not be tempted anymore. --- Conclusion The study delved into the passionate online shoppers' experiences who are college students at the University of Cebu Main Campus during the academic year 2022-2023. The study sought to examine the factors that drive individuals to become fervent online shoppers and to uncover the challenges they encounter due to being passionate online shoppers. Additionally, it aimed to explore the strategies and methods employed by these participants to overcome the challenges they face in their pursuit of online shopping enthusiasm. The participants' responses yielded ten distinct emergent themes, which were then organized into three overarching themes to address the three sub-problems identified in the study. These emergent themes were derived from the participants' significant statements. Concerning the factors influencing participants as passionate online shoppers, the overarching theme "Factors that Influence the Participants as Passionate Online Shoppers" encompasses four emergent themes: Psychological Factors, Marketing Factors, Social Factors, and Convenience. In the context of challenges participants face due to their passionate online shopping habits, the overarching theme "Challenges Met by the Participants Brought by being a Passionate Online Shopper" encompasses three emergent themes, specifically Overspending, Financial Problems, and Distraction. Finally, when examining how participants cope with these challenges, the overarching theme "Coping Mechanism of the Participants on the Challenges Met" encompasses three emergent themes: Self-Assessment, Budgeting, and Uninstalling and Deleting Apps. The study underscores the significance of acknowledging and managing the diverse challenges associated with online shopping addiction. By delving deeper into these issues, practical strategies for managing these challenges can be identified, empowering online shoppers to maintain a balanced lifestyle. Additionally, recognizing and utilizing coping mechanisms is crucial for these individuals to successfully navigate the challenges of their online shopping addiction. The "Escape Theory" by Baumeister relates to the tendency to engage in certain behaviors to avoid undesirable psychological reactions. This framework is valuable for empowering dedicated online shoppers with the means to effectively address and navigate their challenges related to online shopping. The study focused exclusively on female passionate online shoppers within the college student demographic, thereby omitting an examination of passionate online shoppers in the workforce. This limitation is significant as it neglects to account for passionate online shoppers from diverse backgrounds, including both genders and members of the LGBTQ+ community, who may be deeply engaged in online shopping activities. Future research should consider expanding its scope to encompass a broader spectrum of online shoppers to provide a more comprehensive understanding of this phenomenon. For future research endeavors, the researcher recommends the following topics: First, a comprehensive investigation into "Online Shopping Addiction amongst Male Shoppers" could provide valuable insights into gender-specific online shopping behavior and addiction patterns. This would contribute to a more holistic understanding of online shopping addiction. Secondly, examining strategies and interventions for "Dealing with Financial Problems due to Excessive Shopping" is essential, as it can offer practical solutions for individuals facing financial challenges due to shopping habits. These suggested research topics aim to further our knowledge and facilitate the development of targeted interventions for online shopping addiction. ---
This study provided a thorough analysis of the factors that influence online shoppers, the challenges they face in being passionate about online shopping, and the coping mechanisms for dealing with the challenges met. The phenomenological approach was used in this study as a qualitative research technique. The participants were selected using purposive sampling. The open-ended, semi-structured questions developed by the researchers were used to collect data during interviews. The qualitative data were analyzed using Brikci and Green's (2007) thematic approach. From the transcription of the in-depth interview, codes, significant statements, formed meanings, cluster themes, and emergent themes were found and retrieved. The participants' responses revealed eleven (11) emergent themes, which were divided into three (3) overarching themes that offered solutions to the sub-problems of the study. For the factors that influence the passionate online shoppers, the overarching theme Factors that Influence the Participants Passionate Online Shoppers has four (4) emergent themes classified as Psychological Factors, Marketing Factors, Social Factors, and Convenience. The challenges brought about by being a passionate online shopper with the overarching theme Challenges Met by the Participants Brought by being a Passionate Online Shopper have three (3) emergent themes classified as Overspending, Financial Problems, and Distraction. For the coping mechanism, the overarching theme was the Coping Mechanism of the Participants on the Challenges Met, which has three (3) emergent themes classified as Self-Assessment, Budgeting, and Uninstalling and Deleting Apps.
2011; USPHS, 2000). Despite a large body of research on mental health service use by African American youth and adults , the factors that determine their mental health service use are still poorly understood . The limited research available has suggested that, among youth, boys are more likely to receive services than girls . Recent research has suggested that past experiences with mental health services may be related to expectations about services and that expectations in turn might relate to intentions to use services . Links among African Americans' experiences, expectations, and intentions have been studied in relation to health behaviors , cancer treatments , and medical decisions , mainly with adults. However, few studies have focused on the relationship among these concepts to explain African Americans' mental health service utilization. As well, child welfare systems are often the means by which African American children and youth access mental health services , but there has been little research on the role of expectations, experiences, and intentions in these settings , especially for mothers of these youth . Much of the literature reviewed focuses on urban families in high-risk settings, similar to the current sample. Experiences with mental health service are prior encounters with mental health services either for oneself, family members, or friends . Expectations about mental health service are beliefs that mental health services will be pleasant and beneficial or aversive and harmful . Intentions about mental health service utilization are one's willingness to seek mental health services . Though limited research has focused on the links among these concepts, there are some theoretical and empirical bases for focusing on these links to provide an understanding of African Americans' mental health services use. The original Theory of Reasoned Action proposed that important determinants of intentions are one's experiences and attitudes . One limitation of the original TRA was that intentions may not always translate into actions, because people may either lack the capacity to translate intentions into actions or perceive themselves as lacking this capacity; such capacity may be heavily influenced by norms, which can restrict what is seen as possible . The Theory of Planned Behavior , an expansion of TRA that included perceived and actual control over behavior to take into account this discrepancy. Despite this difference, both TRA and TPB predict that intentions to engage in treatment arise from expectations about how useful, coercive, and sensitive treatment would be and the possible negative outcomes of treatment . It has been successfully applied to African Americans' decisions regarding medical health care. Hammond and colleagues found that expectations strongly predicted African American men's intentions of getting routine health screening: positive expectations increased African American men's intentions for screening whereas negative expectations decreased such intentions. Similar links have been found between expectations and intentions for cancer screening for African Americans . However, there has been limited research applying TRA and TPB to African Americans' mental health services utilization, despite some evidence that it is relevant in explaining mental health services use in predominantly White samples . Empirical evidence, though limited, has shown that African American parents' expectations about mental health treatment for their children are influenced by their experience with past treatment, including not only the clinical outcomes of treatment, but also the quality of the relationship with the treatment provider and the autonomy afforded to them in treatment . In other words, experiences tend to influence expectations, which in turn influence intentions . African American adults are less likely than whites to be satisfied with the services they receive from mental health providers ; less research has examined the expectations and experiences of African American youth, although the research that has been conducted suggests general similarities between African American youth and adults . Negative aspects of experiences with mental health services for African Americans include inappropriately prescribed psychotropic medications and attendant side effects , lack of respect or attentiveness on the part of providers , and breaches in confidentiality . Negative experiences with mental health services have been linked to negative expectations about possible future mental health service use. Several researchers found that negative experiences with mental health services were associated with more negative expectations about future mental health service use for African American parents. Leis and colleagues in a study of low income African American expecting mothers, found that negative expectations centered around unpleasant interactions with providers, especially providers who were rushed and did not take the time to get to know clients. On the other hand, African Americans mothers' feelings that they had been respected in their children's treatment were associated with more positive expectations about future mental health service use . Given the fact that African Americans are more likely than other ethnic groups to have negative experiences with mental health services, it is not surprising that African Americans also have more negative expectations around mental health services and more distrust of mental health services than other ethnic groups . Expectations are linked to intentions to seek or continue mental health services for African American adults. Expectations that treatment will be helpful and relevant are predictive of increased intentions to seek treatment, both for oneself and one's children . On the other hand, for African Americans, expectations that treatment will include unhelpful or harmful medication and that providers or "the system" are not trustworthy predict reduced intentions to seek services. Limited research has also revealed that African Americans frequently have ambivalent experiences with mental health services and that ambivalent experiences often lead to ambivalent expectations and intentions about these services . Ward and colleagues further noted that many African American women are "torn" between a belief that mental health services could help and a reluctance to use medication. The purpose of this research was to examine qualitatively the links among expectations about mental health services, experiences with mental health services and intentions about mental health services in African American mothers and their youth from a low-income urban community with a high rate of child welfare involvement. The research questions were: 1. Do mothers and youth who report positive expectations about mental health services also report positive experiences with mental health services and positive intentions to seek mental health services in the future? 2. Do mothers and youth who report negative expectations about mental health services also report negative experiences with mental health services and negative intentions to seek mental health services in the future? 3. Do mothers and youth who report ambivalent expectations about mental health services experiences also report ambivalent experiences with mental health services and ambivalent intentions to seek mental health services in the future? --- Methods --- Research Design A cross-sectional qualitative descriptive research design was used to examine mothers' and youths' expectations about mental health services, experiences with mental health services, and intentions about mental health services. This design allows respondents to share their perceptions in everyday language and thus allows clear communication of participants' perspectives . While a full description of the research methods can be found in a previous publication , a brief description of the research methods is provided. --- Sample The sample was drawn from the Capella Project, a larger longitudinal quantitative study of the long-term outcomes of child abuse and neglect for 245 mother-youth dyads who were followed from infancy through young adulthood. The Capella Project sampled mother-infant dyads from districts that were high in poverty and high in rates of calls to child protective services. Dyads with a report of maltreatment were oversampled; 60% of the original sample had been reported as maltreated. Two thirds of the Capella Project sample was African American. From dyads participating in the Capella Project, we selected a purposive sample of 32 African American dyads of mothers and youth who met the following selection criteria: youth between the ages of 13 and 19, and both mothers and youth reporting using mental health services. All interviews were conducted at the research offices of the Juvenile Protective Association, except five, which were conducted in participants' homes . --- Measures Two semi-structured interview guides, the Mother Interview Guide and the Youth Interview Guide , were developed to elicit information about mothers' and youths' experiences with and expectations and intentions about mental health services utilization. Mothers' and youths' experiences, expectations, and intentions were elicited with three open-ended requests for information. The request for information about experiences was: "Tell me about your experiences with mental health services for you, your family, and non-family members ." The request for expectations was: "Tell me about what you expect when you think about the possibility of getting mental health services for yourself." The request for intentions was: "Tell me how likely you would be to try to get mental health services if you thought they were needed." Mothers were also asked to talk about experiences with mental health services, expectations about mental health services, and intentions to get mental health services for the target youth. Each request had probes to elicit more comprehensive information. For example, to elicit more information about positive or negative experiences with treatment, respondents were asked, "What things did you like about [the services]? What things didn't you like?" The interviews were conducted in a conversational style allowing for a natural interaction between the research participants and the interviewer . The interview guides were revised based on feedback from experts in qualitative research as well as African American parents . --- Procedure The study was overseen by the Institutional Review Boards of the first and second authors, and the interviews were conducted between June of 2008 and July of 2009. After written informed consent and permission was obtained from each mother, and assent obtained from each youth, the mother and youth participated in separate interviews that took place in separate private interview rooms at the research office or in the home. Interviewers were graduate students with prior experience conducting interviews. They were trained extensively on the interviewing process and each conducted several practice interviews observed by the senior investigators . All interviews were recorded audio-digitally. Interviews ranged in length from 22 minutes to 86 minutes for mother participants and from 20 minutes to 59 minutes for youth participants. Participants were reimbursed for their time and transportation costs . --- Data Analysis Qualitative content analysis process, proposed by Sandelowski for qualitative descriptive research, was use to analyze the data. This framework focuses on summarizing, rather than interpreting information generated by participants . All interviews were digitally recorded and then transcribed verbatim from digital recordings by professional transcriptionists. Each interviewer listened to the digital recordings and compared the transcripts against the digital recordings for accuracy. At the time of checking the transcripts for accuracy, the interviewer removed all identifying information about mothers, youth, family members, and providers from the transcripts and made notes on the transcript to capture nonverbal behaviors during the interview, such as pauses or crying . The corrected interview transcripts were entered into Atlas.ti, a software package developed to support qualitative data processing. Relevant quantitative data collected through the Capella Project was condensed on SPSS and used to produce quantitative descriptive summaries of these variables. An initial codebook was developed by reviewing the first few transcripts. Research team members were paired and independently coded each transcript to enhance reliability. The results of the two independent codings were then compared and discussed until consensus was achieved. Definitions of codes and code subcategories were refined based on discussion of discrepancies. Following Miles and Huberman's guidelines, a series of matrixes that summarized the data for each code across all participants was developed. Themes from the codes were determined based on how frequently they occurred . For the purposes of these analyses, experiences with mental health services were categorized as positive, negative, and ambivalent, depending on reported satisfaction with these experiences . Expectations about mental health services were categorized as positive when they included beliefs that engaging in mental health services would be pleasant and/or beneficial, and negative when they included beliefs that engaging in such services would be aversive and/or harmful. Those who reported both substantial positive and negative expectations were categorized as having ambivalent expectations. Intentions about mental health services were categorized as positive when respondents indicated a plan or willingness to seek mental health services for themselves or their children, if needed. Having no plans or being unwilling to seek such services were categorized as negative. Uncertainty about whether to seek or avoid such services was categorized as ambivalent. Strategies used to ensure trustworthiness of this qualitative study were credibility and transferability and methodological coherence and sampling sufficiency . To ensure credibility, we held regular team members to counter any research team member's biases that may have impacted the research process; collected data from two sources, mothers and their youth; and used multiple interviewers who received extensive training in qualitative interviewing, including mock interviews. To ensure transferability, we provided detailed information about the mother-youth dyads and the research site to assist the readers in determining if the results are transferable to their clientele. Our focus on developing and maintaining maximal compatibility among our research questions, research design, data collection methods, and data analysis guaranteed methodological coherence. Lastly, we ensured sample sufficiency through our purposive sample of 32 mother/youth dyads who had experience with mental health services utilization. According to Morse , a sample size of at least 30 is adequate to provide rich data when the data collection method is semi-structured interviews. --- Results --- Participant Characteristics The mean age of the mothers in the sample was 41.10 years ; the mean age of the youth was 15.20 years , with a range of 13 o 18 years old. The median family income was between $15,000 and $20,000 per year; 67.5% of participating families had incomes under $20,000. Slightly more than a third of the dyads included a male youth; the remainder of the dyads included female youth. Pseudonyms have been used in reporting participants' quotes. --- POSITIVE EXPECTATIONS Mothers: Of the 32 mother participants, 16 reported positive expectations of mental health services. Of these 16 mothers with positive expectations, 11 reported both positive experiences with mental health services and positive intentions to use mental health services. The remaining five mothers with positive expectations reported: ambivalent experiences and positive intentions , positive experiences and ambivalent intentions , or negative experiences and positive intentions . The mothers with positive expectations are presented in the first column of Table 1. Thus for more than two-thirds of the mothers with positive expectations, positive expectations of mental health services were linked to positive experiences with mental health services and to positive intentions to use mental health services for themselves or their family members, generally their children. For example, Mary, the mother of 13 year old Diana, reported her positive expectation of mental health services after observing the benefits of these services for her own mother, resulting in her having positive intentions to use mental health services for her own daughter: As a child, I could see that she [mother's mother] was really having a rough time with it. But after she started seeing the psychiatrist, we could feel that she was coming back into herself and feeling better and getting stronger and accepting it better.... it actually gave me a positive view of counselors, psychiatrics. . -Sally Youth: Of the 32 youth participants, 14 reported positive expectations of mental health services. Of the 14 youth with positive expectations, most reported both positive experiences with mental health services and positive intentions to use these services. Five reported either positive experiences with mental health services and ambivalent intentions to seek mental health services or positive experiences and negative intentions . The youth with positive expectations are presented in the first column of Table 2. All of the 14 youth with positive expectations reported positive past experiences. Nearly two-thirds of the youth with positive expectations of mental health services reported both positive past experiences and positive intentions. In some cases, youth expressed a desire to reconnect with a particular provider. For example, Tiara, a 13 year old girl who had had positive experiences at a counseling center, cited her positive experience and her intention to seek out the same counselor if needed. Since I had a positive experience like it made a big impact on me like I just think about all counselors that they're nice...And like if you have a problem with your mother like they'll sit you down and for both of you all to talk and stuff like that.... I would call her to see if she could get me connected back with [Counselor] to see if I could talk to her again. -Tiara Diana, a 13 year old girl who discussed a friend's positive experience with school counseling, talked about her own positive expectations around counseling, especially confidentiality. Although this youth thought it was unlikely that she would need counseling, she expressed willingness to do so, if family members were not available. She said: People can go to them to talk about their problems. Because they said that whatever you tell them, they won't tell your parents and stuff like that. ... I think counselors are okay. But I'm not the type of person who would go to a counselor, myself... it probably may be a situation where my brother might not be around or my mother might not be around. He or she might be the last person that I could, maybe, turn to or try to talk to. -Diana --- NEGATIVE EXPECTATIONS Mothers: Seven of the 32 mother participants reported negative expectations. Of these seven mothers, two reported both negative experiences with mental health services and negative intentions to seek mental health services. The remaining five mothers reported either positive experiences and positive intentions or negative experiences and positive intentions . The mothers with negative expectations are presented in the second column of Table 2. Less than a third of the mothers with negative expectations about mental health services reported both negative experiences and negative intentions. These mothers believed that engaging in mental health services would result in being stigmatized and wished to avoid this negative consequence for their children. -Brenda Two concerns were discussed among the five mothers with negative expectations and either positive or negative experiences with mental health services and positive intentions to seek mental health services: privacy, particularly in the context of group therapy, and medication. Regarding privacy, Nikki, the mother of 14 year old Travis, said: I'm not good with groups. I'd rather deal with it one on one instead of having all my business out there and it's supposed to be private groups but anybody could come out and see you anywhere and tell your business. ...I'm basically in the process of trying to move and get some health problems situated and that's another reason why I'm not working and just get a lot of my health problems dealt with and then maybe if after that I think I still need some mental health, then I'll probably seek her [counselor]. -Nikki Concerns about medication centered on potential side effects. Christina, the mother 13-yearold Malcolm, noted, "Sometime it [medication] changes the way you act. Now how would I be able to be there for my kids thoroughly if I'm drugged up?" However, this mother added that she would seek mental health services if her condition worsened: If it [depression] gets to the point where I just, I mean, to the point where I'm just, I just don't want to get out the bed, I just have no motivation to do anything, then I'm going to have to because that could hurt me. -Christina Youth: Five of the 32 youth participants reported negative expectations. Of these five youth, two reported both negative experiences with mental health services and negative intentions to seek mental health services. The remaining three reported: positive experiences and positive intentions , positive experiences and ambivalent intentions , and ambivalent experiences and ambivalent intentions . Most youth with negative expectations reported either negative or ambivalent experiences. The youth with negative expectations are presented in the second column of Table 2. Further, only 40% of the youth who reported negative expectations about mental health services also reported both negative experiences and negative intentions. These youth had concerns centered around confidentiality, and reported either that they had enough support from family and friends, that mental health services would never be needed, or that they needed services but would avoid them because of concerns over privacy. For example, Rachel, a 15 year old girl, discussed concerns with privacy and expressed unwillingness to seek services, even though she felt a need for such services. -Tarita --- AMBIVALENT EXPECTATIONS Mothers: Nine of the 32 mother participants reported ambivalent expectations about mental health services. Of the nine mothers with ambivalent expectations, none had both ambivalent experiences with mental health services and ambivalent intentions to seek mental health services. Five of the nine mothers reported ambivalent experiences with mental health services and positive intentions to seek mental health services. The rest reported: negative experiences and positive intentions , negative experiences and ambivalent intentions , positive experiences and ambivalent intentions , or negative experiences and negative intentions . The mothers with ambivalent expectations are presented in the third column of Table 1. Mothers with ambivalent expectations and experiences and positive intentions tended to express relatively positive views about mental health services' possibilities. However, they reported greater variation in likely outcomes, depending on either the attitude of the service recipient or the service provider. For example, Jane, the mother of 14-year-old Antonio, had ambivalent experiences and positive intentions. She reported that success depended on the recipient being "open-minded" and expressed doubts about whether such services might work for her. However, Jane reported that she was willing to seek mental health services for her son after evaluating alternative approaches and obtaining input from others. Jane noted that recipients' motivation might be one reason why services might not work in practice: The -Jane The ambivalent expectations of those mothers who had positive intentions , regardless of experience, were centered on the type of provider encountered. These mothers had positive intentions to seek mental health services because they perceived that the seriousness of the need for mental health services overshadowed uncertainty around type of provider encountered. For example, Maria, the mother of 17 year old Tarita, reported: Sometimes -Maria Youth: Thirteen of the 32 youth participants reported ambivalent expectations. Of these 13 youth, none reported both ambivalent experiences and intentions. Instead, they reported: positive experiences and positive intentions , positive experiences and negative intentions , positive experiences and ambivalent intentions , ambivalent experiences and positive intentions , negative experiences and positive intentions , negative experiences and negative intentions , and negative experiences and ambivalent intentions . The youth with ambivalent expectations are presented in the third column of Table 2. The youth with ambivalent expectations but negative experiences and negative intentions expressed a lack of an opinion about mental health services, or uncertainty as to whether such services were truly useful. Their negative intentions centered on the expectation that their confidentiality would be violated. For example, 17-year-old Claudia stated: I just have this like little feeling inside me that they're going to tell somebody. But they're not, that's what they say...So I sometimes believe them. I believe they're going to tell my parents or something like that or just anybody. So I just don't feel comfortable. I used to think that but like as I grow up now and I go to school, I really don't think that anymore. I used to. Sometimes I do...But not like I used to. -Claudia Claudia did not intend to talk to a counselor, saying, "If I have something going on, I just talk to my mom...So my mom, I know she won't tell nobody. So she's like my best friend. And yeah, so I trust her like a whole lot." The youth with ambivalent expectations but positive experiences and positive intentions were typically unsure of what to expect from services, thinking that the counselor might not like them or the counselor might be boring. But at the same time youth reported having thoughts such as "Well yeah, I want to talk" and that talking to the counselor "might be good when I have a problem". As such, they intended to go to a counselor, reporting, for example, "So I'm a just try it out". 15-year-old Daron said: -Daron --- Discussion Previous research suggested links among an individual's expectations, experiences, and intentions to engage with mental health services . We found that 68.8% of mothers and 64.2% of the youth who reported positive expectations about mental health services also reported both positive experiences with and positive intentions to seek mental health services. There was less consistency among expectations, experiences, and intentions for both mothers and youth who reported negative or ambivalent expectations. Specifically, only 28.6% of mothers and 40.0% of the youth reporting negative expectations about mental health services also had both negative experiences with and negative intentions to seek mental health services. No link existed when expectations were ambivalent; none of the mothers and youth with ambivalent expectations about mental health services also had both ambivalent experiences with and ambivalent intentions to seek mental health services. These data suggested that the TPB worked best when explaining the links among positive expectation and its corresponding positive experience and positive intention, and then only for roughly two thirds of the mothers with positive expectation. For both mothers and youth, TPB had limited ability to explain the links among negative expectations and their corresponding negative experiences and negative intentions as well as the links among ambivalent expectations and their corresponding ambivalent experiences and ambivalent intentions. A plausible explanation is that the other TPB concepts, subjective norms and perceived behavior control, may play an important role in explaining intention to seek mental health services. Subjective norm is the mothers' and youths' perceptions of important people's approval or disapproval of their seeking mental health services . Perceived behavioral control is the mothers' and youths' perceptions of how easy it would be for them to seek mental health services ; what internal and external barriers may interfere with them seeking mental health services. In their meta-analysis, McEachan, Conner, Taylor, and Lawton disclosed that even though attitude was the strongest predictor of intention, when it was combined with subjective norms and perceived behavior control, the combination explained almost 45% of the variance in intention. Similarly, Armitage and Conner concluded from their meta-analysis that attitude plus subjective norm and perceived behavior control explained on average 39% of the variance in intention. Additionally, perceived behavior control, not attitude, was the strongest predictor of intention as indicated by two meta-analyses . As such, the inclusion of subjective norms and perceived behavior control may help explaining intentions to seek mental health services . For our sample, internal barriers that influenced their decisions not to seek mental health services were their concerns about being prescribed psychotropic medications, about their confidentiality being violated, and about receiving a pejorative label and the stigma resulting from this label. Similar to Breland-Noble's et al. and Ward's et al. results from African American samples, our results revealed that mothers and their youth perceived prescribed psychotropic medications as not helpful. Leis et al. also revealed that African American women were reluctant to seek mental health services because they perceived that the therapist prescribed psychotropic medication with horrible side effects as the first and primary mode of treatment without obtaining a clear comprehensive understanding of the patient. African Americans viewed psychotherapy as more beneficial than psychotropic medication, but perceived that therapists preferred psychotropic medication over psychotherapy . In regards to loss of confidentiality, Mishra and colleagues reported that stigma was closely related to loss of confidentiality related to mental health. They disclosed that once a person is known to have sought mental health services and/or have a psychiatric diagnosis, it was highly likely that the person would be stigmatized. Due to their fear of loss of confidentiality and stigma, African American women , African American mothers of youth , African American youth between 12 and 18 , and depressed African American adults preferred not to see a therapist; they would talk to family members or friends before talking to a therapist. In fact African American young adults who received mental health services as adolescents reported not trusting therapists because therapists had violated their confidentiality. This concern was also present when parents of such young adults considered mental health treatment . Contextual factors such as the external barriers to seeking mental health services may further our understanding of the disconnect between intentions, expectations, and experiences in these families. In particular, many of the ambivalent and positive intentions suggested by the respondents were provisional and conditional. As well, services are often simply not available, as limited by cost and geographical distance . This is especially true of low-income African Americans living in inner cities , which was true of most of the families in our study. Finally, in some cases, the services received in the past had been mandated and were not likely to be available outside of child welfare mandates due to the cost and/or lack of health insurance. These real barriers, while not mentioned explicitly by respondents, may have influenced their thinking in linking expectations, experiences, and actions. Consistent with Mulvaney-Day's and colleagues' report that intentions were often provisional, our sample reflected considerable uncertainty about whether to seek mental health services because of their experiences with former providers. Ambivalent intentions may reflect a significant source of the high rate of early drop-out and low uptake of services by African Americans . --- Limitations The primary limitation is the lack of African American fathers' and adult males' perspectives, given that the sample comprised urban low-income mothers and their children. The sample had a high number of families with a history of reports to child protective services and included several families who had been mandated by child protective services to receive mental health services . Thus, many of the mothers had viewed these services as a means by which they would regain, or keep, custody of their children, an especially coercive context for mental health services. African Americans are more likely than other groups to receive mental health services in a coercive context, especially in the context of child welfare . However, this sample may not be drastically different from the general population of African Americans receiving mental health services. These findings are unlikely to generalize to African American adult males, and further research should examine African American adult males and fathers. Research suggests that African American men are especially resistant to mental health treatment . In addition to concerns about stigma, African American adult men also have been shown to have concerns about being perceived as weak and not masculine . Youth age may have influenced the findings. We sampled youth from all stages of adolescence: early adolescence, middle adolescence, and late adolescence . However because there were no apparent differences in themes based on youth age or gender, we have some confidence in the applicability of the findings across these stages as well as across gender . It is also important to acknowledge that this study was cross-sectional and had no follow-up results, making causal inferences risky. Finally, this exploratory study did not include all elements of the TPB model, and future research should include subjective norms and perceived behavioral control. --- Implications for Research and Theory More comprehensive qualitative research is needed to explore African American mothers' and youths' intentions to seek mental health services. In addition to expectations about mental health services, experiences with mental health services, and intentions about mental health services, this comprehensive research should include subjective norms about mental health services and perceived behavioral control about mental health services. This would allow us to discern the links among mental health service related expectations, experiences, subjective norms, perceived behavioral control, and intentions. The inclusion of all concepts of TPB may greatly enhance our understanding of this population's intentions to seek mental health services and may provide some indication regarding what other factors need to be examined in future exploration of intentions to seek mental health services. Once there is a comprehensive understanding of factors influencing African American mothers' and youths' intentions to seek mental health services, researchers will be positioned to develop culturally relevant evidence-based assessment instruments and to develop culturally relevant evidencebased interventions to promote African American mothers' and youths' mental health service utilization. Future research should also focus on the congruency of the mother/youth dyads to discern if they report similar linkages among mental health service related expectation, experiences, subjective norm, perceived behavioral control, and intention. Lastly, the comprehensive explorations of the concepts of TPB can provide needed data to inform the development of policies for promoting the utilization of mental health for African American youth and their families. These policies could conceivably be used to address issues related to psychotropic medication and loss of confidentiality. --- Implications for Practice and Policy Because positive expectations are usually linked with positive intentions, health care providers should work to create a therapeutic environment that promotes positive experiences with and expectations about mental health services. Recognizing that African Americans' negative and ambivalent expectations include receiving psychotropic medication and fear of a breach in confidentiality, mental health care providers need to counter these expectations as a first step in the development of a productive therapeutic relationship. At a public health level, education and public awareness targeting expectations is also likely to have beneficial effects on rates of service use, especially if appropriately targeted to African American families. Addressing early in the therapeutic relationship the possibility that mothers and youth may have negative or ambivalent expectations about mental health services may help toward promoting mothers' and youths' trust and engagement in the therapeutic process. African American mothers and youth may be especially sensitive to interpersonal cues that providers are not sensitive to their needs, do not listen, or are interested in a "quick fix" . Future work should address ways of clearly communicating concern and building relationships with African American families. In addition to training on interpersonal communication, providers may benefit from structures that formally incorporate the input of African American parents and youth, through community consultation or routine opportunities for families to provide feedback . Community consultation is an innovative structure in which some parents act as consultants, assisting with engagement and guiding service delivery . This model, developed in school settings, could be adapted for other modes of service delivery. A structured mechanism for them to provide feedback beyond client satisfaction questionnaires, possibly mediated by community consultants, has the potential to both provide a sense of empowerment and make treatment more effective in meeting client needs. The piloting of such extensions of the model is likely to be a good investment in improving access to mental health services and possibly reducing the disparities noted earlier. As noted earlier, African Americans often receive mental health services in a coercive context , and a large number of the mothers in the study had received such services in a child welfare context. In addition to being aware of the concerns around psychotropic medication and confidentiality, special efforts are needed to promote therapeutic alliance in such a context. As has previously been discussed, the quality of services provided in the child welfare context is not consistently high . As well, it is especially important for case workers who make referrals to be clear with themselves and with the families that they serve about the links between the particular problems faced by the families they are serving and the particular goals of recommended or required therapies. In such a coercive context, it is especially important to focus on therapeutic alliance and to not assume that compliance with mandated services represents beneficial engagement with these services.
A cross-sectional qualitative descriptive design was used to examine the links among expectations about, experiences with, and intentions toward mental health services. Individual face-to-face interviews were conducted with a purposive sample of 32 African American youth/mothers dyads. Content analysis revealed that positive expectations were linked to positive experiences and intentions, that negative expectations were not consistently linked to negative experiences or intentions, nor were ambivalent expectations linked to ambivalent experiences or intentions. Youth were concerned about privacy breeches and mothers about the harmfulness of psychotropic medication. Addressing these concerns may promote African Americans' engagement in mental health services.African American; mental health services; expectations; intentions African Americans, regardless of gender and age, use mental health services at much lower rates than do other ethnic groups (Angold et al., 2002). Because African Americans have rates of untreated mental health needs that are higher than other groups, and because African Americans are disproportionately exposed to traumatic events such as community violence, the disparity in mental health services is a pressing public health problem (Roberts et al.,
Introduction Chagas disease is a disease caused by the parasite Trypanosoma cruzi. According to estimates by the World Health Organization , there are currently between 6 and 7 million infected people, predominantly in the continental territory of 21 Latin American countries [1]. As a consequence of population movement, mainly migration, a growing number of cases have been detected in recent decades in Canada and the United States of America, in 17 European countries, and in two in the West Pacific, characterizing a new epidemiological distribution worldwide [1,2]. In fact, CHD is, nowadays, a predominantly urban disease and the means of non-vectorial transmission have acquired greater relevance [1,2]. It is estimated that in reality up to 75 million people in the world are at risk of infection [1]. In 2015 the WHO included CHD among the 21 Neglected Tropical Diseases and, like the others, one of the main challenges of its control is the detection of undiagnosed cases, estimating that worldwide, no more than 10% of infected patients have been diagnosed [1,3]. The biomedical, psycho-social, cultural, and anthropological characteristics of CHD are important determinants for those infected, their family members, and the society that surrounds them [4,5]. There are multiple complex barriers faced by migrant populations regarding access to CHD diagnosis and treatment. Psycho-social barriers, such as fear of the disease and stigma, are the most relevant. Other barriers are administrative, such difficulties accessing healthcare services [4][5][6][7][8]. An integral approach keeping these determinants in mind is essential for promoting access to diagnosis and treatment, along with social integration and prioritizing the elimination of the various personal and social barriers that characterize the disease [6][7][8]. In the recent years, approaches based on information, education, and communication have included the key analytical elements that are necessary to understand CHD and the problems that infected people face. These approaches have brought new perspectives that are both different and constructive to the families and close friends of patients, and to the community [7][8][9]. In addition, multiple decisive actions have recently been carried out by different stakeholders in the fields of public health, health systems, and the academic and research world, along with civil society . These actions aimed to achieve better visibility, awareness, and promotion of access to diagnosis, treatment, and globally-applied research. One of the recent and most relevant initiatives was the creation of the International Federation of Associations of People Affected by Chagas Disease , in 2010 in Olinda , which today brings --- Community intervention strategies The process of construction of the community strategies . From the year 2002-2004 the first cases of CHD in our surroundings were detected in a significant way, a disease which, until then, had not been detected in Catalonia [12]. The work began in 2004 with a clinical approach [13], followed by a socio-anthropological approach [5,14]. Once the situation was understood more deeply, an approach was begun from the public health field. This contributed to the creation, product of previous work, of the Asociación de Amigos de las personas afectadas por la enfermedad de Chagas , which allowed for collaborative work to begin between primary care and specialized care. Subsequently a phase of integral approach started, incorporating the psycho-social aspects of the disease with clinical work. The cycle finished with a global approach proposal and with the definition of the best strategies to use, both in the improvement of access and in the management of clinical examination . --- Implementation of the strategies to improve the access to diagnosis and treatment of Chagas Disease: Community interventions . The community interventions completed in this period have been organized into three groups: workshops, community events, and in situ screenings. The plan for these strategies was made by the community health team and integrated by a doctor, two nurses, and the community health agents . The CHA had also leaded the interventions accompanied on occasion by educators of community peers and/or multipliers. The whole community health team has been involved in all the interventions. CHA have been professionally trained as social mediators and also received specific training on community health. Community peers have been trained on Chagas disease by healthcare professionals within the community health team. Both, CHA and community peers, have played an important role in the implementation of the different strategies, by hosting workshops, informing in community events and facilitating in situ screening interventions. These three proposed strategies are established according to: 1. The collective organization of the Latin American community, specifically Bolivians, living in Barcelona, which occurs mainly around leisure-cultural events. 2. The community health team observations regarding the strategies which had better acceptability among the Latin American community, specifically Bolivians, and that lead to an increased accessibility to the diagnosis and treatment of the affected people 3. The revised literature for the community approaches to tackle health problems, in which integrating an IEC approach promotes better results. The workshops were organized thanks to the collaboration and involvement of different organizations and associations. The hosts of the workshops were the CHA. The group of participants was closed, with a maximum of 15 participants per workshop. The workshops lasted for one hour and they aimed to inform and educate. The material used was the result of work done during previous stages, such as that of the platform BeatChagas [15]. In addition, there were the community events interventions, which involved CHA and peer educators. The objective was to get close to the population that is susceptible to contracting CHD by giving information about the disease at cultural events or crowded meetings . Finally, the in situ screening interventions went a step further than community events by bringing both health information and screening closer to this susceptible population during their free time. This made easier for patients to take the test without having to travel far or go to the health center during their working hours. --- Microbiological testing and follow-up The microbiological testing of the blood samples obtained during screening has been performed using one recombinant antigen EIA . All of the samples with an index >0.9 were also tested simultaneously for one lysate antigen EIA . Both techniques had to be concordant in with an index >0.9, to be considered a reactive serology. After the confirmation of a positive result, the CHD contacted the patients by phone or by person to attend the USIDVH. Access to antiparasitic treatment for CHD is universal in our healthcare setting, so patients were able to start their treatment just after their first clinical visit. They received cardiac and digestive tests in this first visits, to now the extension of CHD. Patients received medical and bio-psychosocial follow-up during the treatment and afterwards, first on a week basis and afterwards every 15 days. --- Statistical analysis The --- Workshops Community Events In Situ Screening --- Recruitment and preparation Different organizations are contacted and meetings are set up to establish a network of contacts. Interested parties are contacted to attend the workshop. The event is chosen and the organizers are contacted. The necessary logistics for the event are prepared: personal , along with educational and other materials. A mobile unit for blood sampling is also brought to the event. --- Information and recruitment for the screening The workshop is conducted on the property of an association or at USIDVH. The general characteristics of Chagas disease and its impact at different levels is discussed, using materials from www.beatchagas.info. When the workshop is finished, the participants are offered the possibility of being screened for Chagas at USIDVH or other health centers in Barcelona. An informative stand is set up at the event, at which the CHA and community multipliers inform others about the activity and Chagas disease. People are informed about Chagas disease and the possibility of screening for Chagas at USIDVH or in other health centers in Barcelona. People are informed about the disease and given surveys to assess their prior knowledge. Those that wish to be screened are accompanied to the mobile unit, where healthcare professionals conduct an interview. --- Scheduling and screening The professionals take note of the information of those who want to be screened, to contact them afterward. Visits are scheduled after contacting patients by phone. The visit to USIVDH occurs, following the normal protocol for Chagas disease screening. Blood samples are taken and processed in the laboratory. The patients are scheduled for follow-up visits to get their results. Blood samples are taken and processed by the USIDVH lab. The patients are told that they will receive a phone call from USIDVH about the results or to schedule an appointment at the health center. --- Results and follow-Up The blood samples are processed in the microbiology lab at the Vall d'Hebron University Hospital. Follow-up is conducted according to the results obtained 1 : • When the test is negative, the patient is contacted by phone and informed. • When the test is uncertain the patient is scheduled and a new blood test is performed. • If the test is positive, the patient is scheduled at USIDVH to undergo supplementary tests to determine the possibility of cardiac and/or digestive affectation, begin antiparasitic treatment, and follow-up. 1 The positive diagnosis is based on the consistency of two different and simultaneous techniques for the detection of anti-trypanosoma antibodies: one with a recombinant antigen and another with an antigen lysate ORTHO T. cruzi ELISA, Johnson & Johnson, USA). --- CHA-Community Health Agents; USIDVH-International Health Unit Drassanes-Vall d'Hebron. https://doi.org/10.1371/journal.pone.0235466.t002 --- Ethics statement All participants gave oral consent to participate to the interventions and were actively enrolled to the community interventions once they received information about the activity. All patients who were screened gave oral consent to undergo the screening test as part of the health center's routine screening protocol for CHD. Each patient's consent was documented in their computerized medical history. The procedures performed during the screening are the ones recommended by the WHO. Data were analyzed after the completion of all the activities as a retrospective comparative analysis. Patients' written consent was not possible to be obtained retrospectively because it was difficult to contact all of them. All patients' data were codified and analyzed anonymously. No data containing personal or identifying information from the participants have been published. Vall d'Hebron Hospital Ethics Committee approved the study as a report of the results derived from regular clinical practice. --- Results --- Construction process of the community strategies 2004-2005: Clinical approach. Between 2004 and 2005 the first diagnosis of CHD in Barcelona were made, through a process of protocol, in the frame of a research project [13]. In this multi-focused study, an elevated percentage of participants were found to be infected with T. cruzi [13], demonstrating the existence of the disease in the area and its repercussions on public health. This fact subsequently led to the publication of a document in consensus that was related to the diagnosis and treatment of imported CHD [16] in our surroundings in 2005. This document highlights the need to screen for T. cruzi in blood banks and in pregnant women. The document also shows the importance of working on awareness and training of health professionals to be relevant to carrying out the screening in health centers that specialize in tropical medicine. Likewise, in the following years, recommendations were published about possible cardiac and digestive effects [17,18]. 2006-2007: Socio-anthropological approach. After the clinical approach and its phases have been defined, the need to provide psyco-social support to these patients was detected [19] as a consequence of the daily assistance given to affected people and their family members. Between 2006 and 2008 a qualitative study was performed with the goal of understanding the meaning of CHD for Bolivian people in a migratory context [5]. From this study, several key themes were highlighted: the perception of inevitable death related to CHD, the fear of receiving the diagnosis of the disease, and, consequently, the limited willingness of patients to perform CHD diagnosis tests. The close link that is formed between death and CHD made it essential to question and revise how we establish contact between the patient and the health system, given that there is a confirmed lack of access from a social point of view. 2008-2009: Approach from the fields of community health and public health. The formation of ASAPECHA in Barcelona in 2008 made it possible to unite carriers of the disease, family members, friends, and people with CHD. It guaranteed access to information about integral treatment in health and social services in a non-endemic context. At the same time, communication networks between the healthcare systems in the countries of residence and countries of origin were promoted. In addition, the existing communication and information networks throughout the world were reinforced by emerging new groups of affected people, such as the group in Barcelona, to promote a coordinated effort. On February 24 th , 2008, the publication of the news article "Chagas: The Silent Disease" in the newspaper El Latino, distributed in Spain, caused a rise in visits to USIDVH by people who come from areas where CHD is endemic, along with a rise in the number of diagnoses of CHD. That summer, another activity was held about the spread of the disease and the importance of screening during the Bolivian Heritage Festival, at the ASAPECHA/eSPiC stand. During this period, the Government of Catalonia began the compilation of the "Protocol for screening and diagnosing Chagas disease in pregnant Latin American women and their newborns" [20]. The Catalan Institute of Health , the leading healthcare service provider in Catalonia, also expedited requests for serology in the face of T. cruzi for all family doctors in the primary healthcare network. In addition, the clinical pathways were consolidated and screening protocols were stablished for people suspected of suffering from CHD [16,17,[19][20][21][22]. 2010-2011: Integral approach. In this period, activities started being held during public community events and educational materials were produced in collaboration with institutions that specialize in the health field, predominantly eSPiC of USIDVH [23]. The work of previous stages was also consolidated by the participation of health professionals, eSPiC, and ASAPE-CHA in five celebrations put together by Latin American communities in the city of Barcelona. These three entities also monitored patients, not only at the clinical level but also at the psycho-social level. In the year 2010, FINDECHAGAS was created, a federation in which ASAPECHA participated regularly. In Catalonia in 2011 the ICS [24] implemented the "Expert Patient in Chagas Disease Program" with the support of the WHO. The methodology that was followed in the sessions was established in the protocol of the "Expert Patient Program" [25], which has been used for other diseases and was adapted to the distinct features that CHD has. In this program, a patient with a diagnosis of CHD, trained with the eSPIC team, acts as an "expert patient" and trains and guides a group of newly affected patients. The goal of these sessions was for peers to inform and educate each other about CHD and to increase the knowledge and self-esteem of recently diagnosed participants. Furthermore, the sessions achieved greater participation and involvement of people in CHD awareness, either through ASAPECHA or through their participation in different community interventions. 2012-2013: Global approach. In April of 2012, the project PROSEVICHA was presented. Its goal was to make the public aware of the reality of people affected by CHD by showing the complex problems that affected people experience in different contexts with regard to access to diagnosis and treatment. To achieve this goal, different songs were prepared along with two publicity videos [15]. On April 14th 2013, the "First Commemoration of the International Chagas Disease Day in Barcelona" was held, together with ASAPECHA, FINDECHAGAS, and the MundoSano-España Foundation. At this event, which was held at the USIDVH, two parallel strategies were used: one for screening people who came from endemic countries, and another for promoting awareness and information for representatives of social, political, and healthcare entities. This way made it easier to promote access to diagnosis among the Latin American immigrant population, and to spread awareness of the importance of diagnosis and control at the individual, group, community, and institutional levels. The event was publicized in places where socialization among the Latin American population is common . Informative pamphlets, word of mouth, communication media , and invitations to representatives of those entities were used to spread word of the events. This was done with the support from healthcare personnel, administrative personnel, CHA, and members of ASAPECHA. --- Process of implementing strategies to improve access to diagnosis and treatment of Chagas Disease: Community interventions . The three community interventions that are described below were established as a result of the work done previously between 2004 and 2013 . Between 2014 and 2017, 1,621 people in the city of Barcelona received intervention by the USIDVH, of which 1,101 underwent the diagnostic screening test for T. cruzi. Of all the people screened, 196 people have been diagnosed with CHD. More women than men participated in the different community strategies implemented. The majority of the participants were from Bolivian origin . Between 2014 and 2017, 41 workshops were performed in community centers and health centers. In total there were 313 attendees, of whom 87.54% requested an appointment to be visited at the USIDVH. A total of 58.03% of the patients were screened, being CHD diagnosed in 33 people after two positive blood tests for T. cruzi. USIDVH and eSPiC also participated in 12 community awareness campaigns between 2014 and 2017: celebrations of Bolivian Mother's Day, the Festival of the Alasitas, and the Consulate 3). The results obtained show that the number of people who request an appointment after doing the workshop is higher than those who do so after community events , despite the fact that no significant differences wereobserved . Clear differences do exist between the three strategies in terms of the percentage of screening tests carried out . The largest number of patients screened occurred atthe in situ screening interventions; the lowest number occurred in the community events, with 112 people screened . However, the greatest number of diagnoses was made among the participants in community events and workshops . The prevalence of infection found is similar among the three strategies, ranging from 16.63% to 22.32% of the screened patients, with no significant differences . It is worth highlighting that there was a higher percentage of women participating in the different interventions conducted compared to men, ranging from 54.76% to 81.43, with no statistical differences regarding the type of intervention . --- Discussion The first years of work fostered the establishment and reinforcement of the three types of community interventions thatwork was focused during subsequent stages. The increase in disease detection and parallel improvement in the quality of both individual and collective care, which were both results of the different approaches taken initially, were determinant factors in decidingon the community interventions to be carried out starting in 2014. The final goal was integral care for people affected by CHD by cultivating an improvement in their quality of life [7], as has been observed. The results obtained in the three community interventions conducted starting in 2014 show differences between each other regarding the number of participants and the total of screenings performed, although those differences were not statistically significant. The participants that the interventions focused on were principally of Bolivian origin, since previous studies in Europe verify that there is a higher prevalence of CHD in this group [3,26]. We observed a larger percentage of women participating in all of the interventions conducted. Other publications had already shown that there was more participation among women than men, both in the awareness events and in their interest and need to perform the screening in relation to Chagas [24,27,28]. According to previous studies, women show more concern and interest in screening, mainly because of feelings of guilt, worry, and responsibility for the potential transmission of the disease to their children [5]. As congenital transmission of CHD is well known and women are conscious of it, this may lead to and increased participation of women in the interventions which is also crucial to control this way of transmission. The potential number of people reached depends on the chosen strategy. The in situ screening interventions allow us to reach a greater number of people, but also require a greater effort in terms of people and organization, as can be observed in Table 2. Likewise, the community events allow more people to be accessed even though the event is limited to being informativeeducational because of the lack of possibility of in situ diagnosis; with the idea of setting up an appointment later on. In reference to the workshops, the investment of time is higher and fewer people are reached. Nevertheless, the results obtained show that the percentage of people who request an appointment after doing the workshop is higher than those who do so after community events , even though no significant differences have been observed . This suggests that the workshops, since they are an educational activity with fewer participants, allow for greater understanding of the disease and its current predicament and, at the same time, allow for a more detailed follow-through with scheduling appointments. At the community events, educational actions are more difficult, since we must speak to many more people over a smaller period of time, limiting it to an action that is merely informative without follow-up. Regarding access barriers to screening, the interventions were performed were adapted to suit the community. They were done close to the homes and workplaces of the Latin American community during non-working regular hours, thus facilitating access of those who were interested. Relevant differences are made evident among the three community interventions in terms of completion of the screening. In the case of in situ screenings, the percentage of screened people was higher than that observed in the rest of the interventions. This is because the main objective of this type of interventions is to complete the screening in a specific population at the time of intervention, with the overall goal of improving follow-up and adherence of the patients to their integral treatment. When the patients undergo the diagnostic test in the intervention, they are closely linked to their follow-up treatment. Once the screening test had been performed, the results were given by phone call, minimizing the number of visits at the clinic. In case of positive result and need of treatment and follow-up visits, clinic schedules were very adaptable to patients. The patients with a positive result were given a medical appointment in our clinic, having been located and advised by the same community healthcare team that had intervened at the events. This helps form bonds of trust and cultural adaptation, which had already begun at the festival In the different published studies, we observed difficulty with both recruitment and followthrough. In a study conducted in Italy, 1305 people were screened as a result of screening workshops. Of those screened, 223 people had Chagas, and there was a large number of patients lost in the follow-through [28]. In relation to follow-up and the benefit of the intervention on the part of the community health team, the study completed in Barcelona in the frame of the congenital CHD program showed that of the total number of newborns that should have been screened according to protocol, 42 were not screened. The team of CHA, through community interventions, recovered 30 of them, leaving only 7% of patients who still needed the screening recommended in the protocol [29]. Another study done in Madrid shows how out of 352 participants in relevant talks, 276 were tested immediately for T. cruzi [30]. Because of these facts, in our interventions we observed a higher percentage of people screened during the in situ screening, followed by the workshops , and finally by the community events . This suggests again that the educational piece behind the screenings and workshops is better than that of the community events, reinforcing the idea that the community events are limited to being simply informative actions. The fact that CHD it is a disease in which psycho-social aspects play such a relevant role means that it is very necessary to approach it from an educational point of view, to transform a collective conscience affected by stigmas brought from the past. Also, the higher number of persons screened in the in situ screening interventions shows that facilitating the access to screening tests, as performing them in cultural/social events and in non-working days, increases the accessibility to potentially CHD affected patients. Finally, the prevalence of disease in the three types of interventions are similar , although there are differences that deserve to be highlighted. We observed a prevalence of 22.32% in the community events; of 20.75% in the workshops ; and of 16.63% in the in situ screening . Previous studies conducted in Catalonia by the Catalonian Blood Bank showed a seroprevalence of T. cruzi infection of 10.2% in Bolivian donors [31]. In published studies, the prevalence of CHD observed among the Bolivian population living in Europe is 18.1% , which differs from the prevalence of the rest of the Latin American population that lives in the territory in which is 4.2% [26]. In Spain, a prevalence of 27.7% has been described among Bolivian population [27]. The higher prevalence observed in our study, compared to the seroprevalence study among Bolivian donors, is attributable to the fact that our interventions were designed to reach at-risk patients, where self-considered patients at risk will be more likely to attend to the interventions and to the screening. Since there was little informative time and minimal educative action in community events, only those that seemed most at risk of being affected were reached. This means that there could be a selection bias in the intervention and that the other interventions could carry the same selfselection. The collaborative work between team members facilitates the implementation of the abovementioned strategies, complementing clinical and social aspects. CHA are responsible for establishing social networks and contacts; expert patients/peer educators are in charge of informing and educating the participants; public health nurses and doctor take care of the strategy and its implementation; and the clinical team handles the clinical aspects, including diagnoses, treatment and follow-up. We believe that the success of our interventions owes itself to the fact that eSPiC relies on a team of CHA that understand the particular features of the Latin American community, specifically the Bolivian community, and knows their social networks and meeting places. Therefore, they were able to get past some of the psycho-social barriers that impede the population that is susceptible to suffer from CHD from accessing necessary medical attention [32]. Additionally, the "expert patients" and the peer educators completed the effort by approaching the needs and perceptions of the population that is likely to suffer from CHD. All those involved in the planning and execution of the strategies played key roles, and without them it would not have been possible to achieve such successful results. These interventions have been set within a more integral framework of information, education and communication which has been conducted since the very beginning of the present study in eSPiC, becoming education necessary to overcome these psycho-social barriers [33]. Programs like this have also been used successfully for other diseases such as HIV in adolescents and in other types of healthcare, such as primary care and mother/child healthcare [34][35][36]. This suggests that the presence of CHA improves the effectiveness of the community interventions. As for the limitations of the study, it should be noted that we do not have information on the total number of attendees at the community events in which in situ screening interventions were performed. Data collection was planned after the project began, so some variables that could have been of great interest were not gathered, such as: age and sex, both in those visited at USIDVH but also among those screened or affected by CHD; number of pregnant women participating in the different interventions; country of origin; socioeconomic and demographic data; etc. This information is very difficult to collect retrospectively. In this sense, data were also not registered systematically and prospectively, causing missing information. If the data collection had been done in a way that made this information available, the study would be much more informative and the impact could be assessed in a more accurately. There is also some possible bias present in this study regarding missing information, as the populations in the different interventions are assumed to be comparable and they may not be. Considering that the majority of the participants were from Bolivia, the results obtained may be interpreted cautiously when extrapolating to other endemic countries, as socio-demographic characteristics may be different. In our context, the migratory experience transforms the perception that people have of themselves and of CHD [19]. It is important to prevent people from being stigmatized once they contract the disease, since this can reinforce the process of social exclusion. For this reason community work becomes very important, as it helps reverse these perceptions and social exclusion. Active and organized participation of affected patients contributes significantly in the prevention and awareness of the disease. The characterization of the different community interventions available to increase detection of cases of CHD, based on the context and the reality of the different populations, is an opportunity to optimize the different screening strategies. It is necessary to adjust resources and improve efficiency in order to increase the number of patients diagnosed and improve the follow-up care of those affected. The choice of the strategy should consider different aspects, such as the possibilities in terms of resources and knowledge of the teams involved, the available social network, the presence of civil society organizations, the barriers on access to healthcare for those affected regarding their administrative situation, etc. Nevertheless, our results suggest that when the prevalence of CHD is unknown in the targeted groups, the community event strategy should be prioritized because it allows reaching a large and diverse audience, to access equal or better prevalence of disease, and it requires fewer people and materials for the intervention, which should be less expensive and more effective. When the prevalence of CHD in a certain population is known to be high, the most adequate strategy is the in situ screening, along with the workshops using CHA, peer educators, community leaders, and associations. In our opinion, it would be advisable to conduct cost-efficiency studies to better understand, and be able to exactly quantify, the cost of these interventions related to their impact in accordance with the prevalence of disease in a specific environment. --- Conclusion The community intervention strategies in different non-endemic contexts should be adapted, both in their preparation and their execution, to the characteristics of each context. An intervention based on the community that involves community health teams, including health professionals, CHAs and peer educators can be more effective than the habitual routine of health centers. This is because of the psycho-emotional and socio-anthropological characteristics of CHD, and because of the fact that the community health teams, CHA and peer educators are experts in this approach and have access to resources and strategies that are adequate in this situation. These approaches allow for bonds of mutual trust between professionals and the community that could be helpful in the future development of health promotion strategies. --- The study involves participant data that contains potentially identifying and sensitive patient information, and public sharing may compromise participant privacy. Therefore, --- --- Data curation: Jordi Go ´mez i Prat, Paula Peremiquel-Trillas, Carlos Ascaso Terren. Formal analysis: Paula Peremiquel-Trillas. Funding acquisition: Jordi Go ´mez i Prat, Juan Jose ´de los Santos, Pedro Albajar Viñas. --- Investigation
Chagas disease presents bio-psycho-social and cultural determinants for infected patients, their family members, close friends, and society. For this reason, diagnosis and treatment require an active approach and an integral focus, so that we can prevent the disease from creating stigma and exclusion, as is actively promoting access to diagnosis, medical attention and social integrationThe study was conducted in the Metropolitan Area of Barcelona (Catalonia, Spain) from 2004 to 2017. After an increased detection rates of CHD in our region, the process of construction of community strategies started (2004)(2005)(2006)(2007)(2008)(2009)(2010)(2011)(2012)(2013). Different community interventions with informational, educational, and communication components were designed, developed, implemented, and evaluated. The results of the evaluation helped to determine which intervention should be prioritized: 1) workshop; 2) community event; 3) in situ screening. Afterwards, those strategies were implemented (2014)(2015)(2016)(2017).Each of the three strategies resulted in a different level of coverage, or number of people reached. The in situ screening interventions reached the highest coverage (956 persons, 58.98%).Clear differences exist (p-value<0.001) between the three strategies regarding the
Background Maintaining the ability to move is fundamental to health and social participation for older adults. Individuals with mobility limitations are at increased risk for illness and injury [1], being homebound or institutionalized [2], and experiencing reduced quality of life [3]. While the prevalence of mobility limitations differs depending on how mobility is defined and measured, mobility issues are common and represent significant problems for many older adults. 40% of older Americans report severe or moderate limitations related to difficulties with balance, walking, and climbing stairs [4] and 24% of Canadians aged 65 and older report limitations in daily activities such as moving around [5]. Older adults are at greater risk of functional limitation when they stop driving a vehicle [6,7], and those who no longer drive often have difficulty continuing to be active in the community [8]. While mobility limitations are common in the general older population, physical impairments such as reduced strength and range of motion are prevalent in people with hip and knee osteoarthritis , often resulting in specific functional limitations in walking [9]. People with OA are at increased risk for poor health [10], and higher levels of OA pain are associated with restrictions in lifespace mobility [11]. It is important to understand factors that contribute to mobility limitations to improve health and well-being at individual and societal levels. Webber and colleagues introduced a theoretical framework to portray components that influence mobility across different life spaces expanding from the home to broader communities [12]. This framework suggests that mobility is influenced by financial, psychosocial, environmental, physical, cognitive, and personal factors. Many studies have used the theoretical framework [12] to examine mobility in older adults. For example, a recent cross-sectional study in the United States demonstrated numerous variables representing key determinants in the framework were significantly associated with life space [13]. Personal, physical, and psychosocial factors explained 23.8% of the variance in self-reported life space attainment. Canadian Longitudinal Study on Aging analyses demonstrated that variables representing personal, physical, psychosocial, and cognitive domains were all correlated with life space [14]. Relationships have also been examined with objective mobility data collected with smartphones in older adults [15]. Most variables representing personal, psychological, physical, social, and cognitive domains were significantly correlated with one or more of the objective measures . Despite widespread use of the theoretical mobility framework, only one study has examined its validity using structural equation modeling . Umstattd Meyer and colleagues used SEM to model personal mobility and community mobility in 6,112 older Americans [16]. The final model demonstrated direct associations between personal, environmental, physical, and cognitive factors with mobility. Finances did not contribute substantially in the presence of other predictors, and psychosocial aspects exerted influence through relationships with cognition. SEM is a powerful analytical tool that tests hypothetical relationships between theoretical constructs and between the constructs and their observed measures [17]. Because SEM considers multiple variables simultaneously and uses latent factors which reduce measurement error, it is superior to other correlation analyses such as regression [17]. Many researchers have demonstrated relationships between one or more specific personal, cognitive, physical, psychosocial, environmental and financial factors with life space mobility . However, model verification using SEM allows for multiple indicator variables and covariates to be examined together, and to determine relationships between indicator variables and latent factors. This provides information about direct and indirect associations with life space mobility and provides additional insight into relationships among latent factors. It is important to determine whether the theoretical framework can be applied to real world data, i.e., to see if relationships are as proposed. This type of evaluation can provide valuable information to clinicians , and to researchers by providing further knowledge to frame and conceptualize life space research focusing on important contributing factors and impactful interventions. Community agencies that promote programs for older adults and policy makers also benefit from having a comprehensive understanding of the inter-play of factors that influence older adults' abilities to engage in activities with differing mobility requirements. In this study we were interested in verifying the theoretical mobility framework with data from the large CLSA data set [20][21][22]. Our objectives were to estimate associations between latent factors associated with life adults and their abilities to access communities beyond their homes need to reflect the complexity of factors that influence life space mobility at both individual and societal levels. Keywords Ambulation, CLSA, Life space, Transportation space mobility in older adults 65-85 years of age and in adults with OA . --- Methods The CLSA population-based longitudinal study includes two cohorts aged 45-85 at baseline [20][21][22]. People excluded from participating included those unable to communicate in English or French, people living in long-term care and those with cognitive impairments, full-time members of the Canadian Forces, and individuals who resided in the three Canadian Territories, on Federal First Nation Reserves and in First Nation settlements [20][21][22]. The CLSA protocol was approved by 13 research ethics boards in Canada. All participants provided informed written consent. Ethics approval for this secondary analysis of the CLSA dataset was obtained from the Health Research Ethics Board at the University of Manitoba ). --- Study samples Samples for this study were obtained from the 30,097 participants in the CLSA Comprehensive Group . Data were obtained from the following sources: In-Home Baseline Questionnaires; Data Collection Site Questionnaires; Physical Assessments at Data Collection Sites; and Maintaining Contact Questionnaires . We developed models for people 65-85 years of age , and people with OA aged 45-85 . --- Measures Items from the CLSA data set representing the five categories of mobility determinants in the theoretical framework [12] characterized the same five latent factors in our models. The sixth latent factor was life space mobility. Detailed information about CLSA questionnaires and physical assessments is available on the CLSA website [21] and in the cohort profile manuscript [22]. Indicator variables contributing to latent factors are listed in Additional file 1 . Our conceptual model of life space mobility is shown in Fig. 1. In this study, individuals who answered yes to "Has a doctor ever told you that Fig. 1 Conceptual model of life space mobility you have osteoarthritis in the hip?" and/or "Has a doctor ever told you that you have osteoarthritis in the knee?" in the Comprehensive Site Questionnaire were considered to have OA. Life Space Index scores were calculated so that 120 represented the highest possible level of life space attainment [23]. For the dependent variable, the latent factor life space mobility was measured by the ten items in the Life Space Index [23] and one measure representing the most common form of transportation used in the past year. Fifteen measures contributed to the latent factor representing physical capacity. These included self-reported items reflecting frequency and average hours per day spent walking, engaging in resistance exercises, and participating in light and moderate intensity physical activities. In addition, participants provided information about types and numbers of comorbidities and the number of times they had fallen in the past 12 months. They reported on intensity of pain experienced and whether pain influenced participation in activities. Physical assessment measures included Timed Get Up and Go , gait speed , chair rise test , single leg stance for balance, and grip strength [21]. Psychosocial influences included the presence of anxiety, frequency of feeling depressed, and frequency of feeling lonely. The availability of social supports and frequency of community-based activity participation were included along with a measure of whether fear of injury contributed to lack of participation. Environmental factors included rural/urban status and fear of walking alone after dark in their local area. Financial influences were assessed through two questions: total household income, and how well income satisfied basic needs. Cognition was represented by scores on the Rey Auditory Verbal Learning test [21] and the Mental Alternation Test [24]. The mobility framework [12] depicts gender, culture, and biographical influences surrounding all mobility determinants. We included the covariates of age, sex, and level of education in our model to portray cross-cutting factors. --- Statistical analyses The data were analyzed using SEM in R 3.6.3 for Windows with the lavaan package. Ordinal items in the measurement models were recoded so higher values indicated better conditions. Observations of "Don't know", "No Answer", and "Refused" were treated as missing. Eight instances of extreme observations were also treated as missing. Missing data in observed variables in the measurement models were addressed using pairwise deletion and missing data for covariates in the structural models were addressed using listwise deletion. The percent of missing data in all observed variables was less than 10%, except fear of injury preventing participation which was > 30% for both groups. Missing data for covariates in the structural models resulted in about 7% of data being removed from the analysis for the 65 + group and 6% of data removed for the OA group. Before modeling, five continuous variables were rescaled to avoid potential problems caused by large differences of variance. Descriptive statistics were generated and correlation coefficients for all pairs of variables were calculated to check for collinearity among observed variables. One Life Space Index variable representing the frequency of getting to places outside an individual's town was not included in the latent factor because it was highly correlated with the variable representing use of aids, equipment, or help from another person to get to places outside one's town . Weighted least square mean and variance estimator with delta parameterization were used to estimate SEM parameters from unweighted CLSA data [25,26]. Model fit was evaluated using robust chi-square test and comparative fit index , root mean square error of approximation and its 90% confidence interval [27]. The criteria of good overall fit were CFI ≥ 0.9 and RMSEA ≤ 0.08 [27]. First, measurement models were investigated to check if latent factors in the theoretical model were properly constructed using the CLSA variables. Second, a structural model with all measurement models allowing covariances among the latent factors was fit. Then, the covariates were added to the structural model. Modifications in the models were based on modification index [28] from lavaan and knowledge of related literature. To investigate if the latent factors were represented in the same way across males and females and across younger and older age groups , the measurement invariance test was conducted using multi-group analyses. --- Results --- Participant characteristics 65 + group and OA group Participant characteristics for the 65 + group and the OA group are presented in Tables 1 and2, respectively. The 65 + and OA groups overlapped; 57.0% of individuals in the OA group were 65 years of age and older, and 26.5% of people in the 65 + group had OA of the hip or knee. --- Goodness-of-fit of SEM for 65 + group Items included within latent factors were correlated with each other, suggesting the makeup of latent factors was reasonable. See Additional file 2 for details. This was true except for the environmental factor where the two items were not correlated with each other . Because there were small cells in the item for the frequency of getting to other rooms in the home , this item was removed along with the item for use of aids to move between rooms. The measurement models for life space mobility, physical, psychosocial and cognitive factors had good fit to the data . These four measurement models, along with the environment latent factor with two indicators and the finances latent factor with two indicators were included in the SEM allowing covariances among latent factors. This model had good fit = 0.030 ), however, the factor loading on rural/urban from the environmental factor was close to zero . So, instead of including environment as a latent factor, the variable associated with feeling afraid to walk alone after dark was treated as a covariate in the structural model. Next, physical, psychosocial, cognitive, finances and fear of walking alone after dark were included in the structural model. The model demonstrated good fit = 0.027 ) but finances was not significantly related to life space mobility. As documented in previous literature, financial status affects physical and psychosocial health [29]. Therefore, a model that assumed an indirect effect of finances on life space mobility, acting through physical and psychosocial factors, was tested and was found to have good fit = 0.028 ). Age group was then added to the structural model as a predictor for the physical, cognitive, and finances factors; and education was added as a predictor for cognition and finances. Age has been shown to influence physical function through its effects on multiple body systems, resulting in decreased strength, flexibility and cardiovascular endurance with increasing age, for example [30]. Age negatively affects cognitive processing speed, reasoning, memory and executive functions, and the presence of common age-related conditions may accelerate cognitive decline [31]. As people retire from the workforce, household income is usually reduced and financial well-being may change depending on demographic factors, whether retirement was planned or unplanned, pensions and personal savings levels [32]. Literature supported adding education as a predictor for cognition [33] and finances [34]. Sex was highly correlated with grip strength , therefore we did not include sex as a covariate. This final model had good fit = 0.025 ). Measurement models are in Additional file 4 . In the final model, three latent factors and the environmental variable were directly associated with life space mobility; and one latent factor , and two variables were indirect influences. People aged 65 years and older with better cognitive, psychosocial, and/or physical health had greater life space mobility. Participants who were less afraid to walk after dark in their local area also demonstrated greater life space mobility. People reporting higher finances had greater psychosocial health and physical health. Higher education was related to better cognitive function and higher finances. Older age was associated with lower financial status, cognition, and physical health. All levels of measurement invariance were retained across sex , indicating latent factors were measured in the same way in males and females. --- Goodness-of-fit of SEM for OA group Similar to the model for the 65 + group, items included within latent factor groupings in the OA group were correlated with each other, except for the two items representing environment . Because there were empty cells in the item for frequency getting to other rooms in the home, this item was removed along with the item for use of aid to move between rooms. The measurement models for life space mobility, physical, psychosocial and cognitive factors had good fit . These four measurement models were Next, the final model generated for the 65 + group was fit on the data for the OA group. This model did not have adequate fit = 0.047 ). Cognition was not significantly related to life space mobility, however it has been shown to be associated with physical capacity [35], therefore, a model that assumed an indirect effect of cognition through physical was fit. This model also did not have adequate fit although goodness-of-fit increased substantially = 0.033 ). As suggested by the modification index and with support from the literature, physical health was allowed to regress on the variable representing afraid to walk alone after dark [18,36]. This final model had good fit = 0.032 ). The final structural model is shown in Fig. 3 and the measurement models are in Additional file 8 -Additional Fig. 2. In the final model for the OA group, latent factors for psychosocial and physical, and the environmental measure were directly associated with life space mobility; finances, age, education and cognitive measures were indirectly associated with life space mobility. People with OA who had better psychosocial health and/or physical health had greater life space mobility. Individuals who reported feeling less afraid walking after dark had greater life space mobility and better physical health. Higher cognition was related to better physical health. Participants with stronger financial situations had better psychosocial health and physical health. Higher levels of education were related to higher cognition and higher financial status. Older age was associated with lower financial status, cognition, and physical health. Measurement invariance at all levels was retained across male and female groups and across older and younger age groups . Therefore, the measurement of the latent factors were the same across sex and age groups. --- Discussion Models generated with CLSA data verified Webber et al. 's theoretical framework, demonstrating many latent factors that influence life space mobility directly, and others that act indirectly [12]. This represents the second time SEM has been used to evaluate the mobility framework and the first time the outcome of life space mobility has been examined using SEM. Verifying the framework using different sources of data provides additional information about the utility and potential generalizability of the framework. Umstattd Meyer and colleagues modeled personal and community mobility with U.S. Health and Retirement Study data ) [16]. They found associations between mobility and personal, physical, psychosocial, environmental, and cognitive factors. Financial status was not related to personal or community mobility. Umstattd Meyer's community mobility measure was limited, reflecting only driving habits and availability of a vehicle. CLSA data included many forms of transportation and many life space destinations [16]. Participants in the CLSA and in the U.S. Health and Retirement Study also differed significantly in terms of education. More than three-quarters of the United States sample were educated at the level of high school diploma, whereas 80% of CLSA participants had some post-secondary education. These distinctions, along with different variables used to represent latent factors likely explain discrepancies in the resultant models. Using SEM allowed for inclusion of multiple self-report and observed indicator variables and covariates to be assessed together. Our model for the 65 + group demonstrated direct associations between life space mobility and psychosocial, physical, environmental, and cognitive factors. Variables contributing to psychosocial health in the CLSA data set included measures of depression, anxiety, loneliness, frequency of community activity participation, level of social support and fear of injury influencing participation levels. Literature supports a relationship between psychosocial aspects and mobility. Depression [19,37], and low levels of social engagement outside the home along with less frequent use of telephone/internet for social purposes [38] are associated with restricted life space. Similarly, lower levels of receiving and giving social support, and smaller social networks and/or less frequent social engagement limit life space mobility [19]. Fear of falling, a psychological factor, was found to be associated with life space mobility in community dwelling older adults in four countries, including Canada [39]. Literature also supports the positive association between physical factors and life space mobility as depicted in our models. For example, Dunlap et al. found significant positive associations between Life Space Index, gait speed, lower extremity power, and 6MWT distances achieved in community-dwelling older adults [13]. Poor balance was associated with lower life space scores. Another study reported low levels of overall physical activity and daily step counts in older adults with restricted independent life space attainment [40]. Similar to Umstattd Meyer et al. , we found that feelings of greater safety in the neighborhood were associated with greater mobility. Other environmental aspects have been shown to be related to reduced life space mobility in cross-sectional studies including the presence of high curbs, dangerous cross-roads, and winter weather [41]. Limited outdoor mobility is also associated with poor sidewalks, heavy traffic, inadequate lighting, lack of benches along routes, and long distances to services [42]. Efforts should be made to continue to collect environmental variables in comprehensive ways to inform future research. Relationships between cognition and life space mobility are equivocal. Some studies have demonstrated life space restrictions in people with lower cognitive functioning [41,43], while other findings suggest cognition and life space may not be directly associated; depression, locus of control, gait speed and grip strength can act as intervening mediating or moderating factors [44]. Of note, while the 65 + model demonstrated a direct relationship between cognition and life space mobility, this was not true for the OA model. In the OA model, cognition influenced mobility through associations with psychosocial and physical health. Social frailty, a state of limited social resources and limited social activities or abilities important for meeting social needs [45] is closely tied to executive function and together, social frailty and cognition can influence life space [46]. Positive associations between cognition and physical health in older adults are also well-substantiated [47]. In one meta-analysis of 26 cross-sectional studies including 26,355 participants, measures of physical capacity were significantly associated with global cognition [48]. Our model for the 65 + group demonstrated indirect associations between education, finances, and age group with life space mobility. Previous studies support these relationship findings. Research has demonstrated that higher levels of formal education are positively associated with income [34] and cognitive function throughout adulthood [33]. Literature also supports relationships between finances with psychosocial and physical health. Financial insecurity has been linked to poor mental and physical health [29]. Age has been shown to be negatively associated with physical [30] and cognitive health [31], with household income usually declining as people get older [32]. The theoretical framework suggests that personal factors such as gender, culture, and biographical influences may also impact mobility [12]. Umstattd Meyer et al. found gender was not related to personal and community mobility [16]. Unfortunately, gender was not included in CLSA baseline data acquisition. While the CLSA data did include sex, we were unable to include sex in our models because it was highly correlated with grip strength. However, testing for measurement invariance demonstrated the latent factors were measured in the same way across male and female sex categories in our models. Other personal factors and finances were also indirectly associated with life space mobility as supported in previous literature [49,50]. Structural models for the OA group and the 65 + group were similar. Indeed, there was significant overlap in the samples. Verifying the comprehensive framework in these two samples of older adults provides further information about the utility of the framework. The fact that the models were very similar suggests that life space mobility models for older adults with other chronic conditions may show similar relationships between constructs. We found that cognition was directly related to mobility only in the 65 + group, perhaps reflecting relatively greater influence of cognition on life space attainment in these individuals who were slightly older. The OA model included positive associations between cognitive and physical health , and the OA group had higher levels of pain intensity and activities prevented by pain . Research has demonstrated a reciprocal relationship between cognition and chronic pain, such that modifying one's thinking/attention may regulate pain perception and conversely, chronic pain may interfere with cognitive processes [51]. There was also a positive association between feeling less afraid to walk alone after dark and physical health in the OA model. Individuals with OA affecting the hip and/or knee typically experience limitations in walking [10], which may make them feel more vulnerable and exacerbate fear of walking alone after dark. Several implications for clinical practice, research, and policy development are suggested by findings from this study. Measures contributing to the physical capacity latent factor included common assessments conducted in rehabilitation and research settings and questions pertinent to a physical activity history . Results reinforce the importance for clinicians to measure physical capacity, to focus treatments on improving walking capacity, to take a comprehensive history, and also give direction regarding the types of outcome measures and targeted interventions that should be utilized. Findings encourage clinicians to think beyond the influence of physical factors on mobility. The fact that cognition and psychosocial factors were also directly associated with life space mobility in the 65 + model emphasizes the value of a thorough assessment that takes into consideration depression, anxiety, social supports, extent of community-based participation, and memory abilities. The multitude of factors that influence life space mobility should encourage clinicians and researchers to work in interdisciplinary teams to address needs of older adults. Recognition that finances and education indirectly affect life space mobility is important for researchers , and for policy makers and community organizations . The complexity of factors associated with life space mobility beseeches inter-connected societal approaches to improve or maintain mobility in older adults. Strengths of this study include the large sample of Canadians which allowed for generation of two models . CLSA data included the life space index questionnaire [23], a commonly used and comprehensive measure. The database also included multiple observed variables to represent most constructs in the theoretical mobility model. Despite this, measures representing financial and environmental determinants were limited. This study utilized data collected in the Comprehensive sample included in the CLSA. While the sample was national in scope, it is not intended to be generalizable to the entire Canadian population because only people living within 25-50 km of the 11 data collection sites were eligible to participate [52]. This was a relatively highly educated sample, with over 70% in both the 65 + group and the OA group having obtained a post-secondary degree or diploma. The cross-sectional nature of this evaluation precludes making causal inferences, and it should be noted that findings from Canada may also not be generalizable to individuals from other parts of the world. --- Conclusions We used data from a large population-based sample to verify the highly cited comprehensive framework for mobility [12]. Findings confirm the complex interrelationship of financial, psychosocial, environmental, physical, cognitive, and personal factors that influence life space mobility. All latent factors representing determinants in the original model were associated with life space mobility when considered together using SEM. Our results support continued use of the framework to conceptualize mobility broadly to foster interdisciplinary research and policy development in diverse contexts including clinical practice, transportation and logistics, built environment design, and community development. Research and clinical practice should avoid unidimensional analyses of factors that influence older adults' abilities to access their communities. Common outcome measures utilized in the CLSA and questions about depression and anxiety show relevant and significant links to life space mobility. Clinicians and researchers should continue to use these measures and related measures to assess and formulate relevant treatment goals with clients. Programming for older adults should attempt to include opportunities for physical activity, social engagement, and appropriate levels of cognitive challenge. Clinicians, researchers, and policymakers alike should consider the ways in which society can promote physical, emotional, cognitive and financial health for all adults, even in younger age groups, because these factors are instrumental in determining mobility in later years. --- List of abbreviations --- Data Availability The datasets generated and/or analyzed during the current study are available from the Canadian Longitudinal Study on aging for researchers who meet the criteria for access to de-identified CLSA data. --- --- Supplementary Material 1: Additional file 1: Additional --- --- --- Competing interests The authors declare no competing interests. ---
Background Mobility within and between life spaces is fundamental for health and well-being. Our objective was to verify a comprehensive framework for mobility. Methods This was a cross-sectional study. We used structural equation modeling to estimate associations between latent factors with data from the Canadian Longitudinal Study on Aging for participants 65-85 years of age (65+, n = 11,667) and for adults with osteoarthritis (OA) aged 45-85 (n = 5,560). Latent factors included life space mobility, and physical, psychosocial, environmental, financial, and cognitive elements. Personal variables (age, sex, education) were covariates.The models demonstrated good fit (65+: CFI = 0.90, RMSEA (90% CI) = 0.025 (0.024, 0.026); OA: CFI = 0.90, RMSEA (90% CI) = 0.032 (0.031, 0.033)). In both models, better psychosocial and physical health, and being less afraid to walk after dark (observed environmental variable) were associated with greater life space mobility. Greater financial status was associated with better psychosocial and physical health. Higher education was related to better cognition and finances. Older age was associated with lower financial status, cognition, and physical health. Cognitive health was positively associated with greater mobility only in the 65 + model. Models generated were equivalent for males and females. Conclusions Associations between determinants described in the mobility framework were verified with adults 65-85 years of age and in an OA group when all factors were considered together using SEM. These results have implications for clinicians and researchers in terms of important outcomes when assessing life space mobility; findings support interdisciplinary analyses that include evaluation of cognition, depression, anxiety, environmental factors, and community engagement, as well as physical and financial health. Public policies that influence older
Introduction The coaching literature and indeed, sport and gender research more broadly, is saturated with studies and writing around the issue of women's underrepresentation as coaches. The consensus is that the coaching profession has long been and continues to be, a white male dominated occupation and that this is a global issue. Within the UK, the context for the present study, the statistic remains that only one in five qualified coaches are women . Globally, figures reveal that one in ten accredited Olympic coaches are women . To provide country-specific examples, Australia currently have no women as national managers for any sport other than for gymnastics and netball . In Germany, 10% of high performance coaches and 13% of professional coaches are women . Paradoxically, in Finland, a country known for its societal and political embrace of the notions of gender equality, men are in the majority in coaching. In team sports, two thirds of head coaching roles are taken by men . In Canada, the percentage of women in both high performance coaching and university head coaching roles is approximately 20% . Within the UK, the underrepresentation persists despite an improvement in wider social attitudes and legislation towards equality and diversity within the UK society and the action in response to this legislative pressure by sporting organisations and national governing bodies. Since the introduction of the 2010 Equality Act by the UK Government, within sport and coaching there has been an increasing interest in and emergence of equalities on the agenda of policy makers and organisations , as part of a broader trend towards mainstreaming equality across the sectors . Sporting governing bodies and organisations are seemingly providing more opportunities for minority groups and individuals to access the 'system'. However, research shows that the engagement of sport organisations in operationalising equality legislation and standards into practice, beyond 'tick box' exercises and number counting, is questionable . What is still lacking is an examination of the power relations that lie at the heart of sporting inequalities and the experiences of minority groups in participation and leadership . Despite drives to enable more underrepresented groups to access sport and coaching, such as increasing the number of women within the coaching profession, the persistence to target underrepresented groups and provide extra programmes and services, rather than enact deep structural and cultural change, continues . Researchers working within the area of gender inequality within the coaching profession have also tended to persist at addressing similar issues. Existing research in this subject area has provided us with burgeoning knowledge of many factors that have prevented women gaining more coaching opportunities or their intentions to leave the profession. Quantitative approaches have dominated the literature seeking to understand why women are so poorly represented in sport leadership roles. The under-representation of women as coaches in proportion to men is often explained by women coaches having lower self-efficacy, less intention, preference, and motivation to coach and higher intent to leave the profession compared to men coaches . Qualitative research has added to this by citing structural factors such as fewer opportunities, unequal gendered relations, unequal ideas of coaching competence, lower self-confidence, poor working conditions and sexism interconnected with homophobia and racism . To this end, we argue that this field is potentially reaching saturation point in terms of suggestions for the barriers and facilitators to women starting and progressing as coaches. What crucially remains is the need for a less 'static', ad-hoc approach to the issue of women's underrepresentation as coaches: there is a greater need for a contextual understanding including the performance level at which the coaches work; a greater critical examination of organisational practices that frame such experiences; more use of an interdisciplinary approach to this research 'problem'; a greater understanding of not only what it means to be in the minority but what are the consequences, for the individual and the wider coaching context; and a greater exploration of the nuances of what it means to be a 'coach' that all could contribute to women's poor representation and less positive experiences as sports coaches.. These questions require a review and summation of the quality of women's experiences, accomplishments, relationships and how they function within the social structures of their professional and personal lives . We see well-being as a broad category that encompasses these factors. Precisely, the purpose of this study is to adopt and substantiate Keyes' model of social well-being to appraise women coaches' circumstances, experiences and challenges as embedded within the social structures and relations of their profession. This is achieved through empirical research with a sample of UK head women coaches; their experiences and voices provide the basis for the present study. This is an alternative approach to psychological notions of well-being that focus solely on the private lives of individuals. Keyes' work understands social well-being as a product of social and community structures and enables and evaluation of the self with respect to social context, and evaluation of others and society . This paper is structured in six sections. First, we discuss well-being within a sport and coaching context and why such a perspective should be adopted to problematise the underrepresentation of and the experiences of women coaches. We then introduce, broadly, the notion of social well-being and its merits. Third, we introduce our gendered adaptation of Keyes' model of social well-being to address this issue and discuss the multiple dimensions of social wellness that represent challenges that women coaches face while attempting to operate and progress within their occupation. Following an outline of the methodology adopted to appraise the social wellness of women head coaches in the UK, we present the findings from this research. Finally, we conclude with suggestions for the future directions for coaching sociology. --- Introducing Social Well-Being to Coaching Sociology Broadly speaking, well-being in coaching is an emerging area, limited to sport psychology and with much of the work and resources focused on athletes and their psychological development . The work that has included a coaching focus has tended to evaluate the connections between for example, coaching styles, behaviours, coach-athlete relationships and attachments, motivational climates and the impact on athlete well-being . Yet, the sporting context, and in particular the high performance level, is a stressful one in which the demands on coaches are high. Demands include performance-related such as tactics, selection, and decision making as well as relational, emotional and social demands such as athlete welfare in addition to coaches' being responsible for their own emotional and physical health . The role of the coach is therefore a complex and difficult one; a job based upon performance outcomes within often restrictive resource and time constraints and with high expectations . It is perhaps then not surprising that many coaches, both men and women, often report high levels of exhaustion and sometimes burn-out . Combining this with the additional difficulties of being in the minority in the profession that brings with it added isolation and loneliness, marginalisation, and trivialisation , the need to explore and understand well-being in coaches could be described as urgent. However, by adopting a psychological approach to the area may mean that well-being and any sub-optimal mental states are viewed as an individual issue, for example as a coach's inability to cope . What remains unscrutinised are the organisational contexts, practices and procedures , as well as the wider discourses and social ideologies and relations that may scaffold a coach to feel more well or unwell within their day-to-day life. This warrants a sociological perspective to the issue of well-being and coaching, which at present is not found within the sociology of sport literature. In a turn from psychological well-being that conceptualises individual lives as a solely private and personal phenomenon , social well-being understands life satisfaction as a more public experience. To be socially 'well' means the presence of positive life satisfaction, positive social health, social integration, social cohesion, a sense of belonging and interdependence and a sense of shared consciousness . Existing research, as mentioned at the beginning of this paper, indicates the coaching profession is not a particularly positive environment for underrepresented groups, in this case women, with reports of feeling marginalised, bullied, harassed, unfulfilled, excluded and overlooked for progression . Therefore, it begs the research question: how socially 'well' are women coaches? With an understanding of what is social well-being, the following section examines, in more depth, what factors impact social well-being as part of presenting our theoretical approach for our empirical research. Within this, the current literature around the subject of women in coaching is interwoven. First, we argue the need to gender our understanding of well-being. --- Presenting a theory of gendered social well-being to the area of women in coaching In the following sections, we present our theoretical framework for the present study and empirical data. In adopting this theory, we recognised that it did not necessarily possess an explicit gender sensitive lens. In addressing the experiences of the participants, we deem it necessary to problematise the broad social and cultural context underpinning the coaches' experiences and the power relations inherent within these contexts . Crucially, we also argue that these experiences are consequences of the gendered identity of the coaches. While much has been written about women and coaching, and some work exists around well-being and coaching, the relationship between the two has not been explored . Therefore, we propose a gendered social well-being approach to understanding the lives of women coaches, drawing not just on Keyes' model but also infusing this with elements of a feminist critical perspective and in particular, feminist cultural studies. As discussed earlier, social well-being itself originates in the sociological interest in anomie and alienation with societies and cultures, occupying itself with questions of social rules, orders and relationships . By drawing on feminist cultural studies sociological thought in conjunction with this, within each component of Keyes' model, we can examine how gender is played out in and affected through such cultural interactions whilst advocating that male power is responsible for gendered inequality within the coaching profession . Sport is widely understood as an gendered space; sport and coaching has become a patriarchy as a product of years of men's knowledge, practices and behaviours becoming powerful and privileged . The strength of intertwining a feminist cultural studies influence within Keyes' model is in confronting the larger cultural and social forces that surround women's lived experiences in sport . While women's participation in sport might have increased , they continue to be marginalised, trivialised, and undervalued as coaches. . --- Theoretical Approach: Applying Keyes' model of social well-being to the experiences of women coaches In presenting our theoretical approach, we discuss components of social well-being that influence how 'well' an individual is and that present challenges to this as related to their gendered identity. In undertaking our work, we utilised Keyes' multi-dimensional perspective of social well-being, comprised of five concepts, in order to understand how and to what extent women coaches are functioning within their social world. Keyes' work has been credited with having a direct influence on the formulation of "a well-being manifesto for a flourishing society" . The model has proved popular in well-being research as a well-established, holistic measure in capturing social well-being and in extending the eudemonic tradition of well-being from the intrapersonal to the interpersonal realm . The five components: social integration, social acceptance, social contribution, social actualisation and social coherence, will now be discussed in turn and gendered, to demonstrate its application to the issue of women in coaching. --- Social integration Keyes defines social integration as the assessment of the quality of one's relationship to their society and community around them . To feel socially well, individuals need to experience feeling part of society and to feel integrated, i.e., that they have something in common with those around them who constitute their social reality . In the workplace, if individuals experience positive and supportive relationships around them with their colleagues and organisational hierarchy, then they feel integrated, connected and acknowledged . In relation to the present study, existing research supports the argument that social integration is not always experienced by women coaches. Indeed, the organisation of sport runs counter to fostering integration; instead, within most sports men and women are separated and the power base of most organisations remains white and male . Other means of segregation includes the sexualisation and trivialising of women as athletes and as coaches . On a micro level, current research has shown that women coaches report feeling segregated in the workplace demonstrated by being left out of networks in order to learn about educational and promotional opportunities, report poor working relationships with men and describe feeling 'left out' of decision making roles and not feeling integral to their organisation or male coaching colleagues who display often different norms and values which run contrary to fostering social integration . --- Social acceptance Keyes presents the second dimension of social well-being as the degree to which individuals feel secure and valued as part of a community that demonstrate trust, kindness and believe in the qualities and capabilities of others. To work within a socially accepting organisation or workplace means that colleagues hold favourable views towards others and feel comfortable with others . When applying a social acceptance lens to the subject of women's experiences as coaches, the research suggests that women do not always feel accepted because of discriminatory ideologies and expectations attached to their gendered identity. This is demonstrated by a lack of value and respect towards their capabilities to lead. The research informs us of women coaches having to work much harder to prove themselves than male colleagues, to other coaches, to their organisation or governing body, or to athletes . This is because the cultural perceptions of women, based on biological and natural assumptions, are juxtaposed to perceptions of what is a leader. In her review of the challenges that women coaches experience, Kilty found participants reported an unequal assumption of competence compared to male colleagues. Such covert discrimination was also a contributory factor in women's turnover intentions in Lovett and Lowry's study. As a consequence of having to continually work to feel accepted, many women coaches have spoken of feeling undervalued, insecure and out of place in their organisation . --- Social contribution The third component of social well-being, according to Keyes , is that of social contribution. This follows on from social acceptance in stating that when one feels accepted, they feel a sense of social value. Social contribution is the belief that one is an integral member of that context with something of value to contribute . Counter to social contribution is alienation: the feeling of a lack of control, undervalue and domination within a context because one does not feel valued and is on the peripheral of a dominant, ruling social group. Within the context of coaching, the undervalue of women coaches is a well-documented issue . This has been show through the failure of organisations, governing bodies and decision makers to recognise women's accomplishments, achievements and potential as effective and competent coaches, and the failure of organisations to provide adequate education and practice opportunities to demonstrate support and progression for their women coaches . In this way, the contribution that women could make to the coaching profession is often ignored and devalued even though women represent a motivated, engaged addition to the profession . --- Social actualisation A sociological alternative to self-actualisation , social actualisation describes an individual's evaluation of the potential and trajectory of society. It is whether an individual is hopeful about the state and evolution of their social contexts, and whether they can recognise society's potential that would be achieved through others and the institutions around them . Related to the experiences of women coaches, the coaching sociological literature has documented the accounts of women who feel the 'custodians' of their profession, i.e. policy makers, coach educators and governing body officials, are not always working towards growing and developing their potential . To use Keyes' phrase, women coaches have often described their profession and individuals within their sporting institutions as 'unsavoury' contexts in which to try to progress . Instead, the feeling amongst many women is that they feel little sense of control of the development and growth of their coaching careers. Instead, this power resides in external forces which are overseen by custodians who often demonstrate insufficient interest in nurturing them . --- Social coherence The concept of social coherence argues that to be socially well, individuals need to believe that the quality, organisation and operation of their social world is organised and that they have a sense of meaning within their life. Social coherence is rooted in the sociological appraisal of society as discernible, rational, functional, and predictable . To feel socially well, it is important that people find a sense of meaning and place. Related to a sporting context, the key to a positive coaching career and experience would then lie in the sense of coherence, comprehensibility and meaningfulness of reality provided by that profession . Yet, it has been identified that the UK coaching workforce is potentially facing crisis in terms of inconsistent deployment and opportunities, its shrinking size and diversity, lack of recognition, progression and value, and work-life tension for coaches . As such, the norms and values within many sporting organisations, governing bodies and clubs mean a heavy burden on coaches in terms of workloads, and unrealistic and unequal expectations . In this way, women coaches are being appointed to positions in problematic organisational circumstances. This induces the analogy of the 'glass cliff' whereby they are judged and effectively blamed for not making credible coaches but the situational factors that surround them, are ignored . In essence, women coaches are in precarious positions. The importance of a clear, discernible developmental profession is crucial to recruit and retain women as coaches and yet, the body of literature on this issue indicates that women conceive coaching as often an opaque, inflexible and unpredictable pathway whereby opportunities to progress are ad-hoc, irrationally allocated and difficult to locate . The opening sections of this paper have presented a case for adopting a gendered well-being approach to understanding the experiences of women coaches. Therefore, the research question underpinning the present study was: how socially well are women coaches? The following sections outline the methodological approach taken for the present study and the subsequent findings and discussion that arose from the research. --- Methodology The present study formed one stage of a large, three staged, mixed-method UK research project around the issue of occupational well-being and women coaches. The focus of this paper and the subsequent findings are drawn from the second, qualitative sociological stage of the research. This second stage focused on sampling 16 head coaches from a larger group of women coaches who had completed a quantitative, psychological questionnaire on occupational well-being in the first part of the study . With the focus of the second stage of the research on how socially well are women coaches, it was agreed between the research team that women who occupied head coaching roles who had completed the psychological measure would be sampled for stage two. The rationale for this was that being in a head coaching role would bring with it more responsibility, they were more likely to have greater experience and years coaching, and the coach was more likely to have a closer working relationship with their sporting organisation / national governing body . Not only therefore, could they discuss their personal coaching experiences but would be able to reflect on how these related to and were influenced by, their organisation's policies and practices. In addition to head coaches, the sampling strategy also took into consideration the scores of the coaches from stage 1 related to three constructs: psychological health , psychological well-being and physical health . Following analysis of these questionnaires, a sample of 16 head women coaches were sampled: four reporting poor health on two or more of these constructs; four reporting average health on two or more of these constructs; four reporting high levels of PsH, PWB and PH; and four coaches that reported a mix of scores across the three constructs. The 16 participants represented a variety of individual and team sports, and all were highly qualified within their respective sports, with qualifications ranging from level two of the UK Coaching Certificate to level fourthe highest award within the UKCC. All self-defined as White British, a reflection of the Whiteness of the UK coaching workforce in which 97% self-report as such . 15 of the participants self-defined as able-bodied with one participant reporting a physical disability. This too is reflective of the able-bodiedness of the UK coaching workforce in which 92% describe themselves as without a disability . The coaches were aged between 25 and 55 years old. Four coaches had children. Most of the participants coached women's teams within their sports but a few had previous experience of coaching men or mixed teams. Informal letters of information were initially emailed to the 16 head coaches. All of the invited coaches agreed to participate and consequently were sent formal letters detailing the study and consent forms to complete prior to meeting. In order to achieve a greater depth into their experiences, semistructured interviews were conducted with the participants by two of the research team who were expert qualitative interviewers and sociologists . Following Patton , we employed an interview guide approach to structure the interviews. The interview schedule was devised for the purpose of the research, drawing on Keyes' theory of social well-being with a gender sensitive lens. The focus of the interview included the participants' background in and early experiences of coaching, their role and responsibilities as head coach, understanding how their gendered identity had shaped their career, and their life and career transitions, gendered relations within coaching and engagement with their NGB, supporting women in coaching. Participants were also asked to elaborate on any further relevant information that arose during the course of the interview. Each interview lasted between 45 and 150 minutes. All interviews were tape-recorded, transcribed and analysed by one of the qualitative researchers within the team, using the constant comparison method of data coding, and then this analysis was checked by the other qualitative researcher who had led some of the interviews .This analysis involved unitising each interview transcript into smaller units of meaning and the response to each interview question comprised a unit. Each unit of meaning was then compared to other units of meaning and subsequently grouped with similar units to form a category . When a unit of meaning could not be grouped with another, it formed a new category. Rules of inclusion for each category were written and connected to similar categories to show relationships and patterns across the data. One of the principal objectives of the research was to provide a forum and platform through which the women's voices could be heard and their experiences shared. This aim originated from our own feminist perspective and informed by the feminist aspect of the gendered theory of social well-being. To conduct the research from a critical feminist position meant holding the view that the participants' experiences were morally significant . Tangibly, this meant that trustworthiness and respect of the participants was needed and this was achieved through member checking of the interview transcripts. We also ensured that we were reflexive as to our potential powerful position as authors of the research and thus, sought to equalise the researcher-researched relationship through considering each participant as the authority on their experiences . We spent time building a rapport and relationship with the participants prior to interview through their involvement in stage 1 of the research and through correspondence. During these exchanges, we made explicit our feminist perspective, the aims of the study, and the theoretical perspective of the research. Further, to protect the identity of the individual coaches, we anonymised the participants' names and sports within the findings and each coach provided a pseudonym for their stories. --- Findings and Discussion The findings section applies Keyes' five components of social well-being to the experiences of the 16 women head coaches. We describe this in the context of their profession, providing examples based on their everyday experiences of coaching within their sporting organisations. It is important to acknowledge the heterogeneity of the women's coaching experiences, illustrated through their identities, critiques and aspirations. Relevant and related threads of the coaches' experiences and stories have been interlinked to provide the dominant narrative of the women head coaches who contributed to this research. The importance of engaging with well-being at both an organisational level and an individual level is reinforced by the coaches view-points presented in the five themes below. --- Social Integration A number of the coaches felt that coaching was a lonely and isolating job. Developing and maintaining positive and supportive relationships was noted to be difficult due to the competitive, high-pressured nature of the high performance coaching environment. Lisa, a UKCC level 3 qualified team sport coach, described her journey through coaching as getting to "the top of the food chain". She explained: I think the biggest problem [is] where people, coaches struggle and the bitchiness is people feel threatened by people […] I think a lot of the coaching world is feeling threatened by other coaches and that's sad. Cassie, a level 4 individual sport coach, also stated: Yeah, it's quite solitary and it's very competitive, […] I think there is a lack of making any kind of network because you're all, you know, defending your own business to some extent. As a result, many of the coaches did not feel a sense of connectedness or belonging to a coaching community. This sense of isolation was heightened for the coaches due to the elusive, gendered, discriminatory actions described by Louise, a level 4 team sport coach. She described how she had felt excluded from her coaching team and important planning processes, which had in turn hindered her progression as a coach: The barriers to trying to progress would be part of something -so exclusion, being ignored, being patronised, being included because I had to be included [but] Like Carolynn, a number of coaches felt that intersecting identities hindered their social integration into the coaching networks, in which acceptance was dependent on 'fitting' the ideal / normalised image of a coach. I do think sometimes there's this feeling that, particularly as an older female coach, that hasn't been a high level athlete, there's this perception that you're not quite good enough at that level, and that annoys the hell out of me . We weren't really wanted, it's very difficult to get a job, because I'm not young, and I'm not male, and I think I'm not in their desirable category, and I don't look young, and fresh, and happening . Understanding these stories within the context of a gendered theory of social well-being, it is evident that these women feel a sense of disconnect or segregation between themselves and their colleagues. As discussed in the opening sections of this paper, to feel socially well, individuals need to experience feeling part of their social context, i.e., that they have something in common with those around them who constitute their social reality . Social integration also means to experience feeling as though you 'fit in' within your social realities . On this basis, it is accurate to assert that the coaches did not always feel they shared similarities or experiences with their colleagues in more powerful positions around them nor did they feel they belonged. The interviews support the notion that these coaches experienced a sense of disconnect and less support because of their gendered identity and on some occasions, because of their status as older women coaches. The concern with this is that low social integration is often correlated with occupational burnout if combined with other work-related outcomes, particularly for women, and that more attention needs to be paid to women's working conditions to challenge this . The finding of the present study builds on and updates previous work within this subject area that has shown that women coaches report feeling left out of power networks, that the strength of the 'old boys' club is detrimental to women's professional progression, and working relationships with male coaching colleagues are often strained . The present study also finds that in addition to gender, age is also a significant influence on women's acceptance and integration as coaches, and older women coaches are less likely to experience social integration within their coaching communities. --- Social acceptance The gendered nature of social identities, power relations and acceptance was evident in the coaches' experiences of their relations with other coaches and colleagues, governing bodies, athletes and parents of athletes. Specifically, coaches felt that they were constantly judged by gendered assumptions and expectations and had to constantly prove their competence in order to gain and maintain acceptance and respect. Lisa explained: I think the issue is gender for me personally, it's trying to compete with the men and being respected, it's getting the men's respect as a coach, I think that what's it is, it feels as if you're always striving to get their respect which is a hard one really. Sarah, a level 4 team sport coach similarly talked about feeling judged as a woman coach: Being a female coach I always feel as though I've got to be 120% over 100%... somebody can lead a session, male, job done, good session, you could deliver the same, I actually feel you could do the session as a female, to exactly the same audience but they would find something that needed to be better . Louise described her everyday challenges of gaining acceptance using the metaphor of a 'respect thermometer': As a result, the coaches felt that they were offered fewer development opportunities in terms of leadership because they were not trusted to do as a good a job as a male coach. Sarah discussed this: I've been appointed this year, and they've told me this, "We want you to be the assistant coach, not the lead because we want you to develop him to be a lead", so I've been given the task of developing a male, a promising coach to give him the skills of quality to be a lead coach which I almost think is the ultimate irony […] They wouldn't trust me to lead but they want me to develop a coach to be a lead . Social acceptance however, was more likely when coaches had been previous high-performance athletes within their sport. Cassie explained: The team's coaches have been very male, I think their view on the sort of thing that women might be good at is In trying to 'fit' to the characteristics and perceived qualities of the dominant coaches in authoritative positions, some coaches talked about compromising their own personal and professional values and tolerating sexist behaviour in order to comply/assimilate with existing cultural practices. Lisa referred to this as 'playing the game': Zoe, a team sport coach, felt strongly that she was not prepared to compromise her values and 'play the game' but explained that she had suffered both personally and professionally as a result: Consequently, a number of the coaches did not feel comfortable within their coaching environment and lacked trust in other coaches and colleagues. Where women coaches had succeeded in leadership roles, they had experienced bullying from other male coaches, as Beth discussed: worrying I'm I'm Yes, there is some resentment from some of the men, because of the work that I'm doing at the moment […] they become quite undermining and disruptive and quite unpleasant. […]I haven't ever had that from a female coach, only from male coaches, and they run you down all the time behind your back. You would call it bullying. […]That's quite painful to me, and that's one I find hard to deal with. To summarise, the participants' experiences demonstrate that being in the minority coupled with ideological assumptions as to women's ability to coach, can bring with it a gendered toll. The coaches' experiences could be described as 'surviving' rather than thriving within their roles. Working daily to gain acceptance and respect against unfair evaluations of their coaching competencies took an emotional and physical toll on these women. The coaches expressed their frequent, almost daily, sense of frustration at having to work harder and prove their coaching abilities to their male coaching colleagues and to men in decision making positions. They described organisational cultures where women coaches are afraid to make mistakes for the cost to their respect and credibility, a culture that does not believe in them to lead and that leads them to question themselves whether they are good enough. These women coaches therefore, are in glass cliff positions, whereby they are individually judged but the circumstances in which they work, i.e. in organisations that may be in crisis, transition or precarious circumstances when it comes to the future of their coaching workforce, is ignored . These experiences of undergoing greater scrutiny are also symptomatic of a lack of trust and that this too is a gendered issue . Some of the participants likened these feelings to bullying; that when women do not meet expectations, they are closed off from networks, progression and positive working experiences. When experienced on a regular basis, the impact of such working conditions can be draining, as evidenced by the participants. Through the historical exclusion of women from institutions such as sport, the dominant discursive practices become to belong to white, middle class men and over time, these become subsumed as generic professional norms and behaviours . As women attempt to enter, progress and be seen within these institutions, they present contradictory norms, values and expectations which has consequences for how they are seen and judged by others . Instead of just being evaluated on competency, they are expected to civilise white, male spaces which places extra burden on such women who have to manage complex negotiations in order make headway in such contexts . The values and structures of sporting organisations are crucial for fostering positive working conditions to meet the needs of all their coaches . These findings are congruent with previous work into this area that has similarly reported women having to work to prove themselves against unequal assumptions of their abilities as coaches . The contribution of the present study is in connecting such experiences to the impact on working conditions for women, including poorer working relationships with male coaches, fewer opportunities to progress and practice, and worryingly, the coaches described having to comprise personal values and silence their own voices to fit in with the dominant culture which was often portrayed as unequal, favourable to men, unsupportive. This culture worked to suppress any dissenting voices. Consequently, the coaches interviewed reported experiencing a range of negative emotional states. Linked to the notion of gendered social acceptance, it is evident that these women did not always feel valued or secure within a community that often fails to show belief, faith, kindness and value in its women coaches . --- Social Contribution The coaches expressed varying degrees of confidence in their coaching abilities, but all of them felt that they had made, and could continue to make, a valuable contribution to coaching in their sport. This was linked to gaining confidence, which in turn linked to a greater sense of belonging , as Carolynn explained: I have the confidence now so I…feel that I belong and even [another coach] has said that as well, at the British Polly, a team sport coach, had similarly gained confidence from qualifications and experience, which she felt had given her the recognition from other colleagues and athletes that she deserved: Feeling valued by colleagues and the organisation was also strongly influenced by opportunities offered to develop and progress as a coach. Debbie and Anne, two of the younger coaches who contributed their views, felt that in this sense, their gendered identity as a woman coach had enhanced their sense of social contribution at a time when their organisations were investing in women coaches. Yet, other coaches interviewed felt that their gendered identity as a woman within a male dominated environment had hindered their progression due to gendered power relations that structured the development opportunities for progression in favour of men. Cassie and Zoe discussed their disappointment and frustration at the gendered nature of decision-making processes by male managers for coach promotion: There was continually guys who were so under qualified compared to me who were getting the work again and again and again and that is when you start to think 'well that can't be coincidental' . The people who are in charge of the game are all male, and this includes the [disabled team] where [I am], they're all male. You can't even get near the management of the game anymore because it's a closed group, so The result of these gendered-decision making processes that occur through informal networks rather than a transparent recruitment system was a sense of distrust towards the organisation and more senior coaches in the decision-making positions. Zoe explained that she now felt at breaking point after years of trying to progress and was considering giving up coaching for her governing body: Thus, many of the women coaches felt a sense of alienation, in that their attributes and opinions were not valued, nor allowed to be contributed. These experiences of alienation, invisibility and 'not having a voice' provide an insight into the power relations that structure sport coaching and ultimately privilege white, ablebodied men within the system, whilst disadvantaging those considered as 'others' . Although Zoe, and other women coaches were passionate about improving and developing coach education within their sport, they instead have to focus their energy again on 'surviving' within a masculine dominated culture in which they feel undermined, intimidated, marginalised or invisible within their role . The outcome is that these coaches eventually drop out of coaching in search of an environment in which they feel that their contributions will be valued, recognised and developed, a finding from earlier work in this subject area related to women coaches and leaving the profession . Often women coaches, isolated through their role and so unable to form collectives to push for change, chose to exit coaching because the cost of trying to make changes is too weighted against the benefits . Interpreted through a gendered social contribution lens, while the coaches felt they made valuable contributions within their role , this appreciation was not reciprocated by colleagues or those in power in their organisations. These findings contribute to, and update the existing body of knowledge on women in coaching by demonstrating that women's experiences of feeling valued are influenced by age and ability: younger, able-bodied women coaches may feel more valued because they are developing at a time where there is a greater drive to increase the number of women coaches in the UK. Thus, more opportunities exist to learn, train and progress. However, this is tempered by the accounts of older women coaches who have found such examples of positive action are temporary and piecemeal opportunities, rarely leading to equality of outcome . --- Social actualisation When discussing ambitions and aspirations for coaching, it was evident that every coach interviewed was passionate and motivated in terms of work engagement towards their coaching role. Yet, for a number of the more experienced coaches , a reoccurring theme was the adaptation of aspirations and ambitions because they were distrustful of their organisations to support them to progress. The following quotes exemplify the negative emotions expressed towards their governing bodies and the perception of the unchanging and unchallenged, yet powerful structural relations that hindered their progression: It Jemima, one of the youngest coaches who had been a head coach for three years, demonstrated a great sense of social actualisation in that she did believe her governing body was changing positively with regards to the development of a more transparent system of coach development. She explained: I think in the past maybe it's been very male dominated and so males are the coaches and women were the team managers, kind of the organisational person rather than the coach. Whereas, in fact [with] the recent changes in…the national governing body after the 2012 Olympics they changed the whole team and restructured it, after that it's very much more if you know the job well enough and you're good enough at your job you will get selected regardless of who you are […] those women that have got the good athletes, the Olympic athletes that are getting selected are now more visible anyway, I think everything's a little bit more visible now. Like before you didn't hear about who was on the coaching teams or anything like that whereas now it's announced and things as well so it's all more visible and the fact that there are women on there shows them that it's doable. These narratives again illustrate that age, as well as gender, impacts the social well-being of women coaches. In this case specifically, it impacts their sense of social actualisation. The older women coaches described feeling less supported in their ambitions to progress by the custodians of their sporttheir governing body, despite remaining ambitious and motivated to move higher up the coaching ladder. In effect, they had reached a 'developmental dead-end'. On the other hand, the younger coaches reported feeling more positive, encouraged and endorsed by their governing bodies. There were varying degrees of trust between the participants towards the custodians of their governing bodies. These findings support the argument that this sense of trust is gendered and related to age, updating and adding to the earlier work of Acker and the more recent work by Kihl et al. who both described trust as a gendered concept with women reporting to feel untrusted to be leaders and coaches. Trust is a crucial component of the relationship, in this context between coaches and their NGBs, because it signifies commitment which means whether women feel a sense of attachment to their organisation . Trust, within an organisational context, means integrity, open-ness and business sense . Without social integration and social interaction , trust in an organisation is weakened . Age is an important influence too. The younger women coaches reported a greater sense of control over their career development whereas the older coaches were less trustful and frustrated at the sense that progression was ultimately 'out of their hands'. This is a new contribution to the existing knowledge of women's coaching experiences. Previous research has found that a lack of sense of control over their careers is often cited by women coaches, particularly women from black and minority ethnic groups , and that many women coaches do not have faith or trust in those who are responsible for organising and leading their sport . Our findings add that as well as 'race' and ethnicity, women's experiences are also intersected by age and such feelings of trust and support are part of a sense of social actualisation as a component of social well-being. --- Social coherence When discussing how they experienced working for their sport organisations, a number of coaches talked of a 'toxic environment' due to the gendered power relations noted previously, and the stressful demands. Time management was noted to be one of the biggest challenges for coaches due to the increasing job demands on their role. Working seven days a week, not having holidays, failed personal relationships, missing important family and friendship 'milestones' such as weddings and parents evenings, and giving up social activities for coaching were commonly referenced by the coaches. In particular, the coaches talked about the expectation that you would always be available, and coaching would always be your priority, as Polly explained: You can't be away every minute of every day; you have to be at home some time. Our meetings were always scheduled in the evenings and I would be the one who at 9 o'clock said "I'm sorry, I'm going because I want to read my daughter a bedtime story" and I was looked at as if I was this awful person but again blokes don't have to, well they choose not to do that. There was an acceptance from some of the coaches that giving up a social life and family life was a necessity to progress as a coach. In this sense, coaching was not a predictable or controlled environment for the coaches. Furthermore, the coaches' experiences evidenced the lack of clarity as to what the role of a coach is in terms of supporting athletes, mentoring, administration work, etc. The stories of the participants also demonstrated that the demands of coaching are high which has led to most of the participants struggling to have fulfilling personal lives, such as maintaining personal relationships, parental commitments or social engagements. This was often symptomatic of working within women's sports which are less resourced and supported than the men's equivalent, and therefore social coherence in this context is a gendered concept. These women coaches occupied 'glass cliff' positions. In other words, they are appointed to precarious roles in difficult organisational circumstances in which the coaching workforce and structure faces sizeable threats and weaknesses . To be socially well, individuals need to believe that the quality, and operation of their social world is organised and that they have a sense of meaning within their life . The participants' stories provide evidence that they do not experience a high sense of social coherence. The women described hectic, changeable workloads that were out of their control on occasions. When combined with a lack of trust and attachment to their organisation , this can undermine women's sense of social coherence even further . The unrealistic expectations of coaches and the lack of boundaries around what is their role underpinned by the women's sense of responsibility towards and strong engagement with their athletes which tied them to their job, placed heavy burdens on the women. Working in women's sports impacted the coaches' workload and so ability to carry out and enjoy their roles. There is some limited coaching research that has found that increased workloads for coaches can affect performance levels and increase their intention to leave the profession . The present study found that this is often a gendered issue. When coupled with often negative feelings towards their organisations or poor working relationships as discussed earlier, these experiences led to poor relationships between thecoaches and their governing bodies, or coaches unmotivated to remain within the profession. Being given appropriate resources and workloads reinforces positive social contracts within the workplace, an ingredient of strong employment relationships, as it enables individuals to fulfil their roles day-to-day . Supportive, positive and healthy workplaces foster effective relationships and so a sign of a healthy workplace is not just trust and respect as previously discussed, but appropriate workloads and resources . Other research work has often framed this issue from an individual perspective when citing the high turnover within the numbers of women coaches or women's higher intentions to leave the profession . However, the present study contends that women coaches' dissatisfaction with their working conditions or possible intentions to leave is a social problem rooted in the organisational gendered practices of high performance sport which prevents women coaches from having meaningful control over their lives . --- Concluding thoughts Using Keyes model of social well-being, and a critical feminist lens, we have sought to explore the question, "how socially well are women coaches?" Our exploration of the experiences of women head coaches provide evidence that women do not display high levels of social well-being. Specifically they do not always experience a high degree of social integration, acceptance, actualisation or coherence and that their social contributions to the profession are also marginalised. . Within this, it is also evident that older and / or less able-bodied women coaches are less socially well than able-bodied, younger women coaches . This intersection of age and ability with gender substantiates our claim therefore that not only does hegemonic femininity underpin the experiences of women as athletes , it can affect the careers of women coaches too. All 16 head coaches interviewed represented a motivated, passionate and ambitious part of the UK coaching workforce. Nevertheless, our findings also provide evidence of the emotional toll that coaching as a profession can take on individuals, in this case, women. While we do not argue that the demands and high expectations associated with coaching are not similar for men, we contend that the extra burden of having to continually prove oneself, having poorer working relationships, experiencing unequal evaluations of competency, and being subject to what could be termed bullying in many cases because of one's gendered identity, means that the profession can be even more difficult for women in entering or progressing. The participants spoke of a state of 'surviving' rather than thriving within their role. Personal lives, relationships, social and family commitments were sidelined by many of the participants in order to meet the expectations of being a coach and in order to prove themselves as women. In a number of cases, energy had to be spent assimilating into a masculine dominated culture, in which the coaches felt undermined, alienated and excluded. Combined with this was a sense of distrust that their organisation, and those in decision making positions within the organisation, would support them to progress. In this sense, the cultural practices embedded within coaching are preventing this group of motivated and ambitious women coaches from progressing. It is not therefore surprising, that many of the participants expressed a desire to leave the profession within one or two years, or at least, downgrade their involvement in coaching. Rather than understanding this as an individual's inability to cope, there needs to be a greater onus and responsibility put on the shoulders on sport organisations, governing bodies and sports councils, certainly within a UK context, for the welfare of their workforcein this case, coaches. As part of this, organisational policies and practices should be targeted towards drawing and reinforcing boundaries around the role of the coach to reduce their workloads and overly high expectations. Strategies suggested by the participants in the present study as ways that would sustain their work engagement included 1) a job share approach for head coaches and 2) establish formalised, sustained mentoring partnerships with more experienced coaches who could also be responsible for observing their health and well-being, for example, noticing signs of withdrawal or burnout. Future research should be directed at adding to this study to provide more evidence as to the well-being of those in minority groups within coaching and the intersectionality of identities. This is an important line of enquiry because occupational health and well-being are critical factors in determining an individual's commitment to and continued participation in, a career. Coaching sociology should focus on understanding in more depth the impact of the experiences of women as coaches and the impact on their health, within the organisational and cultural structures of sport and coaching. At the same time, more work is needed to understand notions of difference between women's experiences. Our work has highlighted the interplay of gender, age, and able-bodiedness and the effect on the lives of the participants. Due to the whiteness of the sample, there is a lack of discussion of the intersection of gender issues with 'race' and ethnicity. Further, while we provide evidence of the extra burden that having a disability places on being a woman in coaching through the story of Zoe, more focused research is needed to unpack the complexities of how disability interacts with gender to impact individual experiences. Therefore, the intersectionality of women coaches' oppression should be discussed further in order to recognise that women are not a homogenous group and to represent their lives and realities as diverse. While examining" how socially well are women coaches?" is important, it is also equally pertinent to consider what aspects of identity may mean that some women will feel more 'well' than others. This requires a more complex interrogation of the coaching culture as well as more questions asked around accountability and responsibility for the health and well-being of sports coaches.
In shifting our gaze to the sociological impact of being in the minority, the purpose of this study was to substantiate a model of gendered social well-being to appraise women coaches' circumstances, experiences and challenges as embedded within the social structures and relations of their profession. This is drawn on indepth interviews with a sample of head women coaches within the UK. The findings demonstrate that personal lives, relationships, social and family commitments were sidelined by many of the participants in order to meet the expectations of being a (woman) coach. We locate these experiences in the organisational practices of high performance sport which hinder women coaches from having meaningful control over their lives. The complexities of identity are also revealed through the interplay of gender with (dis)ability, age and whiteness as evidence of hegemonic femininity within the coaching profession. Consequently, for many women, coaching is experienced as a 'developmental dead-end'.
have been reported regarding Black youth, who were significantly more likely than white youth to engage in heavy gambling . Overall, being young, male, and non-Hispanic Black was associated with high rates of gambling disorder in the U.S. National Comorbidity Survey Replication data . These findings generally mirror sociodemographic characteristics and comorbidity patterns found in earlier studies as well as in special sub-groups of Black gamblers . Welte et al. have noted that adults living in disadvantaged neighborhoods reported the most problem gambling symptoms, however studies have yet to explore the predictors of problem gambling versus other adaptive and maladaptive behaviors in these groups apart from religiosity, which serves as a protective factor . There is scant research involving Hispanics/Latinos and gambling. The few studies that exist are small-scale investigations of specific sub-groups. One general population survey reported that Hispanics/Latinos with subthreshold gambling problems were more likely to have comorbid mood, anxiety, substance use, and personality disorders than White participants. In another study of Latino American veterans, Westermeyer et al. found that the lifetime prevalence rate of disordered gambling was 4.3%, nearly four times higher than in the general population. The study further noted that gambling disorder was comorbid with high rates of major depressive , alcohol , and posttraumatic stress disorders in that sample. More than half of the undocumented Mexican immigrants surveyed in a small study in New York City reported having gambled, and a majority of those gamblers played scratch and win tickets or the lottery . Those who sent money home to their families or had lived in the United States more than 12 years and those who reported 1-5 days of poor mental health in the past 30 days were most likely to gamble. Research among Asian gamblers has been limited, possibly because of the tension between the permissive attitude toward gambling and the increased stigma ascribed to those who gamble problematically in Asian groups . In the U.S., studies have identified higher rates of gambling and problem gambling among Asian subgroups, such as Southeast Asian and Cambodian refugees in the U.S., who reported rates of gambling disorder as high as 59% and 13.9% , respectively. Similarly, another study found that, among college students, Chinese students reported the highest rates of gambling problems followed by Koreans then Whites. The most significant predictors of problem gambling in that study were being Chinese or Korean and male, and having an alcohol or drug problems . The culturally-based motivation to gamble and the risk and protective factors that fuel or arrest the progression toward problem gambling in ethnic sub-groups are likely complex and varied. Some researchers have suggested that the stress of acculturation may play a significant role. A recent study, examining differences in gambling behavior among first, second, and third generation immigrants from a diverse collection of world regions , found the lowest rates of gambling participation among Latin Americans, followed by Africa, Asia, and Europe, which had the highest rates. First-generation immigrants had lower rates of gambling prevalence and problem gambling when compared to second and third generation immigrants or native-born Americans. In addition, the study found that immigrants who arrived in the U.S. as children gambled more frequently than those arriving as adolescents or adults . Issues surrounding acculturative stress may also play a role in the development of gambling problems among youth. A recent study found that rates of at-risk or problem gambling among first generation adolescent immigrants were twice as high as their non-immigrant peers, particularly if they lived apart from their parents . In addition to the influence of acculturation, other theorists have suggested that biology, values and beliefs also play a role. Chamberlain et al. suggested that inflated rates of problem gambling among some ethnic and racial groups may be due, in part, to neurocognitive differences among groups, as measured by differing rates of compulsivity, errors on memory and set-shifting tasks, and delay aversion, which they found were higher in Black versus White participants in one study. Other researchers underscore the influence of values and beliefs inherent in specific cultural groups or sub-groups in the progression and maintenance of problem gambling behavior . For example, certain Asian cultures consider gambling activities to be a part of their lifestyle and tradition . In other ethnic groups and cultures , the concepts of fate and a reliance on magical thinking may encourage gambling behavior in the same way as cognitive distortions do in pathological gamblers . Issues of social isolation, language barriers, and access to employment must also be clinically considered as factors which can drive immigrant populations towards pathological gambling behavior . To date, a notable exception has been found in the Hispanic native born and immigrant communities where, despite the adversity of poverty, lack of education, and social discrimination, rates of pathological and problem gambling are below that of the White majority . This phenomenon seems to parallel the "Hispanic paradox" documented in health outcome studies, where Hispanics have better health outcomes despite the challenges of low socioeconomic status and barriers to accessing healthcare . Given the lack of clarity surrounding differences among minority groups and between minority and White gamblers, the purpose of this study is to explore differences in the characteristics and behaviors of non-problem gamblers compared to high-risk problem gamblers across different ethnic groups. --- Methods --- --- Measures The present study incorporated data collected through an epidemiological survey conducted across the state of New Jersey that stratified its sampling method to accurately reflect the demographic makeups of each region of the state. Sections of the survey produced data on the following variables: demographics ; substance use ; mental health and physical health ; gambling activities participated in the past year ; non-gambling activities participated in the past year ; gambling behavior . Problem Gambling Severity Index of the Canadian Problem Gambling Index This 9-item instrument was used to assess gambling status. Respondents indicate the extent to which an item applies to them using a four-point Likert scale ranging from 0 to 3 . Scores are totaled in accordance with Ferris and Wynne's guidelines: 0 indicates no risk; 1-2 low risk; 3-7 moderate risks; and 8-27 problem gambling, respectively. Ferris and Wynne reported satisfactory scale reliability . For the purpose of the logistic regression analyses, a non-problem gambler was classified as any scoring 0 on the PGSI and "at-risk" gamblers were classified as any participant scoring 3 or higher on the PGSI. --- Procedure The data was collected both by telephone and Internet to address limitations inherent in either methodology alone. Stratified sampling was used in both sub-samples to ensure demographic characteristics of age, gender, and race/ethnicity were reflective of the New Jersey population. --- Results --- Univariate analyses Univariate comparisons among problem severity categories were performed for gender, age, race/ethnicity, education level, marital status, household income, and employment status. Table 1 presents the distribution and statistical significance of explanatory variables by PGSI category. The association between the PGSI and each explanatory variable was assessed using Chi-squared Test of Independence. No socioeconomic variables showed a significant association with the PGSI. High risk of problem gambling was significantly associated with age , gender , race/ethnicity , marital status , self-assessed health in the past year , and past year stress . Non-problem gambling was significantly associated with age , gender , race/ethnicity , marital status , selfassessed health in the past year and past year stress . Additionally, Table 2 presents associations between race/ethnicity and gambling frequency, preferred gambling venue, participation in individual gambling activities, five measures of substance use, and three measures of mental health. Race/ethnicity was significantly associated with both high and low frequency gambling, land-based only gambling , and gambling both online and in land-based venues . Looking at specific gambling activities, race/ethnicity was significantly associated with instant scratch-off ticket play, bingo, sports betting, horse race track betting, live poker, live casino table games and other games of skill. Asians were more likely than other ethnicities to have participated in bingo within the past year, while Hispanics preferred sports betting, horse race track betting, live poker games, live casino table games and other games of skill. Hispanic participants were distinguished by their answers to questions pertaining to substance use and mental health issues. Hispanic respondents were more likely than the other ethnicities to endorse tobacco use, binge drinking, illegal drug use and problems due to drug or alcohol use in the past year. Hispanic participants were also more likely than other groups to endorse a mental health problem in the past 30 days, having a behavioral addiction and/or suicidal ideation in the past year. --- Multivariate analyses A primary aim of this study was to identify the primarily predictors of those at moderate or high risk for gambling problems compared to non-problem gamblers . For that reason, medium and high risk participants were recoded as "problem gamblers" and compared to non-problem gamblers. Low risk gamblers were omitted from the analyses to ensure comparisons between those with more serious symptoms to those with an absence of symptoms. Multiple logistic regression analyses were used to evaluate the relative contributions of the predictor variables, which had proven significant in the univariate analyses, to the likelihood of membership in the at-risk problem gambling group. Continuous variables included age and number of gambling activities endorsed for the past year. All other variables were dummy coded. The minimum criteria for entry of covariates into the model were a p value of less than .05. Partial odds ratios and 95% confidence intervals were computed for significant predictors. Model effects were estimated by the improvement in Chi-square and by a classification matrix indicating the proportion of individuals correctly identified by the model covariates. To facilitate the identification of specific demographic, mental health, gambling participation, and substance use characteristics that differentiate non-problem gamblers from problem gamblers in Whites and ethnic minorities, backward selection step-wise logistic regression analyses were performed, entering in Block 1 demographic variables that had proven significant in the prior analyses between the two groups. These included gender, age, marital status, whether friends or family gamble, overall health in the past year, and overall stress levels in the past year. Substance use, behavioral addiction, and mental health variables were entered in Block 2, to determine which of the significant variables added most to the regression equation overall and which, if any, had a moderating effect on the significant demographic characteristics. Gambling behavior variables were entered into Block 3 to similarly determine which added the most to the regression equation overall and had a moderating effect on the remaining Block 1 and Block 2 variables. Tables 3 and4 show the final regression results. The results of both logistic regressions indicated a good model fit. The regression model separating White non-problem gamblers and at-risk problem gamblers presented with a Hosmer-Lemeshow goodness-of-fit statistic of, χ 2 = 2.91, p = .940. The second regression model separating ethnic minority non-problem gamblers and atrisk problem gamblers presented with a Hosmer-Lemeshow goodness-of-fit statistic of, χ 2 = 10.25, p = .248. The largest predictors for membership in the White at-risk problem gambler group in the final model were high frequency gambling, having problems with drugs or alcohol, gambling both online and in land-based venues, and participating in instant scratch-off tickets. The largest predictors for membership in the minority at-risk problem gamblers group in the final model were high and moderate frequency gambling, having friends or family that gamble, and gambling online only. Among Whites, the results indicate a significant negative relationship with age: Each one-year increase in age decreased the odds of being an at-risk problem gambler by .98%. Men were 1.44 times more likely to be White at-risk problem gamblers in comparison to women. Having friends or family who gambled increased the odds of being a White atrisk problem gambler by 2.28 times. Whites were also characterized by fair or poor health status in the past year, using tobacco products , having problems with drugs or alcohol and/or a behavioral addiction . Among Whites, high frequency or moderate frequency gambling, gambling online or both online and in land-based venues , purchasing scratch-off tickets , betting on sports , playing games of skill , live casino games and/or gaming machines were most predictive of at-risk problem gamblers. Among ethnic minorities, there was a similar negative relationship with age: Each one-year increase decreased the odds of being an at-risk problem gambler. Gender was a non-significant predictor for minorities, although having friends or family that gambled proved the most significant predictor for minority at-risk problem gambling status, increasing the odds by nearly three times. Among the substance use and mental health variables, only having a behavioral addiction was significant predictor of at-risk problem minority membership, increasing the odds by 2.0 times. As with Whites, moderate or high frequency gambling increased the odds of being an at-risk problem gambler by 3.6 and 4.5 times, respectively. Unlike Whites, however, gambling both online and in landbased venues was not a significant predictor of being at-risk, although gambling only online increased the odds of membership by 2.5 times. Amongst the individual gambling activities, only instant scratch-off tickets and gaming machine participation were predictive of at-risk minority status . --- Discussion Findings from this study highlight the need to further explore ethnic differences among gamblers and to better differentiate etiological and other risk factors that may variously predispose different ethnic groups to develop gambling problems. The study utilized a representative sample of participants from New Jersey, however, the relatively small sample size of each ethnic sub-group compared to Whites precluded a detailed exploration of differences within each sub-group in the multivariate analyses. The data suggested that, overall, Whites were more likely than other ethnic groups to be non-problem gamblers; they were also more likely than other ethnic groups, irrespective of problem gambling severity, to be younger males from families or peer groups that gambled and to report comorbid addictive behaviors and fair to poor health status. This profile reflects the characterization of the "emotionally vulnerable" problem gambler , who gambles problematically in order to escape aversive mood states and develops problems due to gambling with increasing frequency on multiple gambling games. Like Whites, Ethnic minority groups appear to be primarily influenced by family members or peer groups who gambled, however, unlike Whites, gender did not appear to play a predictive role. As with Whites, higher gambling frequency among minorities was correlated with higher levels of problem severity, although gambling only online and presumably on gaming machines appeared to be a greater risk factor. These findings could suggest that the influence of cultural, familial and community attitudes about gambling, combined with accessibility of opportunities and the conditioning effects of reinforcement could lead to gambling problems in some minority subgroups. This etiology, characteristic of "behaviorally conditioned" problem gamblers , is most responsive to targeted prevention, interventions, and education efforts directed at the client system. In contrast to findings in an earlier study , the current results fail to support the notion of a "Hispanic paradox" for gambling and suggest a far more complex and context-dependent array of risk factors likely play a role. In this study, Hispanics were distinguished by the highest rates of problem gambling, substance abuse, and mental health problems. Though Asian participants also endorsed high rates of problem gambling, Hispanic gamblers reported the highest proportionate rates of "action" oriented play, such as sports and race track betting and casino table games, and gambling primarily online. They were also more likely than other ethnic groups to endorse substance abuse, mental health problems and suicidality in the past year. Very little is known about the onset of gambling and problem gambling in Hispanic communities, the influence of peers and family modeling, the role of erroneous cognitions generated by cultural superstitions, and/or other bio-psycho-social factors that lead to the development and maintenance of gambling problems in sub-groups of Hispanics and Latinos. In New Jersey, Hispanics are the largest minority but their median income is almost half that of Whites and less than half that of Asians , however, there are few programs and services targeting Hispanic gamblers and few certified gambling counselors who are Spanish-speakers. Future research with Hispanics and other ethnic minorities should focus on exploring the cultural and familial systems that introduce and help to maintain gambling behavior in various ethnic groups and investigating specific risk and protective factors to use as a basis for prevention, intervention and treatment efforts. --- --- --- Competing interests Funding was provided to the DGE by law by industry corporations with online gaming licenses in New Jersey. Authors Caler and Vargas Garcia are students, employed through that grant. Dr. Nower has received grants from or consulting contracts from industry, governmental, and/or non-profit organizations on projects unconnected to this work. All authors certify they have no competing interests regarding this study or its findings. --- Consent to publication All authors consent to publication of this manuscript. --- Ethics approval All procedures performed in studies involving human participants were approved by the Rutgers University Internal Review Board and performed in accordance with their ethical standards and those of the 1964 Helsinki declaration and its later amendments or comparable ethical standards. ---
Studies have consistently reported high rates of problem gambling among racial and ethnic minorities compared to Whites, though findings differ by geographic location and socioeconomic status: ([
Introduction In 2015, the United Nations Sustainable Development Summit adopted 17 Sustainable Development Goals , of which SDG 11 emphasizes "sustainable cities and communities". As extreme weather events are becoming more frequent and intense due to complex processes in the global climate system, cities are directly impacted and must respond to these accumulating emergencies . However, few empirical studies have analyzed the policy diffusion mechanisms of adaptation among smaller big cities and medium-sized towns 1 in metropolitan regions. 2Therefore, the Rhein-Neckar Metropolitan Region in Germany provides a suitable platform for studying decisionmakers' responses, gaining insights into the preferences of local actors, and examining how adaptation decisions shape growing urban regions. This paper unpacks the views of mayors, city council politicians, city administration representatives, and regional agencies within and across cities through a very rich data set of 28 interviews. Using this data set, it aims to identify which factors facilitate or hinder the diffusion of adaptation. We thus pay particular attention to the internal political determinants of adaptation policy diffusion mechanisms across various levels of government. It is important to highlight that attaining adaptation in urban regions effectively means re-using or providing more green and open spaces, which is particularly difficult in growing metropolitan regions with high population density . The current adaptation diffusion literature does not sufficiently address this, as it does not recognize that spatial factors may hamper the pace and scale of adaptation. With our study of the Rhein-Neckar Metropolitan Region, we aim to fill this gap in the literature and shed light on the specific spatial and political drivers that may create obstacles to the more widespread diffusion of adaptation. While we focus on one particular region in Germany, the results may be of great value to other regions that experience similar adaptation diffusion-related challenges. The paper proceeds as follows: first, we provide an overview of the theoretical considerations of adaptation policy diffusion and its underlying mechanisms. This is followed by presenting the particularities of the Rhein-Neckar Metropolitan Region and outlining the methods used in this study. Then, we present our empirical interview results and discuss three different diffusion mechanisms present in the Rhein-Neckar Metropolitan Region. We end by discussing and reflecting on the results of our multidisciplinary approach. --- Theoretical considerations about local adaptation and diffusion Policy diffusion is primarily concerned with how policies diffuse across jurisdictions-that is, how the policies of a particular government unit are influenced by those of other units . It is a prominent and widely used theoretical concept in political science and policy studies, especially because studying the adoption of policies can be applied to a range of topics; the latter range from social issues to environmental and climate-related causes such as mitigation , adaptation , and biodiversity . However, one of the key shortcomings in the diffusion literature is that it generally fails to elaborate on existing theory . Typically, scholars revert to the four widely accepted mechanisms of policy diffusion-learning, competition, emulation, and coercion-to explain how and why policymaking processes and subsequent policies are influenced by those in other government units . However, some do not consider coercion to be a diffusion mechanism due to the involuntary nature of adoption by pressure . Therefore, we exclude it from the present study. Theoretically, we contribute to the literature on policy diffusion. In particular, we examine the underlying mechanisms of learning, competition, and emulation in the diffusion of adaptation within the subnational unit of the Rhein-Neckar Metropolitan Region in Germany, paying particular attention to barriers to adaptation. Blatter et al. have argued that diffusion studies often lose their explanatory power by working inductively when analyzing different sets of diffusion mechanisms. Therefore, we inform our set of diffusion mechanisms by following the framework of Blatter et al. . This approach draws more equally on rationalist and social constructivist elements from international relations and policy studies, thereby leading to greater theoretical coherence. This means that while "learning" and "competition" are predominantly conceptualized by rationalist ideas, such as gaining new information or competing for finances, they are also subject to constructivist accounts, such as previously held belief systems, jointly acquired knowledge, or the incentive to create global standards together rather than engaging in competition . With regard to emulation, studies already emphasize the constructivist account by placing importance on norms and appropriateness , presuming that these factors create shared beliefs about what works well and what does not. While most studies assume a symmetric relationship in all three mechanisms between the involved polities, this is not necessarily the case, particularly for emulation . In the following, we operationalize the three mechanisms-learning, competition, and emulation-in greater detail. Learning focuses on cognitive processes, such as drawing lessons from innovative policies; accordingly, studies of this mechanism highlight the role of experts or epistemic communities . Climate change is undeniably an issue that demands a certain level of expertise; for instance, expertise is necessary in order to find solutions and understand the difference between mitigation and adaptation. Assuming that information about a particular adaptation policy has relevant consequences for existing policies and even other governance units , we examine the knowledge of local policymakers with regard to climate change and adaptation in particular. However, our focus is not just on how policymakers gain new information and their corresponding willingness to address adaptation but also on their agency, motivation, and underlying beliefs. --- Page 3 of 11 72 Competition is more concerned with analyzing how governance units adjust their policies due to externalities in other units . With regard to competition, it is not only the battle for resources and human capital but also the level of cooperative action displayed by relevant actors which can affect diffusion processes . For example, the Rhein-Neckar Metropolitan Region has an "upper-tier" Rhein-Neckar association that actively fosters interaction between local and regional levels and even advises local authorities concerning climate change, thereby boosting cooperation . This association appears to act as a boundary-spanning diffusion actor, not only because it is external to governance units in the metropolitan region but also because it actively fosters common standards across cities. With regard to emulation, studies emphasize the importance of norms and appropriateness . It is therefore necessary to consider policymakers' perceptions of adaptation's appropriateness and effectiveness, especially at the local level. Adaptation does contain specific presumptions about climate change and the legitimacy of relevant policies. For example, policymakers must agree about the appropriate course and scale of action, such as whether to prioritize mitigation over adaptation and how urgently to act, as well as what issues will have to be deprioritized as a result. Thus, one can expect that the diffusion of adaptation will be influenced by whether local decisionmakers believe that climate change is an important political issue that deserves attention in the form of, for example, fostering adaptation as the appropriate course of action. Only recently, political parties and their representatives have been assigned more fundamental roles in policy diffusion processes . Research suggests that there is little incentive for politicians to address long-term policy problems like climate change because the political gains of doing so are distant and uncertain . Politicians' reluctance mainly stems from the fact that their actions are driven by "electoral survival" , meaning that they prefer short-term actions over cost-intensive measures that do not benefit them within the electoral cycle . However, internal values could also drive political commitment, either reflecting parties' political views or the "aim to be perceived as 'responsible' problem solvers" , thus facilitating diffusion. This is why politicians may aim to prioritize adaptation in urban areas even though they are aware that it will likely cause conflicts with other issues, especially in growing regions such as Rhein-Neckar. However, it is important to point out that such diffusion mechanisms do not necessarily play out symmetrically across cities; they can also display variations both within and between cities . In addition to the way in which political scientists view diffusion mechanisms, geographers who study policy mobility-a theoretical concept related to policy diffusion -have long argued that more attention should be paid to how adaptation or mitigation influence "the mobility of policies between contexts" . Especially at the local level, spatially relevant interventions such as adaptation can necessitate cooperation between individual municipalities . Therefore, space is a relevant factor in the study of policy diffusion and adaptation and can subsequently lead to policymaking processes involving horizontal diffusion . However, this does not mean that policies must diffuse such that they are identical to the policies in other jurisdictions. Prince argues that policies can look different in different places but are nonetheless "connected [and] muta[ting] across space and time" . This assumption is based on an extension of the concept of relational space. Here, cities are not only seen as part of networks but also represent networks themselves. According to Jones's concept of phase space, both relational and territorial perspectives play an important role. Thus, it is not only relevant what already exists but also what possibilities the current state of space entails in the future . Freeman extends this idea and speaks of "policy-making as occurring in wave form" . Here, the direct and communicative exchange is in the first line of tacit knowledge between individual actors, through which the mobility of policies in fluid space can be explained and ultimately codified. In our view, the governance mechanisms of metropolitan regions can make an important contribution to facilitating exchange processes and enabling the spatial concepts presented above, primarily by creating a fluid space of exchange between different networks between and within cities. Therefore, we do not examine one existing adaptation policy per se but present information to local policymakers across cities within a single region about different adaptation policies. This way, we can uncover individual-level considerations for the policies' adoption. We apply the framework of Blatter et al. , which was developed for the national level, to diffusion mechanisms at the subnational level. In the diffusion literature, internal political determinants and political economic explanations of adaptation are rarely tested at the individual level . In our study, we thus go beyond the structural, environmental level that is usually the concern of diffusion studies by integrating the three causal diffusion mechanisms for adoption in the specific case of the Rhein-Neckar Metropolitan Region. This allows us to study these causal mechanisms in greater depth, which Starke argues is particularly well-suited for understanding why policies diffuse and through which mechanisms this diffusion occurs. Indeed, most papers use quantitative approaches that frame adoption as binary , but this "does not allow for a nuanced assessment of the outcome of the diffusion process" . We also make a point to look at diffusion processes from a multidisciplinary perspective and combine insights from political science, geography, and spatial planning. This approach allows us to better understand the various challenges and framework conditions associated with adaptation diffusion in a local urban context. By combining these theoretical perspectives, we further contribute to the diffusion literature by showing how local decision-makers-in particular, politicians-influence the diffusion of adaptation. This, in turn, sheds light on the role of politics in policy diffusion . --- Study area and selection of case study region: Rhein-Neckar Metropolitan Region The Rhein-Neckar Metropolitan Region is situated in southwestern Germany and is often valued for its excellent infrastructure. It spans three federal states-namely Baden-Wuerttemberg, Rhineland-Palatinate, and Hessen-and thus has administrative as well as political differences. Since 2005, a joint state treaty has regulated uniform regional planning and policy across the state borders and the region; this treaty "is [..] regarded as a pioneer of cooperative federalism in Germany" . The creation of a uniform regional plan aims to standardize the various federal state-specific laws, regulations, and planning cultures, including in the context of spatially relevant climate projects . However, there is no uniform climate action strategy for the metropolitan region; instead, reference is made to individual strategies in the independent cities and municipal districts. In addition to the planning association, metropolitan governance is shaped by the association "Zukunft Metropolregion Rhein-Neckar" , which emphasizes the importance of economic actors in the region, and the "Metropolregion Rhein-Neckar GmbH," a public-private partnership . Another special feature of the Rhein-Neckar Metropolitan Region is that 18 municipalities in the Baden-Wuerttemberg part of the region form a neighborhood association. This association's central goal is to develop a common spatial and settlement structure. In addition to cooperation efforts, it is also responsible for land use planning and thus has legally binding planning structures . By perceiving "metropolitan regions as a political concept […] [m]etropolitan policies are not […] isolated systems, but rather […] more general shifts in political fields dealing with territorial changes" . The region has agency as an entity and carries out regional development projects under its own auspices, supports and coordinates the work of existing regional networks, and engages in regional marketing . In relation to regional governance in Europe, Albrechts et al. argue that urban planning theory and practice also have incentives, for instance, "to articulate a more coherent spatial logic for land use regulations" . Nevertheless, in all European Metropolitan regions, there is a continuing struggle to negotiate and integrate the views of different actors and a corresponding advance in "agreementbased policy styles and the rise of a new 'contractualism' in planning and governing metropolitan regions" . It follows that ongoing processes of negotiation and coordination must take place at different spatial levels, which can either support or hamper diffusion processes. The Rhein-Neckar Metropolitan Region includes three smaller big cities -Heidelberg, Mannheim, and Ludwigshafen am Rhein-as well as smaller but economically strong cities, such as Walldorf and Weinheim. Together, these provide good employment opportunities and a high standard of living for the region's 2.4 million inhabitants . For our study, we selected the following case study cities: Heidelberg and Mannheim as two smaller big cities, Worms and Speyer as two larger medium-sized towns , Weinheim and Leimen as two smaller medium-sized towns , and Walldorf as a larger small town . Furthermore, these cities also fulfill different functions in the spatial planning sense according to the central place concept, which is intended to create equal living conditions across the region ROG3 ). The concentration of infrastructure and settlements and the provision of services of general interest in central places are considered principles of German spatial planning . Indeed, the central place concept has been an important cornerstone for supralocal, sustainable planning and the formation of development axes since about 1950 . In the new spatial planning guidelines of 2016, the concept of central places continues to play a major role in planning, especially with regard to the provision of "public services by creating the basis for the obligation under public law to provide public services and civic engagement to complement each other" . Heidelberg and Mannheim are high-order centers; Worms, Speyer, Walldorf, and Weinheim are middle-order centers; and Leimen is a low-order center. According to BBSR , low-order centers serve the basic needs of the local population, middle-order centers supply the surrounding areas and cover higher periodic needs, and highorder centers cover the most specialized needs. Middleorder centers are particularly important for the complete and easily accessible supply of the population. Although a paradigm shift from hierarchical structures to network models is already being discussed , central places continue to have far-reaching significance for both the surrounding area and the other cities in the region through urban-rural linkages . In the context of the present study, such linkages can promote diffusion processes of adaptation. --- Data and methods Semi-structured elite interviews with relevant local and regional stakeholders were deemed the most appropriate method for studying policymakers' motivations and diffusion mechanisms in the Rhein-Neckar Metropolitan Region. A total of 28 face-toface interviews were conducted with 14 local politicians and 14 administrative bureaucrats between June 2017 and June 2018. The sample is very diverse and consists of current and former lord and first mayors, different political party members of environmental committees and district councils, senior members of local planning and administration offices, and representatives from the regional metropolitan association. The local politicians were difficult to reach; only 14 local politicians of the 53 contacted agreed to be interviewed for this study . The interviews were conducted in German and translated into English for this paper. They lasted between 25 and 90 min. All except one of the interviewees gave permission for the recorded audio files to be transcribed . The transcriptions were analyzed qualitatively using MAXQDA software, which helps to structure and organize large quantities of data and construct coding schemes. Two independent researchers analyzed the same interview material separately and then compared the coding to ensure intercoder reliability. --- Results: the diffusion of adaptation in the Rhein-Neckar Metropolitan Region In this section, we present key empirical findings from our interview analyses and connect them to the three main diffusion mechanisms. The focus of our analysis is on the three policy diffusion mechanisms-learning, competition, and emulation-evident at the local and regional levels. --- Learning: sustainable urban planning with regard to adaptation In terms of strategies for responding to the increased vulnerability of climate change, the interviewees' understanding of adaptation proved varied and unclear. While some 1; 25-26), others differentiated between the two strategies but others were unable to differentiate between them at all . One city councilor plainly stated that "adaptation is a term which is new to me," while one politician even proclaimed that, "We do this [adaptation] in Africa, but not in Germany" . These differences in knowledge existed between different cities and parties and, at times, within the same departments and political parties . Planners were generally very knowledgeable about both adaptation and mitigation, emphasizing that they must "go hand in hand" in concrete planning situations and that the inclusion of both adaptation and mitigation should not be a simple box-ticking exercise in planning. The goal is to consider any effects of climate change in implementation planning and to prevent or respond to them in the medium and long term by means of "climateecological urban redevelopment" : A few square meters are now mitigation, the next square meters are adaptation or stormwater management or so, that's nonsensical, […] there has to be a [coherent] concept . Given the Rhein-Neckar Metropolitan Region's high population density, housing is important in urban planning. This is why some cities do not want to legally mandate adaptation, particularly when new housing projects are created; learning processes have made it clear that these measures only provide benefits through owner voluntarism and proper maintenance. In this respect, there are sometimes different assessments between the administrative staff and politicians: We have been approached several times with the idea that we should specify green facades. So far, we have always rejected this […] it only works if the owner really cares about it and if he wants it. […] That means there are still some city council members who think we should stipulate that, but then we always explain to them why we don't do that. With regard to the role of experts, many interviewees stated that they tend to reach out to external experts because of the lack of capacity and/or internal expertise within some of the cities. By involving external experts, conceptual knowledge is imparted with profound understanding, and a deep level of knowledge is achieved . Smaller municipalities are usually not able to consult such external experts because of budget constraints. However, when they do, learning processes develop in which the administration profits from the external experts' knowledge transfer and politicians place greater trust in technical expertise and become more likely to adapt proposals and concepts . As a rule, it's better to assign specialist offices […]. We are too small a city administration to employ our own climate experts. But also the objectivity is perceived differently […]. In contrast, larger municipalities are equipped with greater financial resources and can hire specialized staff. Such experts not only become part of the staff but are also able to facilitate the development of conceptual knowledge within the municipality's existing staff. As one interviewee told us, the administration's own knowledge is also confirmed by Europe-wide certifications in order to represent the expertise externally and across all actor networks within the city. We have a climate action officer in the city. We have an energy manager in the city. We have now been certified twice by the European Energy Award, and I am willing to stand up and say that we have done it ourselves and can do it ourselves. Without external reputation or certification, it is often challenging to be viewed as valid. In particular, politicians have too little trust in the expertise of their own administrative staff and would rather have this knowledge confirmed by external, independent experts. This hinders learning processes within the municipal networks and causes avoidable additional costs. In order to counteract this and to promote policy diffusion through learning, cities sometimes also join networks that specifically exchange information on different sectoral plans. Such networks mutually discuss best practices as well as failed project proposals, as was the case for Worms when it joined the Climate Alliance . In addition, mayors are typically assigned a special role in the diffusion mechanism. They can promote adaptation policies through direct local action, close relationships with intergovernmental networks, and links to companies that operate and invest beyond the municipal level . Thus, policy diffusion is facilitated through learning processes by individuals who can serve as role models and "teachers" for adaptation and mitigation through their actions, communications, and activities in urban and regional networks: Leadership from mayors is important for adaptation. For instance, the engagement of the lord mayor of Worms, as head of the municipal administration, has a strong influence on the cities' decisions and projects and leads to the adoption of adaptation in the city's building and finance committees. --- Competition: limited cooperation between cities and the role of the association network Various levels of cooperative behavior were displayed by local decision-makers between municipalities in the Rhein-Neckar Metropolitan Region. In theory, the concept of metropolitan regions in Germany is to establish a form of regional governance and to build a network between the individual municipalities so that different communities can cooperate with each other flexibly and voluntarily . In reality, however, interviewees brought up examples in which cities do not work together. For instance, the following was reported in the case of bicycle paths, which are not confined to the metropolitan region alone: "For example, in the metropolitan region, there are central axes where a bicycle path is being built from Heidelberg to Schifferstadt, and the state of Rhineland-Palatinate is not paying anything" . What is more, cities were influenced by cities and initiatives outside the metropolitan region. One interviewee stated that they looked at Constance, which developed a set of rules that was used as a blueprint for Mannheim . Another interviewee explained that they were strongly influenced by the city of Essen because they initiated the Climate Alliance network that Worms later joined . Nevertheless, cities within the Rhein-Neckar Metropolitan Region continue to operate as separate entities and implement projects on a municipal basis. Thus, the respective policies, planning cultures, and learning processes with respect to adaptation-and especially the freedom of design of individual departments within the administration-influence the local implementation . The neighborhood association of the 18 municipalities in the Baden-Wuerttemberg part of the metropolitan region illustrates the advantages of cooperation. Particularly within the framework of the environmental impact assessment, which evaluates the direct and indirect effects of planning projects on the environment, compensation areas must be made available in the case of environmental interventions. These compensation areas can be seen as involved in either mitigation or adaptation: "We have proposed a total of six areas that you can then create, for example, as inter-municipal projects, which can be developed together, as compensation" . Another interviewee pointedly stated the following: "[Cooperation happens] when it is necessary, but there is still usually a bit of parochial thinking. […] Every city or every municipality has to spend money on compensation, and then you'd rather do it in your own municipality, if you can do it, then somewhere else" . This quote shows that concrete planning decisions, including those about adaptation, tend to be made at the municipal level without much involvement from other cities. However, individual actors only coordinate with the regional authorities on green space management when they need to . --- Emulation: appropriateness of adaptation and issue competition Local decision-makers' views on adaptation make clear that they broadly agree that climate change is an important topic. However, views about the appropriate course and scale of action, such as whether to prioritize adaptation or how urgent it is to make open and green spaces available as part of adaptation, differ between cities. On the one hand, local politicians, administrations, and representatives from regional associations reported that climate change is a highly important issue for municipalities and the region: "It has a high, high priority," one city councilor confirmed . The impacts of climate change are already being felt in various ways, including heat waves, insufficient cooling at night, intense rain and flooding, and changing tree populations . Feeling the effects of climate change makes inhabitants of the region feel vulnerable. One mayor summarized the situation as follows: The topic of climate change plays a very, very big role. This may be because we are directly located at the Upper Rhine Valley and […] have been able to observe for the last 30 years that we have increasingly hot and long summers and longer dry periods. In a similar vein, the previous lord mayor of Speyer stressed that attaining climate objectives was one of the key issues he wanted to tackle when he took office in 2010. His predecessor had become involved in environmental and climate causes, which were also very important to him. Upon taking office, he implemented a different governance structure in his office, restructuring its divisions in an interdisciplinary manner so that they would be better equipped to tackle climate change from a holistic perspective. Having just lost re-election, he stated that he did not regret engaging with so many climate issues throughout his term . Such a view disagrees with the common mantra that politicians only care about re-election and shows that some elected politicians are willing to respond to climate change. In another example, one mayor was keen to discuss measures they had taken in consideration of climate impacts because "it is simply necessary to do them [adaptation and/or mitigation]. Plain and simple" . In contrast, some interviewees argued that the long-term aspects of climate change did in fact diminish its importance in decision-making processes at the local level. For example, one member of the Christian Democratic Union 4 argued that climate change is not nearly high enough on the political agenda due to the issue's long-term nature: Unfortunately, I agree. And we cannot simply destroy the planet without thinking where we will be able to live in 10, 20 years. […] I really don't understand why we [the CDU] leave this issue on the political sidelines. City councilors reported that municipal politics usually have a 5-to 8-year cycle within which certain short-to midterm interests and dependencies are prioritized . Overall, willingness to build long-term policy approaches exists, but the serious prioritization of climate concerns remains rare. However, this has nothing to do with the topic of adaptation per se, but "that's [rather] a problem of democracy, that longterm problems are more difficult to tackle, but we won't be able to change that. Then it's all about conviction" . One issue that the interviews clearly revealed was that competing land-use concerns were far more important to municipalities than adaptation. For instance, politicians discussed the issue of mobility intensely. Many interviewees commented on the significance of mobility, and one even stated, "it's the mega topic, mobility, really" . Good infrastructure is an absolute priority for many cities. Indeed, increasing traffic, road work, or ticket costs are more pressing than climate change: "Transportation is the main issue; it's the most important issue of municipal politics in Heidelberg" . In addition, environmentally friendly and new forms of mobility are also considered: "In terms of transport infrastructure, this will also happen above all via cycling expressways. This project is very, very positively received" . Another competing topic that surfaced during interviews was agriculture. Due to the region's rich soil , available space is primarily used for small-scale farming rather than for renewable energy . This led one mayor to conclude the following: "Supplying the general public with 'organic' and regionally cultivated food, which we all want, or renewable power generation-it's impossible to solve. For me, this conflict is impossible to solve" . The provision of housing was another core issue that surfaced throughout the interviews. Many portrayed the need for living space as far more important than adaptation in urban areas. One mayor noted the following: The core conflict cannot be solved: They [real estate companies] want to build-that's it. And for them, what is in these [climate] concepts, is often an obstacle. A tremendous obstacle . Compromises include fitting rooftops with solar panels or greening measures. Indeed, many passive houses in cities in the Rhein-Neckar Metropolitan Region are already energy efficient. Interviewees also stated that passive houses had downsides as the default option, "because it usually also means more costs and investments" -money that mayors are not always willing to spend . In addition, bureaucrats are cautious about tender offers that specify the implementation of climate measures. A city councilor reported the following: For instance, if I write a tender offer and want to say that I only want investors who put a solar panel on rooftops-there is just too little cooperation and willingness from the local administration. They always say, "No, we cannot dictate that." These quotes show that policymakers in densely populated areas such as the Rhein-Neckar Metropolitan Region deal with a multitude of concerns. Thus, adaptation competes with other population pressure and economic-related issues and interests. So far, only a few politicians or planners see significant merit in viewing adaptation as an integral part of future plans and projects. --- Discussion In focusing on the Rhein-Neckar Metropolitan Region, we assumed that this regional entity would act as a boundaryspanning collective actor allowing the municipalities to coordinate adaptation planning. However, while the analysis revealed that the regional metropolitan association offers many possibilities for addressing climate issues within the region, we also found evidence of its compromised power and influence. We found that cooperation between individual municipalities and the regional association takes place at the level of information exchange but not in the case of space-relevant questions concerning adaptation . Rather than influencing each other, the cities looked outside the metropolitan region for networks such as the Climate Alliance . Thus, the activities of the metropolitan region and the neighborhood association seem to be insufficient to influence "the domestic will-formation and decisionmaking processes" of the different municipalities. This is consistent with the work of researchers such as Bulkeley and Kern , who have long argued that insufficient guidance and financial resources are given to local authorities and that such authorities therefore have low incentives to collaborate with others, especially concerning adaptation . Table 1 summarizes these barriers. One crucial finding in the context of emulation was that most bureaucrats and politicians were unwilling to devote more attention to adaptation. Rather, it seemed as if adaptation represented yet another concern that local policymakers had to consider, adding to the already growing number of responsibilities in metropolitan regions . This also prevented more systematic coordination, as evidenced by the fragmented cooperation between the local and regional levels and between municipalities. Nevertheless, the increasing frequency of recordbreaking heat waves might compel policymakers to rethink their priorities and their integrative thinking in the future. Local politicians across all interviewed parties did understand that climate change is important. However, both planners and politicians thought of adaptation as "add-ons"-that is, measures resulting from, for example, the designing of new building sites or the incorporation of greening space, but which play a subsidiary role in actual planning processes. Interestingly, the electoral cycle did not necessarily influence long-term investment in climate change. However, most mayors' motivation was geared towards mollifying the impacts of climate change, which are already being felt. Such political commitment to adaptation could be characterized as fragmented, likely showing more "political rationalities […] [where] the focus is no longer on the environmentally desirable, but on the politically feasible" . Especially when considering emulation mechanisms, the socialization and embeddedness of questions in the fluid space plays an important role in assessing the appropriateness of different measures and actions . Put differently, depending on how actors are socialized , the assessment of appropriateness varies. In this sense, despite some visible political commitment and, at times, internal personal convictions, efforts were not strong enough to facilitate broader diffusion. --- Conclusion What are the challenges and conflicts that arise among different actors in the context of adaptation? What factors foster-or hamper-adaptation policy diffusion mechanisms ? This study set out to uncover adaptation diffusion processes at the subnational level in the Rhein-Neckar Metropolitan Region by investigating three core groups: local politicians, local bureaucrats, and the metropolitan association. Overall, local actors displayed insufficient knowledge and/ or different levels of understanding about climate change. We found remarkable differences in the politicians' understanding, and adaptation was especially poorly understood; with a few exceptions, this held true for actors in the administrative sphere. Moreover, our results showed that the context and even the personal insights and understanding of the issues determined the actual focus of the planning measures, thus influencing diffusion processes and inhibiting learning mechanisms. The results of this study should be interpreted with caution, as the interviews only depict the views of those willing to give and share information. In the future, cities must rethink how best to accommodate emergent needs. Accordingly, this paper demonstrated the importance of studying policy diffusion from a multidisciplinary perspective and taking a closer look at local, political, and spatial factors. Even though circumstances in Germany differ from those in developing countries, this study may still offer insights into how adaptation diffuses-or not-in city networks and regions, especially in those that have limited space to accommodate adaptation. It may also deepen our understanding of the limits of policy diffusion mechanisms. The region organized a number of climate-focused events where issues relating to adaptation are addressed in a concrete and location-independent manner Politicians and, in particular, urban planning actors can draw from environmental urban redevelopment experiences and apply them to adaptation Learning processes are hindered by a lack of knowledge within the respective city administrations or a lack of trust of other actors in the urban actor networks in the expertise of the city administration In addition, there is a lack of cooperation between epistemic communities. This is particularly surprising in large cities with a strong university reputation, as in the case of Heidelberg Competition The Heidelberg-Mannheim Neighborhood Association acts as a boundary-spanning actor, showing how individual policymaking processes in one polity have found positive resonance and have led to the cooperation of 18 regional municipalities, for example in relation to the preparation of a joint land use plan On the regional level, the influence of metropolitan governance structures is largely limited to information and networking meetings From the perspective of relational space, cities must be seen both as independent networks and as part of large networks. This leads municipalities to have individualist perspectives and limited cooperative engagement, which hinders policy diffusion within the regions. For example, with regard to engagement within initiatives, cities looked outside their metropolitan region for partners, not necessarily within it Emulation Local policymakers broadly agreed that climate change is an important local issue. Seeking political re-election does not necessarily stand in the way of implementing climate-relevant measures-even if the positive effects may not be felt until the next election cycle Policymakers' perceptions about the urgency and appropriateness of adaptation -especially in comparison with other local issues -was still limited ---
Because the impacts of climate change are felt at the local level, we assess adaptation diffusion mechanisms (i.e., learning, competition, and emulation) among smaller big cities and medium-sized towns. Since the diffusion of adaptation has immediate spatial implications, we argue that local conditions play an important role in the diffusion process. The densely populated Rhein-Neckar Metropolitan Region in Germany is an ideal case for studying diffusion mechanisms with regard to adaptation. Using a rich data set of 28 interviews, we unpack the views of local actors such as mayors, city council politicians, city administration representatives, and representatives from regional agencies and identify factors influencing the diffusion of adaptation. We find limited or compromised diffusion due to insufficient knowledge about adaptation, competition between municipalities, and cooperation with cities outside the region. In addition, we find some (albeit limited) political will for adaptation. While some of the interviewed politicians considered making long-term investments in adaptation, most highlighted competing local issues and viewed adaptation with caution, illustrating adaptation's lack of salience and social legitimacy. Indeed, one crucial finding was that housing and mobility are more important to a wide range of politicians and bureaucrats alike. By examining diffusion mechanisms at the subnational level, we combine theoretical perspectives from political science and geography to show how local decision-makers-in particular, politicians-influence the diffusion mechanisms of adaptation.
INTRODUCTION The development of a base of knowledge and the recognition and definition of means to communicate it are requirements for a profession. Thus, any nursing practice needs theoretical foundations. The theory can offer a systematic way to view facts and events, and provide contribution to the research process, diagnosis, planning, implementation and evaluation of nursing . Serving as instruments to the various fields of nursing practice, the theories should guide research, teaching, management and care assistance. By developing theories and studying their applications in professional practice the status of science is enforced and the specific field of knowledge is widened . Care is a complex and multidisciplinary concept. Reflecting on the specificity of the concept, there are different existing definitions that explore various perspectives and complement each other. This study adopted the definition of Madeleine Leininger, who defines care as the actions and activities directed to the assistance, support or training of another individual or group with clear or anticipated needs, to improve the human condition, way of life or to face death . In the Theory of Culture Care Diversity and Universality, Leininger conceives the existence of social and cultural forces that exert important influences on human beings and, consequently, on the process of care. Considering this, health professionals should give more attention to the resulting attributes of culture. In the nursing field, the disregard for these factors in care practices, the looseness from the cultural reality of the person, the incongruity between the act of caring and their values and beliefs may result in the appearance of cultural conflicts, frustrations, stress and even moral and ethical concerns . This theory was represented by the Sunrise model. This model facilitates the understanding of the triad individualfamily-group when facing their cultural values and ways of life, being relevant to the nursing care by allowing the construction of complex and critical thinking about the dimensions of the cultural and social structures in each specific context . Composed of factors that relate to each other, interfering in the process of nursing care, the model is divided in four levels: 1 -it leads to the study of nature, significance and attributes of nursing care; 2 -it provides knowledge about the individuals, families, groups and institutions, in various health systems; 3it focuses on the popular system, the professional system and, in it, nursing; 4 -it is the level of the decisions and actions of nursing care, which involves the cultural preservation/maintenance of care, cultural accommodation/negotiation of care and the cultural repatterning/restoration of care . We believe that the process of nursing care of dependent older adults at home by a family member has its own characteristics in different contexts, despite being an universal phenomenon observed in multiple nationalities and cultures. Having this as basis, the nursing care must be based on the theory of cultural care, being adequate to every individual or group, respecting their characteristics and using actions that are consistent with the values and the needs identified in each situation . This study is relevant when considering the rapid demographic and epidemiological transition in Brazil, which contributes to incite dependency relationships that interfere in the social interaction processes of older adults and create the need for family care . Thus, analyzing the care provided by family members to older adults in need of assistance in Brazil, becomes extremely important to meet the needs and demands of this population. Through the cultural dimension of nursing care, the nurse avoids the nursing care practice as just empirical or technical, and performs a practice rooted in scientific and theoretical models. In the context of family caregivers of dependent older adults, the nurse needs to perform nursing care using family experiences, the sociocultural context of the family, considering nursing experiences from the culture in which the binomial older adult-caregiver is inserted . Based on this premise, we wondered: how the nursing theory of Culture Care Diversity and Universality could provoke reflections on the phenomenon "the life context and the experience of caring for dependent older adults in the home environment by family caregivers who show performance overload and emotional distress"? Caring for dependent older adults might entail negative aspects to the relative, such as changes in physical and emotional state, imbalance between activity and rest, as well as compromised individual coping. These are the attributes of the strain placed on the caregiver, this is a significant aspect of our cultural care reality . Given the context of performance overload and emotional distress of the family caregiver, knowing their psychosocial responses allows the understanding of how to plan for home care. --- OBJECTIVE To present an analysis of nursing care experiences done by overloaded and emotionally distressed family caregivers of dependent older adults at home, pointing to the implications for the practice of Nursing with the use of the Theory of Culture Care Diversity and Universality. --- METHOD --- Ethical aspects The project met the recommendations of Resolution no. 466/2012, of the National Health Council, which regulates research involving human beings in Brazil. The survey was conducted with approval by the Research Ethics Committee of the University Hospital of UFJF. This study used precious and semi-precious stones as codenames for the participants to guarantee their anonymity. --- Theoretical-methodological framework and type of study This is a qualitative study using Grounded Theory as the method to understand the care process performed by family members with different sociocultural patterns. The Theory of Cultural Care Diversity and Universality of Madeleine Leininger provided subsidies for this analysis through these concepts and assumptions: culture, cultural care, diversity of cultural care, universality of cultural care, vision of the world, Family caregiver of older adults and Cultural Care in nursing care Couto AM, Caldas CP, Castro EAB. environmental context, nursing, culturally congruent nursing care, maintenance of cultural care, adjustment of cultural care and repatterning of cultural care . --- Study scenario The research took place in two scenarios. It was initially focused on the Ambulatório de Geriatria e Gerontologia do Hospital Universitário da Universidade Federal de Juiz de Fora [Geriatrics and Gerontology Clinic of the University Hospital of the Federal University of Juiz de Fora], Minas Gerais -Brazil, serving as the place to identify older adults dependent of others for their Basic Activities of Daily Life and their main caregivers during nursing appointments. The home of the binomial dependent older adult-family caregiver became the second scenario. The strategy adopted to collect data were home visits as a form of getting closer to, knowing and characterizing the caregivers as well as observing their work overload and emotional distress. --- Data collection and organization A total of 78 older adults were evaluated, the Katz index was used to determine the degree of partial or important dependency on the BADLs. Of these, 27 older adults were identified. The main family caregiver of the dependent older adult was identified and evaluated for the presence of performance overload on the caregiver role, using the Zarit scale for assessing caregiver burden and for detecting emotional distress . After identifying the performance overload and emotional distress levels of the relatives, those who presented moderate, or moderate to severe performance overload and scores above the cutoff point for emotional distress in the SRQ-20 scale were selected to participate in the qualitative phase of the study, which occurred between August 2012 and March 2013, period in which this article was written. Twelve caregivers met the inclusion criteria. Semi-structured interviews and participant observation were done during the home visits, field journals were made for nine of these caregivers, noting the theoretical saturation. Data were collected after signing the Informed Consent Form, in one or two meetings, by appointment and prior consent. The field notes were recorded as topics in a diary during the observation period and later expanded in the form of memos. The transcripts of the interviews and the pre-analysis were done after expanding the notes and before the next interview, starting the processes of open, axial and selective encoding, as pointed by the methodology . --- Data analysis The emerging content were transcribed and analyzed as proposed by the Grounded Theory method, by open, axial and selective encoding. Through this process a group of codes in subcategories were obtained and then, categories according to concepts that led to the reflection of the phenomenon "the life context and the experience of caring for dependent older adults in the home environment by family caregivers who show work overload and emotional distress." The context-focused intervening conditions allowed the further analysis through the Theory of Culture Care Diversity and Universality of Madeleine Leiniger. --- RESULTS It was possible to identify the potentialities and frailties described in the four categories formed to explain the phenomena through the observation in the homes of families who live and care for a dependent older adult and through the interviews conducted with the main caregivers. The four categories are: becoming a caregiver; the experiences of being a caregiver for a dependent older adult; demands resulting from the process of nursing care for a dependent older adult by a family member; and search for support and training. Potentialities in the context of home care for the dependent older adult An identified potentiality was the prior experience with the process of care, by performing as the caregiver to other family members or even volunteer work. This characteristic outstood as a facilitating aspect for the adaptation to the routine of care that needs to be provided to the current dependent family member. I had taken care of older adults already, bathed, fixed their hair, helped them with dressing, made the bed, did laundry. They were known, [...] it was voluntary. That helped me a lot. However, they reported that numerous difficulties were faced in the initial phase of the caregiver role -fear, insecurity and inexperience were frequent. Over time, the relatives experienced relief of those feelings and scenarios, the emergence of adapting to their new life condition was noted, which facilitated their perception and identification of resources to overcome the obstacles. The caregivers, through their continuous care experiences, consolidated the experience and gradually adapted to the needs and routines of the older adult required by nursing care. This led to the adaptation and establishment of an empirical process of care. Thus, strategies were created such as delegating responsibilities to other family members to minimize the overload and emotional distress feelings as well as avoiding suffering. Positive feelings, such as affection, solidarity, appreciation of their actions, in addition to moments of harmonious interaction between the caregiver and the older adult, emerge from the continuous caring experiences, which can be identified on the reports given by the caregivers. We comprehend these feelings as fundamental to the maintenance of the self-esteem The existence of stimuli in the everyday life of the care relationship is also identified such as the support of secondary caregivers and the possibility of delegating some activities to other family members. The existence of support, especially financial, was identified as well as the direct collaboration in the care for the older adult. It was possible to identify through the experiences with the caregivers in nursing appointments and the home visit followed by interview for this study, movements of support and professional support seeking the forming of a social support network, the start or increase in frequency of the search of religiousness/ spirituality as major strategies to keep performing the task of caring. These actions were aimed at the minimization of the negative effects caused by the stress in the role of caregiver. Frailties in the context of home care of the dependent older adult The loss of autonomy and independence of older adults was mainly related to the emergence and evolution of chronic diseases. Dementia profiles were diagnosed in six of the nine dependent older adults cared by the participants of this study. I The changes caused by these profiles , on the perception of the surveyed caregivers, is that they make them feel anguish, pain, sadness, anger and even depression, showing a difficulty in accepting the process of family dependency of the older adult. Another difficulty reported by the caregivers was the absence of prior experience with the process of care. When caregivers became aware of the responsibility that was dropped into them, when all the basic and instrumental daily care needs of the relative became their responsibility, they felt threatened by lack of knowledge or skills, especially to perform some activities such as bathing, diaper change and administration of medications. We observed that the formation of the role of main caregiver was accompanied by impacts on various aspects of life and health, causing a series of limitations and difficulties for their lives. According to the participants, the higher risks of getting ill, self-negligence, performance overload and emotional distress are caused in part by the uncertainties and the dilemmas in the family relations, and for the most part, the absence of an established support network of family members. The lack of days or moments off and the absence of relay of the care activities between family members are examples. --- My biggest difficulty is the lack of support within the family. So, it was very hard. Not having anyone to share the responsibility. I take care of her every day, weekends, Saturday, Sunday, holiday, there are no breaks or days to rest. According to the reports of the participants, the routine experience of nursing care of dependent older adults can be understood as the set of changes that happened in their lives from the moment when the need to take such care took place. In the initial context, caregivers reported that the love life started to occupy a secondary plan, they had to leave work to take care of the family member, in addition to the loss of commitment with social activities such as leisure activities and changes in their health conditions. Changes in the health conditions include changes in the usual pattern of sleep, with a reduction of time and quality, because of the constant interruptions. As the dependency advances, progressive changes in the daily lives of families happen, especially in the course of life of the main caregiver. The routine of care was shown to be pervaded by diverse and contradictory feelings such as fear, sadness, insecurity, concern, conflicts and tensions. Fear was a very common sentiment and it was related to several factors, being evidenced by the fear of "the degree of dependence" of the older adult getting worse and this representing an increase in the already high demand for care given by the caregiver. We are afraid she will get even worse. How are we going to do? It's going to be even more difficult. --- [...] I'm scared to death of her getting worse and not being able to handle it. Some repercussions in the dynamics of life arising from the process of caring for the dependent older adult were highlighted by the participants: the family conflict permeated by disputes and accusations; the lack of time for self-care and maintenance or involvement in social activities; and those of economic nature, with suppression of spending with themselves, given the increase in expenses with the older family member. --- [...] To be able to hospitalize her I have the family thinking badly of me. Half the family dislikes me, because I fought to go with her to the hospital. --- I cannot fix things right, because who handles sick people cannot handle everything [...] I lack time to do everything, I can only take care of him. There is no time to think of me. We live in the grace of God, because there is no more room on my budget. We should highlight that the costs of the care fall upon the family, especially those with low income and that live with dementia, wounds or any other injury that requires therapy and specific technologies, not always available at the health system. In addition to the social and emotional costs, the financial cost consumes the resources that the caregivers used to invest in themselves. This factor requires further study to detail the costs of family caring for dependent older adults. --- Implications for Nursing The in-depth study of the phenomenon "the life context and the experience of caring for dependent older adults in the home environment by family caregivers who show performance overload and emotional distress" from the theoretical framework of Culture Care Diversity and Universality of Leiniger made the construction of a theoretical scheme possible. Derived from the analysis of possibilities of culturally congruent nursing care, through the three modes of action: adjustment , preservation/maintenance and repatterning/restructuring of culture care. --- DISCUSSION Nursing assistance in situations of chronic or irreversible dependency, comprehended using the Theory of Cultural Care Diversity and Universality, brings attributes that the professional should prioritize instead of chasing the cure, which is not always possible, focusing on care, which is an essential human need. Through cultural care, the nurse adopt in these cases one of the assumptions of the theory: "cure is impossible without care, but there may be care even with no possibility of cure" . In scenarios in which the cure of pathological processes is impossible, as in the cases of dementia or the reversal of the dependency, it is up to nursing and the family caregiver to provide the required care so the older adult, in its limitations, is taken care of. The development of coping strategies to overcome the negative feelings can be stimulated. These feelings might be originated from a cultural way of relating to living together and having to take care of a dependent older adult and in need of home care from the family . --- Family caregiver of older adults and Cultural Care in nursing care Couto AM, Caldas CP, Castro EAB. Professional investment on nurse care according to the cultural dimension becomes relevant to change the scenario of suffering that is established through the continuous life of the caregivers, who take high loads of activities resulting from the dependency process of the older relative . Potentialities and frailties that influence the intensity of the overload and emotional distress levels of the family caregivers were identified along the studied sociocultural context of the formation of the caregiver role. The formation period seems to be a moment in which the families need monitoring and support from health professionals and from a support network, this would enforce the positive aspects while minimizing or eliminating the negative aspects identified . The prior experience with the process of nursing care and the support from secondary caregivers who contribute sharing the daily activities are some of the potentialities identified. Prior experience in other care situations contributes to the change of posture and attitude as the main caregiver facing the new nursing care relationship, since some relatives realize the need for the division of responsibilities and the need to allow the involvement of other family members. Strategies of coping or support should be identified or stimulated and supported, in such a way caregivers can periodically relieve themselves of the responsibilities and requirements inherent to the care process . Actions in this sense contribute to eliminate or reduce the emergence of morbidities and comorbidities in the binomial dependent older adult-family caregiver. We also observed that caregivers carry culturally constructed values and habits related to family roles, once they start caring for a sick or dependent family member. In addition to the bonds and interaction between the caregiver and the dependent older adult acting as positive stimuli that facilitates the performance of nursing care and contributing to relieve the tension of the caregiver, another important factor is the ability to maintain the self-esteem of the caregiver and the support and family bonding, even when facing series of difficulties and limitations in daily life of caring . In the search for support and as a form of dealing with the negative aspects of the nursing care relation, religiousness/ spirituality were pointed as an important strategy adopted by caregivers. Faith, spirituality and religious practices were cited and identified, also being used by families assessed by other studies, which consider them as very effective coping strategies to deal with stress, anguish, depression and overload resultant from the nursing care process. We understand that the caregivers seek help through the expressions of religioiusness/ spirituality to obtain the strengthening of hope, comfort and relief of suffering, establishing itself as a protective factor . We reinforce that this set of positive aspects found in the nursing care relationship established in family environments needs to be recognized, respected and valued by the nurses during the proposed guidance and support activities. By assuming this theoretical thought as part of the nursing practice the nurse could possibly adopt the principle of preservation/maintenance of cultural care to help maintain and strengthen: positive feelings, prior experience of the caregiver, adaptation to a cultural process of nursing care, interaction in the caring relationship and maintenance of the self-esteem of the caregiver. The expected result is the preservation of the health conditions of the caregiver, the ability to perform its role and thus, the promotion of mutual well-being. Feelings of agony, sadness, fear, anger, insecurity and worry experienced routinely and long term can contribute to the wear on the caregiver role . Thus, families need professional support in these situations, in such a way they can organize and establish a care routine involving the greatest possible number of family members or even friends and neighbors. This support helps the main caregivers to maintain their social activities, self-care, leisure and rest, without feeling guilty or insecure with the ability to care of the other subjects involved in the process . The situations experienced in the nursing care process demonstrate the lack of skills and appropriate training to perform the role. Additionally, they point to the need of support actions for family caregivers and even health education to provide better conditions of nursing care for the dependent older adult population, meeting the specific knowledge and skills necessary for the family caregivers to perform the actions delegated to them . Preparing and accompanying the relative in the performance of the new caregiver role is needed, helping them to overcome difficulties and to provide quality nursing care that meets all the identified needs and that is congruent with the cultural context of the family group . The way each family member performs the daily care depends on the acquired and practiced knowledge, it can be said that the nursing care actions reflect the culture of the caregiver, its family and their context. Therefore, culture determines the patterns and lifestyles, influencing the decisions made, which determines that the nurse performs care based on the culture of the subjects . The noticeable lack of guidelines and support from health services were identified as a contributing factor to the emergence of overload and emotional distress feelings by the caregiver. Considering the increased demand of time and the insecurities when facing difficulties in nursing care activities without the necessary knowledge for each scenario experienced . The difficulty of the caregiver in obtaining support in the share of nursing care tasks is related to insertion into reduced family size or because other family members work, but also due to the lack of involvement of other relatives in the dependency situation of the older adult, health problems and even the difficulty of the main caregiver in trusting in the ability of other family members to perform the function. The impossibility of sharing the nursing care activities with other relatives is a determining factor for the definition and often, for the lonely maintenance of the main caregiver . Observing the everyday life of caregivers of older adults allowed us to note that nursing care is a demanding task that causes many changes in their lives after taking the role, such changes include the abandonment of work and the economic impact on family dynamics, the lack of time for social activities and effects on physical and mental health conditions, with frequent reports of changes in the sleep pattern 20) . Not sleeping well or sleeping too little reflects on the performance of everyday activities, on behavior and on the well-being feeling . Family caregivers have shown concern for failing to take proper care of their health conditions and reported difficulty in accommodating the activities as a caregiver and self-care, the greater difficulty is the lack of family support and of social and health support networks. Sometimes the family members realize that they are living on the limits of their physical and emotional reserves, but have no one to help. In other cases, the involvement in the nursing care process is so deep that they do not realize that the limits of their conditions to provide care have been reached, sometimes exceeding these limits . Main caregivers need the help of other family members and to set days and times for each to assume part of the care processes and responsibilities. This partnership allows them to have time available to take care of themselves, to have leisure periods and to recover the energy spent when taking care of the other, minimizing the strain on the performed role. The charges in relation to the main caregiver role, the lack of understanding and support from other family members and family disputes, in addition to to the economic repercussions caused by low income families, the abandonment of work to be devoted entirely to the caregiver role and the increase in expenditure because of the demands of the nursing care process of the older adult, are contributing factors to the nursing diagnosis stress in the role of caregiver . Given this context of negative aspects experienced by the family caregiver, which cares for the dependent older adult in the home environment, the nurse can adopt the accommodation/negotiation and repatterning/restructuring of cultural care methods. The first involves actions directed at the forms or ways to negotiate, adapt and adjust the identified adverse conditions, the second refers to nursing actions that seek to assist the caregiver of older adults in the modification process of the negative patterns , such as the abandonment of work to nurse care, leisure, love life being in the background, negative feelings in the care process, compromising of their health conditions and changes in sleep and rest patterns to patterns that are beneficial to the family caregiver and the relationship of care. --- Study limitations This study was limited to the experiences of a group of family caregivers who had experienced the overload resulting from the care of a dependent older adult relative. A limitation of this research, inherent to the method, refers to the fact that data analysis has not been done independently by two researchers. Being a current and relevant theme to the daily practice of nurses from different areas, it is suggested that the issue be investigated through other methods that allow a greater generalization. Other question that arise and that will require further research through different methods relate to the sleeping pattern of the family caregiver, religiousness/spirituality as therapeutic support, the expenses of the family with the home care of dependent older adults and how the nurse is present in home care teams, adopting the culturally congruent nursing care. --- Contributions to the field of Nursing The use of Theory of Culture Care Diversity and Universality of Madeleine Leininger contributed to the reflection about the possibilities of nursing performance on the context experienced by family caregivers of dependent older adults. From the perspective of cultural care, the nurse could contribute to these families using the three modes of action proposed by Leininger -preservation/maintenance, adjustment/ negotiation and repatterning/restructuring of culture care -, thus providing nursing care better suited to the culture of the older adult/caregiver/family. --- FINAL CONSIDERATIONS The obtained results enabled us to know and understand the experiences when taking care of dependent older adults at home by a family caregiver who presented performance overload and emotional distress in the role. The methodological approach used contributed to better approach the sociocultural reality of each family, to observe the daily life of the main caregiver and to establish trust, which enabled dialogue marked by emotions and relief, and reports that expressed their difficulties, limitations, needs and potentialities. We recommend that the potentialities and frailties that stem from the process of home care of dependent older adults are recognized, picking up the values and the beliefs of the family and the sociocultural context of the family caregiver. This would enable the structuring of interventions and care plans, designed from the nursing consultations, home visits and educational activities such as groups of older adult caregivers congruently with the cultural attributes. These are possibilities that help to institute mutually established changes with caregivers, promoting better quality of family relationships of care and relieving the strain of the caregiver role.
Objective: To analyze the experiences of family caregivers of dependent older adults, who show performance overload and emotional distress, using the Theory of Culture Care. Method: Qualitative study with nine caregivers of home care dependent older adults, based on Grounded Theory. Results: The fi ndings allowed the identifi cation of potentialities and frailties in the context of family home care and subsidizing the construction of a theoretical scheme resulting from the analysis of possibilities of the nursing care practice according to the culture, through the three modes of action: maintenance, adjustment and repatterning of cultural care. Final considerations: Respecting the cultural values and family beliefs, the nurse can help to institute mutually established changes, promoting a better quality in the nursing care relationship and a relief to the strain of the role of the caregiver.
INTRODUCTION A growing proportion of adults in England need long-term care services or support to perform daily activities: an outcome of population ageing and other factors. 1 Most care is provided by family, friends and neighbours. However, supporting the care needs of eligible persons-based on a needs assessment-is a statutory responsibility of local authorities , specifically those designated as CASSRs . Some individuals also purchase care privately or obtain support through voluntary organisations. In 2016-2017, English LAs' gross current expenditure on adult social care was £17.5 billion. 2 A recent estimate of the total annual value of unpaid care was £108 billion . 3 In the current context of rising demand for care and severe constraints on LA ASC budgets, carers play an increasingly important role. Providing care could be positively associated with carers' well-being --- Strengths and limitations of this study ► This is the first study to investigate the effectiveness of local government spending on England's current adult social care system in terms of protecting unpaid carers' subjective well-being. ► Fixed-effects linear models are used to estimate the impact of local government ASC spending on carers' and non-carers ' 12- Open access due to the increasing closeness between them and care recipient and satisfaction from fulfilling this role. 4 5 Caring activities also consume carers' time and energy, often limit their paid work and social activities, and are physically, psychologically and emotionally demanding. 6 7 The negative impact of caring on carers' financial situation, physical and mental well-being and familial relationships is well documented in the international literature. 8 9 Despite increasing awareness, recognition and support for carers, and LAs' greater role in supporting them following the Care Act 2014, only a small number of carers receive carer-specific support. The ASC services LAs provide for people with care and support needs play an important role in alleviating pressures on carers, yet little is currently known about how carers benefit from public expenditure designed to support them. Local variations in ASC provision have been explored using data on ASC expenditure, numbers of LA-supported nursing home and residential care places and hours of LA-funded homecare. 1 10 11 Existing studies have used such data to assess how the provision of publicly funded ASC affects mortality, unmet need, use of A&E services and hospital admission rates. However, impacts on carers have hitherto been neglected. [11][12][13] Our study examined the extent to which LA ASC spending affects the subjective well-being of unpaid carers. Carers' well-being is an explicit focus of the Care Act 2014, vital for the operation of England's care system, and has implications for future demand for ASC. This study adds to the existing evidence base, can inform future planning of ASC, and is extremely timely, given Government plans for ASC reform. --- METHODS --- Study design and participants Our national analysis uses the British Household Panel Survey , the UK Household Longitudinal Study and official data for England on Personal Social Care Expenditure and Unit Costs and ASC Activity and Finance . [14][15][16] Individual characteristics, including subjective well-being and caring activities, are from the English samples of the BHPS and UKHLS. Current gross spending on ASC for relevant English LAs is from the Personal Social Care Expenditure and Unit Costs , the ASC Finance Return and the Short and Long Term collection . For the information on the location of the participants in the BHPS and UKHLS, we obtained Special Licence Access from the UK Data Service . 17 We merged individual-level survey data and LA ASC expenditure data using district codes. Gross spending on ASC at the LA level is not available for the 2008/2009 financial year, resulting in a gap in our analysis. --- Procedures The key outcome of interest for our analysis is subjective well-being, measured by the 12-item version of the General Health Questionnaire and the Mental Component Summary of the Short-Form 12 Health Survey . [18][19][20] The GHQ-12 Likert score ranges from 0 to 36, and a higher score represents more symptoms of depression or anxiety. The MCS-12 is a continuous score with a range between 0 and 100; here a higher score indicates a better mental health status. Individuals were identified as carers if they answered 'yes' to either of the following questions: 'Is there anyone living with you who is sick, disabled or elderly whom you look after or give special help to ?' 'Do you provide some regular service or help for any sick, disabled or elderly person not living with you?' --- Statistical analysis We applied multivariate regression analysis to investigate the moderating effects of LA ASC spending. We observe the difference in subjective well-being between people with and without caring responsibilities, and investigate how these differences vary according to government ASC spending in the following equation: SWB i,j,t = ∂ 0 + ∂ 1 Care i,j,t + ∂ 2 ASC j,t + ∂ 3 Care i,j,t * ASC j,t + ∂ 4 * Controls i,j,t + u i + u j + u t + ϵ i,j,t SWB i,j,t is one of two subjective well-being indicators for individual i, living in LA j, in year t. Unpaid care is a dummy variable equal to one if the respondent is an unpaid carer, and to zero if they are not. ASC j,t is the natural logarithm of real aggregate government spending on ASC for LA j in year t . The logarithm transformation reduces heteroskedasticity and skewness and improves the interpretability of the coefficient, for example, the changes in subjective well-being associated with a 1% change in ASC spending. In areas where the spending on ASC is higher, the infrastructure of social care services is in general better: more services are offered and residents can more readily access services. As a robustness check, we use government ASC spending per client to measure social care services . The difference in subjective well-being between carers and non-carers is indicated by ∂ 1 , and ∂ 3 is the coefficient on the interaction of Care and ASC, which shows the moderating effects of local government ASC spending on the impact of caring on subjective well-being. Control variables for individuals include educational attainment, age, marital status, financial status, employment status, health status and household size; for LAs we use dependency ratios, total population and Gross Value Added . u i , u j , and u t , represent the --- Open access individual-specific time-invariant effect, LA effect, and business cycle effect respectively. ϵ i,j,t is the idiosyncratic error term. We conducted a sensitivity analysis by grouping LAs based on their spending on ASC. We categorise those with spending in the top 25% of the distribution as having 'high' LA ASC spending and in the bottom 75% as 'lower'. We are interested in the difference in the impact of caring on subjective well-being between LAs with 'high' and 'lower' spending on ASC. To this end, we estimate the following model: SWB i,j,t = β 0 + β 1 Care i,j,t * HighASC j,t + β 2 Care i,j,t * + β 3 HighASC j,t + β 4 ASC j,t + β 5 * Controls i,j,t + u i + u j + u t + ϵ i,j,t β 1 represents the difference in subjective wellbeing between those with and without care responsibilities in areas with 'high' LA spending on ASC. If carers benefit significantly from ASC spending provided by their LA, this difference will be less in 'high' spending areas ( |β 1 | < | β 2 | ). The dataset provided information on hours of unpaid care provided per week, with the following response categories: 0-4, 5-9, 10-19, 20-34, 35-49, 50-99 and 100+ hours per week. We classify carers based on caring intensity: carers have a 'high' intensity of care if they spend 35+hours per week on unpaid care. We use a 35-hour cut-off because this is: the hours of care threshold for claiming Carer's Allowance and equivalent to weekly hours in full-time employment. We then investigate the varying effects of LA ASC spending on carers with different levels of caring intensity. --- Patient and public involvement Our analysis is based on secondary data, and all data are publicly available. The study design and analytical interpretations involved no direct contact with patients or the public. --- RESULTS Table 1 LA gross ASC spending and mental well-being Figure 1 represents the relationship between unpaid care and mental well-being across gross LA ASC spending . The figure shows that the negative impact of providing care on subjective mental well-being decreases with level of LA spending on ASC. That is, higher spending on ASC protects against poor mental well-being among carers. Figure 1A demonstrates that, all else being equal, carers' GHQ-12 Likert score is 0.7729 higher than the score for non-carers in LAs with £6 m ASC spending. In contrast, carers and non-carers have a similar GHQ-12 score in areas where LA ASC spending is £199 m . Note that LA ASC spending is a function of many factors including LA size, care need, composition of the local system, etc. We have adjusted our models with a number of LA covariates to take account of these variations and differences in local spending. Figure 1B represents the relationship between unpaid care and MCS-12 across gross LA ASC spending. The difference in the MCS-12 score between carers and noncarers declines as LA ASC spending increases. In LA areas with £6 m ASC spending, carers have a 1.2417 lower MCS-12 score compared with noncarers. However, carers' and non-carers' MCS-12 score is not statistically different in LAs where ASC spending is £121 million. High and lower LA ASC spending and mental well-being Figure 2 represents the relationship between unpaid care and mental well-being in 'high' and 'lower' spending LAs . Carers report GHQ-12 Likert scores that are 0.1893 higher than non-carers in LAs with lower ASC spending . In LAs with high ASC spending, however, the GHQ-12 Likert score for carers is not statistically different from that for non-carers . In LAs where ASC spending is lower, carers report a 0.2906 lower MCS-12 score than non-carers . There is no significant difference in the MCS-12 scores of carers and non-carers in high ASC spending LAs . Caring intensity, LA ASC spending and mental well-being Figure 3 represents the relationship between caring intensity, gross LA ASC spending and GHQ-12 Likert Score . We differentiate carers by their level of caring intensity to investigate variation in the effect of LA ASC spending on carers' well-being. Figure 3A shows that carers who care intensively report higher GHQ-12 Likert scores than non-carers in LAs where ASC spend is lower. Being a carer is not significantly associated Open access with a lower level of mental well-being in high ASC spending areas , however. Figure 3B shows that people providing care for less than 35 hours per week and non-carers report similar GHQ-12 Likert scores in all LA areas and LAs with high ASC spending ). Figure 4 represents the relationship between caring intensity, gross LA ASC spending and MCS-12 score . Compared with non-carers, carers providing 35+ hours of care per week report a 1.4247 lower MCS-12 score in LAs with lower ASC spending . In high ASC spending areas, however, people caring intensively have an MCS-12 score similar to that of non-carers . Providing care for less than 35 hours per week is not related to MCS-12 score . People who care for less than 35 hours per week and non-carers have similar MCS-12 scores in areas with both high and lower local government spending on ASC. --- DISCUSSION Our analysis covers a sample of 29 174 individuals across 122 LAs responsible for adult social services in England between 2004 and 2018. Other literature has shown that providing care is associated with negative subjective well-being, but to the best of our knowledge how this is affected by expenditure on ASC has not previously been investigated. [21][22][23] We found that high LA spending on ASC reduces the negative association between providing unpaid care and subjective well-being. We consider ASC spending a suitable proxy for provision of ASC services in an LA area, and thus conclude that such services are important in alleviating pressures on carers. Services may be provided directly to carers or can be services for those they care for-people who need Open access support to manage daily activities . This finding is confirmed by the fact that the difference between the reported subjective wellbeing of carers and non-carers is larger in areas where LA ASC expenditure is lower than our definition of 'high' ASC spending. We also find that LA ASC spending lowers the negative impact of high intensity caring on carers' subjective wellbeing. The austerity measures introduced by national government in England from 2010 in response to the 2008 financial crisis led to major reductions in LA budgets over most of the ensuing decade. 24 25 At the same time, demand for ASC was rising, as the size of the 'oldest old' population and incidence of poor health and disability in the total adult population rose, widening the gap between demand and provision of ASC. 3 26 LAs in England allocate their resources based on needs and means testing, so it is not surprising that people caring intensively are the ones demonstrably affected by variations in ASC expenditure. Figure 1 Subjective well-being and caring by government spending on ASC. The marginal effects of caring on GHQ-12 and MCS-12 are fixed-effects estimates. Error bars show 95% CI. Age, educational attainment, marital status, disability, income, household ownership, household size, employment status, the regional dependency ratio, population, GVA and time dummies are controlled. Full model results are given in online supplemental appendix I. ASC, adult social care; GHQ-12, 12-item version of the General Health Questionnaire; GVA, Gross Value Added; MCS-12, 12-item version of the Mental Component Summary. Figure 2 Subjective well-being and caring-differentiating areas by government ASC spending. The marginal effects of caring on GHQ-12 and MCS-12 are fixed-effects estimates. Error bars show 95% CI. Age, educational attainment, marital status, disability, income, household ownership, household size, employment status, the regional dependency ratio, population, GVA and time dummies are controlled. Full model results are given in online supplemental appendix II. ASC, adult social care; GHQ- --- Open access It also seems likely that subjective well-being among carers is an outcome primarily of the intensity, rather than the incidence of caring. Our study has some important limitations. Foremost is the absence of information on the support received by carers at the individual level. Such data are not currently available but are vital for investigation of how effective social care services are for carers. Likewise, we were unable to explore the relationship with receiving benefits or having family support and how these factors impacted well-being. Second, our analysis does not distinguish between ASC services provided to carers and those provided to adults with care and support needs. This is partly due to the very limited availability of LA-funded carer-specific services in England. Studies have shown positive effects on carers' well-being from time-limited policy interventions, so this should also be a focus of future studies. 27 Finally, the dataset we used covered only 122 of England's 152 LAs with adult social services responsibilities. Figure 3 GHQ-12 and caring-differentiating carers with caring intensity. The marginal effects of caring are fixed-effects estimators. Error bars show 95% CI. Age, educational attainment, marital status, disability, income, household ownership, household size, employment status, the regional dependency ratio, population, GVA and time dummies are controlled. Full model results are given in online supplemental appendix III. ASC, adult social care; GHQ-12, 12-item version of the General Health Questionnaire; GVA, Gross Value Added. Figure 4 MCS-12 and caring-differentiating carers with caring intensity. The marginal effects of caring are fixed-effects estimators. Error bars show 95% CI. Age, educational attainment, marital status, disability, income, household ownership, household size, employment status, the regional dependency ratio, population, GVA and time dummies are controlled. Full model results are given in online supplemental appendix IV. ASC, adult social care; GVA, Gross Value Added; MCS- --- Open access Future research should explore care intensity levels, carer-care recipient relationships, and the impact of the care-recipient's type of illness or disability on the relationship between ASC spending and well-being. Highintensity caring was defined as 35+ hours per week in this study, but future work could explore other cut-off points and the point at which there is a moderating effect of ASC spending. This extension would also supplement the literature which shows that low levels of unpaid caring are associated with positive well-being benefits and that well-being can be improved through increased closeness between carer and care recipient and/or a sense of purpose and/or of fulfilling one's duty. 4 5 28-33 Lastly, it would be valuable to explore the relationship between carers and care recipients and the conditions/circumstances of the care recipient, factors also known to impact well-being. 23 34-38 We subjected our analysis to a wide range of relevant robustness checks. To investigate the effectiveness of ASC expenditure on improving carers' well-being, we combined data available at individual and LA levels. Our robustness checks included using a different well-being measure; depression . The CASSRs cover localities of vastly different population sizes with very different population characteristics. As robustness checks, LA spending on ASC per client was used as a measurement for the care system. We estimated fixed-effects models to control for unobserved characteristics and eliminate any potential endogeneity caused by omitted and time-invariant variables. There could be omitted variables that are not time-invariant and that affect both government spending on ASC and individual subjective well-being, such as LA spending on other services, financial support received by carers, and the health status of care recipients . For this reason, fixed-effects Instrumental Variable estimators were applied . We also conducted further analyses that controlled for LA spending on transportation services, housing services, non-ASC service expenditure and non-ASC total expenditure ; these did not affect our findings. People may provide care to someone living in a different LA and the subjective well-being of those carers could be impacted by ASC services in both LAs. Additionally, women are found to be more likely to seek support for mental health. 39 For these reasons, our robustness checks restrict our sample to women who provide care to a co-resident person . All the results consistently show a moderating effect of government ASC spending on the negative impact of caring on carers' subjective well-being. --- CONCLUSION Unpaid carers play a crucial role in England's social care system. This is especially the case when LAs are struggling to support assessed needs, and in the context of rising 'unmet need'. Carers' ability to provide support to those they care for is necessarily affected by their own mental and psychological health. 40 Our analyses show that LA spending on ASC can moderate the negative impact of care on mental well-being. Reductions in LA ASC spending in the past decade reduced carers' subjective well-being. This will have led to additional pressures on the nationwide health and social care system. 41 In the future, demand for publiclyfunded care could rise as a consequence of increases in carers' poor subjective well-being. 42 The high and rising incidence of unpaid caring makes providing adequate support that is effective for unpaid carers crucial. 43 LAs need resources that enable them to provide support and services known to be effective in alleviating the pressures carers often face. As the UK government is forced to confront England's ongoing crisis of care, a fuller understanding of the role and experience of carers will be nothing less than vital. Funding reform is undoubtedly needed, but a redesign of services and support in order to take account of what families and communities contribute, and of their need for support, will be equally important. 44 Twitter Yanan Zhang @DrYananZhang --- Competing interests None declared. Patient consent for publication Not applicable. --- Ethics approval The BHPS, the UKHLS and official data for England on Personal Social Care Expenditure and Unit Costs and Adult Social Care Activity and Finance are publicly available, and both of the survey data were deidentified. Therefore, ethical approval and informed consent were not required in this study. Provenance and peer review Not commissioned; externally peer reviewed. --- Data availability statement Data are available in a public, open access repository. Supplemental material This content has been supplied by the author. It has not been vetted by BMJ Publishing Group Limited and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations , and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.
Objectives Reform of England's social care system is repeatedly discussed in the context of increasing demand, rising costs and austere policies that have decreased service provision. This study investigates the association between unpaid carers' subjective well-being and local government spending on adult social care (ASC). Setting and participants Our sample consists of 110 188 observations on 29 174 adults in England from the 2004
Background One important health policy goal is to reduce health differences between population groups in society. Health differences between population groups not only concern socioeconomic differences in health but are also defined according to gender, ethnicity, and sexual orientation. Studies in the USA [1,2], Australia [3], Europe [4] and Sweden [5] suggest poorer health in the bisexual and homosexual groups compared to heterosexuals. Discrimination, prejudice, threat of violence and violence may explain these health differences according to sexual orientation [6,7], which was also demonstrated in a previous study were we demonstrated significantly higher odds ratios of poor self rated health among bisexual, homosexual and "other" men as well as bisexual and "other" women compared to heterosexual men and women, respectively. These differences disappeared after the introduction of generalized trust in other people, experience of having been offended during the past three months, experience of threat of violence during the past twelve months and experience of violence during the past twelve months in multiple logistic regression models [7]. Differences in health related behaviours and particularly tobacco smoking prevalence may also explain health differences between population segments with different sexual orientation [8]. Most earlier studies on tobacco smoking among sexual minorities have only compared sexual minority groups with each other [9], collapsed the bisexual and homosexual groups when comparing with heterosexuals [10], or exclusively studied women [11,12]. Only one study including adults compared the homosexual and bisexual groups with heterosexuals, and found higher smoking rates for homosexual men and women and bisexual women [13]. In a UK study of adolescents aged 18-19 it was found that lesbian or gay participants were twice as likely to have a history of cigarette smoking, and bisexuals had nearly double likelilood of ever having smoked compared to heterosexual participants. Adjustment for ethnic minority status and parental socioeconomic status did not substantially alter the results. Similar results were found when combining the minority groups and comparing them with heterosexuals [14]. Despite decades of decreasing prevalence of tobacco smoking in Sweden, tobacco smoking with its relatively increasing socioeconomic gradient is still an important contributor to socioeconomic differences in health among both men and women [5]. This is due to the fact that tobacco smoking behaviours in general, as well as decisions to take up smoking or quit smoking in particular, are complex phenomena determined by psychological, economic, social and psychosocial factors [15,16], which e.g. include factors such as emotional support and instrumental support and social capital [17]. Daily smoking is thus associated not only with age, sex, country of birth [18] and socioeconomic status but also with emotional support and instrumental support [17]. Previous studies have shown sex differences in the association between sexual minority status and daily smoking , and sex differences in daily smoking exist in the general population in Sweden as well as in most other countries [19], which is the rationale for stratifying by sex in this study. In the past fifteen to twenty years social capital has been suggested as an important health determinant, although there is still an ongoing debate concerning both the definition and the contents of the concept. Some authors define social capital as social structures, social networks, social relationships and/or institutionalized relationships [20,21]. These authors also sometimes put emphasis on the possibility for individuals to achieve their personal goals in terms of power and resources within networks by excluding trust and reciprocity from the social capital concept [20]. Other authors define social capital as social structures/relationships/networks and trust. This second group of authors also tend to put more emphasis on lowering the costs of social interaction by including trust as well as social networks in the concept [22,23]. By including both generalized trust in other people and social participation/social network in this study we theoretically adhere to the second group of authors such as Coleman and Putnam, and emphasize the lowering of social interaction costs for sexual minority groups. We thus regard social capital as mediator between sexual orientation and daily tobacco smoking. Social capital has been suggested to affect health through psychological and psychosocial pathways, through norms and attitudes connected with health related behaviours, through access to health care and amenities, and through crime [24]. Both trust and social participation have been shown to be associated with tobacco smoking [25][26][27], and plausible pathways connecting social capital and smoking in a causal relationship include at least the two first of the four pathways listed above. Our previous study based on the public health survey in Skåne, southern Sweden in 2008 also showed higher odds ratios of low trust in the bisexual and "other" groups compared to heterosexuals among both men and women, a pattern which may be caused by discrimination, prejudice and social exclusion [7], but this previous study did not include social participation, the other major component of social capital. Our hypotheses are that tobacco smoking is significantly more prevalent in the sexual minority groups than among heterosexuals among both men and women, and that low social participation is significantly more prevalent in the bisexual and "other" sexual minority groups than among heterosexuals among both men and women, given the fact that we have shown that low trust is more common in these groups. The aim of this study is thus to investigate and replicate the previously found association between sexual orientation and daily tobacco smoking, and include emotional support, instrumental support, generalized trust in other people and social participation in the analyses in order to explore possible explanatory variables behind these already known associations. An additional aim is to investigate the association between sexual orientation and social participation. --- Methods --- Study population The public health survey in 2008 regarding public health in Skåne, southern Sweden, is a cross sectional study. It is based on a random sample of people in Skåne drawn from the public population registers. In August to September 2008, a total of 28,198 persons answered the postal questionnaire, which represents roughly a 55% response rate. Two reminder letters were also sent to initial non-respondents. In this study, the number of participants has been restricted to participants with values on all the variables included in the multiple logistic regression analyses , which means that the number analysed is a total 24,348 of which 11,084 are men and 13,264 women. Ethical approval was granted by the Ethical Committee, Lund University, Sweden. --- Definitions --- Dependent variable Daily tobacco smoking was assessed by the question "Do you smoke?" which included three alternative answers "Yes, daily", "Yes, but not daily" and "No". In the analyses this variable was dichotomized by collapsing the two latter alternatives. --- Independent variables Sexual orientation was retrieved by the item "Do you regard yourself today as 1) heterosexual, 2) bisexual, 3) homosexual, 4) other?" Age was categorized into the age strata 18-24, 25-34, 35-44, 45-54, 55-64 and 65-80 years. Stratification by sex was conducted in the analyses. --- Born in Sweden/born in other country than Sweden Participants born outside Sweden were aggregated into one group which was compared to participants born in Sweden. Socioeconomic status included the categories employed on the labour market higher nonmanual employees, medium level non-manual employees, low level non-manual employees, skilled manual workers, unskilled manual workers and self-employed and farmers. The groups outside the workforce consists of early retired , unemployed, students, old age pensioners above age 65, unclassified and long term sick leave. Emotional support was measured with the item "Do you feel that you have someone or some persons who can give you proper personal support to cope with the stress and problems of life?" which had four alternatives answers: "Yes, I am absolutely certain to get such support", "Yes, possibly", ""Not certain", and "No". The three latter were collapsed as low emotional support. Instrumental support was retrieved with the question "Can you get help by some or several persons in case of illness or practical problems ?" which contained the same alternatives as the emotional support item, and was dichotomized accordingly. Generalized trust in other people assesses the individual's level of generalized trust in other people. It was appraised by the item "Generally, you can trust other people" which entails the four answer alternative: "Do not agree at all", "Do not agree", "Agree", and "Completely agree". These were dichotomized, the two first alternatives denoting low trust and the two latter denoting high. Social participation assesses whether the respondent has taken part in the activities of formal and informal groups in society . It is measured as an index of 13 items and dichotomized with three or less alternatives depicting low social participation, and four or more alternatives high. --- Analysis Correlation coefficients between emotional support, instrumental support, generalized trust in other people and social participation were calculated in order to discern psychometric independence. Prevalences of daily smoking, age, birth country, socioeconomic status, emotional support, instrumental support, trust, social participation, and sexual orientation stratified by sex were assessed . Prevalences and odds ratios with 95% confidence intervals of daily smoking were calculated according to sexual orientation, age, birth country, socioeconomic status, emotional support, instrumental support, trust and social participation . Prevalences , crude and age-adjusted odds ratios and 95% confidence intervals of social participation were calculated according to sexual orientation . Age-adjusted and multiple adjusted odds ratios and 95% confidence intervals of daily tobacco smoking were calculated regarding sexual orientation. . The attenuation of the logit for the association between the sexual orientation and daily smoking after the inclusion in the logistic regression model already containing age, country of birth and socioeconomic status of the social capital variables generalized trust in other people, social participation and their combination was calculated . All tables were stratified by sex. The odds ratios in Tables 2, 3, 4 were calculated in logistic regression models. The statistical analyses were performed using the SPSS software package version 22.0 [28]. --- Results All correlations between the social support and social capital variables were low, with the exception of the correlation coefficient between emotional support and instrumental support . The correlation coefficient between emotional support and trust was 0.128, between emotional support and social participation 0.154, between instrumental support and trust 0.143, between instrumental support and social participation 0.179 and between trust and social participation 0.137. Table 1 shows that 11.9% of the men and 14.8% of the women were daily tobacco smokers. The distribution for age, country of birth, socioeconomic status, emotional support, instrumental support, trust, social participation and sexual orientation are also displayed . Table 2 demonstrates that the odds ratios and prevalence of daily tobacco smoking in bivariate analyses were significantly higher among middle-aged respondents, respondents with lower socioeconomic status, low emotional support, low instrumental support, low trust, low social participation and among persons of bisexual and other orientation among both men and women. The group men born abroad had a higher odds ratio of daily smoking than men born in Sweden, and homosexual men also had higher odds ratios of daily smoking compared to heterosexual men. The crude and age-adjusted odds ratios in Table 3 display that only the "other" sexual orientation group had a significantly higher prevalence of low social participation compared to the heterosexual reference group. In the age-adjusted models, the odds ratio of low social participation in the "other" sexual orientation group was 2.43 among men and 3.21 among women compared to the heterosexual reference group. The higher odds ratios of daily smoking among bisexual and homosexual men compared to heterosexual men remained throughout the multiple logistic regression analyses. In the final analysis the odds ratios of daily smoking were 1.88 among bisexual and 2.11 among homosexual men. In contrast, the odds ratio of daily smoking became not significant already in the second model for the "other" sexual orientation category among men. Among women, the odds ratios of daily smoking for the bisexual group were also higher and almost unaltered throughout the analyses, odds ratio 1.68 in the final model. In contrast, no statistically significant differences between homosexual and heterosexual women were observed throughout the multiple analyses, odds ratio 0.76 in the final model. The odds ratios of daily smoking for the "other" sexual orientation category among women were significant until social participation was added in the final model, an addition which reduced the odds ratio of daily smoking in this group from 1.59 to 1.44 . When social participation, trust and their combination were added to the logistic regression model assessing the association between sexual orientation and daily smoking including age, country of birth and socioeconomic status , only the attenuation of the logit for the "other" sexual orientation category was substantial for both men and women, 20.8% for trust, 40.4% for social participation and 54.2% for their combination among men and 10.6% for trust, 26.5% for social participation and 31.5% for their combination among women. A substantial attenuation of the logit was also observed for homosexual women when social participation and the combination of trust and social participation were added to the logistic regression model including age, country of birth and socioeconomic status. --- Discussion Major social capital components such as trust and social participation do not reduce the significantly higher odds ratios of daily smoking in the sexual minority groups, with the exception of the inclusion of social participation in the final model for the "other" group among women. Also, the addition of trust, social participation and their combination to the logistic regression model already including age, country of birth and socioeconomic status substantially reduced the logit for the association between sexual orientation and daily smoking in the "other" sexual orientation group. A substantial attenuation of the logit was also observed for homosexual women when social participation and the combination of social participation and trust were added to the logistic regression model already including age, country of birth and socioeconomic status. No substantial attenuation of the logit was observed for homosexual and bisexual men and bisexual women. One reason is that there seem to be no significant differences in social participation according to sexual orientation for bisexual and homosexual men and women, which is the second finding of our study. Bisexual men and women have significantly higher odds ratios of daily smoking throughout the analyses compared to heterosexual men and women, respectively, and the odds ratios remain almost unaltered even after the inclusion of the two social capital variables. The two social capital components trust and social participation can thus not account for the high smoking prevalence in this sexual minority group. In sharp contrast, there are distinct differences between the comparisons of the odds ratios of daily smoking between homosexual and heterosexual men as opposed to the corresponding comparison between homosexual and heterosexual women. Significantly higher odds ratios of daily smoking remain among homosexual men throughout the analyses, while no significant odds ratios among homosexual women compared to heterosexual women are observed. Only the odds ratios of daily smoking for the "other" sexual orientation group become not statistically significant in the analyses, for men already after inclusion of birth country and for women after inclusion of social participation. . Finally, only the "other" sexual orientation group has higher odds ratios of low social participation among both men and women. The higher odds ratios of daily smoking among bisexual men and women partly correspond with the finding that bisexual women but not men had statistically increased risk of smoking compared to female and male heterosexuals, respectively, in a study from the UK. The finding of that study also conforms with our finding that homosexual men had increased odds of daily smoking compared to heterosexual men, although homosexual women did not have increased odds of daily smoking in our study in opposition to the finding of the UK study that homosexual women had increased risk of being daily smokers [13]. On the other hand, one study which exclusively concerns women suggests that homosexual women have a lower risk of daily smoking than heterosexual women [12]. Given the small proportion of sexual minorities in most studies, one interpretation is that partly different findings may be explained by methodological concerns such as e.g. selection bias. However, a second more plausible interpretation is that sexual minorities live in different social settings which may explain the observed differences. Such patterns may most probably include various aspects of discrimination, i.e. "the dislike of the unlike" [29]. This second interpretation seems to be the most likely, given the fact that our results correspond well with a Swedish government investigation published in 2005 which showed that homosexual and bisexual men were overrepresented as daily smokers compared to heterosexual men, while the differences in daily smoking between homosexual and bisexual women compared to heterosexual women were smaller [30]. In addition, the finding that the "other" group has significantly lower social participation may be regarded as an aspect of what has sometimes been called the exclusive "dark side of social capital" [31]. Since most daily smokers are recruited during adolescence and in early adulthood [32], it seems that one preventive strategy would be to stop recruitment of daily smokers in these minority groups during adolescence and early adulthood. By including both generalized trust in other people and social participation in this study we theoretically and conceptually adhere to the group of authors such as Coleman and Putnam, and thus emphasize the lowering of social interaction costs for sexual minority groups rather than the individual's struggle for resources within networks. On the other hand, the authors who only acknowledge social networks and not trust as the core component of social capital have had problems operationalizing the struggle for power and resources within the social networks [33]. Our social participation variable is similar to those network variables used by authors within the literature that defines social capital exclusively as social networks. It should be noted that our trust variable conceptually falls within the social capital literature tradition including Coleman and Putnam [22,23] as an aspect of social capital and not primarily an individual trait. Vast differences in trust prevalence between different countries indicate the social and societal as opposed to the individual aspect of generalized trust in other people [34]. Men born abroad have a significantly higher odds ratio of daily smoking compared to men born in Sweden, while the odds ratio of daily smoking among women born abroad is not significantly higher than among women born in Sweden. These patterns have been previously explored, and the results indicate that men born in most other countries than Sweden have higher odds ratios of daily smoking, while women born abroad show differing patterns with high odds ratios of daily smoking for women born in e.g. Denmark but low odds ratios for women born in e.g. Arabic speaking countries compared to women born in Sweden [18]. --- Strengths and limitations The 55% participation rate may theoretically be a source of selection bias, but a previous study on an earlier similar questionnaire with a similar response rate in Skåne showed a good correspondence with population registers concerning composition of the population according to age, gender, education and socioeconomic status, with the exception of under-representation observed among people born in other countries than Sweden [35]. Calculations on the 2008 public health survey in Skåne also display under-representation in the age group 18-34 years , and a corresponding over-representation in the 65-80 year age group . Some extent of underrepresentation of men was also observed. People with low education were also under-represented to some extent . However, the more important under-representation among respondents was observed among people born outside Europe [36]. The risk of selection bias may still be regarded as acceptably low. The low proportion of the population which belongs to sexual minorities corresponds well with other national level Swedish data [37] and data from the USA [10]. Still, there may be limitations with items focusing on identity at a given point in time which may plausibly result in under-representation to some extent due to misclassification as a result of some remaining social desirability bias. Also, the fact that aspects of sexual orientation other than identity, e.g. attraction and behavior, were not included in the survey may also be regarded as a limitation [14]. The potential confounders age, birth country, socioeconomic status and social support as well as trust and social participation were adjusted for, and stratification according to sex was conducted. The tobacco smoking items are valid and reliable for the assessment of tobacco smoking in population studies [38,39]. The item concerning sexual orientation has been used previously in a study conducted by a Swedish state authority [37]. The low correlation coefficients between the social support and social capital variables indicate that the variables measure separate dimensions of social support and social capital. The only strong r = 0.568 correlation between emotional and instrumental support indicates correlation that is high but not high enough to indicate the same dimension of social support. The cross-sectional study design makes all conclusions involving causation formally impossible. --- Conclusions Higher and almost unaltered odds ratios of daily smoking compared to heterosexuals are observed for bisexual men and women, as well as for homosexual men throughout the multiple analyses. In contrast, the odds ratios of daily smoking among homosexual women do not significantly differ. Only for the "other" sexual orientation group the odds ratios of daily smoking are reduced to not significant levels compared to heterosexuals among both men and women. Only the "other" sexual orientation group has higher odds ratios of low participation among both men and women compared to heterosexuals. --- Competing interests The authors declare that they have no competing interests. ---
Background: Studies have suggested poorer health in the homosexual and bisexual groups compared to heterosexuals. Tobacco smoking, which is a health-related behavior associated with psychosocial stress, may be one explanation behind such health differences. Social capital, i.e. the generalized trust in other people and social participation/social networks which decreases the costs of social interaction, has been suggested to affect health through psychosocial pathways and through norms connected with health related behaviours, The aim of this study is to investigate the association between sexual orientation and daily tobacco smoking, taking social capital into account and analyzing the attenuation of the logit after the introduction of social participation, trust and their combination in the models. Methods: In 2008 a cross-sectional public health survey was conducted in southern Sweden with a postal questionnaire with 28,198 participants aged 18-80 (55% participation rate). This study was restricted to 24,348 participants without internally missing values on all included variables. Associations between sexual orientation and tobacco smoking were analyzed with logistic regression analysis. Results: Overall, 11.9% of the men and 14.8% of the women were daily tobacco smokers. Higher and almost unaltered odds ratios of daily smoking compared to heterosexuals were observed for bisexual men and women, and for homosexual men throughout the analyses. The odds ratios of daily smoking among homosexual women were not significant. Only for the "other" sexual orientation group the odds ratios of daily smoking were reduced to not significant levels among both men and women, with a corresponding 54% attenuation of the logit in the "other" group among men and 31.5% among women after the inclusion of social participation and trust. In addition, only the "other" sexual orientation group had higher odds ratios of low participation than heterosexuals. Conclusions: Bisexual men and women and homosexual men, but not homosexual women, are daily smokers to a higher extent than heterosexuals. Only for the "other" sexual orientation group the odds ratios of daily smoking were reduced to not significant levels after adjustments for covariates including trust and social participation.
Introduction And Background Among the world's top causes of death and many significant medical disorders are cardiovascular diseases [1]. Risk factors causing CVD include age, gender, obesity, genetics, smoking history, hypertension, diabetes, socio-economic status, lifestyle, etc [2]. Timely identification of risks in individuals is necessary as CVD advances over time, and waiting until the symptoms occur increases morbidity and mortality [3]. People with poor social health were 30% more likely to develop coronary heart disease and stroke episodes, according to a systematic review published in 2016 constituting 23 studies [4]. The notion of "social health" refers to an individual's potential for fulfilling and significant acquaintances, their ability to adapt to social adjustment, and their interactions with and perception of support from other people, organizations, and services. The terms social isolation, social support, and loneliness are frequently used to describe social health, more briefly described in Figure 1. Social support is a subjective indicator of an individual's perception of how much they receive from others [4]. Several studies have shown a relation between social support and change in lifestyle, which can decrease the risk of CVD. While patients with low social support tend to show poor prognosis in cardiac diseases [5]. Some studies also showed the risk of mortality and readmission in patients who are already discharged after hospitalization for heart failure [6,7]. --- FIGURE 1: Components of social health Many risk prediction models and algorithms are being developed to assess the risks of developing CVD, such as systematic coronary risk evaluation [8], cardiovascular risk score [9][10][11], Framingham [12], and Reynolds risk score [13]. However, none of them focuses solely on the social determinants. We have several data and literature that show us the association between CVD and other risk factors, such as diabetes, hypertension, age, family history, depression, etc. However, at present, we have very limited data and literature that focus on social factors. As we age, our social health becomes poor, which is influenced by several factors. As we get older, we tend to have less social interaction, network, and activities. We rely more on friends and families for emotional support. The loss of a loved one can lead to stress, isolation, and loneliness. By considering these determinants in conjunction with clinical data, healthcare professionals can have a more holistic approach to determining the risks. Understanding the impact of social support on cardiovascular disease risk prediction models is essential in order to develop more comprehensive and effective strategies for reducing inequalities in cardiovascular health outcomes. --- Review Methods We followed the recently published guide from the Cochrane Prognosis Method and used the PRISMA [14] checklist for the study of prediction models. --- Search Strategy A systematic review of articles was conducted using the reports of the association between social support and cardiovascular risks from 2003 to 2023. Search engines such as PubMed, Google Scholar, and Medline were used. We included the following terms in our searches on August 01, 2023, using the boolean algorithm - OR AND OR OR OR OR , as described in Table 1. --- Database Search Strategy --- TABLE 2: Inclusion and exclusion criteria adopted during the process of literature search --- Screening and Quality Appraisal The articles were reviewed for duplicates using Endnote [15] and thoroughly screened by two authors AN and LG to be included in the final analysis. We employed a range of quality assessment instruments to guarantee the reliability of the five chosen papers. In the case of systematic reviews and meta-analyses, we adhered to the PRISMA checklist. For randomized clinical trials, we utilized the Cochrane bias assessment tool. The quality appraisal of qualitative studies was conducted using critical appraisal skills, as shown in Table 3. --- Quality Appraisal Tools Used Type of Studies --- PRISMA checklist Systematic reviews and meta-analysis Cochrane bias tool assessment RCT --- Results A total of 18,789 articles were identified, including 389 articles from PubMed and 18,400 articles from Google Scholar. However, only five studies met the inclusion criteria, as discussed in Figure 2. Out of these, three studies focused on the impact of support on CVD, and two studies focused on cardiovascular risk prediction models. In Table 4, we discussed that, in populations with low social support, the risk of developing CVD is high. --- Study Participants Social Support Status Key Findings Freak Freak-Poli et al. [16] showed that, in a cohort of 11,486 participants , 12.32% with high social support and 24.56% with low social support developed the events of CVD. Shen et al. [17] suggested that providing a better social support system decreased depression in participants, which in turn decreased the risk of readmission. Thurston et al. [18] also showed that, in a cohort of 3,003 participants with low social support, 237 participants developed non-fatal vs. 120 participants who developed fatal CVD in the future. All three studies showed that, in a population with low social support, the chances of developing CVD are higher through multiple pathways, including its impact on stress, behaviors, medication adherence, and mental health. Table 5 shows the results of integrating social determinants of health with cardiovascular risk prediction models. Both studies showed improvement in the accuracy of the cardiovascular risk prediction model with the integration of SDOH. --- Study --- Discussion This systematic review sheds light on the impact of social support on cardiovascular risk prediction models. At first, we compared different risk prediction models and their components in Table 6 and found out that the social determinants need to be integrated while using these risk prediction models. --- Risk Prediction Models Components Features European Our first finding was to establish a link between social support and CVD. In one of the studies, it was noted that 12.32% of the population with high social support and 24.56% of the population with low social support developed the events of CVD in their lifetime. Meanwhile, the second study showed that, in a cohort of 3,003 participants with low social support, 357 participants developed CVD. Our second and most significant finding was that people with low social support and loneliness are more prone to develop depression, and depression can act as an indirect cause of CVD. We can decrease the incidence of re-hospitalization in patients with post-infarction by providing them with more support. Social support systems can contribute to reducing stress in the population. Stress can directly lead to hypertension. Social support can also influence lifestyle, such as smoking, diet, etc. Hence, positive social support has a positive effect on risk management and directly impacts the development of CVD. The impact of social support on cardiovascular risk prediction models stands as a topic of paramount significance. Extensive research underscores the substantial influence of social support on cardiovascular health and risk factors. Numerous studies have ascertained that individuals possessing robust social support networks tend to experience more favorable cardiovascular outcomes and exhibit a reduced likelihood of developing CVD. To elaborate, social support has been associated with shortened hospital stays, enhanced treatment adaptation, and a diminished risk of mortality among patients dealing with chronic conditions [6,7]. Moreover, it is worth noting that inadequate social and economic resources, insufficient social support, and social isolation have all emerged as recognized risk factors contributing to the development of coronary heart disease. Social support manifests in various forms, encompassing instrumental, emotional, and informational support. Research findings consistently underscore the pivotal role that social support plays in mitigating the risk of CVD and enhancing overall cardiovascular well-being. Our third finding focused on integrating SDOH with cardiovascular risk prediction models, and we found out that incorporating SDOH with these risk prediction models has increased their accuracy. SDOH are the conditions and components in the settings where individuals are born, live, learn, work, play, and age that have an impact on a variety of hazards and repercussions for health, functioning, and quality of life. To put it differently, social and economic issues have an effect on people's health and well-being both individually and collectively. SDOH includes various elements such as economic stability, social and economic factors, education, surroundings, and access to healthcare. Economic stability: This entails aspects such as earnings, employment, and access to necessities like food and housing. Health disparities are more likely to affect people with lower incomes or undetermined employment. Social and economic factors: Income inequality, social cohesion, and discrimination are a few examples of social and economic issues that might have an impact on health. Education: The availability of and achievement in schooling can influence health outcomes. Better health and well-being are frequently associated with higher levels of education. Surrounding: Health can be impacted by the physical surroundings in which individuals reside, including elements such as accessibility to green areas, walkability, and exposure to environmental contaminants. Access to healthcare: While healthcare itself is an important factor, access to healthcare services, the quality of care received, and health insurance coverage all play a role in determining health outcomes. Therefore, healthcare professionals should consider integrating measures of social support into cardiovascular risk assessment tools to better understand and predict an individual's risk of developing CVD. However, the question arises of how can we move towards this holistic approach of integrating SDOH with cardiovascular risk prediction models. Here are some strategies in Table 7. --- SDOH Incorporation Strategies --- Components --- SDOH data Collect SDOH data of patients either by survey or pre-existing data. These data should include information on income, education, employment status, neighborhood characteristics, access to healthcare, social support networks, and more. --- Incorporate variables Include socioeconomic status as covariates in the model --- Limitations Our systematic review has certain constraints. We exclusively considered articles published in the English language within the two past decades. Our selection was limited to papers accessible for free on PubMed and Google Scholar. Additionally, we focused solely on studies involving individuals aged 19 years and older, and our search was restricted to papers addressing cardiovascular risk prediction models and social health. Due to less research in this particular area, there were limitations in articles retrieved for final analysis. To obtain more precise findings, further research is required. drafting process. Specifically, they meticulously gathered data, diligently reviewed for potential errors, and took an active role in formulating both the introduction and method sections of the manuscript. LG actively engaged in data selection, diligently identifying and rectifying any instances of duplicated data or potential errors. Moreover, they made substantive contributions to drafting the method sections and tables, showcasing their comprehensive involvement in these aspects of the research process. JT took an active role in verifying the process of data collection and meticulously reviewing references for accuracy. Furthermore, they played a significant part in composing both the results section and the discussion, demonstrating their comprehensive contribution to these critical components.RR played a vital role in drafting the abstract, refining the discussion section, meticulously collecting data, and conducting rigorous error checks.BP contributed to data collection and abstract editing, ensuring all guidelines were met, and drafting limitation sections. Furthermore, MS, AN, LG, JT, and RR reviewed the entire article, ensuring the rectification of any grammatical and writing errors. The completion of this systematic review paper was made possible through the collaborative efforts of a dedicated team of authors. Lastly, we are grateful to our families and loved ones for their unwavering encouragement and understanding as we dedicated countless hours to this endeavor. --- Conclusions The implications of increased social support are profound. Increased social support has been linked to lower levels of loneliness, perceived stress, and anxiety, as well as better mental and physical health. Additionally, increased social support has been found to reduce the odds of depressive and psychotic-like symptoms, which is especially important for individuals with severe and persistent mental illness who may be at an increased risk of isolation. Overall, evidence suggests that social support can have a protective effect on cardiovascular health and risk, as well as on overall mental and physical well-being. In light of this research and the evidence presented, it is clear that social support plays a significant role in cardiovascular risk prediction models. --- Additional Information Disclosures --- Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work.
Cardiovascular diseases (CVD) stand as the primary causes of both mortality and morbidity on a global scale. Social factors such as low social support can increase the risk of developing heart diseases and have shown poor prognosis in cardiac patients. Resources such as PubMed and Google Scholar were searched using a boolean algorithm for articles published between 2003 and 2023. Eligible articles showed an association between social support and cardiovascular risks. A systematic review was conducted using the guidance published in the Cochrane Prognosis Method Group and the PRISMA checklist, for reviews of selected articles. A total of five studies were included in our final analysis. Overall, we found that participants with low social support developed cardiovascular events, and providing a good support system can decrease the risk of readmission in patients with a history of CVD. We also found that integrating social determinants in the cardiovascular risk prediction model showed improvement in accessing the risk. Population with good social support showed low mortality and decreased rate of readmission. There are various prediction models, but the social determinants are not primarily included while calculating the algorithms. Although it has been proven in multiple studies that including the social determinants of health (SDOH) improves the accuracy of cardiovascular risk prediction models. Hence, the inclusion of SDOH should be highly encouraged.
INTRODUCITON Childbearing is an immense pleasure for every woman. Globally there are about 48.5 million infertile couples and 14.4 million of them live in South Asia. 1 In Nepal, although a child holds the greatest importance to the couples and families, most of the women are facing the silent tragedy of infertility. 2 The consequences of infertility in developing countries like Nepal range from poor marital adjustment, social isolation, psychological effects, and violence. 3 Violence, stress, anxiety, and depression occurs in a vicious cycle in infertile women that lowers the quality of life and success of treatment. [4][5][6] Many of them end up committing suicide and self-injurious behavior. 7 As JNMA I VOL 58 I ISSUE 226 I JUNE 2020 violence is a major health and human rights concern and scarcity of studies in related areas has motivated for the conduction of the study. The present study aims to find out the prevalence of domestic violence among infertile women in a tertiary hospital. --- METHODS A descriptive cross-sectional study was conducted in a tertiary hospital over a period of one month from July to August 2018. Ethical clearance was taken from the Institutional Review Board of National Academy of Medical Sciences and Institutional Review committee of PMWH. Data were collected from 112 women attending the subfertility clinic of PMWH after obtaining written consent. The sample size of the study was estimated for a finite population using a confidence interval of 95%. The sample size was calculated using a standard formula. Non-response rate= 5% --- Sample size = Z 2 x /e 2 = Therefore the final sample size for the study was 112. Convenient sampling technique was used in this study. Every day all the women visiting the subfertility clinic for consultation regarding infertility management were identified from the distinct subfertility OPD card as the women with other gynecological problems also visit the subfertility clinic of PMWH. Those who were willing to participate were included in the study and were invited to a private room after their consultation with the doctor. Written informed consent was obtained. Women attending Extended Hospital Service were not included in the study. Face to face interview was conducted with women in the absence of their spouse using a standard tool used in Nepal demographic and health survey ,2016 to assess the prevalence of domestic violence. 9 Threaten of divorce is added to the emotional violence as literature has shown a high prevalence of it. 10,11 Data were coded for entry and analysis into Statistical Package for Social Sciences version 16. Descriptive statistics were used to describe the quantitative study variables. --- RESULTS The results showed that among 112 women, 62 experienced some types of domestic violence in the last 12 months. The prevalence of domestic violence in women with primary infertility was 40 whereas those in secondary infertility were 22 . The Socio-demographic characteristic of women is shown. The mean age of the women was 27.44 years with SD of 5.214 years. Majority 64 of the women had attended SEE and higher education levels. Similarly, most 49 of the women were Janjati group and were housewives 71 . The majority of the women 67 belonged to a single family . The fertility specific characteristics of women are shown. The mean age at marriage was 22±4 years. The duration of marriage was five years and less in most 73 of the women. In regards to the duration of infertility, the majority 57 of the woman were of categories more than two years . --- DISCUSSION In our study, 62 of women experienced some types of domestic violence in the last 12 months. The findings are also supported by another study conducted in India. 12 However, the prevalence was found much higher in the Iranian setting. 13,14 These differences may be due to cultural diversities in the study population as well as a different data collection tool. In our study, violence was found higher 22 in women with secondary infertility in comparison to women with primary infertility 40 . These figures are comparable to the figures obtained in Pakistan where violence on the base of gender has a similar prevalence revealing that women with no live children were more likely to be the victims of violence compared to those who had a live child. 10 In contrary to this study, a study done in Nigeria revealed that the women who have two or more children were more likely to experience spousal violence compared with childless women. 15 In the present study, emotional violence was most 57 common form of violence. In a study verbal abuse was the most common type of violence followed by intimidation for divorce. The percentage of women experiencing physical violence was 19 in our study. This is similar to figures recorded in studies performed in India. 12 Unlike our findings, the study conducted in another part of India showed a higher prevalence of physical violence. 8 The current study further illustrated the prevalence of sexual violence as 18 in the form of forceful JNMA I VOL 58 I ISSUE 226 I JUNE 2020 sexual intercourse or sexual positions, the highest proportion being the use of physical force to have sexual intercourse. Sexual violence was much higher in a study in Iranian and Nigerian setting. 16,17 Women hesitation to open up about sexual activities may be the reason for this contradiction. In regards to perpetrators of domestic violence, the majority of them were family members 28 . In a qualitative study, most of the women expressed that they are tortured by their in-laws verbally. 11 In contrast to the study, a study done in Iran showed husband as perpetrators in all cases. 18 This study findings are not representative of the general population as the study was conducted in a selective tertiary hospital setting. The study does not address the situation among women with male factor infertility. Domestic violence especially the physical and sexual ones may not have been expressed due to cultural or social issues like shame and embarrassment. --- CONCLUSIONS The present study concluded that women experiencing infertility are subjected to various forms of domestic violence. Emotional violence was the most common type of violence whereas Physical and Sexual violence was nearly equally prevalent among infertile women. Violence as being an issue of human right concern and overall quality of life of women, it is necessary to screen for violence in infertile women to identify those affected and to give these women an opportunity to access appropriate health care and support services. --- Conflict of Interest: None.
Introduction: Millions of couples suffered from Infertility worldwide. Infertility can cause intense emotional pain in women resulting in stress, anxiety and depression. Domestic violence in infertile women can further results in poor health status and lowers the quality of life. The objective of this study is to find out the prevalence of domestic violence among infertile women attending subfertility clinic of tertiary hospital.This descriptive cross-sectional study was conducted among infertile women in a tertiary hospital from July to August 2018 after taking ethical approval. Convenient sampling was used. Face to face interview was conducted using a structured interview schedule. Data analysis was done in the Statistical Package for Social Sciences. Descriptive statistics (frequency, percentage) were used to analyze the data. Point estimate at 95% CI was calculated along with frequency and proportion for binary data. Results: Domestic violence was found among 62 (55.35%) women at 95% Confidence Interval (46.15-64.55). The emotional violence accounted for 57 (50.89%), physical violence for 19 (16.96%) and sexual violence for 18 (16.07%). The prevalence of domestic violence was more 22 (61.11%) in women with secondary infertility than in women with primary infertility 40 (52.63%). The main perpetrators of domestic violence were family members 28 (45.16%).The study concluded that women experiencing infertility are exposed to various forms of domestic violence, emotional one being most common. Routine screening for domestic violence in infertility clinics is necessary to give affected women an opportunity to access appropriate health care and support services.
Introduction Group interactions fundamentally differ from interactions between pairs of individuals. When individuals assemble in groups of size three or more, social pressure increases [2], social loafing may occur [16], and joint decisions can become polarized [5]. However, fundamental properties of group interactions in complex networks are not yet fully explored. As such, higher order models, which explicitly encode group interactions with data structures such as simplicial complexes and hypergraphs, have received attention in recent literature [3,4,23]. In this work, we consider the principle of homophily as it pertains to group interactions. Homophily, the well-known tendency for individuals to form social 3)), suggesting the presence of homophily . However, the edge structure of the network is such that 4 out of 6 closed triangles have nodes of the same type, which suggests that the homophily of filled triangles is as if they were randomly placed into the underlying edge structure. connections with those similar to themselves, is a core organizing principle of social networks [17,18]. This notion is nearly ubiquitous, appearing in contexts such as marriage, friendship, information transfer, physical contact, and online social networks [14,18,24]. In such networks, social ties are correlated with similarity in age, occupation, religion, and/or each individual's local network structure [6,18]. Although this empirical ubiquity of homophily makes it valuable in understanding social structure, previous studies have restricted to analysis of graphs, which only encode pairwise interactions between individuals. Our work builds on definitions of group homophily considered recently in the context of hypergraphs, a generalization of graphs that can encode interactions between arbitrarily large groups of individuals [25]. For a particular hypergraph with labeled nodes, prior work considers all hyperedges of fixed size g ≥ 3, and defines homophily relative to if nodes were labeled at random, which we refer to as a node baseline. However, this approach can potentially inherit the dyadic, graph-based notion of homophily rather than that of group interactions. In other words, much of the variation of group homophily scores with a node baseline can be explained by the standard dyadic notion . This observation goes beyond the provided example: in the 16 empirical datasets of this work, nearly 70% of the variation in group homophily using a node baseline can be explained by homophily scores defined only on edges. Hence, we introduce a new measure, k-simplicial homophily, which properly isolates homophily due to group dynamics. --- Contributions. In Section 3, we precisely define k-simplicial homophily as a formal way to account for underlying interactions in a network when establishing the presence of homophily for groups. Rather than model the social network with a hypergraph, we use a simplicial complex which requires additional structure in the network model. We establish theoretically that when k-simplicial homophily is applied to edges, we recover a standard definition of homophily on graphs, suggesting it is a natural generalization of homophily for groups. Furthermore, contrary to the existing notions of homophily, k-simplicial homophily successfully isolates properties of group dynamics. We provide theoretical evidence of this in Section 4, where we introduce the simplicial stochastic block model, a generative network model which allows for homophily in pairwise interactions to be decoupled from that of triadic interactions. We show prior measures can incorrectly conclude the presence of group homophily, whereas k-simplicial homophily identifies group homophily if and only if the formation of triadic interactions depends on node class labels. We then apply group homophily definitions to empirical data. 1 In 15 out of 16 empirical datasets, we find that homophily scores using k-simplicial homophily are lower than scores computed using a baseline that depends on the proportion of each class of nodes. Moreover, in 4 of these datasets, we find anti-homophily with respect to k-simplicial homophily, and note that the presence of anti-homophily is justified in each dataset. Importantly, we do not find a significant relationship between edge homophily scores and k-simplicial homophily scores on triangles, suggesting that k-simplicial homophily provides novel insights into group dynamics which are not explained by homophily in edges. In Section 5, we show the utility of the new information provided by ksimplicial homophily in the data-driven application of higher order link prediction. Originally proposed by Benson et al [4] as a benchmark problem for higher order models and algorithms, higher order link prediction involves using network information up to a certain time t to predict if new group interactions will occur after time t. We find that k-simplicial homophily indicates whether node labels are useful in the prediction task, whereas previous definitions of group homophily are uninformative in determining the utility of node labels. --- Related Work Group homophily has been considered for data-driven applications such as transductive learning [22] and clustering [15]. In such works, the authors use a homophily parameter as an input into a generative hypergraph model, and homophily is defined relative to a baseline distribution computed using frequencies of node class labels. Here, we instead propose homophily measures which describe existing datasets to aid analysis of group interactions in empirical settings. A particularly relevant work is Veldt et al [25], as it aims to broadly define homophily in the context of hypergraphs. Like previous work, the baseline considered by the authors uses randomization of node labels in order to determine if hyperedges in a network are more likely than random to be among nodes of the same type. The author's main focus in the work is understanding the complexity that arises in group homophily due to the fact that different numbers of each category of individuals can be present in a particular group. That is, for the setting considered by the authors where nodes are given one of two labels, a hyperedge of size k can have t members of one group, and k -t members of the other for any 0 ≤ t ≤ k. For a fixed k, the authors define a homophily score for each t, and prove impossibility results showing their homophily scores can not be strictly increasing in t and can not be greater than unity for all t ≥ k/2. In this work, we define similar metrics for homophily which are based on simplicial complexes as opposed to hypergraphs. We also consider a more general setting where three or more class labels are allowed, which helps to avoid impossibility results from prior work and allows for a broader selection of data. --- Preliminaries We discuss three data structures, each of which considers a set of nodes V , where |V | = n, and a labeling function C : V → {1, . . . , m}, which maps each node to one of m ≥ 2 classes. Graphs and Hypergraphs. Graphs and hypergraphs are common models of interactions in complex networks [3]. We consider undirected graphs which consist of a set of nodes V and a set of edges E, where each edge e ∈ E denotes a pairwise interaction between nodes. Hypergraphs, in contrast, have a set of hyperedges H ⊆ 2 V which are unrestricted in size. Hence, group interactions can be encoded as elements of H, with no additional structure required of H. Simplicial Complexes. Simplicial complexes provide a way to encode group interactions which requires more structure than hypergraphs. A simplicial complex is a set of simplices X ⊆ 2 V , where each element x ∈ X is referred to as a k-simplex if it contains k + 1 different elements of V . In Figure 1c, nodes would then correspond to 0-simplices, edges to 1-simplices, and filled triangles to 2-simplices. Simplicial complexes also have the following structural property: x ∈ X =⇒ σ ∈ X, ∀σ ⊆ x . That is, for every simplex x in X, all subsets of x must also be contained in the simplicial complex. In Figure 1c the network can be modeled as a simplicial complex because for each filled triangle, all edges associated with the triangle are in the network. This simple assumption leads to a rich mathematical theory from algebraic topology [12]. While we will not discuss algebraic topology at length , we do utilize the definition of a k-skeleton. Definition 1 . For a simplicial complex X, let X j denote the set of all j-simplices in X, i.e. those elements of X with exactly j + 1 elements. The k-skeleton of X, denoted X , is defined X = k j=0 X j . As we will see, the k-skeleton accounts for underlying interactions when defining group homophily, as it encodes all interactions of size at most k + 1. For example, in Figure 1c, we used the 1-skeleton, referred to as the underlying graph, to argue that homophily in triadic interactions can be inherited from homophily in closed triangles, which are defined by pairwise interactions. --- Defining Group Homophily Defining homophily for groups is far more complex than for edges, as there are significantly more options for node labels to be assigned in a group of size g ≥ 3 than there are for an edge which only contains two nodes. To reduce this complexity, we focus on two types of homophily in this work: one based on the proportion of homogeneous groups in a network, and another which takes into account the number of individuals in a group which share a particular class label. --- Homophily of Homogeneous Groups In what follows, we refer to a group as homogeneous if all nodes share the same class. We use g to refer to group size in a hypergraph, and k to refer to ksimplices in a simplicial complex, which have size g = k + 1. For an arbitrary hypergraph H, let H g represent the hyperedges of size g and H g h ⊆ H g represent the homogeneous hyperedges of size g. The affinity score is then defined a g = |H g h | / |H g | . The following random baseline formalizes notions of higher order homophily from previous literature [22,15,25], and can be applied to arbitrary hypergraphs: b g h = m c=1 n c g / n g , where n c represents the number of individuals in class c, so b g h represents probability that a group of size g in H with random node labels is homogeneous. Definition 2 . The hypergraph homophily score s g h is defined s g h = a g / b g h . The score s g h indicates the presence of homophily if s g h > 1, or antihomophily if s g h < 1. The score also coincides with a traditional metric of graph homophily when g = 2, which we refer to as the graph homophily score. The second random baseline applies only to simplicial complexes. Let X ,k represent the possible k-simplices that may occur in X. 2 The baseline is then b k x = a k+1 ,k ) . Intuitively, b k x is the probability that a randomly placed k-simplex into the -skeleton of X is homogeneous. The corresponding homophily score is: Definition 3 . The k-simplicial homophily score s k x is s k x = a k+1 / b k x . The primary difference between k-simplicial homophily and hypergraph homophily lies in the definition of the baseline score. In hypergraph homophily, the baseline depends only on the composition of nodes, whereas for k-simplicial homophily, the -skeleton accounts for the underlying interactions. Example. In Figure 1c, consider the case k = 2, such that we are focused on triangles. Then, X represents the underlying graph, and X ,k represents closed triangles in the underlying graph. Because 4 out of 6 closed triangles are homogeneous, b 2 x = 4/6, and similarly because 2 out of 3 filled triangles are homogeneous, a 3 = 2/3. Therefore, s 2 x = 1. Notably, simplicial homophily and hypergraph homophily coincide when edges are the focus, as both generalize the standard definition of homophily in edges. The proof of the claim follows directly from the equivalence of and when applied to edges. Proposition 1 shows that k-simplicial homophily is actually a natural extension of graph-based notions of homophily [7,20]. However, the two approaches to homophily differ when group size increases beyond 2, as edges in a simplicial complex can impose structure on triads. --- Homophily in Heterogeneous Groups While the scores of the previous section conveniently summarize homophily into a single value, they cannot handle heterogeneity in node labels for a group. To handle this distinction, we focus on type-t interactions as defined in [25]. For a class c and group size g, a type-t interaction is an interaction with exactly t members from class c. The type-t affinity score for class c is defined [25]: a g c = t × H t,g c / g i=1 i × H i,g h,c , 2 Formally, given X is the -skeleton of X, X ,k represents the maximal set of k-simplices which could be added to X while preserving that X ∪ X ,k is a simplicial complex. The hypergraph homophily score defined on triangles inherits the homophily due to edges, whereas the 2-simplicial homophily is near 1. Varying p 2 /q 2 with p 1 = 4q 1 . The k-simplicial homophily score is larger than 1 if and only if p 2 /q 2 > 1, and hence correctly captures homophilous group dynamics. In contrast, since p 1 > q 1 , hypergraph homophily scores are consistently inflated. where H i,g h,c is the set of type-i hyperedges for class c. The random baselines for the heterogeneous scores are then b g h = nc-1 t-1 × n-nc g-t n-1 g-t , and b k x = a k+1 c ,k ) , where the former can be shown to be the expectation of a g c when node labels are assigned randomly, and the latter generalizes the randomization scheme of Section 3.1. The heterogenous homophily scores can then be defined as follows. Definition 4 . For a hypergraph H, group size g, and class c, the heterogenous hypergraph homophily score is [25] s g h,c = a g c / b g h . For a simplicial complex X, the heterogeneous k-simplicial homophily score is s k x,c = a k+1 c / b k x . These definitions provide additional granularity when understanding homophily. However, we note that they do suffer from impossibility results which limit how scores can behave with respect to the group type parameter t [25]. --- Homophily in Network Data --- Synthetic Networks In order to show the difference in homophily definitions, we build upon recent models of random simplicial complexes to introduce the simplicial stochastic block model, a straightforward generalization of the ∆-ensemble of Kahle [13]. The generative model has the following inputs: • n 1 , . . . , n m , the number of nodes in each class for the model. • p 1 and q 1 , the probability of an edge forming between nodes in the same or different communities, respectively. • p 2 , the probability that a closed triangle consisting of nodes in the same community becomes filled as a 2-simplex. • q 2 , the probability that a closed triangle consisting of nodes in different communities becomes filled. Each random simplicial complex is then built using a generative process. First, edges form between communities with probabilities p 1 and q 1 as noted above, creating a graph G. Then, for each closed triangle in G, the triangle becomes filled with probability p 2 if all nodes in the closed triangle are of the same community, or with probability q 2 otherwise. This model can control the presence of homogeneous edges and homogeneous triangles in the network while maintaining the structural requirement of a simplicial complex. p 1 and q 1 determine whether there is homophily in pairwise interactions, and p 2 and q 2 dictate how much homophily occurs in the filled triangles beyond that of the underlying pairwise interactions. We provide two sets of experimental results on the simplicial stochastic block model, each using two classes of nodes and community sizes of 1,000 for each class. In the left of Figure 2, we set p 2 = q 2 which indicates that by construction group formation is not influenced by class labels. k-simplicial homophily detects Figure 3: Scatterplot of global homophily scores with a hypergraph baseline compared to a simplicial complex baseline. In 15 out of 16 datasets, the 2simplicial homophily score is lower than the hypergraph homophily score, as the hypergraph homophily score inherits properties from edges. that p 2 = q 2 and reports a value close to 1, whereas the value reported by hypergraph homophily depends on the parameters p 1 and q 1 . The hypergraph homophily score in this case is above 1 if and only if p 1 /q 1 > 1, indicating that hypergraph homophily defined on triangles inherits the properties of edge homophily prescribed in the model. In contrast, the right figure illustrates that k-simplicial homophily can effectively identify whether group dynamics are homophilous. We let p 1 > q 1 and vary the ratio p 2 /q 2 . The k-simplicial homophily score on triangles is above 1 if and only if p 2 /q 2 is above 1, whereas the hypergraph score is consistently above 1 because p 1 > q 1 . Because the hypergraph score is influenced by both p 1 /q 1 and p 2 /q 2 , it can not decouple their effects. --- Empirical Networks To understand the effect of different homophily definitions in empirical networks, we apply the definitions to the 16 publicly available datasets described in Table 1. With the empirical networks, we are able to quantify the difference between the k-simplicial homophily score and the hypergraph homophily score for triadic interactions. Using the definitions from Section 3.1, we compute the homogeneous homophily scores for all 16 datasets and display them in Figure 3. For all but one dataset , the hypergraph homophily score is higher than the k-simplicial homophily score, consistent with synthetic experiments where p 1 > q 1 . The result is particularly strong for retail-trivago, cont-high-school, bills-house, and coauthdblp, for which k-simplicial homophily suggests anti-homophily in group formation. In retail-trivago, which has the strongest tendency for anti-homophily, we posit that travelers headed to a specific destination might look at two hotels to compare cost and amenities, but if a traveler is browsing more than three hotels, they are likely taking a longer trip or have more flexibility for their search. For the remaining three datasets, the tendency for anti-homophily is Figure 4: Homophily Scores with Heterogenous Group Compostion for conthospital. Error bars represent 95% confidence intervals. We find that the simplicial complex baseline often results in less extreme values of homophily for the majority of classes in the data and all values of t, suggesting that pairwise interactions account for much of what is observed in hypergraph homophily. much smaller, but can still be explained by a desire for diversity in larger group sizes. In the context of heterogeneous homophily definitions, it appears that pairwise interactions explain much of hypergraph homophily, as suggested in Figure 4. For nearly all classes and each value of t, the observed metric is closer to the random baseline of k-simplicial homophily than that of hypergraph homophily. That is, the baseline in k-simplicial homophily tends to "flatten" the homophily scores as a function of type t. This intuition is confirmed with homogeneous homophily scores. When using the graph homophily score to predict hypergraph homophily, we find that a simple linear model results in an R 2 value of 0.698 , with a positive coefficient that further indicates that edge homophily positively influences hypergraph homophily. In contrast, the same analysis using graph homophily to explain k-simplicial homophily on triads results in an R 2 value of 0.167 , suggesting that k-simplicial homophily offers distinct insights on group dynamics. In particular, we show that this distinct information is particularly useful in the task of higher order link prediction. --- Homophily and Higher Order Link Prediction Higher order link prediction has been introduced as a "benchmark problem to assess models and algorithms that predict higher-order structure" [4]. One is given a partial time series of network data up to a time t, and then is asked to predict if a closed but not filled triangle will become filled the after time t. In the prediction task, we learn two separate logistic regression models on the first 50% of simplices observed in the data, and test the logistic regression model on the remaining 50% of data. The first model serves as a baseline and uses the local features described in Benson et al [4] to predict the binary outcome of whether a particular closed but not filled triangle will Table 2: Group Formation Prediction Performance. Prediction performance is measured using the AUC-PR and presented relative to a random baseline. Bolded entries indicate a statistically significant larger performance metric via a bootstrapping procedure which also produces confidence intervals. become filled. The features of this regression include the frequency with which each tie occurs between each pair of nodes in the closed triangle, the degree of each node , the number of common neighbors between the nodes, and logarithmic rescalings of all of these factors. The second model uses the features of the first model and an additional binary indicator feature which is 1 if and only if all nodes in the closed triangle are the same type. The results of the logistic regression are presented in Table 2. We evaluate performance of different features using the area under the precision-recall curve and report the score relative to a random baseline, as has been done in the literature [4]. The table is sorted by the 2-simplicial homophily score computed on the training set of data, i.e. the first 50% of simplices which are used to train the logistic regression model. We find that for extreme values of the 2-simplicial homophily score, indicating either homophily or anti-homophily, that the prediction performance increases when homogeneous node labels are used as a regressor. Specifically, the two lowest 2-simplicial homophily scores and the three highest 2-simplicial homophily scores are for datasets where node labels increase predictive performance, whereas the four datasets with moderate scores see no change or decreases in performance. In contrast, when hypergraph homophily scores are sorted, no clear patterns emerge. --- Conclusions We proposed a measure for homophily in simplicial complexes, k-simplicial homophily, which isolates the homophily present in group dynamics. The necessity of such a definition was established on synthetic and empirical data, which indicated that prior notions of homophily for arbitrary hypergraphs can inherit homophilous structure from underlying pairwise interactions and miss the effect of group dynamics. k-simplicial homophily applies to groups of arbitrary size, and we provided experimental and theoretical evidence on triadic interactions that k-simplicial homophily provides distinct information from homophily scores on edges. Moreover, we showed the empirical value of k-simplicial homophily, as extreme scores indicate the value of node labels for predicting if group interactions will occur. These techniques ultimately provide a general approach to isolate group dynamics in simplicial complexes, which we believe will be useful in analyzing group interactions in complex networks more broadly.
Group interactions occur frequently in social settings, yet their properties beyond pairwise relationships in network models remain unexplored. In this work, we study homophily, the nearly ubiquitous phenomena wherein similar individuals are more likely than random to form connections with one another, and define it on simplicial complexes, a generalization of network models that goes beyond dyadic interactions. While some group homophily definitions have been proposed in the literature, we provide theoretical and empirical evidence that prior definitions mostly inherit properties of homophily in pairwise interactions rather than capture the homophily of group dynamics. Hence, we propose a new measure, ksimplicial homophily, which properly identifies homophily in group dynamics. Across 16 empirical networks, k-simplicial homophily provides information uncorrelated with homophily measures on pairwise interactions. Moreover, we show the empirical value of k-simplicial homophily in identifying when metadata on nodes is useful for predicting group interactions, whereas previous measures are uninformative.
Introduction A n estimated 56,000 new cases of HIV occur annually in the United States. 1 With the advances in antiretroviral medications, HIV has been transformed into a manageable chronic disease for those with access to treatment. 2,3 Despite these advances, AIDS-related deaths have remained stable and patients too often present to care late in the course of their HIV disease with an AIDS defining illness or immunologic AIDS. 1,2 Furthermore, there are continued disparities in the management of individuals with HIV who are engaged in medical care. Providers are often faced with significant challenges regarding retention, adherence to therapy, and management of comorbid illnesses such as psychiatric disorders and substance abuse, particularly as HIV disproportionally affects individuals of low socioeconomic status. In efforts to improve medical care management, sociodemographic characteristics and psychosocial stressors have been examined as potential barriers to engagement and ad-herence to medical care and treatment in the United States. [4][5][6][7][8] Continued engagement in medical care is paramount to survival with HIV infection. 9,10 As successful therapies have become available, new challenges have arisen regarding effective timing and type of therapy for all patients. As newer medications have been developed, the necessary adherence threshold has fortunately declined. 11,12 However, disparities in the provision of care among lower income, African Americans, Latinos, and drug-using populations receiving highly active antiretroviral therapy remains prevalent. 13,14 Specifically, women and African Americans with low annual income and depressive symptoms have been reported to adhere to HAART less successfully, and may suggest a preconceived bias in treatment choices by providers. 7,8,15 HIV medical outcomes are affected by the complex lives and environments in which individuals live. Publicly funded infrastructures have been established to ensure access to medical and ancillary care services for individuals with HIV in the United States. These infrastructures attempt to overcome some of the substantial barriers to care and treatment of HIV. In order to optimize health outcomes, understanding the sociodemographic characteristics and variations in treatment are necessary. This study was conducted to increase understanding of some of the barriers, both sociodemographics and treatment practices, to successful management of HIV in a publicly-funded urban, midwestern U.S. medical center. --- Methods This was a cross-sectional study of sociodemographic and treatment factors, and their effect on HIV viral load. As part of standard-of-care, all patients with HIV who attended the Washington University HIV Clinic in St. Louis, Missouri, completed a behavioral assessment during regular clinic visits, in which less than 3% of the clinic population surveyed refused to complete the interview. These assessments were conducted while individuals were waiting to be seen by their health care providers. All patients who presented in the clinic and had completed assessments between June and September 2007 were eligible to participate. This study was approved by Washington University School of Medicine Human Research Protection Office. WU HIV Clinic is the major provider of HIV clinical care and supportive services to people living with HIV=AIDS in the St. Louis region. A comprehensive range of services is available for HIV=AIDS patients served at WU HIV Clinic, including: laboratory services, medical case management, mental health care, patient education, peer treatment adherence counseling, support groups, transportation, childcare, and access to clinical trials research. The behavioral assessment was conducted by a trained interviewer with each patient as they waited for their provider. These assessments included measures of demographic characteristics , self-reported medication adherence using the 4-day AIDS Clinical Trial Group adherence instrument, 16 and depressive symptomatology as measured by the Patient Health Questionnaire . 17 The PHQ-9 is used to calculate severity and symptom counts that signify major depressive disorder and other depressive disorders . 18 Self-reported medication adherence was analyzed using 95% adherence cutoff as calculated by the number of pills prescribed the previous 4 days and the number reported taken, which were then dichotomized at less than 95% and greater than 95% to adhere to prescribed standards. 18 Current CD4 cell count, plasma HIV RNA level, use and types of prescribed antiretroviral therapies were collected at time of the visit. HAART was defined as the use of at least three drugs from two different antiretroviral drug classes, Protease inhibitor or non-nucleoside reverse transcriptase inhibitor , or the use of more than three nucleoside reverse transcriptase inhibitors . The number of the regimen was collected and dichotomized to first line of therapy or second line and greater. As it is expected that individuals who receive more than second lines of therapy have increased difficulty managing their care, this was included to assess any related factors in the analyses. Participants receiving HAART were categorized into NNRTI-based or PIbased therapies. There were only five individuals receiving an unboosted PI-based regimen. The participants receiving three NRTIs were excluded from therapy-based analyses. Additional analyses were conducted among individuals having a CD4 cell count less than 350 cells=mm 3 to examine factors among individuals who, based on U.S. guidelines are to be receiving HAART, and regardless of prescription continue to have low CD4 cell counts. 17 Virologic suppression was defined as having an HIV RNA level of less than 400 copies per milliliter. Previous work by our group has identified this threshold to be highly correlated with subsequent virologic failure. 19 --- Statistical analyses Descriptive analyses were conducted to describe the sample. --- Bivariate analyses were used to assess differences in the sample by gender and HIV-related measures. Differences in gender were hypothesized to exist based on previous research that found women to be less adherent to medication. 21 Tukey post hoc analyses were used for pair-wise comparisons in conjunction with the ANOVAs. Logistic regression analyses were conducted, the final model was presented as the best fit using likelihood ratios. Analyses related to virologic suppression were conducted only with individuals who were on HAART , as it is expected that those with prescriptions have unsuppressed viremia or do not currently meet recommended guidelines for treatment. 19 HIV viral loads were used as a proxy for medication adherence. HIV viral loads were dichotomized to allow for binary logistic regression analyses to be conducted in efforts to determine factors that serve as predictors of effective virologic suppression . Education levels were dichotomized: less than high school graduate=GED or more than a high school degree. Employment status was dichotomized into unemployed and employed . Annual income was dichotomized into less than and greater than $10,000. Depression severity was dichotomized to those who expressed symptoms of major or other depressive disorders within the past 2 weeks and those who did not. Age was categorized for regression analyses . The 4-day recall of medication adherence was dichotomized as less than 95% and more than 95% adherent. All tests were two-tailed and p < 0.05 was considered significant. Data analyses were performed using SPSS software . --- Results A total of 514 individuals completed the assessments between June and September 2007. The majority of the sample was male and African American , which is representative of the clinic population. There were few non-African American minorities and individuals who reported their race as ''other,'' therefore race was dichotomized into Caucasian versus African Americans= other racial= ethnic minorities. The mean age of the clinic-based sample was 41.8 years. A significant portion of the sample completed a college or graduate degree . A large proportion of the sample reported an annual salary of less than $10,000 , while 16% reported more than $30,000. There were partici- --- 230 SHACHAM ET AL. pants who refused to respond to annual income . Minimal data were missing among the employment status . Income was not used in the final analyses due to the correlation with employment status among this population, . Employment status rather than income was used. Table 1 depicts additional sample details. There were no gender differences regarding CD4 cell count or strata, yet women were receiving HAART less frequently than men . As such, women had higher mean log 10 HIV viral loads , with more women having greater than 400 copies per milliliter . Subsequent analyses were conducted only among individuals receiving HAART. Almost three quarters of the sample was receiving HAART at the time of the interview and of those, 89% of the sample had a HIV viral load of less than 400 copies per milliliter. Similar proportions of the sample were receiving a PI-based therapy and NNRTIbased therapy , 10 patients were receiving other HAART regimens. Only five respondents were receiving an unboosted PI-based therapy. Among those on HAART, women , African American=other minorities , between the ages of 18 and 34 years , those with less than a high school degree=GED , on PIbased therapy , on at least their second line of therapy , and with symptoms of depressive disorders were associated with viral load greater than 400 copies per milliliter. One quarter of the sample reported less than 95% medication adherence using the ACTG 4-day medication recall. Log 10 HIV RNA level and self-reported adherence were negatively correlated . African American=other minority participants more often reported less than 95% medication adherence and had viral loads greater than 400 copies per milliliter compared to Caucasian participants. Lower education attainment was associated with lower self-reported medication adherence as compared to those with higher levels of education completed and having a viral load greater than 400 copies per milliliter . Employment status and income were not significantly associated with selfreported medication adherence or virologic suppression. There were no differences in who was receiving PI-based or NNRTI-based therapies by gender, race, education attainment, depressive symptoms, or homelessness. Individuals with an annual income of less than $10,000 and who were unemployed more often were receiving PI-based HAART compared to individuals with an annual income greater than $10,000 and who were employed at least part-time, respectively. Self-reported medication adherence less than 95% occurred more frequently and unsuppressed viral loads occurred more often among individuals prescribed PI-based therapy . Only one individual who was prescribed NNRTIbased therapy had unsuppressed viremia . About one third of the individuals with CD4 cell counts less than 350 cells=mm 3 were not currently prescribed HAART. Individuals not on HAART more often were female , were African American=other ethnic minorities , had less than a high school degree , annual income of less than $10,000 , and had MDD=ODD than their counterparts who had CD4 cell counts less than 350 cells=mm 3 cell counts and were on HAART. Additional details of these relationships are depicted in Table 2. Table 3 shows details of the relationships between sociodemographic factors and clinic parameters. In unadjusted logistic regression models, individuals who were female, African American=other minorities, aged between 18 and 35 years, less than a high school degree=GED, had major or other depression disorder symptoms , were receiving PI-based therapy, and more than first regimen of HAART were more likely to have had a viral load greater than 400 copies per milliliter . After adjusting for gender, age, employment status, and type of therapy , individuals who were African Ameri-can=other minorities had 2.85 greater odds of having unsuppressed viral loads than their Caucasian counterparts, those who completed less education had 2.32 greater odds of having unsuppressed viral loads as compared to those with higher levels of education, those who were receiving PIbased therapy had 1.40 greater odds to have unsuppressed viral loads than those on NNRTI-based therapy, and those who had expressed symptoms indicative of MDD=ODD had 2.53 greater odds of having unsuppressed viral loads unlike those who had minimal depressive symptoms. --- Discussion This sample was a demographically and clinically representative sample of the overall population served at this urban HIV clinic, which is similar to the current HIV epidemiologic patterns of publicly funded clinics in the United States. 21 For the overwhelming majority of this clinic sample, virologic suppression was achieved. This treatment success was at least partly driven by self-reported adherence which was moderately correlated with virologic suppression in our sample. Individuals who were male, Caucasian, completed greater than a high school degree, and reported minimal depressive symptomatology were more likely to have achieved virologic suppression . Individuals on first-line HAART were also more likely to have achieved viral suppression. Among individuals with CD4 cell counts less than 350 cells per milliliter, there were disparities by gender, race=ethnicity, education, income, and depressive disorders in regards to receipt of HAART. It is evident from our analyses that patients at our clinic who continue to receive medical care and adhere to their treatment are more likely to successfully manage their HIV disease compared with patients who are not adherent to their prescribed treatment. While public infrastructures exist to create supportive services for provision of care, some individuals are unable to overcome the complexities of their lives in which HIV is just one part. The challenges that poverty presents continue to impact health outcomes. Many sociodemographic factors contribute to negative outcomes with HIV treatments, including gender, race, income, timing and type of therapy received. 5,[23][24][25][26] Women and African Americans tend to have more challenges associated with engagement in HIV care, experience difficulty adhering to medication and higher rates of major depressive disorder, lower annual income, and serostatus disclosure challenges that tend to limit adherence. 14,[26][27][28][29][30][31][32][33][34][35][36] The relationship between African American race and adherence-related virologic outcomes may be mediated by certain demographic factors such as low income, education attainment, and rates of employment that negatively affect medication adherence. 26,27 Additionally, reduced adherence may reflect concern for drug toxicity rather than loss of efficacy. 37 Prevalent depressive disorders also negatively impacted virologic suppression. While this finding is not novel, it illustrates the effect that comorbid conditions have on HIV disease, particularly psychiatric disorders, including substance use, depression, and anxiety disorders. 25,[31][32][33][34] This finding highlights the importance of consistent screening of depressive symptoms and treatment of psychiatric disorders. Additionally, many individuals have limited experience in symptom expression, which may be additionally challenging in the context of their HIV infection. Without active screening, there is likely to be a relatively low level of symptom expression. 32,[36][37][38][39] Delays in HAART initiation are evident throughout populations with HIV and are partially attributable to late diagnosis and entry into medical care among women and racial=ethnic minorities; and thus more advanced disease progression. 5,14,33 Additionally, adherence to therapies tend to decline over time, higher rates of failure have been shown to occur with limited adherence to NNRTI-based therapy. 5,6 --- SHACHAM ET AL. Overall, women in this study had higher HIV viral loads and received HAART less often than men. This finding may reflect a provider bias that women are less likely to achieve complete virologic suppression due to challenges with serostatus disclosure that impacts their adherence, and overall complex social situations. We previously reported similar findings that almost 50% of the women from our clinic population were not successfully suppressing their HIV viral load on HAART. 37 While there was no appreciable difference in CD4 cell counts by gender, these findings suggest further longitudinal examination of prescribing patterns for HAART and timing of initiation of HAART. When on HAART, women were more likely to be receiving PI-based rather than NNRTI-based HAART, yet those on NNRTIbased therapy had higher rates of adherence and virologic suppression. The gender differences that exist between PI-based and NNRTI-based therapies are most often due to concerns for potential pregnancy risk incumbent with efavirenz . In our study sample, there was equal distribution of NNRTI-and PI-based therapy. Additionally, PI-based therapy may be necessary for patients who have had difficulty adhering to medication, or are on second-line therapy or greater due to antiretroviral resistance. 45,46 Therefore, choices of the therapy type are often limited. There were several limitations to our study. It was crosssectional in nature, and cannot determine whether continued adherence to HAART is associated with sustained viral suppression and conducted in one publicly-funded Midwestern urban clinic and therefore our results may not be generalizable to other HIV patient populations. The inherent bias in self-reported data is continually a challenge when assessing risk behavior among individuals with HIV, yet short recall instruments were selected to limit this bias. Additionally, it has been documented that adherence rates decline after a 30-month follow-up period, the cross sectional nature of this study limits adding to this body of knowledge. 46 Our study highlights that treatment success continues to be associated with sociodemographic factors including race, income, education level, and gender. Race tends to be a product of a complex network of factors that include socioeconomic status, education, and access to health care, which may limit continued engagement in care and medication, or overall social capital. 44 In our clinic, much of the patient population has a low annual income and struggles with other survival challenges that are not specifically related to HIV. Key features that have been highlighted in other research include missed clinic visits, 45 having children to care for in the home , 29,47 and substance use disorders. 10 The treatment and care of individuals with HIV continue to be complicated by sociodemographic factors that are not easily modified, and findings suggest a need for further research regarding care provision is warranted. This study examined factors that are associated with successful outcomes for individuals with HIV who are engaged in medical care. Race, education attainment, and type of HIV therapy play an essential role in determining HIV-related health outcomes. These findings signify the importance of individualized interventions to be delivered within HIV testing and systems of care that address the disparities in HIV care that exist, which have the potential to enhance engagement into medical care and medication adherence, as well as improve secondary prevention efforts. --- Author Disclosure Statement Dr. Overton receives grants and research support from Abbott, GlaxoSmithKline, Merck, Tibotec, Gilead and Bavarian Nordic. He also serves as a consultant for Abbott, GlaxoSmithKline, Tibotec, Bristol-Myers Squibb and Gilead.
Understanding challenges to virologic suppression is essential to optimizing health outcomes among individuals with HIV. This cross-sectional behavioral assessment was conducted among 514 individuals presenting at an urban U.S. HIV clinic between June and September 2007. The majority of the sample was African American and male, with a mean age of 42 years. Most of the sample was receiving highly active antiretroviral therapy (HAART), and the majority of those had suppressed viral loads (HIV viral loads less than 400 copies per milliliter). By logistic regression analyses, African American=other minorities had 2.9 increased odds, those less than high school degree had 2.3 increased odds, those who were receiving ritonavir-boosted protease inhibitor therapy had 1.4 increased odds, and those who had expressed symptoms indicative of depressive disorders had 2.5 increased odds of having unsuppressed viremia as compared to Caucasians, those with more education, receiving non-nucleoside reverse transcriptase inhibitor-based therapy, and who had minimal depressive symptoms, respectively. These findings signify the importance of individualized interventions to enhance virologic suppression, both based on medication choices and individual characteristics.
Background Over the past several decades, globalization has led to a dramatic increase in the marketing and consumption of carbohydrate-and fat-dense, low-micronutrient processed foods and beverages, particularly in developing countries [1,2]. This global "nutrition transition" from the traditional to "modern" diet has been associated with a significant increase in dental caries, obesity, type II diabetes, cardiovascular diseases and cancer, described as "noncommunicable diseases" , in children and adults [3,4]. Food and beverage advertisements have been found to play a significant role in promoting the nutrition transition, contributing to the global pandemic of NCDs [5]. In response, the World Health Organization and many national and local jurisdictions have developed guidelines and regulations addressing the advertising of nonnutritious food and beverages to children [6,7]. However, implementation of the guidelines has been challenging, especially for low-and middle-income countries that lack the resources to monitor marketing activities or care for their population's burgeoning chronic health problems. Advertisements use various techniques to appeal to different populations, adapting to the cultural and social contexts of the target audience [8]. Specific strategies are used to appeal to children, for example. Also, different strategies may be used in low-or middle-income country compared to a high-income country, in urban vs. rural settings, and in different regions and cultures. Ads often target basic human emotions and desires to feel successful, loved and happy-with the message is that consuming a product can be a simple way to fulfill one's desires [9,10]. However, this manipulation of information and desires can have serious adverse health consequences. There is limited literature on food advertisements in developing countries [11,12]. Some cross-cultural studies have used content analysis to study advertising appeals in different countries, most of them of developed countries [13][14][15][16][17][18][19]; some of these studies are of food advertisements specifically [13,14]. Cheong and colleagues identified cultural dimensions of appeals, including individualism, power and long-term orientation. Advertising appeals within these dimensions included: independence, distinctiveness, family, community, popularity, status, and, health and nutrition [11]. Elliot used content analysis to assess supermarket foods targeted at children, identifying use of "fun" graphics such as cartoon characters, as well as healthy nutrition claims [13]. Aronovsky and Furnham used content analysis to study gender stereotyping in televised food advertisements [20], while Parkin's Food for Love analyzed advertisements for gender-specific messages to women [21]. There remains a need, however, for further study of food and beverage advertisements in the context of developing countries, and rural vs. urban settings. We report here on one such study that begins exploration of these topics in El Salvador in Central America. El Salvador is a lower/middle-income country, with substantial wealth and health disparities. Nationally, 40 % of the households live in poverty, including 50 % of households in rural areas [22]. Moreover, El Salvador has persistently high rates of child malnutrition-among children under age 5, 19 % nationally and 36 % in rural areas have chronic malnutrition [23]. Food insecurity is frequently exacerbated by environmental disasters such as earthquakes, hurricanes, droughts and floods [24]. In addition, over recent decades, El Salvador has experienced a dramatic rise in obesity, which has been attributed to rapid urbanization and dietary change [25]. Currently, 61 % of adults are overweight, including 26 % who are obese [25]. In children, there was a 50 % increase in obesity from 4 % to 6 % between years 1993 to 2008, with higher rates in urban and higher-income populations [22]. It is predicted that this "double burden of malnutrition" could seriously threaten the health care system's ability to care for the population's chronic diseases, and limit the country's economic productivity. Thus, there is an urgent need for interventions to reverse the unhealthy nutrition trends [25]. The interpretive study reported here is an initial exploration of the ways through which food and beverage advertisements in rural and urban areas in El Salvador interface with the "nutrition transition". --- Methods --- Study design This is a visual interpretive study of a convenience sample of food, snack and beverage advertisements in a rural and urban region of El Salvador. This study was embedded in a larger study on children's nutrition and oral health in the Santa Ana region of El Salvador. in collaboration with a local organization, ASAPROSAR. a This interpretive study aims to explore how highly processed, commercialized foods and beverages are being promoted, the methods and themes used by the advertisements, and how these differ between rural and urban areas. --- Data collection Photographic data and field notes were collected by one photographer during a 1-week period in July 2010, from six rural villages in the Santa Ana region, the roads connecting these villages to the city of Santa Ana , and the principal road from Santa Ana to the capital city San Salvador. A digital camera was used to photograph billboard and wall advertisements of food, beverages and snack products. Additional photographs from both rural and urban areas were taken. These extra photographs were of ads in close proximity to the advertisements in the formal sample, and helped provide contextual information about the how the food and beverage ads were visually displayed. The goal was to capture a full range of the various types of food and beverage advertisements encountered. In rural areas, photographs were taken while walking along small roads; in urban areas, photographs were taken from a car travelling on principal roads. This difference reflects the usual ways of commuting in these areas, and the ways people are exposed to the advertisements. Consents and Ethics policies are not applicable to this study, as human subjects were not involved. --- Data analysis When the same advertisement occurred in several places and was recorded several times, duplicate photographs were eliminated so that the final dataset comprised single representations of specific advertisements. Through qualitative analysis of the visual content of the photographic images captured, we identified patterns and explored the themes, topics and symbols revealed in the advertising [26,27]. Similar to Parkin [20], our study identifies the broad messages that food advertisements convey. Our analysis applied an interpretive approach similar to that used by Cheong and colleagues [10], by Elliot [12] for advertising appeals, and by Aronovsky and Furnham [19] for the target population. As Rose [28] suggests, the meanings of an image are made at three different sites: "the site of the production of an image, the site of the image itself and the site where it is seen by various audiences". She also suggests that "each of these sites also have three different aspects or modalities that contribute to a critical understanding of image: technological, compositional, and social". Our analysis approach focused on the sites of the image and the audience as well as compositional and social modalities as they related to the advertisements. Each advertisement was categorized for location and type of product . Each was analyzed and coded for its visual details such as color, size, design and content, for placement and context, for the meanings of the words used, for what attracted the most attention in a single advertisement, and for the relationships observed among adjacent advertisements. Then the inferential meaning and the main theme of each advertisement were identified. Ads were initially coded for their strongest, most prominent themes. Further rounds of thematic analysis were then used to identify up to two more minor themes, and the interconnections among all themes. Coding ceased when no new themes or connections could be identified across the advertisements. --- Results and Discussion In this section, we first present a general description of the advertisements, their location, and the main themes discerned. For the purposes of this analysis, we focus on just two locations-rural villages and their nearby small or secondary roads, and urban cities and their nearby principal roads. Intermediate or peri-urban locations are not addressed in this study. Each theme is presented and, where pertinent, a photograph illustrating the theme is provided. In some instances, brief and directly relevant comments are made about a specific theme with a more extensive commentary appearing later. As shown below, themes were manifest differently in rural vs. urban ads, in terms of objects upon which the ads were placed, type of food or beverage advertised, the choice and frequency of appeals, the approaches used and the meanings conveyed. --- General description of advertisements We analyzed 100 different advertisements for fast food, snack food and beverages, including 53 from rural areas and 47 from urban areas . Rural ads were predominantly for beverages, followed by snacks. In rural areas, fast food ads were not seen, likely due to the lack of such establishments in rural settings. In contrast, in urban areas where fast food restaurants were located, urban ads consisted mostly of fast food ads for chain or franchise quick-service restaurants and independently-owned outlets, followed by snack and beverage ads. An additional 21 photographs, from both rural and urban locations, were examined to further discern not the thematic content but rather the visual context of our sample. These extra photographs/ads tended to depict non-food imagessuch as tobacco products, mobile telephones and medicinesplaced in close proximity to the food or beverage ads of interest. This broader visual context bolstered our understanding of the context of the ads and the recognition of one major theme-namely, modern-in the food and beverage ads of interest. --- Context of rural and urban ads In the rural villages, advertisements were posted primarily on the walls of small local stores where local residents purchased household necessities and chatted with neighbors, and children bought snacks. Ads were also mounted on trees close to the shop, but advertisements generally Note: Duplicate photographs were removed, so each image represents a separate, independent advertisement were on the store wall, clustered around the main window, appearing like an octopus, spreading its tentacles across the wall. There was obvious motivation for ad placement to attract attention-to be more central, approximately at eye level, to have a bigger display, to have more eyecatching photographs or graphics, or to advertise a cheaper price than competitors. The villagers, mostly farm-workers and their children were the main audience for the ads. . Since many people drove or took buses within and between the main city of San Salvador and smaller towns such as Santa Ana, the ads were generally placed along the route of the main rural-urban roads-on high roadside billboards between cities, and on lower billboards in the towns where the traffic is slower. Some ads were repeated on a succession of billboards. Ads were especially prominent around major urban intersections, where they could be seen above the traffic and viewed for a longer time while waiting at a stoplight. . --- Advertising themes for food, snacks and beverages Eight prominent themes emerged from analyzing the appeals of the advertisements . The importance and order of the themes was determined based on the overall frequency of appearance of a specific theme in the total sample of ads. The most frequent themes, assumed to be the most important, were: Cheap Price, Fast, Large and Modern. Other themes were commonly used in combination with these primary or frequent themes: Refreshment, Sports/Nationalism, Sex and gender roles, Fun/Happy feelings, Family, Friendship and Community, and Health. --- Cheap price, large and fast Numbers had a significant presence in the ads, communicating two things: money and time, or "cheap price" and "fast". Numbers written in a large font against a contrasting background grabbed one's attention. In a fast food advertisement for a hamburger , half of the billboard was a picture of a hamburger; the other half was a picture of a bottle of Pepsi® and French fries, surrounded with a few words. These words were in large fonts and in red against a white background, emphasizing the price and size. From a distance, one saw the hamburger, the price: "$2.49", and a statement: "Ahorro Combo", or Savings Combo. This is a simple and effective way to appeal to the low-literacy population traveling from rural areas to the city to sell their products and buy necessities. In addition, the association of the cheap price with the disproportionately large picture of a hamburger exaggerates the good value for the money. --- Modern Modernity was used as an attractive appeal, especially but not only for the urban population. A roadside billboard for fast food, near the capital city, showed a hamburger on a plate surrounded by images of famous European buildings. The food was advertised as "The European Sandwich" . The ad appealed to the customer's aspirations for a modern and sophisticated life style associated with Europe. With the ad's unnatural proportions-the buildings dramatically scaled down and the hamburger dramatically scaled up-the image shouted out the importance of the hamburger in the context of the modern world. --- Refreshment The refreshing quality of beverages was highlighted in many rural and urban ads. This message was visually transmitted through the color or foaminess of the drink, a glass that was frosted or had beads of condensation, or bubbles in the background. It was also conveyed through words that highlighted "thirst" or "refresh". The association between the aching of thirst and the joy of slaking one's thirst reminds the viewer of the continual need for hydration in the warm Salvadoran weather, especially when doing physical labor or engaged in sports . --- Sports and nationalism The Refreshment appeal was strengthened by combination with sports images and integration with sports events . The image showed national sports team members with strong-looking faces and bodies painted with the national flag. The beverage logo was seen in four places in the ad, against a blue, bubbly background. On top, it announced, "Refresh your passion", which implied passion for sports, national pride, love or sex. On the bottom, it stated, "Refresh your world", communicating a message that this is your world and your Note: These percentages represent the proportion in this study's non-random sample, not the distribution of these items in the total population of relevant advertisements in the locations studied identity, and this powerful feeling comes from consuming this beverage. --- Sex and gender roles Sex and gender roles were used primarily in ads for soda beverages. In some ads, the inclusion of or nearby placement of ads for beer provided a context that reinforced these sex and gender roles. Most cultures have explicit or implicit generalized gender roles, and advertisements can reinforce or contradict these gender roles [29]. Sex-based themes and gender roles have been widely used to promote products in advertisements throughout the world [30][31][32][33][34]. In rural Salvadoran advertisements, sex appeal was conveyed with an unusual rawness. A soda ad on the wall of a small rural store showed a young woman, who is light-skinned, with long black hair, wearing a white bikini, on the beach. The white bikini blended with her skin, making the model appear naked at first glance, drawing the viewer into looking again. Above her abdomen and legs were the images of three large soda bottles with their prices. The ad asked the viewer to "enjoy", and "share it with ice". The combination of the image and the concepts of enjoyment and sharing can stimulate feelings of desire. In rural areas where women dress very conservatively, this advertisement appeared almost pornographic, attracting men's attention. As apparent in the photo, the ad was subject to graffiti, confirming that it drew attention from viewers. In other ads, however, the audience seemed to be women themselves, offering them a glimpse of a modern identity. The ad depicted in Additional file 6 showed a close-up of the face and upper body of a young Latinalooking woman with long black hair, eyes closed, head up, drinking soda from the bottle, similar to the male athletes in other ads. This ad presented an image to which young rural women could aspire-looking modern and sexy, and boldly swigging soda. --- Fun and happy feelings Snack foods were generally portrayed as fun to eat . These ads used bright colors and cartoon figures, which attracted attention, especially from children. An ad for ice cream showed the variety of flavors available, in different shapes and colors. In another ad, emoticon cartoon faces-happy, angry, surprised, and cool-surrounded the image of a bag of snacks, a rabbit introduced chocolate milk, and a soccer ball-shaped bag connected the "yummies" with playing soccer . These ads all used vibrant colors: pink, purple, light blue, light green, and bright red. Beverage advertisements also used "fun and games" as an appeal, but not as widely as for the snack category. When used, the beverage "fun and games" appeal mainly targeted children and young adults. Some ads offered games such as collecting bottle caps, with a reward for finding specific ones. Visually, these ads also used bright colors such as yellow and red as well as cartoon images, and combined the message with sports imagery and specific events, such as the soccer World Cup . --- Family, friendship and community The concept of Family, Friendship and Community was an appeal emphasized in some advertisements. A beverage ad showed a well-dressed, presumably middle-class family sitting at a table having beer with their dinner . The ad said, "Escógela a tu medida", or 'choose it according to your needs'. The ad hinted at gender and family roles in a modern setting, and the power of beer to facilitate social and family relationships. The ad also used the element of affordability, which could make it more appealing in a rural setting. In a restaurant, shiny round red tables with the red and white Coca Cola® logo on them mixed functionality and advertising . The Coca Cola® tables facilitated social gatherings by providing a place for families and friends to enjoy a meal together, while prominently advertising this product. --- Health Appeals to better health were not common among the advertisements in our study, in contrast to high-income countries where ads commonly tout the nutritious qualities of food and beverages to attract consumers [35]. In our sample though, appeals to health were tied to modernityfor example, one fruit drink had the word "California" at the bottom on it, another advertised having vitamin C, which was said to be "nuevo" or new. In addition, health products were advertised on the walls of rural stores, lending legitimacy to the food and beverage ads through visual and placement strategies. As seen in Additional file 11, ads promoting a variety of snacks and beverages had legitimacy conferred on them because of their placement near a health product. An "Alka-Seltzer®" advertisement, posted higher than any other ad, and with large fonts and solid colors, dominated but legitimized the rest of the ads. --- Communicative strategies Advertisements used different communicative strategies or techniques to maintain their visibility or reinforce the message for their audience. Table 3 outlines the various communicative strategies observed in our sample. --- Combination Combinations of different appeals tapped into multiple emotions and reinforced key messages. Combining appeals could provide an engaging story line with a single conclusion: the urge to buy and consume the product. For example, ads that combined Refreshment and Sports were reminders of one's thirst and need for hydration, and asserted that drinking this beverage would alleviate one's thirst and express pride for the national sports team . --- Repetition/Resonance Repetition of advertisements in different places throughout the environment conveyed a sense of omnipresence and normalcy, demonstrating that the product was an integral part of daily life. For example, beverage advertisements for soda, sports drinks and alcohol were seen on billboards and store walls throughout the community, suggesting that these were the beverages one should drink every day, in contrast to water or milk, which were rarely seen in ads. "Resonance", as defined by McQuarrie [36], "occurs when there is a repetition of elements within an ad, and when this redundancy is such that an exchange, condensation or multiplication of meaning occurs". Simple repetition is not sufficient to create resonance-repetitive elements must also echo one another, modify or recontextualize the meanings that each would have had alone [36]. The appearance of multiple soda ads in different forms and contexts supported a resonant effect. For example, on a rural store wall, several soda advertisements occupied the most visible spots in the middle of the wall; and one soda ad had a logo that was repeated in each of the four corners of the ad. --- Placement/Visibility Ads aimed to integrate their message into the consumers' daily lives. Placement of ads in prominent places throughout the community reinforced this integration and associated the product with specific community activities. For example, in both rural and urban settings, snack food and soda companies advertised on umbrellas and trucks at outdoor markets, community centers and events. The ubiquitous presence of these ads throughout the community reinforced the message that these products were integral to daily life and community celebrations, and that rural and urban communities were united by the snacking culture. --- Personification Personification is the use of familiar people or cartoon characters to help make a product seem familiar and desirable [37]. Seeing a familiar face, such as a famous person endorsing a product, can establish the value of the product and make one more likely to want that product. In addition, the characteristics of the person can be transferred to the product; for example, endorsement by an athlete implies that the product is healthy [38]. Cartoon characters can particularly appeal to children, invoking a cute, funny or fun association with the product [39]. In our sample of ads, personification was seen clearly in the cartoon characters used for advertisements for snacks, and athletes used in the advertisements for beverages. --- Redefining food and meals Ads contribute greatly to the global trend in redefining food and meals. Whereas the traditional Latin American culture valued home-cooked meals consumed together with the entire family over a relaxing several-hour midday "siesta" break [40], the ads promoted the modern lifestyle with fast food meals and snacking on-the-run. This nutrition transition to fast food and snack food was seen most prominently in the urban areas, but had begun to extend to the rural areas as well. Some ads promoted a bridge from the traditional to the modern diet through a combination of modern and traditional foods, and Spanish and English words. One fast food ad showed a "Big Burrito" combo with French fries and soda, naming it the "Nuevo Meal". The burrito, although appearing to be more traditional Latin American food, is in fact an American version of Mexican food. Combining it with other elements of modern fast food-French fries and soda-produced a modern combination with traces of authenticity [41]. Fast food establishments also redefined their food offerings to appeal to the consumers' appetites at any time of the day. For example, pizza chains sold breakfast items, encouraging dining-out for breakfast, not previously part of the local culture. The dining experience had also been redefined by associating it with other activities. For example, several fast food establishments added play structures for children, making the restaurant a fun destination for families. --- Food, snack and beverage advertising in El Salvador: increasing consumerism and shifting dietary patterns This study explored food, snack and beverage advertising in El Salvador as a means of communication, and as a chronicle of the processes of globalization, urbanization Note: These percentages represent the proportion in this study's non-random sample, not the distribution of these items in the total population of relevant advertisements in the locations studied and dietary change. This study had some limitations. It used a small convenience selection of accessible food and beverage advertisements in both rural and urban environments in a particular region in El Salvador. As such, it is not representative of all such advertisements in that country, nor of their distribution across various areas. Nevertheless, this interpretive study makes a contribution to the literature through its identification of common advertising themes, provision of brief illustrative examples and explanations for each theme. To our knowledge, it is one of very few studies that have examined the visual communicative strategies used in food and beverage advertisements in a low-to middleresource country. Overall, the ads represented a pervasive bombardment of the public with both explicit and subliminal messages. Explicit messages tended to be factual; for example, showing the cost of a particular size bottle of soda, as in Additional file 12. Subliminal messages were more subtle in their appeal, such as the suggestion that women can demonstrate or adopt a modern identity if they consume soda in particular fashion, as depicted in Additional file 6. Both types of message are intended to increase consumerism and shift dietary patterns to processed foods and beverages that are low in micronutrients and high in carbohydrates, sugar, fat and salt. There were some similarities and differences in both the products and kind of ads in rural and urban areas. While rural ads tended to promote more affordable products such as soda and snack foods, urban ads predominantly promoted fast food restaurants selling foods such as European sandwiches and pizza. Fast food advertisements consistently used the themes of cheap price, large size, and modernity, often combining themes for greater appeal. Beverage advertisements commonly used appeals of refreshment, cheap price, sports, and sex. Snack ads generally used themes of fun, modernity, and variety, with ads targeting children using bright colors and cartoon characters. The communication strategies found in these ads aimed to affect the emotional response of consumers. Tapping into emotions can be direct or subtle, as seen in slogans such as "Despierta la alegría" or "Awaken joy", and "Disfrútalo de nuevo" or "Enjoy it again". Multiple emotions were evoked simultaneously, further heightening the impact and appeal of the advertisement. Strategies seemed to differ slightly from rural to urban areas, being adapted by the advertisers to the environment, to appeal to the needs and desires of local consumers. While advertisements presented the facts regarding the pricing of products, the creative visual presentation and messaging appealed to the consumers' emotional motivation to buy the cheaper or bigger product, in order to get the best deal or "save money", which is particularly important for lowincome families. In this lower/middle-income country, with an average income of less than $10/day [42] and even less in the poorer, rural areas, it is noteworthy that families are willing to spend 5 %-10 % of their daily income on a single soda or snack. Advertising is a powerful tool for conveying messages to a broad audience-a mirror for cultural communication [43]. However, "the mirror is distorted… [it] serves the seller's interest [43]". Advertising relies on persuasive and symbolic images to sell products by "associating them with certain socially desirable qualities, but they sell, as well, a world view, a life-style and a value system congruent with the imperatives of consumer capitalism [44][45][46]". Some argue that both advertisers and people seeking information and interpreting the advertisements together create this meaning, and thus the production of advertisements is a joint effort [47]. However, in the context of a developing country, it is mostly a one-way transmission of cultural values from advertisers and companies, many of which are multinational [48] promoting consumerism at the expense of traditional culture and health [49,50]. In El Salvador, with its warm climate, the need for hydration is critical, especially for people employed in physical labor. In many rural areas, however, there were insufficient sources of affordable clean water such as the tap, wells or bottled water. While ads for soda were ubiquitous in both rural and urban settings, we found only one ad for water-a small blue-and-white, rather dull picture of a bottle, priced at almost twice the cost of a can of soda. This disparity in price between water and soda had been repeatedly noted throughout the field research period of this study. In addition, the sugar and caffeine in the soda could provide immediate sources of energy, and suppress appetite for families who frequently lack sufficient food. The marketing strategy of large, cheap and accessible soda takes advantage not just of families' needs for hydration but also implies a sensible deployment of their limited monetary resources. Furthermore, images of athletes and sports were commonly used to convey a message of healthiness to sell beverages, including soda and alcohol. The images of athletes portrayed youthfulness, strength, heroism, popularity, and health. The ads reinforced the refreshing quality of the drink and combined an emotional appeal to the youthful passion for sports along with admiration of prominent athletic figures. Globally, the sports industry has benefited from its advertising partnerships with soda, alcohol and tobacco companies, belying the adverse health consequences of these products [51,52]. World Cup soccer themes appeared widely in El Salvador, with images of the victorious players, a soccer ball, friends and family watching a game together, or as a game for children to collect bottle tops for different teams. The FIFA logo confirms the association between the beverage and sports industry, and between drinking particular products and enjoying the games. The ads implied that even long after the game ended, drinking this beverage could bring back the memories and enjoyment. This association between unhealthy food, drink and snacks and national sports figures is similar to the strategies that the tobacco industry has used in its advertising [53]. In both cases, sports have been used to promote products that have increased the burden of chronic diseases in low and middle-income countries. In addition, El Salvador has longstanding ties to the United States. The country received financial and military support from the US during its civil war from the 1970s to 1992. It adopted the US dollar in 2001, ceding control over monetary policy, and ratified the Central American Free Trade Agreement in 2006, expanding imports and exports [54]. US-based or multi-national food and beverage manufacturers, distributors or franchises are among the commercial enterprises that benefit from this policy. Trade with El Salvador because of CAFTA permits not just the easier exchange of money, products and people but also the transmission of "modern" ideas and behaviors, including dietary practices and preferences. A study by Offer and colleagues stated that countries with "market-liberal welfare regimes tend to have the highest prevalence of obesity", influenced by the prevalence of fast food, food insecurity and economic inequality [55]. The impact of CAFTA on employment, production and poverty in El Salvador could help provide another explanation for the lower price of soda than bottled water, a phenomenon observed in the field [56]. Additionally, as one-third of Salvadoran households have family members living in the US, and financial remittances constitute 16 % of gross domestic product [57], US dietary values can easily be transmitted to El Salvador to become pervasive influences, capable of penetrating deeply beyond the urban centers. Food, drink and snack advertisements contribute to changing the culture around food and beverages by promoting a "modern" diet that is high in fats and sugars, and low in whole grains and fiber-with the implicit message that the modern diet is high-status, tasty and desirable, while the traditional diet is outdated, lowstatus and undesirable [58]. In addition to the loss of the native cultural traditions, this modern diet dramatically increases the risk for obesity and other "non-communicable diseases" such as type II diabetes, cardiovascular disease and cancer [59,60]. Another less-discussed consequence of the modern diet is dental caries or tooth decay, which has become the most prevalent chronic disease worldwide [61,62]. Due to the dramatic increase in bottle-feeding and sugar/ carbohydrate-dense snack foods and beverages for children, tooth decay commonly begins within the first 2 years of life, and affects 60-95 % of children by age 6. The consequences of early childhood caries can be severe, including mouth pain, and difficulty eating, sleeping and concentrating in school [63]. Unfortunately, in many developing countries access to oral health services is limited, and decayed teeth are usually left untreated or extracted because of pain or discomfort [64]. --- Recommendations Within the field of public health, there is growing awareness of the need for "social marketing" of public health messages, applying successful marketing strategies to promote social good rather than profit [65,66]. In low-and middle-income countries, there is a need for widespread social marketing to improve nutrition. Social marketing efforts need to utilize strategies such as collecting data on target populations and identifying priority groups; to work with consumers to create tailored, engaging and persuasive messages to promote positive behavior changes; and to continually re-evaluate and tailor the messages [65][66][67]. Nutrition promotion initiatives should learn from the fast food and beverage advertisers and adopt similar marketing strategies. All types of media should be employed to address a wide audience. Catchy slogans, famous people and cartoon characters as well as attractive images and bright colors should frame and deliver the messages. Messages should be reinforced by appearing in multiple environments, and should demonstrate clear value for the consumers' health and wellbeing . Social marketing of healthy nutrition must target the general population, school children, vendors and policy-makers to create healthier social norms and environments that make healthy choices the easy choice [65][66][67]. In recent years, several Latin American nations have recognized the extent of the "nutrition transition" problem, and introduced healthy food laws to try to combat childhood obesity [68]. The implementation of such laws has proven challenging [69]. El Salvador is part of a 2012 Central American Technical Regulation that created rules on advertising claims, prohibiting the promotion of excessive consumption of foods or poor dietary practice; but the regulations lacked clear nutritional criteria to define "unhealthy" foods, limiting enforcement [69,70]. In 2012, Chile passed a comprehensive law on food labeling and advertising that included defining and posting warning labels on "unhealthy" foods high in calories, sugar, saturated fat and sodium, and decreasing their marketing to children. Industry lobbying, however, led to limits on the foods covered by the new warning labels and permitted toys to be associated with fast food aimed at children [71]. A 2013 law in Peru called for multiple strategies including nutrition warnings on processed foods and beverages, nutrition education in schools, healthy food in school kiosks or cafeterias, and controls on advertising aimed at children and adolescents, but implementation of the law awaits drafting and approval of regulations by a multi-agency commission [72]. Low and middle-income countries, such as El Salvador, should be encouraged to continue introducing and enforcing laws that regulate the marketing of processed, highly commercialized foods and beverages by national and multi-national companies, especially when these products are of low nutritional quality. --- Conclusions Marketing of "modern" foods and beverages that are high in sugar/carbohydrates and fat, and low in micronutrients, is contributing to the global nutrition transition in low and middle-income countries. While the food and beverage advertisements appeal to peoples' desires to be modern, successful and happy, and being thrifty through purchase of 'cheap' and 'convenient' foods and beverages, the adverse consequences are real and can be severe. Outcomes of the shift to the modern diet include additional expenses for food and beverages, loss of cultural practices, and risk for chronic diseases such as tooth decay, obesity, hypertension, heart disease, type II diabetes, and cancer. There is a need for further interdisciplinary study of the drivers of the nutrition transition in low and middleincome countries, and effective interventions to prevent this unhealthy trend and its adverse health consequences. In an era of globalization, with the development of communication technology, and the expansion of multinational corporations into "emerging markets", [73] most developing countries have limited resources to promote healthy diets, regulate and monitor food and beverage advertisements, and provide medical/dental treatment for the chronic diseases resulting from the nutrition transition [74]. Global marketing of food and beverages must be monitored by both global and local agencies, and be held accountable for preventing and treating the adverse health consequences in vulnerable populations. --- Endnote a Asociación Salvadoreña Pro-Salud Rural is a Salvadoran non-governmental, non-profit organization founded in 1986. ASAPROSAR works with the families in need in El Salvador to improve their quality of life through health care, early childhood programs, youth leadership training, environmental and nutritional education, micro-credit, and community development. --- Additional files Below is the link to the electronic supplementary material. Additional file 1: Wall of a small shop in a rural setting. Additional file 2: Advertisements in the urban setting of Santa Ana. Additional file 3: Cheap Price and Large Size themes in an urban ad. Additional file 4: Modern theme in ad for fast food. Additional file 5: Refreshment and Sports theme in a billboard frame advertisement. Additional file 6: Coca Cola® ad, focusing on a woman's identity. Additional file 7: Fun and Happy Feelings theme manifested in the ads in a rural setting. Additional file 8: Fun and Sports themes in a soda ad in a rural setting, aimed at children: offering the collection of Soccer World Cup team souvenirs. Additional file 9: Family/Friendship themes in a beer ad in a rural setting. Additional file 10: Coca Cola® tables in a restaurant close to Santa Ana. Additional file 11: Alka Seltzer ® ad on top of the window in a rural setting. Additional file 12: Sex Appeal, combined with Cheap Price theme used in a soda ad in a rural setting. --- Competing interests The authors declare that they have no competing interests. ---
Background: Globalization and increased marketing of non-nutritious foods and beverages are driving a nutrition transition in developing countries, adversely affecting the health of vulnerable populations. This is a visual interpretive study of food, snack, and beverage advertisements (ads) in rural and urban El Salvador to discern the strategies and messages used to promote consumption of highly processed, commercialized products. Methods: Digital photographs of billboard and wall advertisements recorded a convenience sample of 100 advertisements, including 53 from rural areas and 47 from urban areas in El Salvador. Advertisements were coded for location, type of product, visual details, placement and context. Qualitative methods were used to identify common themes used to appeal to consumers. Results: Advertisements depicted "modern" fast foods, processed snacks and sugary beverages. Overall, the most prominent themes were: Cheap Price, Fast, Large Size, and Modern. Other themes used frequently in combination with these were Refreshment, Sports/Nationalism, Sex and Gender Roles, Fun/Happy Feelings, Family, Friendship and Community, and Health. In rural areas, beverage and snack food ads with the themes of cheap price, fast, and large size tended to predominate; in urban areas, ads for fast food restaurants and the theme of modernity tended to be more prominent. Conclusions: The advertisements represented a pervasive bombardment of the public with both explicit and subliminal messages to increase consumerism and shift dietary patterns to processed foods and beverages that are low in micronutrients and high in carbohydrates, sugar, fat and salt-dietary changes that are increasing rates of child and adult diseases including tooth decay, obesity, cardiovascular disease and cancer. Global food and beverage industries must be held accountable for the adverse public health effects of their products, especially in low-middle income countries where there are fewer resources to prevent and treat the health consequences. In addition, public health and governmental authorities should learn from the advertising strategies to promote social marketing of public health messages, and enact and enforce regulations to limit the advertisement and sale of unhealthy products, particularly for children in and around schools. This will create healthier social norms and environments for the entire population.
Background Advocacy for equity in health service utilization and access including Family Planning continues to be a cornerstone in increasing universal health coverage. On a global stage, the sustainable development goals were designed on the notion of leaving no one behind, with SDG3 calling for healthy lives for all ages, while SDG10 calling for the reduction of inequities within and between countries [1,2]. Contraceptive use is a well-known intervention for improving women's and children's health as well as families' wellbeing, by reducing the risk of maternal mortality and improving infant and child survival as a result of birth spacing [3]. These benefits of FP have been highlighted in health targets for SDG3, specifically SDG3.1 and SDG3.2 [1]. Given the enormous social, economic and health benefits of FP, there have been significant global efforts; including the recent Family Planning 2020 initiative that followed the London Summit on FP in 2012, to promote family planning [4]. While equality ensures FP resources are equally distributed among the different population sub-groups, equity ensures everyone has a fair opportunity to reach their reproductive health potential regardless of their social determinants of health. This is ensured with regard to availability, accessibility, acceptability, and quality of family planning services [5]. Besides, inequalities in family planning are unavoidable differences in FP access and utilization as a result of natural biological variations, for example male cannot be offered oral contraceptives and females cannot use vasectomy. On the other hand, inequities are unfair, undesirable, unnecessary and avoidable differences which infringes on human rights norms; for example the offering of specific FP methods to clients based on age or social status, by providers [6]. It is noteworthy to mention that equity in family planning does not mean that all groups use contraception inevitably at equal rates, but rather have the same access to information and services including available methods of contraception. In addition, individuals should be able to make decisions about their fertility and use of contraception and act on those decisions [6]. Equity for family planning entails distributing resources with respect to "need" of the sub-groups to improve health outcomes or to maintain health [7]. Inequities in Family planning care; are highlighted by the differences in maternal mortality, unwanted pregnancies or in the distribution of FP resources between different population groups [8][9][10]. Thus, although FP has been identified as a key accelerator of fertility declines that may lead to economic development and eventually the demographic dividend, inequities still exist between and within countries, especially in sub-Saharan Africa [11,12]. In the Eastern and Southern Africa, there has been an increase in contraceptive use prevalence in some countries like Rwanda, yet others including Uganda have not reached their set targets [13]. The low mCPR has been attributed to several barriers to access FP services, including persistent social-cultural and economic challenges [14,15]. Moreover, studies have highlighted a lower family planning use by sex, health status, refugee status and socioeconomic conditions, like income and education [2,16,17]. Improvement in reproductive health outcomes, including reduction in MMR and the total fertility rate, as well as an increase in contraceptive use have been observed in Uganda, between 2011 to 2016 [18,19]. However, even with these improvements, Uganda's TFR remains one of the highest in the world [18], higher than the global average and the East and Southern Africa region's average [20]. Moreover, use of modern contraception at 35% is lower than the country's target of 50%, and the unmet need for FP at 28%, is nearly three times higher than the national target [21]. Likewise, key fertility determinants such as early sexual debut and first marriages are largely unchanged, and some data suggest disparities in the distribution and utilization of family planning services [19,21]. A number of FP programs have been designed and implemented in Uganda to improve access to and utilization of FP services. However, the monitoring of contraceptive use based on strategic intervenable community and individual level characteristics like education and socioeconomic status, to enable further strengthening of the family planning services utilization and access remains limited [22,23]. Real-time evidence from assessments with an equity lens is needed to facilitate targeted FP policy and programme decisions which will eliminate inequities in FP service access and utilization, improve the coverage and ultimately the reproductive health outcomes across the various population sub-groups in the country. Previous studies have assessed inequities in the use of modern contraceptive majorly using large survey datasets like the demographic and Health Surveys and Performance Monitoring for Accountability 2020 and Performance Monitoring for Action ; however, the focus has been on the wealth and geography dimensions [11,18,21,24]. Equality and universal coverage for FP have continuously or interchangeably been construed as equity. Although related, these concepts have different programmatic implication with inequity indicative of disproportionately, poor receipt or provision of health services based on community characteristics. We therefore overtly define inequity for family planning as; the unfair and avoidable disparities in the use of modern contraceptive across the different sub-populations, which infringe on human rights [25]. In this study, we examined inequities in use of modern contraceptives, based on key intervenable dimensions of wealth status and education compared by geography or demographics in the seven study sub-regions of Uganda; to inform the RISE project and other FP stakeholders on the programmatic areas of focus that can reduce inequities in FP services and improve the health of women and children in Uganda. --- Methods --- Study design Data for this analysis were accrued from a baseline crosssectional study in seven statistical regions where the "Reducing High Fertility Rates and Improving Sexual Reproductive Health Outcomes in Uganda, " project is implemented in Uganda. The seven sub-regions are based on the 2011 Uganda demographic and health survey as defined by the Uganda Bureau of Statistics . The study regions were Central 1, Central 2, East-Central, Eastern, Karamoja, Western, and West Nile. --- Sample size and sampling The sample size for the RISE baseline survey was a total of 3 607, half of them women of reproductive age and the other half men . The sample size estimate was based on the following assumptions; intention to use FP of 62% as per PMA2020 in the general population, desired margin of error δ at 4%, individual response rate at 80%, a household response rate at 80%, a design effect of 2 and resulting in a sample size of 1,767 each for male and female. This was adjusted for a a non-response rate of 2% as in the UDHS 2016 to result into 1,803 for each female and male sample separately. The male and female study sample was equally distributed across the 7 study regions. The final response rate was 74.7% , resulting in 1346 females available for this analysis. First, data collectors in each enumeration area mapped and listed all households. Where the number of households listed in an EA was less than 120, an adjacent EA was added for mapping, listing prior to sampling 60 households. Half of the randomly selected households in each EA was assigned for eligible female respondents while the other half was for eligible male. Female eligibility was defined as being a usual household resident between 15 to 49 years of age, while male eligibility was usual household resident aged 18-54 years. Where more than one eligible participant was enumerated in a household, a systematic sampling was applied using a computer app installed on the smartphone to randomly select one member. --- Data collection In each household, the details of name, index number, age and sex were entered into the pre-programmed listing form within the ODK online data collection software [26]. A random selection of one eligible participant per household was carried out using a code developed within the ODK's programming enabling option. The selection of households followed a non-substitution policy and that means selected households were not replaced if respondents were unavailable [27]. Studies show that substitution leads to samples that do not match known population distributions [27]. Moreover, large surveys in the country by UBOS and PMA2020 also follow the nonsubstitution policy. At least 3 call backs were made at different times and days before declaring the respondents as unavailable for interview. Each research assistant interviewed a respondent of the same sex to improve quality of data. --- Measurements For the purpose of this study, equity in family planning utilization was assessed along three dimensions i) Geography defined as rural/urban residence based on location of EA as assigned by national statistical office ii) wealth/ economic, defined as lowest, lower, middle, higher and highest quintiles; measured by ownership/possession of household assets , and iii) Social-demographics that included marital status , highest level of education attained and age in completed years categorized as 15-19 years, 20-24 years, 30-39 years and 40-49 years. Other socio demographics included: disability status as measured by the Washington Group [28], Employment status , and the 7 sub-regions . The intermediate variables mainly focused on the supply-side, defined as places used to get FP, measured by; access to a health facility/private or public, and the demand-side, defined as exposure of electronic and paper media FP messages and messages via village health teams , measured as; knows any FP method, knows a modern FP method, knows 3 FP methods, knows 5 FP methods, knows an organization/facilities that offer FP and heard about FP from any media in the past 2 weeks. The primary outcome variable of interest for this analysis was use of modern family planning 1 , measured as; using or not using modern FP. --- Data management and statistical analysis Although the large RISE project survey had both male and female, this analysis focuses only on eligible females aged 15-49. --- Construction of analytical weights All analyses were conducted with STATA software version 15 using the surveyset methodology that handles and accounts for the survey design. All the analyses were weighted, unless specified. The Uganda Bureau of statistics provided the EA selection weights. The EA selection weights were adjusted for probability of selecting a household per EA, eligible participants per sampled household and the non-response rate at EA level. The adjustments resulted into final weights that were used to weight the analysis. The descriptive analyses were presented stratified by residence, rural/urban. Statistical weighting was done because of the multistage sampling approach, and the weights were scaled so as to sum the target population for the survey. --- Analysis of socio-economic equity in utilization of modern family planning Concentration curve A graphical representation of how a health variable, use of modern contraceptives is distributed across population ordered characteristics such as education and wealth/ socioeconomic status measured as wealth-quintiles was done in this study. The cumulative proportion of a health variable is plotted on the y-axis against the cumulative proportion of the population/representative sample ordered/ranked by a characteristic; education or wealth/socioeconomic status. Wealth-quintiles or levels of education are ranked from the lowest to the highest on the x-axis. An equally distributed health variable across the wealth-quintiles/levels of education will result in the concentration curve with 45° line showing no inequality. However, if a health variable ranks with higher values among people in lower wealth-quintile or level of education, the concentration curve will lie above the line of equality. The further the curve lies from the line of equality, the greater the degree of Inequality in health. If, by contrast, the health variable ranks with lower values among people with lower wealth-quintile or level of education, the concentration curve will lie below the line of equality. --- Concentration index The concentration index provides a measure of the degree of Inequality in a health variable over the distribution of another variable. Concentration indices as a measure of inequality in one variable over the distribution of another [29] are a common choice for the measurement of socioeconomic-related health inequality [30]. We therefore used concentration index as amethod of choice in this study to measure Inequity in use of moderncontraceptives mCPRover the sample distribution of household wealth, and women's education. A comparison of these indices was made byresidence , marital status, sub-regions and age todetermine if these indices varied by the strata. The standard version of the concentration index was derived from the concentration curve and represents twice the area between the concentration curve and the 45° line of equality. However, use or non-use of modern contraceptives was a bounded health variable, with binary indicators/outcome , we thus used the Erreygers Concentration Index, or ECI . The ECI satisfies the conditions that the absolute value of the index is the same regardless of whether the outcome used to assess Inequity is users or non-user of modern contraceptive , and that the value of the index is invariant to any feasible positive linear transformation of the health variable . The ECI is defined as: where h i _is the health variable, use or non-use of modern contraceptives, R i _is the fractional rank of woman i in the distribution of wealth-quintile status, n is the number of observations and b h and a h are the variables upper bound and lower bound, respectively 2 . The equation shows that the concentration index can be interpreted as a sum of weighted health levels, with the weights being determined by the wealth-quintile rank . The ECI is a measure of absolute Inequality ECI = 8 n 2 n i=1 h i R i 1 Modern methods include: oral contraceptive pills, implants, injectables, contraceptive patch, vaginal ring, intrauterine device, female and male condoms, female and male sterilization, vaginal barrier methods , lactational amenorrhea method, emergency contraception pills, standard days method, basal body temperature method, Two-Day method and sympto-thermal method 2 For binary variables equals one. for bounded variables. ECI values have a possible range from -1 to +1. It has a negative value when the health indicator is concentrated among the more disadvantaged ; and it has a positive value when the health indicator is concentrated among the more advantaged . When there is no inequality, the ECI value is 0. The command conindex with the erreygers option in STATA v14.2 was used to calculate wealth and education-related Erreygers concentration indices. Similarly, a Wagstaff CI was used to arrive to the same conclusions. The concentration index was used as index of health Inequality because it satisfies the minimum criteria for a health Inequality measures it is reflective of the socioeconomic dimensions of health inequity, that it portrays the experience of the entire population, and it is sensitive to changes in the distribution of the population across socioeconomic groups. The generalized concentration index is appropriate in cases where absolute Inequality is of interest [31]. --- Statistical modeling to determine factors associated with utilization of modern family planning methods The final response rate was 74.7% , resulting in 1346 females available for this analysis. Exploratory data analyses were conducted to generate descriptive statistics from the sample of the respondents especially the sociodemographic characteristics, and categorical variables were presented as weighted proportions. A generalized linear model under svyset was used for the regression analyses with the use of modern contraceptive as the primary outcome coded "1" if participant was a current user and "0" if not a current user. The prevalence ratio was used as a measure of association instead of the odds ratio because the primary outcome was common , and this approach minimizes the overestimation of the association. The PR was obtained by using a "modified" Poisson regression model via a generalized linear model with family as Poisson and a log link. The prevalence ratio compares the percent of the outcome between any two groups or levels of a variable. All PRs were estimated together with their corresponding 95% confidence intervals . A stepwise/logic analysis was conducted using the analytical conceptual framework starting with equity in family planning utilization dimensions. Geographical defined as rural/urban, economic based on wealth-quintile, and socio-demographic based on age-categorization as adolescent , young women , and older women grouped as 25-39 and 40-49 years, and marital status. Intermediate variables included supply and demand . Lastly, women individual characteristics were included. All these thematic areas were modeled separately for models 1 and model 2 . In order to identify factors independently associated with the outcome, only variables in model-2 that had p-value of 20% or less, or known confounders or factors from previous studies, were added to the final multivariable regression model-3 which has i) equity dimensions, ii) individual and household level characteristics and iii) intermediate variables . All factors with statistical significance, p<0.05 were considered important. When we had two competing models, we used the Akaike's Information Criteria to select the "best" model. Collinearity of the explanatory variables was assessed using the Stata variance inflation factor . All the key variables included in the final models did not violate the 10% threshold; e.g. age was selected over parity due to potential challenges of collinearity. Three models were used to determine the factors associated with utilization of family planning. Model-2 statistics were used to inform model-3 to account for potential confounders that may have been missed in model-1. Some variables, like disability status, knowledge of i) any FP method, ii) any modern method and iii) 5 FP methods were collinear with 3+FP methods. We thus opted to consider only 3+FP methods. Interaction of key predictors in the association with the primary outcome of interest was assessed. Assessing interaction terms is important because this can help identify and streamline targeted programmatic interventions geared towards improving service uptake or minimizing adverse outcomes. We therefore included an interaction term between age and marital status to enable us to further explain variation in use of modern contraceptives. The interaction term enabled us to better understand if associations between the use of modern contraceptives and marital status further vary by participants' age categorization . Then, messages and actual service delivery and programs can be targeted. The statistical significance of the covariates and the interaction terms was determined using the Wald's test ). The RISE survey has constructed sampling weights in the design of the survey. These weights were accounted for in order to obtain representative estimates, via use of the svyset commands in Stata. Use of generalized linear model in the surveyset also accounts for clustering of observations at the lowest level, which was assumed at the EA level. --- Results Table 1 shows the characteristics of participants stratified by rural/urban residence. Majority of the participants were from rural residence . The percent of rural participants was highest in the Eastern , followed by Western , and lowest in Central-1 . Overall, 29.4% of the participants were from the second highest wealth-quintile, followed by 24% in the lowest quintile. Only 3.3% of the rural were in the highest wealth-quintile compared to a third in the urban, while 11% of the urban were in the lowest wealthquintile compared to 29.3% in the rural settings. Majority of the participants were aged 25-39 years , higher in the urban compared to the rural , while adolescents were only 15.4%, higher in the rural compared to the urban . Three-quarters of the participants in rural residency were married compared to only 63% in the urban, while selfreported disability tended to be higher in the rural relative to the urban . Only a third of participants had at least secondary level of education, higher in the urban compared to the rural , but both primary and no education were more common in the rural. Unemployment was higher in the urban , compared to the rural , while in the rural only 6.1% were students compared to 11.5% in the urban. --- Inequity in use of modern contraceptivesby wealth Figure 1 shows the concentration curves for utilization of modern contraceptive in 7 sub-regions in Uganda, while Table 2 shows the Erreygers Concentration index of Inequity in use of modern contraceptives by wealth status and level of education compared for: the type of residence, sub-region, age , disability status and, marital status. Overall, concentration of use of modern contraceptives was among the wealthiest women, with the Erreygers Concentration Index, ECI=0.172, p<0.001. This Inequity is more apparent in the urban ECI=0.213 compared to rural settings, ECI=0.145 , but the difference by residence ECI=0.067 was not statistically significant . We also observed the concentration of use of modern contraceptives in the wealthiest women as being significant in sub-region of Central-1, ECI=0.143; women aged 20-24 years, ECI=0.238, 25-39 years, ECI=0.165 and 40-49 years, ECI=0.178; the never-married, ECI=0.155 and the married, ECI=0.227. However, in Karamoja the use of modern contraceptives was concentrated in the poorest women, ECI=-0.002. --- Inequity in use of modern contraceptives by education level The overall Inequity in use of modern contraceptives by education was highest in favor of women with higher education, ECI=0.146 but this did not vary by residence , p=0.9983. We also observed the concentration in use of modern contraceptives in the women with higher education as being significant in sub-region of East-Central, ECI=0.238 and in West-Nile ECI=0.191 ; women aged 20-24 years, ECI=0.162 , 25-39 years, ECI=0.134 and 40-49 years, ECI=0.211 ; nevermarried, ECI=0.145 and married, ECI=0.197, as shown in Table 2. --- Factors associated with use of modern contraceptives Table 3 shows use modern contraceptive prevalence by measures of equity, individual and intermediate variables . The overall of use of contraceptives was 34.2% [CI:30.9, 37.6], higher in the urban compared to rural settings but the difference was not statistically Table 4 shows the unadjusted and adjusted prevalence ratios and 95 % confidence intervals by measures of inequity, individual and intermediate variables. Three models were generated with model-1 having unadjusted PR of use of modern contraceptives, while model-2 with adjusted PR of either equity dimensions alone, individual characteristics or demand/supply variables alone. Lastly model-3 provides the final adjusted prevalence ratios of use of modern contraceptives for all significant variables in model-2 and the geographical rural/urban variable included irrespective of its statistical significance. Knowledge of at least three methods of FP, or facilities/organizations providing FP and heard of FP from at least two media sources and places ever used to get FP services were significantly associated with higher use of modern contraceptives. In the final model 3, use of modern contraceptives was similar between rural/urban settings. In comparison to Western sub-region, use of modern contraceptives was significantly lower in Karamoja, adj. PR=0.41[CI:0.26, 0.65] and West-Nile, adj. PR=0.71 [CI: 0.57, 0.89] but significantly higher in East-Central, adj. PR=1.22 [CI:1.00, 1.49] and marginal in Eastern, adj. PR=1.27 [CI:0.98, 1.65] as shown in Fig. 2. As shown in Fig. 2, women in the highest two-wealth quintiles had a 20% higher use of modern contraceptives compared to the lowest quintile, but this was not statistically significant in the final model . For the interaction term in Table 4, the ratio of use of modern contraceptives for the 20-24, 25-39 and 40-49 year olds compared to the 15-19 year olds, was significantly lower among the divorced/widowed compared to the never-married women, 0.09[CI: 0.02,0.39] p=0.002, Women with the secondary or higher level education compared to those with no-education had a 54% higher use of modern contraceptives, adj. PR=1.54 [CI:1.16, 2.04] while women with primary education had 25% higher use of modern contraceptives compared to noeducation but this difference was not statistically significant, adj. PR=1.25[CI:0.97, 1.59]. Also, prior receipt and use of FP services was associated with current use of modern contraceptives, adj. PR=4.24 [CI: 2.54, 7.06]. --- Discussion This study shows that use of modern contraceptives is disproportionately concentrated among wealthier and more educated women in Uganda, especially in favor of women in the urban areas, those aged 20 years and above, and with regional variations. We also found that use of modern contraceptives was higher among women who have ever used NGOs/Hospitals/Health Centers to get FP services and commodities, secondary or higher level of education, and in the East-Central region. In this study, the concentration in use of modern contraceptives in women with higher education is significant in the rural but not urban areas, whereas, that of wealthier women was significant for both rural and urban areas. In the same way, prior evidence cites that; in sub-Saharan Africa, family planning programs may initially have reached out to better-off clients, especially in urban areas, and now to promote equity, programs ought to emphasize efforts that increase FP access to those in rural and peri-urban areas [32]. Our findings support this, and further suggest that; family planning programs need to reduce socioeconomic and education related inequities in use of modern contraceptives that favor the wealthier or more educated, by targeting FP services to the socioeconomically disadvantaged women, or women with less education especially in the rural areas. We also observed the concentration in use of modern contraceptives among the wealthiest women and those with higher education as being significant, for women aged 20 years and above compared to adolescents,15-19-year-old. Studies have shown that; for sub-groups like the young, almost half of the women in need were not using an effective family planning method [11,33]. This finding may partially explain the persistent teenage pregnancies, the increasing unintended pregnancies and high maternal mortality in Uganda [19,21]. A study on barriers to modern FP uptake among young women in Tanzania indicated myths and misconceptions, and fear of side effects as the core barriers, as well as unavailability of the preferred method and absence of the trained personnel for the FP method, although the intimate partner or closest friends were significant decision influencers on contraceptive use, [34,35]. It is imperative thus, for FP programmers to consider young people customized interventions, unique to their needs and preferences to improve contraceptive use and ultimately reduce the associated poor reproductive health outcomes in the country. A study in Nigeria showed a higher uptake of any FP method among the un-married compared to the divorced/widowed women. Similarly, this study also suggests that FP interventions be geared towards the 20-24, 25-39 and 40-49 year-olds for the divorces/ widowed as compared to 15-19yr, while among the never married, focus may be geared towards the 15-19 yearolds. This emphasizes the importance of evidently understanding and taking in to consideration each subgroups' context and particularities while planning FP programs [24], in order to reduce the inequities for FP in Uganda. In this study, there was substantially a higher concentration in use of modern contraceptives among the wealthiest and women with higher education by subregions, indicating regional inequities. Similarly, a previous study cited that, inequities in Uganda were widely spread across country's 15 regions and virtually every region struggled to provide equitable access to family planning information and services [19,33]. These findings bolster the importance of addressing inequities for FP by the FP programmers in Uganda, taking into account the dimension of regions, if the impacts of FP interventions are to be attained. Previous studies have cited absence of equitable reproductive health access among the disabled [36][37][38] and poorer reproductive health outcomes for this population sub-group [36]. Likewise, in this study, we found that use of modern contraceptives was higher in women with no reported form of disability compared to those reporting at least one form disability. Family planning information and services should be physically and geographically accessible, and affordable, for all [6], if we are to achieve equity. Besides, information should be evidence based Fig. 2 Adjusted prevalence ratios comparing modern contraceptive rate of each Wealth quintiles against the lowest, and all regions against Western and widely available in forms consistent with people's needs [39]. It is essential therefore, for FP programs in Uganda to generate context-specific evidence on why this sub-group may be having low FP uptake compared to their counterparts [9]. With a deeper understanding of such inequities, informed effective targeted interventions will be implemented, to increase FP-access and improve the related reproductive outcomes among the disabled people. In this study, knowledge of at least three methods of FP, or facilities/organizations providing FP and heard of FP from at least two media sources and places used to ever get FP services were significantly associated with higher use of modern contraceptives. This finding is in agreement with previous literature, which has cited that; effective counseling, and community-based behavioralchange communication programs aimed at improving the perceptions of women to bridge knowledge gaps about contraceptive methods and to changing deep-seated negative beliefs related to contraceptive use [40,41], were needed to increase modern contraceptive use. However, such behavioural change interventions also have to be tailored to the sub-groups' unique information needs, as a strategy to effectively address the inequities in FP utilization and ultimately achieve universal coverage for FP in Uganda. Although the Uganda Ministry of Health through the various FP programs has undertaken some of the evidence-based approaches including: enhancing mobile outreaches, village health centers, social franchising, which are especially successful in reaching rural and poorer clients through community health workers [28,42,43], there is need to modify, strengthen and scaleup these, informed by evidence, targeting the disfavored sub-groups; while fundamentally ensuring the quality of FP services especially in public health facilities to correct misconceptions about modern methods among rural women [8]. Furthermore, availing a broad range contraceptives through pharmacies and drug shops, to harness FP-selfcare interventions [20,28], while considering particular women's fertility intentions and the sub-groups' FP needs [12], could be a possible avenue to close such equity gaps in FP programming. For financial barriers to FP access, the utility of vouchers and use of the ''total market approach, '' which encourages the better-off to use private-sector services so as to free up public-sector services for less well-off clients, may be optimized by FP-programmers [28,29,32], while coordinating the public and private sectors to streamline and maximize the benefits of the services in the country [20]. More to that, there is need to design, implement and monitor adolescent-customized interventions, that address not only the supply side but also the social norms that may deter contraception uptake for this agegroup [11,28], implying that FP campaigns should focus beyond the individual level and health facility system factors to address such inequities for FP in Uganda. We used cross-sectional survey data, which can only show associations rather than infer causality between the equity dimensions and the use of modern contraceptives. Furthermore, for this study we did not consider other important factors like culture or partner-related characteristics that could influence women's use of contraception, as well as the low prevalence of disability that limits the precision of the inequity estimate in this group. But from our findings, we confidently state that the need for contraception is not being fully addressed among all the sub-groups in Uganda, disfavoring the vulnerable women. Additionally, this study may serve as a basis for future studies that may set out to assess inequities for FP; since measuring inequities using appropriate indicators, identifying who/where to intervene effectively, recognizing the underlying multifaceted contributors and effective monitoring, are critical; to promote FP uptake opportunities for all people regardless of their social background [30], broadly, equitably improving the health and health outcomes across the various population sub-groups in Uganda. --- Strengths and limitations To our knowledge, this is one of a few studies that have provided evidence on inequities in a family planning indicator, use of modern contraceptives, and is based on a demographic health survey design. The self-reported outcome variable might have influences of social desirable responses because the study communities are receiving FP intervention from the RISE project. However, this was minimized by use of well trained and experienced research assistants, and the findings of use of modern contraceptives are consistent with recent national level surveys.. --- Recommendations FP implementing partners need to target FP services to young girls and women with no or low education levels or the socioeconomically disadvantaged across geographies and marital status. Increasing community access to a broad range of contraceptives through outreaches and subsidized selfcare through pharmacies and drug shops could improve uptake among the socio-economically disadvantaged women. Broadly, these interventions may close/further minimize the inequity gaps in FP programming. Further analysis to determine to what degree the inequities are due to FP demand generation, or supplies/service provision to the disadvantage sub-population should be conducted. This will enable subgroup context specific FP programs interventions/strategies to minimize especially the education and socio-economic related inequities in use of modern contraceptives. FP implementing partners may need to engage with government programs as such as operation wealth creation and local Savings and Credit Cooperative Societies to strengthen FP within this government program and to also ensure that women are involved in the economic development programs. Enhanced socio-economic wellbeing will then support close the economic gaps and thus minimize socio-economic inequity in use of modern contraceptives. FP implementation partners may need to collaboratively work with government institutions that promote and ensure universal primary and secondary education so that all girls of school going age can be encouraged to enroll and be retained into formal education as per the UPE/USE policy, because of the subsequent long-term benefits of education to FP programing. --- Conclusion Socioeconomic and education related inequities in the use of modern contraceptives substantially exist among the different population sub-groups in Uganda, especially disfavoring adolescents and rural women. Thus, targeted interventions need to be devised to address the unique FP-needs of these subgroups, if universal FP coverage is to be attained. --- --- Abbreviations --- --- Consent for publication Not applicable --- 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 Advocacy for equity in health service utilization and access, including Family Planning (FP) continues to be a cornerstone in increasing universal health coverage. Inequities in Family planning are highlighted by the differences in reproductive health outcomes or in the distribution of resources among different population groups. In this study we examine inequities in use of modern contraceptives with respect to Socio-economic and Education dimensions in seven sub-regions in Uganda.The data were obtained from a baseline cross-sectional study in seven statistical regions where a program entitled "Reducing High Fertility Rates and Improving Sexual Reproductive Health Outcomes in Uganda, (RISE)" is implemented in Uganda. There was a total of 3,607 respondents, half of whom were women of reproductive age (15-49 years) and the other half men (18-54 years). Equity in family planning utilization was assessed by geography, wealth/economic and social-demographics. The use of modern family planning was measured as; using or not using modern FP. Concentration indices were used to measure the degree of Inequality in the use of modern contraceptives. Prevalence Ratios to compare use of modern FP were computed using modified Poisson regression run in STATA V15. Results Three-quarters (75.6%) of the participants in rural areas were married compared to only 63% in the urban. Overall use of modern contraceptives was 34.2% [CI:30.9, 37.6], without significant variation by rural/urban settings. Women in the higher socio-economic status (SES) were more advantaged in use of modern contraceptives compared to lower SES women. The overall Erreygers Concentration Index, as a measure of inequity, was 0.172, p<0.001. Overall, inequity in use of modern contraceptives by education was highest in favor of women with higher education (ECI=0.146, p=0.0001), and the concentration of use of modern contraceptives in women with higher education was significant in the rural but not urban areas Conclusion Inequities in the use of modern contraceptives still exist in favor of women with more education or higher socio-economic status, mainly in the rural settings. Focused programmatic interventions in rural settings should be delivered if universal Family Planning uptake is to be improved.
INTRODUCTION Most developed countries experience an increase in female labor participation and marital instability simultaneously . However, in China, the trend features increased marital instability and decreased female labor participation . Although China has a higher female labor participation rate compared to other countries, the female labor participation rate in China has decreased dramatically, from 73% in 1990 to 61% in 2018 . Gender equality policies from plan-oriented economies contributed to the increased labor participation rate between 1949 and 1978 in China, reaching about 90%. However, during that era, overworked women were a common phenomenon . With the transfer to a market-oriented economy after 1979, macro-level factors of the market system, economy development, and micro-level factors related to family needs have mutually contributed to the decrease in female labor participation. In a market-oriented economy, the market is the chief driver of labor allocation, not the government. Females were able to make independent decisions regarding whether to enter the labor market. Thus, part of the decline in female labor participation could be attributed to individual decisions . Organizations transformed into rational employers to balance costs and benefits. Female and male employees started to compete for the same positions. Due to medical liabilities unique to the female gender and gender discrimination toward assumed insufficient female productivity, female employees lost their competitive advantage, which partly explained the decline in female labor participation . With economic development, however, the rise in individual income levels increased the demand for leisure time; therefore, some females left the labor market. Through this process, domestic labor division was strengthened . Since China's economic reform, governmentsupported caretaking has been gradually terminated, shifting childrearing, and eldercare back to households . Therefore, the traditional expectation from women to care for children and the elderly has also contributed to low female labor market participation . Therefore, gender inequality in the country is reinforced by political and economic decisions, and Chinese women who wish to work undertake two opposing roles-being full-time employees and homemakers-which reveals a discrepancy between egalitarian household economic relationships and complementarian household labor divisions, ultimately increasing tension within families . Since the 1980s, Chinese attitudes toward marriage and family have transitioned from a strict traditional hierarchical system to a relatively relaxed modern one, focusing on individualism, and an egalitarian relationship between an individual and the family members . This transition consequently has altered family formation, structure, size, and the relationships between husbands and wives, and between parents and children . A new marriage law, enacted in 1981, featured a simplified divorce procedure that shifted control of marital decisions from extended families to individuals, who became empowered to independently determine whether to begin or end a marriage, especially enabling development for women . Thus, social acceptance of divorce is increasing, and people can pursue divorce without limitations. Indeed, a vast majority of divorce proceedings have been initiated by women . Thus, the divorce rate increased from 0.18‰ in 1978 to 3.20‰ in 2018 . Most studies have concentrated on marital effects on female labor participation. Theories of domestic labor division and work-to-family conflicts explain marital effects on gender differences in labor participation, where female employees are more likely than male employees to postpone work tasks due to family issues . However, few studies have explained the retroactive effects of female labor participation on marital issues. Furthermore, female labor participation and marital stability have a bilateral relationship. On the one hand, there is no clear causal relationship between female labor participation and marital instability. Based on gender role differences, the loss of economic power exchange between the genders when women are employed and the independence of working women have contributed to the positive causal relationship between a rise in female labor participation and increasing marital instability . However, Greenstein , Oppenheimer , Rogers , and Sayer and Bianchi found little empirical support for the positive causal relationship between female labor participation and marital instability. On the other hand, there does exist a clear positive causal relationship between marital instability and female labor participation. Increase in marital instability contributes to the rise of female labor participation, especially for women with high divorce risk and who are not employed . Xu and Ocker argue that although the topic of family life has not been extensively researched in China, marital stability is essential to a familycentered society, in that it is intricately connected to fertility and aging issues. Ma et al. further posed a question that required research regarding how women's labor participation development affects marital instability in China. Thus, whether female labor participation is a reason for marital dissolution is unclear. The argument positing a positive relationship between marital quality and marital stability is empirically supported by Booth et al. and Xu . Xu further supports that marital quality not only directly and positively affects marital stability but is also an intermediary to other factors, ultimately affecting marital stability. Furthermore, marital satisfaction, as a crucial index of marital quality, has positively influenced marital stability and contributes to spiritual and physical health . Indeed, marital satisfaction itself also has direct and indirect positive effects on marital stability, in that a satisfied couple contributes to a stable marriage. Marital satisfaction itself is a useful predictor for marital stability; also, it is a mediator for other factors affecting marital stability . Therefore, in this study, marital satisfaction was chosen to measure couples' marital quality. Subsequently, both the extensive and intensive effects of female labor participation on marital satisfaction for women and their spouses were investigated separately, including extensive inquiries regarding the presence of women in the labor market and intensive inquiries regarding the quantity of time devoted to jobs. A binary model of marital satisfaction was established, and the China Family Panel Studies of 2014 were reviewed to discuss significant issues. --- HYPOTHESES --- Effects of Women's Labor Participation on Marital Satisfaction Based on Gender Research on marital quality and female employment is centered on whether and how women's employment affects marital quality, including comparisons between paid and unpaid labor, and between full-time and part-time employment . In addition, there are gender differences in marital quality evaluation, where Bernard argues that women experience lower marriage satisfaction than men. However, Jackson et al. find little evidence to support gender differences in marital satisfaction. Additionally, wives are affected by marital characteristics and perceptions of unfairness, while husbands are affected by their employment . Nock further argues that men are more significantly advantaged by their marriages than women because men have benefited from the status of being married, regardless of marriage quality. Conversely, women are more likely to describe marital advantages based on quality experiences. Thus, this study developed Hypothesis 1: Women's labor participation has different effects on marital satisfaction based on gender. Wives' labor participation may decrease husbands' marital satisfaction. But wives' labor participation may not affect their own marital satisfaction. --- Effects of Gender Roles on Marital Satisfaction Gender role is a crucial factor in marital stability, which is supported by gender role functional theory by Parsons and gender role and competition theory by Becker . Gender roles also affect marital satisfaction, fertility decisions, domestic labor division, and labor participation decisions . Furthermore, individuals are more likely to encounter marital problems when their counterparts' gender role attitudes exceed their own expectations . Vannoy and Philliber emphasized that gender roles, not female labor participation, affect marital quality. Traditional gender role attitudes toward women negatively impact human capital acquisition, educational return, and labor supply . However, in more gender-equal societies, women and their husbands are more significantly incentivized to support female labor participation . Over the past 20 years, Chinese women have become more egalitarian than men, while men have remained more conservative in every age cohort . Indeed, Liu and Tong conclude that women who are more egalitarian toward gender roles are typically classified in higher socioeconomic statuses, make financial contributions to their families, have equivalent or higher occupational statuses, and exert familial assertiveness with their counterparts. Thus, this study developed Hypothesis 2: Under traditional gender roles, wives' labor participation decreases both wives' and husbands' marital satisfaction. --- Effects of Domestic-Labor Division on Marital Satisfaction Despite changes in the workforce, the housekeeping role of women persists, and the gender gap among the share of housework remains statistically unchanged. The average time devoted to performing household chores for women per day is 2.1 h, which is 2.4 times higher than that for men . Women also engage in 53 min of childrearing, compared to 17 min for men . Yang concludes that gender roles in China have become more egalitarian, but attitudes around domestic labor division tend to be conservative. Most employed Chinese women work full-time jobs but are still responsible for unpaid care work; therefore, women have double or triple roles as dual-earners, housekeepers, and oftentimes caregivers . Thus, with the burden of housework, women encounter psychological and emotional risks, which indirectly affect marital quality. Husbands' reluctance to share household responsibilities will increase marital tension, especially for women who believe in egalitarian gender roles . Additionally, wives who perform less housework will decrease their husbands' marital satisfaction . Thus, this study developed Hypothesis 3: Husbands who participate in domestic work may increase their wives' marital satisfaction but decrease their own marital satisfaction. --- Effects of Women's Work Hours on Marital Satisfaction Although women's dependencies on men have decreased with an increase in their own economic statuses, the bargaining power of resource exchanges, and traditional gender distribution patterns still contribute to a couple's time allocation between market and domestic labors . While overtime work is not socially acceptable in China, Qi and Dong highlight that it is common in China, especially in manufacturing and commercial service sectors. Additionally, women who work in rural regions work more hours than their urban counterparts. Wives' work hours have substantial effects on marital quality, negatively impacting marital interaction and positively contributing to family conflict . Wives' high workloads may increase their psychological pressure when they or their counterparts hold traditional gender attitudes . Thus, this study developed Hypothesis 4: Wives who work extended hours decrease their husbands' marital satisfaction. Effects of Women's Income on Marital Satisfaction Blair argues that marital quality is measured by factors such as hours spent in the workplace, income, and work scheduling. Becker emphasizes that increasing public wages will affect female labor participation and marital quality by attracting women to the labor market and increasing marital risks. Ogawa and Ermisch further argue that women with low earning husbands experience financial strain and increase the likelihood of divorce. Women prefer to marry men with better socioeconomic conditions. Gender income differences perpetuate a conservative pattern of domestic labor division, given that women, on average, earn lower wages than men. However, if women have a higher income and occupational status than their husbands, and husbands are reluctant to accept this development, married couples are likely to experience a decrease in marital satisfaction and increase in the risk of divorce . Thus, this study developed Hypotheses 5: When a wife's income exceeds that of her husband, a couple's marital satisfaction is decreased. --- Effects of Education on Marital Satisfaction In addition, women who have more education and are employed are more resilient to marital disruptions and divorce petitions . According to marriage gradient theory, men with higher education and income can improve couples' martial satisfaction when they hold traditional gender roles . Evaluation of marital quality by wives is positively related to their husbands' education levels because husbands with higher education levels are more egalitarian in gender role attitudes . Thus, this study developed Hypotheses 6: When a wife is more educated than her husband, the couple's martial satisfaction is decreased. --- Effects of Women's Seniority on Marital Satisfaction Few studies have investigated the effects of title and position. However, from the perspective of time allocation, it is assumed that when women have seniority in the occupational market, it will affect the time they allocate to home, leisure, and work activities, increasing family conflicts and indirectly influencing their spouse's marital satisfaction. Thus, this study developed Hypotheses 7: When a wife holds a position of authority in the workplace, a husband's marital satisfaction is decreased. --- Effects of Family's Social Status on Marital Satisfaction Female labor participation depends on the socioeconomic conditions of their family. Women from lower-income families are more likely to participate in the labor market and suffer more from work and family conflicts, which will ultimately affect marital satisfaction . When a husband's income satisfies household needs, women may choose to exit the labor market to parent at home . Thus, this study developed Hypothesis 8: Married individuals from lower socioeconomic levels express lower marital satisfaction. --- Effects of Having a Child on Marital Satisfaction Becker argues that there are mutual relationships among female labor participation rates, fertility rates, and female divorce rates; if couples are highly likely to divorce, they may have no children. Given the lack of childcare services in the market, society has reverted to the traditional roles of women as caregivers, leaving them with the ultimate responsibility . There is clearly a negative correlation in China between the number of underage children and their mothers' potential to participate in the labor market; it is more likely for mothers to exit the labor market when children are under the age of 6 . In addition, Vannoy and Philliber argue that there are discrepancies in how the number of children and their ages affects couples' marital quality evaluations. Ye and Xu further argue in favor of a mutually connected relationship among a family life cycle, children, and marital duration, as children can decrease their parents' marital satisfaction. Mincer and Ogawa and Ermisch utilize the number of children at varying ages as a factor to test the variance of women's divorce risk. Thus, this study developed Hypotheses 9: When wives are employed, an increase in the number of their children correlates with a decrease in couples' marital satisfaction. --- Effects of Kinship Support on Marital Satisfaction Employed Chinese mothers in families of dual-earners may encounter work-to-family conflicts and tend to sacrifice their jobs for the family's sake. However, childcare responsibilities can be offset by kinship support customs, and a couple residing with elder relatives can lighten women's loads and positively mediate marital dissolution . Wu argues that employed women can also deal with domestic work division with elders in extended families. Indeed, Oishi and Oshio posit that there are no differences in the positive effects on female labor participation as a result of co-residing with either the husband or wife's parents. They also indicate the direct effects of co-residence on female labor participation, citing unclear effects on marital quality. Thus, this study developed Hypotheses 10: For wives who are employed and co-reside with their parents aged below 70 years, there is a positive correlation with couples' marital satisfaction, but for wives who are employed and co-residing with parents aged above 70 years, there is a negative correlation. --- MATERIALS AND METHODS --- Methods In this analysis, a binary outcomes model was established: Y = a + bX + e where Y is a binary dependent variable of marital satisfaction; X are the independent variables; a and b are coefficients; and e is the error term. The distribution of dependent variables was uneven and skewed to a positive outcome, which defies the normal distribution prerequisite, and the logit model was used for binary choices. Robust cluster standard errors were applied to control the 26 different regions in the CFPS in 2014. A stability test was applied to further support female labor participation effects on marital satisfaction, and an adjusted dependent variable without a neutral response was chosen, revealing whether a neutral response affects the stability of the outcomes. Indeed, at this time, the distribution of the sample is extremely skewed. --- Data The data used for analysis originated from the CFPS in 2014. China Family Panel Studies funded by Peking University and the National Natural Science Foundation of China, aim to collect and track data, including individuals, families, and regions, to reflect the transition of the Chinese society, economy, population, education, and health. CFPS began in 2010 and is maintained by the Institute of Social Science Survey of Peking University . Whether there are gender differences in marital satisfaction is uncertain. Therefore, the data were first merged with the interviewee's spousal information. There were 33,591 couplecases in the set, including 14,433 male interviewees and 14,538 female interviewees. Although some married couples' information has been displayed twice, with different interviewees, two cases were separately analyzed for each couple. The aims of this analysis were to discuss the relationship between marital quality and female labor participation; hence, cases that were inconsistent with legal regulations of marriage and retirement were discarded. Based on Clause 1047 of the current Civil Law of the People's Republic of China, the legal marriage age for women is 20 years old. The statutory retirement age for women is uniquely differentiated among various firms; it is 55 years for women cadres and the self-employed, 50 years for female workers, and 60 years for senior female experts, while a majority of the women retire at 55 years. Thus, for the purpose of this study, the retirement age was considered to be 55 years. Retired female workers are included with those who are not in the labor market. Cases of cohabitating women were excluded, considering only participants joined in legal marriage. Therefore, after adjustments by female age range and marital status, in sum, the dataset included 18,209 couple-cases, with 9,119 female interviewees and 9,090 male interviewees. In addition, each case includes information from interviewees and their spouses. --- Measures --- Dependent Variable Marital Satisfaction Responses to the marital satisfaction question "how satisfied are you in your marriage" were gathered and ranked accordingly as 1 , 2 , 3 , 4 , and 5 . Responses are skewed to better and utmost satisfaction. Subsequently, responses of no, poor, and neutral satisfaction were merged as negative marital quality evaluation, with an assigned value of null. Next, responses of better and utmost satisfaction were merged as positive marital quality evaluation, with an assigned value of one. Finally, the datasets were divided into two parts based on the gender of the interviewees. In the female dataset, the discussion focused primarily upon how wives' labor participation affects their marital satisfaction. Regarding the male dataset, the primary question considered how wives' labor participation affects husbands' marital satisfaction. --- Alternative Dependent Variable for The Stability Test Adjusted Marital Satisfaction The variable of marital satisfaction was a binary category variable and included the neutral evaluation in the value of null. However, whether the interviewees were satisfied or dissatisfied with their marriage was difficult to present in the neutral evaluation. Therefore, neutral evaluation omitted to test whether holding neutral marital satisfaction affected stability of the outcomes. Adjusted marital satisfaction was still a binary variable ranging from 1 and 2 to the value of null to present negative marital quality evaluation and from 4 and 5 to the value of one to present positive marital quality evaluation. However, the responses in the sample are extremely skewed to positive evaluation. --- Independent Variables Employment This variable is a binary outcome describing the female occupation status. If the value of employment is one, wives are in the labor market. Otherwise, the value is null for those who are job seeking and who are not in the labor market. Stadelmann-Steffen argues that considering women's fulltime employment and part-time employment is essential to assess their working condition and social situation. However, this study did not include part-time employment due to lack of applicable data. --- Work Hours According to a working time regulation of China's Labor Law, adopted in 1995, workers shall work for no more than 8 h a day and no more than 44 h a week. However, Qi and Dong note that overtime work is prevalent. Therefore, as a category variable, three levels of work time ranges were considered: no more than 40 h/week, between 40 and 60 h/week, and more than 60 h/week. --- Types of Work Demands, identity, and stress at work may lead to work and family conflicts and affect personal well-being . Not only the work itself but also the structure and order of the work affect physical and mental health. Occupation sometimes reflects cultural judgements of the ranking and importance of jobs . Indeed, working women are a highly heterogeneous cohort and research should consider the distinctions in female occupational groups diversifying their marital evaluations. First, according to Xie et al. , occupational codes changed from Chinese Standard Classification of Occupations to International Standard Classification of Occupation . Through the process, some occupational codes were missed due to inappropriate match between CSCO and ISCO-88. Second, after the data check of samples in categories of the International Standard Classification of Occupations , the sample of Classification 1 legislators, senior officials, and managers and Classification 2 professionals merged into one category. The sample of Classification 6 craft and related trades workers and Classification 7 plant and machine operator and assemblers merged into one category, being at the same second ISCO skill level. Finally, types of female workers ranked as 0 , 1 , 2 , 3 , 4 , 5 , 6 , and 7 . --- Relative Income According to gradient marriage theory, women prefer to marry up socioeconomically . In addition, marital quality evaluation uses relative income value rather than absolute income value . Angrist and Evans suggest that because some women are outside the labor market, it is difficult to rely only on women's wages for evaluation. Therefore, the subjective incomes of interviewees were evaluated to measure income effects. Responses to the question "what is the level of your personal income in the city where you work" were collected and rated with five rankings from the lowest to the highest. Subsequently, comparisons were made between interviewees' income statuses and those of their spouses. Finally, three levels of the categorical variable were utilized: couple income equivalent, husband income advantage, and wife income advantage. --- Gender Role Attitudes Responses were gathered from four gender attitude statements: "A husband's job is to earn money; a wife's job is to look after the home and family, " "It is more important for a wife to help her husband's career than to pursue her own, " "Wives who have borne children have achieved their personal values, " and "Men ought to perform a share of household work." Responses were rated with five rankings: 1 , 2 , 3 , 4 , and 5 . The former three questions relate to traditional gender role attitudes. DeVellis argues that an alpha value of more than 0.7 denotes a good credential of scales, and a value between 0.60 and 0.70 is acceptable. The value of Cronbach's alpha for the former three questions was 0.6421, which is acceptable. However, if included, the fourth question largely decreases the credential levels. Therefore, the former three questions were used to evaluate the differences in gender role attitudes. Three measures were added to eliminate the dimension by standardizing extreme values. With a baseline value of 0.5, if the standardized values are close to 1, the interviewee's gender role attitude tends to be traditional; otherwise, if close to 0, it tends to be more modern. Interviewees and their spouses were assigned to four categories, including both traditional and modern gender attitudes, or it was recognized if the couple held opposite gender role attitudes. Finally, an intersection variable with gender role attitudes and female labor participation was established, which evaluated how interviewees and their spouses' gender role attitudes affect couples' marital satisfaction separately when the wife is in the labor market. --- Husband's Domestic Work Time The variable from the dataset regarding how husbands spend time on domestic work was selected. Three categories on how the husband's time was spent were used: no participation in domestic work; 1 h or less a day; and more than 1 h a day. These three categories were nearly evenly distributed. --- Education The variable of highest educational qualification has nine educational levels. Considering the different weighting of each level, the study combined illiteracy, no need of schooling, and level of elementary school into less than elementary school level. Further, levels of college, bachelor, master, and Ph.D. belonged to beyond high school levels. Finally, the variable of highest educational qualification was arranged into three categories: less than elementary school level, at middle school, and beyond high school levels. These three categories were equivalent in weights, and each represented nearly one-third of the distribution. Comparisons among couples were then made to develop three categories: couple's education equivalent, husband's education advantage, and wife's education advantage. --- Age Couples' age differences affect marital stability and women's divorce risks . With the traditional age-difference preferences in the marriage market in China, it is socially acceptable to have marital patterns of older husbands with younger wives or minor age differences between elder wives and younger husbands . In this analysis, wives' ages were subtracted from husbands' ages to develop five age-difference-ranges: couple equivalent in age, wives older or younger than husbands within 5-year age differences, and wives older or younger than husbands beyond 5-year age differences. --- Child Previous research has supported that the number of children affects female labor participation and marital quality. In the analysis, the number of children is a category variable from zero to nine children at home. Considering the effects of preschool children, a binary variable was utilized to test whether children under the age of six are living at home. If the response was yes, the value of one was assigned and null otherwise. Finally, there were two intersectional variables of female employment status: number of children with female labor participation status, and existence of preschool children with female labor participation status. These were tested separately to determine how female labor participation under children effect affects couples' marital satisfaction. --- Position of Authority Position of authority is a binary variable; one was assigned for women achieving title/position and null otherwise. --- Co-residence With Elderly Parents Song posits that residing with elders is beneficial to young married wives' labor participation, but the situation changes adversely when the elderly require home support. The analysis presented two binary category variables to clearly show the effects of parents' age. If the younger couples resided with the husbands' or wives' parents aged under 70 years, the binary variable was a positive value; otherwise, it was null. If the younger couples resided with their parents aged over 70 years, the binary variable was one; otherwise, it was null. Female labor participation and co-residence with parents aged either under or over 70 years were intersected to test the effects on marital satisfaction. --- Family Social Status Responses were solicited to the question "how do you measure your family social status in the city where you work" with rankings from 1 , 2 , 3 , and 4 to 5 . Rankings of 1 and 2 were combined as low social status and 4 and 5 combined as high social status. Finally, the variable of family social status has three levels: low, medium, and high social status. --- Urban Based on the dualistic structure system of urban and rural areas, there are clear economic, female labor participation, and marital quality differences within urban and rural areas . Thus, urban is a binary variable when interviewees live in an urban area are assigned a positive value; otherwise, the value is null. --- RESULTS AND CONCLUSIONS Table 1 shows a statistical summary of all variables. To discuss gender differences in marital satisfaction, two sample sets were arranged by gender. The chi-square test outcomes show that marital satisfaction has gender differences. A total of 83.9% of women and 90.3% of men experienced positive marital satisfaction, revealing a skewed distribution of marital satisfaction. After adjustment of marital satisfaction, the distribution of the sample was skewed extremely to positive marital satisfaction. 78.49% of women were in the labor market. Half of women worked in the service and agriculture industries. Nearly 60% of women were not in the labor market or worked no more than 40 h/week, within the labor law work-time regulations. Nearly half the cases were in equal situations in terms of income status, and only a quarter of the cases had women in a higher income status than their counterparts. Regarding gender role attitudes, more than 70% of the women and men held traditional gender roles, with more than 70% of the men sharing domestic work responsibilities at home. Half of the couples shared identical educational levels. In nearly 50% of the couples, the husband was older than the wife with a 5-year age difference. The marriage match patterns of education and age were consistent with social conventions. The average number of children at home consisted of no more than two, and nearly half of the cases had only one child. Considering mothers' working conditions, the average number of children had little effect, which partly supports the negative relationship between female labor participation and fertility; however, there is still little evidence of causality. Few women in the labor market had titles or positions, with half of the cases at medium social levels. About one-fifth of cases co-resided with parents aged below 70 years when the woman was employed; otherwise, only 10% of the couples co-resided with parents aged above 70 years. Couples were distributed equally among urban and rural regions. In sum, women's labor participation and couples' marital satisfaction were independent, even in the adjusted marital satisfaction with a precise level of significance. Table 2 illustrates how female labor participation produces insignificant effects on marital satisfaction. There was an insignificant 16% negative impact of female labor participation on men's marital satisfaction. Women who worked more than 60 h a week experienced a 24% decrease in their marital satisfaction, compared to women who were not in the labor market or worked <40 h. Women insignificantly increased their marital satisfaction within the range of 40-60 h/week. However, men's marital satisfaction increased insignificantly when women worked more than 60 h. When women are in the labor market, couples who hold the same gender attitudes increase their marital satisfaction at a high rate. Indeed, women with modern attitudes increased their marital satisfaction close to 78% more significantly than women with traditional gender attitudes. In addition, men showed positive marital satisfaction with female labor participation regardless of gender attitudes. Only if men are performing domestic chores will female marital satisfaction increase insignificantly. Marital satisfaction of men who devoted time to housework beyond 1 h a day insignificantly decreased by 10%. Compared to equivalent income statuses, marital satisfaction decreased by about 16% for women and 23% for men under the condition that income statuses of women were higher than those of their spouses. Educational differences among couples had negative effects on the marital satisfaction of husbands and wives, especially for men with higher education than their wives. Age matches were diversified with marital satisfaction. Analyses of men were insignificant in terms of age differences. However, women who were older than their spouses by 5 years or less experienced 25% greater marital satisfaction than age equivalent couples. The marital satisfaction of couples was sensitive to the number of children in the marriage. Couples' marital satisfaction decreased by nearly 12% separately for each additional child if women were in the labor market. However, if there were preschool-aged children, women's marital satisfaction increased but there were no differences between spouses. Whether couples had positions of authority had positive but insignificant effects on marital satisfaction. Couples with lower status were more dissatisfied with their marriage. Co-residence with parents for working women had conversely insignificant effects on marital satisfaction, which depended on parents' age. Couples living in urban regions had a nearly 30% higher marital satisfaction value. In Model 2, an adjusted dependent variable was chosen to test the stability of the findings. With omitted neutral responses of marital satisfaction, the distribution of sample was extremely skewed to positive values. Women's labor participation still had no statistical significance for couples' marital satisfaction. Women's response to workloads registered similarly as they are sensitive to working between 40 and 60 h, gaining an increase in 34% marital satisfaction; and working more than 60 h/week, suffering a decrease in 5% marital satisfaction. Men experienced a significantly higher marital satisfaction of 60% when women worked more than 60 h/week, compared to when women worked <40 h or were not in the labor market. Effects on marital satisfaction are still positive if couples hold the same gender attitudes. In a narrowed sample, unemployed women were compared with couples who both hold modern gender role attitudes; women's marital satisfaction increased by 21% and men's marital satisfaction increased by nearly 80%. Men sharing domestic work still accelerates women's marital satisfaction but decreases men's satisfaction when they work more than 1 h a day. Matching relative income still affects marital satisfaction. Couples had lower marital satisfaction when wives' income status exceeded that of their husbands, with a 25% reduction for men. Disparities in educational levels shrank marital satisfaction. Marital satisfaction dramatically decreased when men were <5 years older than their female counterparts. When women were in the labor market, the presence of preschool children increased wives' marital satisfaction. With each additional child, couples' marital satisfaction decreased by 25% for men. In terms of low social status, seniority, and co-residence with parents were mostly the same as in Model 1. Different occupations have implicitly required different working time input and work styles, and have caused subsequent differences in income and social status. In Table 3, when other related variables are controlled, some occupational groups had specific differences on marital satisfaction. Women working as legislators, senior officials, managers, and professionals had significant positive effects on couples' marital satisfaction, with a rise of 62% for women. Women working as clerks have significant negative effects on husbands' marital satisfaction, with a decrease of 40% for men. Women working in services and agriculture, presented in the stability model, decreased their own marital satisfaction nearly 40%. Women's work hours still had same effects on their marital satisfaction, with positive responses between 40 and 60 h but negative responses beyond 60 h. The analysis determines that whether wives participate in the labor market has no effect on their own or their counterparts' marital satisfaction, which contradicts Hypothesis 1. This conclusion follows Vannoy and Philliber , Blair , andHelms et al. , who declare that wives' employment has limited effect on couples' marital satisfaction. Wives who work more than 60 h/week negatively affect their marital satisfaction, which contradicts Hypothesis 4 in terms of workload. This conclusion follows Greenstein and Amato et al. who argue that women's extended hours of employment lead to a decline in their marital quality. The findings in gender role attitude effects are beyond expectations, contradicting Hypothesis 2. First, regardless of the held gender roles, women who are in the labor market have increased couples' marital satisfaction, regardless of insignificant coefficients. Second, couples with the same gender role attitudes have higher marital satisfaction than those with different gender attitudes when women's employment conditions are compared. Indeed, couples with the same modern gender role attitudes rate their marital satisfaction significantly higher than holders of traditional attitudes. Third, women who hold traditional gender role attitudes but are employed have the smallest increase in marital satisfaction. Husbands sharing domestic work at home have insignificant but positive effects on women's marital satisfaction. However, men's longer hours of devotion to housework decreases their marital satisfaction, which partially supports Hypothesis 3. Hypothesis 5 is supported by the findings; wives' income exceeding that of their husbands will significantly decrease couples' marital satisfaction. Age and education matching is still crucial to marital satisfaction. Hypothesis 6 is fully supporteddisparities in educational levels reduce not only wives' but also husbands' marital satisfaction. This conclusion is consistent with the argument by Vannoy and Philliber that wives' evaluation of marital quality is positively related to husbands' educational background. When women are in the labor market, the effects of positions of authority and co-residing with their parents regardless of parents' age are statistically insignificant, which contradicts Hypotheses 7 and 10. Children, as an important factor, have the same effects as found in previous studies, in which one additional child at home significantly decreases couples' marital satisfaction, supporting Hypothesis 9. Regarding Hypothesis 8, lower social status of the family leads to lower marital satisfaction for the couple. --- DISCUSSION Employment effects on marital satisfaction are more significantly related to time scheduling between work and family rather than whether women are in the labor market. As salary earners, Chinese women's dual roles have been widely accepted, demonstrated by institutional support from the period of the planned economy and women's independent labor participation to that of the market economy . Furthermore, parental education is an indirect factor that influences the interviewees' attitude that women's work, educational levels, and mothers' occupation status are beneficial to children's socialization and transmission of values . Therefore, the culture of mothers' participation in the labor market has promoted social acceptance of women's work. However, employed women increasingly encounter work and family conflicts, which may affect couples' marital satisfaction. About 70% of workers have reported work and family conflicts in the US, and many employed women struggle to make the integration between work responsibilities and family needs . Since 2000, women in China who experience work and family conflicts increasingly tend to leave the labor market . China Family Panel Studies data from 2014 indicate that in 2,664 of 3,842 cases, 69% of the women were not in the labor market owing to caregiving issues, including fertility, childcare, and domestic work. Work and family conflicts arise from inequality of social recognition of market work and domestic work, and gender inequality. In public sphere, society regards that the value of market work outweighs the value of domestic work. Indeed, work institutions regard rewarding employees as those who are full-time committed to the jobs without family obligationrelated breaks . Gender inequality implies that women and men unequally share not only house chores and childrearing in domestic work but also responsibilities and rewards in market work . Indeed, Ma and Rizzi argue that while egalitarian attitudes have been fully accepted by women, they are reluctantly adopted by men. Wives who have egalitarian attitudes but deal with unequal domestic work divisions are more likely to report low marital satisfaction . Furthermore, Mennino et al. find negative effects on individual's behaviors and moods when the needs of work and family are competing for personal time, energy, and attention. Cao also delineates characteristics of work and family conflict as time conflict, role conflict, and pressure conflict. Role conflict is due to women's dual or even triple roles as employees, wives, and caregivers, and is often connected with gender role attitudes. Role, time, and pressure conflicts are interconnected. Pressure conflict originates from the role of being a good mother and the financial support of intensive childcare. Hays mentioned intensive mothering and defined good parenting as "childcentered, expert-guided, emotionally absorbing, labor intensive and financially expensive." . Budds found that intensive mothering as a normative standard had been identified among countries like the UK, the US, Australia, and Sweden. Elliott et al. argue that intensive mothering led to the rise of mothers' pressure, regardless of different racial/ ethnic and social-economic mother cohorts. Mothers can easily blame themselves for the problems their children encounter. Intensive mothering is common in China. In addition, there is a tendency to criticize mothers prioritizing work over motherhood. Cui argues that ambitious women are socially accepted in the workplace but are regarded as irresponsible in performing family duties at home. Almost 70% of women are employed, and many women experience role conflict between being a good mother and an employee . With the mutual effects of the onechild policy and the development of market economy, the fertility rate and the number of children decreased, and simultaneously, accumulated resources have centered on investment in children, which finally brings about child supremacy . Based on the China Family Panel Study in 2014, Ma estimated that direct care costs for a child from birth to 17 years of age are 191,000 yuan on average, 273,200 yuan in urban areas, and 143,400 yuan in rural areas. Indeed, the cost of raising children in low-income families is significant. Hui further analyzed direct economic costs from preschool-age children, showing that the annual average cost is 6,561 yuan, 10,297 yuan in urban areas, and 5,945 yuan in rural areas. Therefore, female labor participation is required to support the extensive costs of caring for children. Consequently, time conflict reveals that married couples have allocated most of their time to work and children, leaving a shortage of time to devote to themselves and each other. Previous research has mentioned effects of part-time work, marital duration, and types of marriage on marital satisfaction. Due to insufficient applicable samples, this study did not cover them. In addition, the dependent variable in the analysis is marital satisfaction, which is a one-way measure of marital quality. With the limitation of the dataset, marital satisfaction is the only subjective evaluation of marriage quality. Therefore, acquiring access to more characteristics of marital quality could further provide more intensive research on effects. However, evaluations of marriage quality cannot directly determine couples' marital stability. In the consecutive research of CFPS in 2016, no more than 20 cases resulted in divorce, which reveals that marriages with low marital satisfaction can endure. Xu further argues that although some interviewees admitted that their marriage could easily dissolve, marriage in China is still highly cohesive and stable. Jiang and Dai further argue that creating a much more flexible work form is an important policy to promote female labor participation. Further research is required in the context of COVID-19 and to investigate the effects on marital quality when more women choose to work from home. As Platte argued, every time a new revision to the Marriage Law is enacted in China, it promotes a sudden increase in the divorce rate. After the enforcement of the Civil Law, changes in marital dissolution and how the new law aids individuals to meet the requirements of divorce should be researched. --- DATA AVAILABILITY STATEMENT Publicly available datasets were analyzed in this study. This data can be found here: China Family Panel Studies, Peking University Open Research Data at doi: 10.18170/DVN/45LCSO. --- --- 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.
While China has decreasing female labor participation and increasing marital instability, compared to the rest of the world, its female labor participation rate is higher on average. The effect of female labor force status on couples' marital satisfaction, as one of the main factors for evaluating marital quality, has been separately discussed, including extensive margins considering whether women are in the labor market and intensive margins on women working hours per week. This study analyzed data from the 2014 China Family Panel Studies (CFPS) using a binary logit model and a stability test. Results showed that the work hours, rather than the occupational status, of women affect marital satisfaction. In addition, regardless of the gender role attitudes held by the couple, marital satisfaction increases when women are in the labor market. This study has retroactively reviewed the effects of women working outside the home on marital quality. The dual roles of Chinese women, as both employee and homemaker, have been socially accepted. However, the requirements of maintaining multiple roles often contradict and present conflicts among the roles, time, and pressure, in the long run, giving rise to marital dissatisfaction.
past decade; more than 11 million Americans provide unpaid care as of 2022 . The impact of caregiving is immense; caregivers risk having chronic health issues, poor emotional well-being, and physiological changes . Respite care provides a temporary break for the caregiver, but is often underutilized . Research has found that the responsibilities of caregiving for a PWD, specifically the mental load, is a 24-hour, 7-day position that leaves little room for rest . However, while there are several definitions of what rest and respite is in the gerontological literature , not much is known on the experiences and achievement of rest by caregivers of PWD. This study explored the concept of rest to caregivers of PWD by using phenomenological interviews to understand the meanings attributed to it. Findings indicated three superordinate themes: "roadblocks", "the actuality", and "the ideal", as well as subsequent subthemes. --- SESSION 2080 Abstract citation ID: igad104.0469 --- ADVANCING AGE INCLUSIVITY IN HIGHER EDUCATION: INTERGENERATIONAL EXCHANGE AS A PATHWAY TO CAREER READINESS Chair: Joann Montepare Co-Chair: Kimberly Farah Discussant: Lisa Borrero Higher education is becoming more age-inclusive on several fronts and age-friendly teaching and learning strategies are being used in new and novel ways to support a variety of students' educational outcomes. In this AFU-ILRCE collaborative symposium, presenters will discuss ways that intergenerational exchange in the classroom and beyond can help to prepare students for entry into the workforce. To begin, Montepare, Farah, and Frazier will give an overview of the Age-Friendly University initiative and discuss how older adults can serve as teaching allies in careerfocused classroom activities such as serving as job recruiters in mock interviews. Graf and Terhune will share reflections from focus group data on intergenerational exchanges in the workplace conducted with working and recently retired adults 60+ years of age. They will highlight the utility of such perspectives for informing career training programs for students regardless of major or career path. Mastel-Smith, Kimzey, and Garner will describe Dementia Bootcamp, an online program for high school students that utilized didactic information, experiential activities, presentations by people with dementia, and volunteering at a dementia day program. Focus group findings and how the program has been integrated into a health sciences curriculum also will be presented. Ghazi Workforce diversity can be a major asset for personal, interpersonal, and economic development. Age diversity is prevalent with five generations currently represented in the workforce. Intergenerational tension is common, however, largely fueled by stereotypes centered on age and generation that can infiltrate all workplace processes. Working from the Age-Friendly University framework, our aim was to gather qualitative data to inform the development of a training program for college students, pairing information on age-related bias with opportunities for meaningful intergenerational exchange to mimic workplace interactions. We hosted three community-based focus groups with adults ranging from 60-69 years of age who were either currently employed or recently retired to discuss their intergenerational interactions in the workplace. Participants had an average of 41.06 years of work experience and worked across multiple industries, most commonly administrative work, food services, government, and healthcare. The most common theme reported was the dismissal of participants' work experience by their younger colleagues, which some equated to a lack of respect due to their age, and others painted as a breakdown in communication. Technology was highlighted as exasperating intergenerational tensions. Participants also reported that younger colleagues often approached them for general life advice, which helped to reduce tensions. The willingness to see the value of older adults' wisdom in general, but not specific to the work at hand, has implications for the content and structure of future career-readiness training programs. Recommendations for enhancing positive intergenerational exchanges and reducing generational tensions within the workplace will be discussed. Caring for people with dementia requires specialized competencies. Previous education programs had a positive effect on college students' dementia knowledge, communication skills, empathy for and attitudes towards people with dementia. To prepare high school students to care for people with dementia -whether it be in a professional or personal capacity -a six session online Dementia Bootcamp was created. Topics included dementia overview, prevention, symptoms, and a framework for understanding them, communication, family support, and evaluation. Information was delivered via short didactic instruction, presentations by people with dementia, and experiential activities such as a virtual dementia simulation. Students met with a mentor, a person with dementia, or volunteered at a dementia day program. Parental consent and student assent were obtained for six students who participated in a focus group. The focus group was audio recorded and an interview schedule was used to understand what students learned, their response to online delivery, and recommendations for future offerings. Data was transcribed and verified, coded for categories and themes developed. Increased dementia awareness and knowledge, confidence in the ability to communicate with someone with dementia, how to prevent dementia, improved cognitive empathy and empathic imagination, and reduced stigma were reported. Online delivery was well received; students recommended longer sessions, more engagement with content and each other, and more information about how dementia affects the brain. The program has been integrated into a high-school health sciences curriculum. We present a new experiential learning activity for graduate students in two core courses in Speech-Language Pathology. Speech-Language Pathology is a healthcare profession that provides care to people of all ages, including older adults with language, communication, and cognitive disorders. Students typically find these course contents heavy and have limited opportunity to practice the required skills for their future profession. In this multi-faceted program, we provide cognitive
In the US, caregiver burnout has significant mental and physical ramifications for an estimated 40 million unpaid caregivers. In addition to higher risks of depression, fatigue, and anxiety, caregivers are often squeezed in the already tenuous balance between work and life. This study seeks to assess whether and to what extent the mental health consequences of caregiver work strain is ameliorated by the presence of additional (informal) family caregivers and formal service use. This study utilizes data provided by the National Study of Caregiving (NSOC) data which is linked with care-recipient information from Health and Aging Trends Study (NHATS) data. We analyze mental health outcomes for caregivers who were present in years 2015 and 2017 (N = 281) using lagged linear regression techniques. We estimate associations of work-strain with mental health issues as well as the moderating effects of informal support (the number of additional caregivers) and utilization of formal support (such as paid service support, formal training, and Medicare funding). Preliminary analyses indicate that the additional informal support mitigates the effect of work strain on mental health. However, formal support corresponds with positive mental health outcomes in the absence of work strain and poorer mental health outcomes when the caregiver experiences work strain. One possible explanation is that formal support is more likely to be used when caregiver burden and isolation is higher, highlighting the importance of timing in service utilization as well as the importance of social and informal resources for employed caregivers.
1.INTRODUCTION Gender development and planning in urban areas is a crucial approach that seeks to integrate gender considerations into the process of development and urban planning. It recognizes that the experiences and opportunities of women and men in cities are significantly influenced by gender roles and inequalities. This approach aims to ensure that urban policies, programs, and projects address these disparities and promote gender equality. It encompasses aspects such as gender mainstreaming, women's empowerment, safety and security, inclusive participation, access to services, gender-responsive budgeting, and data collection and analysis. By integrating gender perspectives into urban planning, it aspires to create more inclusive, equitable, and sustainable urban environments where the needs and aspirations of all residents, regardless of gender, are considered. --- GENDER: UNDERSTANDING ITS MULTIFACETED DIMENSIONS Gender refers to socially constructed roles, behaviors, and identities associated with being male or female. It goes beyond biological distinctions and encompasses how societies perceive and shape the roles of individuals based on their sex. Traditional development approaches treated women's issues separately, aiming to integrate them into existing processes. However, addressing gender disparities requires tackling the subordinate status of women relative to men. Achieving empowerment involves promoting gender equality and equity, challenging societal norms, and transforming structures that perpetuate gender-based discrimination. It's not just about women but the complex interplay of gender relationships within a society. --- Understanding Gender Roles in Society In society, men and women fulfill distinct roles based on their positions within the household and their control over resources. These roles can be categorized as follows: 2.1.1 Productive Role: Both men and women engage in activities with exchange or use value, contributing to income generation, whether through market production or subsistence production. --- Reproductive Role: Women primarily bear the responsibilities of childbearing, child-rearing, and maintaining the present workforce, which is essential for future labor force reproduction. --- Community Management Role: Women extend their reproductive role by ensuring the provision of resources at the community level. This often involves unpaid work for collective consumption. --- Community Politics Role: Men typically take on roles in community-level organization and formal politics, often compensated directly or indirectly through status or power. It's crucial to recognize that women bear a significant burden, often working longer hours than men, particularly in the reproductive and community management roles. Balancing and valuing these roles is essential for gender equality. --- Gender-Specific Needs: Practical and Strategic Distinctions Gender plays a pivotal role in determining unique needs for both women and men due to their distinct roles and the prevailing gender hierarchy. These needs can be categorized into two main types: --- Practical Gender Needs: Practical gender needs are those that women identify within their socially accepted roles. These needs are often of a practical nature and revolve around addressing deficiencies in living conditions. Examples include access to clean water, healthcare services, and employment opportunities. --- Strategic Gender Needs: On the other hand, strategic gender needs are identified by women in response to their subordinate position in society. These needs are aimed at achieving greater gender equality and challenging existing gender roles. Examples of strategic gender needs encompass legal rights, addressing domestic violence, and advocating for equal wages. --- Caroline Moser has analyzed how state interventions recognize the different roles played by women as shown in --- Evolution of Gender Development In the early 1970s, the 'women in development' approach emerged, primarily characterized by income-generating projects for women. However, it failed to address the root causes of gender inequality and tended to treat women as passive recipients of development assistance rather than active agents in shaping their own economic, social, political, and cultural realities. A new approach, known as gender development, shifted the focus from merely providing equal treatment to ensuring equal outcomes. It sought to mainstream gender considerations into development planning at all levels and across all sectors, addressing not only the differences between men and women but also the inequalities that stemmed from these differences. In 1975, the United Nations declared the period from 1975 to 1985 as the UN Decade for Women, leading to the establishment of national commissions for women in many countries. Human development, defined as increasing capabilities and expanding choices for all individuals, was recognized as inherently unjust and discriminatory if it excluded women from its benefits. As stated in the 1995 Human Development Report, "Human development, if not engendered, is endangered." The 1995 report placed a significant emphasis on incorporating gender considerations into the development process and introduced two measures to analyze the extent of gender disparity in basic human capabilities. --- Gender Development Index The Gender Development Index is a composite index designed to assess the average achievement in three fundamental dimensions included in the Human Development Index : leading a long and healthy life, acquiring knowledge, and attaining a decent standard of living. The GDI is specifically adjusted to consider and account for gender inequalities that exist between men and women. Its primary focus is on addressing gender-related disparities within these dimensions, emphasizing differences between men and women's achievements and their impact on overall human development. By adjusting HDI values with genderspecific data, calculating female-to-male ratios, and generating a composite index, the GDI identifies gender inequalities, facilitating informed policy efforts to promote gender equality and women's empowerment across various regions and aspects of society. --- Gender empowerment measure The Gender Empowerment Measure shown in Figure-2, composite index designed to assess gender inequality across three fundamental dimensions of empowerment: economic participation and decision-making, political participation and decision-making, and control over economic resources. GEM provides a comprehensive view of the extent to which women have access to and influence in economic and political spheres, as well as their ability to control resources. By quantifying these gender disparities, GEM aids in identifying areas where women's empowerment may be lacking and informs policy initiatives aimed at promoting gender equality and women's active participation in decision-making processes and economic opportunities. The Gender Development Index and Gender Empowerment Measure are vital indicators used to evaluate gender equity in a country's development. The GDI assesses disparities in basic human development dimensions, including health, education, and standard of living, revealing whether both genders have equal access and achievements. A GDI value of 1 signifies perfect gender equality. In contrast, the GEM examines gender disparities in economic and political participation and decision-making, providing insights into women's empowerment. These indicators, together, offer a comprehensive assessment of gender equity, aiding policymakers in identifying disparities and formulating strategies to advance gender equality and women's empowerment across various aspects of society. --- Gender Planning Gender planning aims to liberate women from their subordinate roles and promote equality, equity, and empowerment. Effective gender planning requires a comprehensive gender analysis that delves into the underlying causes of gender-based inequalities. The process of gender planning comprises three interconnected stages: gender policy development, gender planning, and the actual implementation of policies. The methodology of gender planning encompasses the specific methods and approaches used to achieve these goals. It is crucial to avoid gender-blind policy formulation and instead identify constraints that may hinder the translation of policies into actionable practices, as this is vital for the success of gender-focused policies. Gender sensitizing is essential for incorporating gender considerations into the planning process, and it can be achieved through various means: --- Development Planning and Macroeconomic Policy: Traditional development planning often prioritizes efficiency and economic growth over social development, particularly women's advancement. To address this, it is crucial to set women's economic empowerment as a macroeconomic goal. This involves recognizing the value of women's work, utilizing gender-disaggregated data, and analyzing the impact of economic policies and structural adjustments on women. Institutional Concerns: Development planning typically focuses on specific sectors, overlooking cross-cutting gender needs and concerns. Integrating gender needs through effective coordination of planning cycles and establishing structures for gender equality advancement is crucial. Promoting gender policy and planning training within planning agencies, recruiting both women and men into planning roles, ensuring transparent and accessible governance and planning systems, and involving participants in monitoring and evaluation are important actions. Public and Private Spheres: Gender improvement efforts often target the public sphere, leaving gender relations within households largely unchanged. Addressing power dynamics in the private sphere is essential for women to effectively benefit from changes in the public sphere. This includes promoting gender-aware curricula in education at all levels and challenging gender stereotypes across sectors. Gender planning should not be viewed as a separate process but as an integral part of mainstream development planning. It should transform mainstream planning to meet the needs of women and marginalized populations while promoting economic, social, and environmental sustainability. Economic Empowerment: Women's economic empowerment should be integrated into macroeconomic goals, addressing gender disparities in unpaid domestic work and wage employment. It's essential to review economic and social wages to ensure gender equity and examine the impact of globalization on labor markets to prevent the exploitation of women. Valuing Women's Work: Acknowledging the value of women's contributions to social reproduction, even when challenging to quantify, is crucial. Supporting women with better access to resources, services, and benefits can relieve them of unequal burdens and promote their economic and social well-being. --- 2.5 The Indian scenario . India aims to surpass China as the most populous nation and become an economic superpower in the next five years. However, gender equality is crucial for this goal. Despite progress in education, health, and political leadership for women, disparities persist. The latest Gender Gap Report predicts it will take 217 years to close the gender gap at the current rate. Women are paid less than men, and board-level gender diversity remains suboptimal in India, underscoring the need for comprehensive women's development for national progress. , India's ranking on the 2021/22 Human Development Index is 132 out of 191 countries and territories. This ranking reflects a concerning trend of declining human development not only in India but also globally. In both 2020 and 2021, human development, which measures health, education, and average income, has declined, reversing five years of progress. This decline is primarily attributed to a global decrease in life expectancy, dropping from 72.8 years in 2019 to 71.4 years in 2021. It marks the first time in 32 years that human development across the world has stalled, emphasizing the need for concerted efforts to address these challenges and uphold the Sustainable Development Goals. --- Empowering Women in Asian Politics Over the last decade, Asia has seen a significant increase in women's representation in politics as shown in Figure -3, with the Philippines and Nepal leading the way at 30%. However, India lags behind with only 12% female parliamentarians, despite a long-pending bill seeking to raise this to 33%. Meanwhile, countries like Cambodia have made visible strides, going from no women in politics to 20% representation. Japan recently passed a law encouraging gender parity in political candidate selection. The data underscores the need for greater emphasis on promoting women's participation in politics across Asia, especially in countries like India where progress has been slow. --- CONCLUSIONS Gender development and planning in urban areas aim to address gender disparities in urban environments. It integrates gender perspectives into urban policies and projects, promoting inclusion, equity, and sustainability. Gender roles, such as productive, reproductive, community management, and community politics roles, significantly affect the lives of men and women. Practical gender needs and strategic gender needs must both be considered. In Asia, progress varies, with countries like the Philippines and Nepal leading in women's political representation, while India lags behind. The integration of gender considerations is crucial for creating more equitable urban environments, but challenges persist in achieving gender equality.
This comprehensive document explores the critical intersection of gender, development, and urban planning, emphasizing the need to integrate gender considerations into the development of urban areas. It recognizes that gender roles and inequalities significantly impact the lives of men and women in cities and aims to ensure that urban policies and projects address these disparities, fostering gender equality, inclusion, and sustainability. The document delves into multifaceted dimensions of gender, distinguishing between practical and strategic gender needs. It traces the evolution of gender development, highlighting the importance of mainstreaming gender considerations into development planning. Key indicators like the Gender Development Index (GDI) and Gender Empowerment Measure (GEM) are discussed as essential tools for assessing gender equity. The report also examines gender planning, emphasizing the need for gender-sensitive policies and addressing institutional concerns. It spotlights the Indian scenario, emphasizing the imperative of gender equality for national progress. Additionally, it discusses the increasing representation of women in Asian politics and the challenges they face. In conclusion, while progress is evident, challenges remain in achieving gender equality in urban environments. This document serves as a valuable resource for policymakers and stakeholders committed to creating more equitable and inclusive cities.
The extant literature suggests two differing theories of how minority children navigate the race talk dilemma. One possibility is that they disregard societal colorblind norms and instead follow minority group-specific norms that encourage discussion of race. For racial minority children, discussing race often promotes positive racial identity development . Consistent with this, previous work demonstrates that racial minority parents openly discuss race with their children and do so far more frequently than White parents . If minority children adopt group-specific norms consistent with this parental socialization, they should be comfortable talking openly about race. Research with adults supports the notion that Whites and racial minorities adhere to different group-specific race norms, as reflected in their differential comfort with discussing race . The alternative possibility is that pressures to adhere to colorblind norms override talk of race. Several lines of research support this account. First, colorblind norms have become pervasive in American society, extending beyond everyday social interactions to the development of educational curricula and legal and societal discourse . Second, among White adults, mere mention of race has become synonymous with racial prejudice . For instance, previous research has found that at 9-10-years, White children begin avoiding talk of race and adhering to norms proscribing prejudice . Thus, if racial minority children similarly become aware that colorblindness is considered normatively appropriate, they too may avoid talk of race. This outcome may be particularly likely in U.S. educational contexts because teachers and school administrators-key socialization agents for children outside the home-frequently endorse colorblindness . Schools communicate norms regarding race through informal and institutional mechanisms and are powerful determinants of minority children's development and self-esteem . Together, this work suggests schools play an especially important role in reinforcing race norms for majority and minority children alike. --- Present Research The race talk dilemma for racial minority children presents a unique theoretical opportunity to test the primacy of two social processes in conflict: one supporting social identity development and another supporting adherence to societal norms. To dissociate these competing processes, we compare how a socioeconomically diverse sample of 9-12-yearold Latino, Asian, Black, and White children complete a photo identification task in which acknowledging racial difference is advantageous.1 Children completed this task with experimenters who mirrored the gender and racial demographics of the teachers in their schools. We also examine potential antecedents and consequences of racial majority and minority children's decisions to talk about race. We assess whether children's perceptions of their parents', peers', and teachers' approaches to race predict their own likelihood of acknowledging race and their concerns about appearing inappropriate, and whether these associations are similar or different across the sampled racial groups. Finally, we code videos of children completing the photo task to measure both their performance on the task and discomfort in their nonverbal behavior. --- Method Participants We recruited 111 9-12-year-old children from urban public elementary schools that serve low-income and middle-class families near San Francisco, California. To increase the generalizability of our results, we sampled across eight different teachers' classrooms and from three schools that differed in the racial composition of their students. All of the schools were relatively integrated, but their racial composition was confounded with socioeconomic status such that schools with fewer White children were also less socioeconomically advantaged. Characteristics of each school appear in Table 1. Three students' video data were lost due to researcher error. The final sample included 41 Latino, 21 Asian, 19 Black, and 27 White children. Children were not compensated for participating. --- Materials and Procedure We informed parents of the study and obtained consent via letters sent home by school administrators. Individual children completed a photo identification task that gauges children's willingness to talk about race . We videorecorded them completing this task in a quiet location, separate from other children, with one of four experimenters . Children sat in front of an array of 40 4×6-inch photographs of people arranged in 4 rows of 10. The experimenter told children that the goal of the task was to ask as few yes/no questions as possible to narrow the array to a single photo held by the experimenter. This performance goal was explicitly stated three times during the course of the instructions. People in the array differed in many respects, but they varied systematically on two orthogonal dimensions: gender and race . Asking questions about gender or race were thus particularly beneficial for performance as they would eliminate half of the photos. A new experimenter completed the remainder of the study with the child. First, this experimenter asked the child whether they noticed that White and Black people were displayed in the photos. Next, the experimenter asked the child to discuss why they did or did not use race as a question, and video-recorded their response. Children then completed a series of items regarding their impressions of how their parents, peers, and teachers approach issues of race. Finally, children self-reported their racial or ethnic background. --- Measures Mention of race and gender-We examined the frequency with which Latino, Asian, Black, and White children asked questions about race as compared to gender. Acknowledgement of gender is a reasonable baseline of comparison to acknowledgment of race for theoretical, empirical, and methodological reasons. First, race and gender are two of the most relevant social identities for children . Second, people perceive both racial and gender differences almost instantaneously . Third, asking about the race or gender of the target photo carries equal diagnostic value in the task. Accordingly, we assessed whether children mentioned race , based on use of the terms Black, African American, White, or Caucasian, and gender , based on use of the terms girl, boy, male, female, man, or woman. We also asked children whether they noticed the photos differed by race , which served as a second baseline of comparison to their acknowledgment of race in the task. Performance-We counted the number of questions participants used to identify the target photo. Asking fewer questions indicated better performance. Nonverbal comfort-Six judges, blind to hypotheses, independently viewed silent videos of children's behavior during the photo task. They evaluated children's nonverbal comfort: the extent to which they appeared uncomfortable , engaged, friendly, to be smiling, and to be making eye-contact using a 1 to 9 response scale. All six judges first coded a subset of 20 videos to achieve inter-rater reliability . 2 The remaining videos were then divided evenly such that two judges rated each remaining video. We averaged ratings across all items to form an index of nonverbal comfort . Social appropriateness concerns-Four judges independently coded videos of children explaining why they did or did not use race as a question in the task. Previous research indicates people typically provide either task-or social-focused reasoning for why they did or did not use race . Using this past work to develop our coding scheme, judges rated the content of children's rationale based on the degree to which it conveyed a concern for task performance and a concern for social appropriateness on 1 to 7 response scales. All four judges first coded a subset of 15 videos to achieve inter-rater reliability and the remaining videos were evenly split such that two judges coded each remaining video. Consistent with past work, ratings of the two items were highly negatively correlated . We thus reverse-scored the task performance concern item and averaged it with the social appropriateness concern item to create an index , with higher scores indicating greater concern for social appropriateness. To provide a more detailed picture of children's rationale, two judges, blind to hypotheses, also coded children's responses for several types of social-and task-focused reasoning . A third judge resolved all discrepancies. For social-focused concerns, we coded two general concerns: self-focused concerns and other-focused concerns ; and two specific concerns: mentioned inappropriate, rude, offensive and mentioned racist, prejudice . For task-focused concerns, we coded one general concern: good strategy and two specific concerns: other questions were better , and racial/ethnic differences are apparent . Table 2 presents proportions of children from each racial background that expressed a particular type of reasoning separated by whether they mentioned race. Perceptions of parent, peer, and teacher approaches to race-We measured perceived norms using items that assessed whether children perceived that their parents, peers, and teachers endorsed a colorblind approach to race. Children indicated their agreement with four items, such as "My [parents/peers/teachers] are uncomfortable talking about race", "My [parents/peers/teachers] bring up race in their everyday conversations" on a 1 to 6 response scale. Children completed the same four items in reference to their parents , peers (α =. 72), and teachers , with higher scores indicating higher perceived endorsement of colorblindness. --- Results --- Analytic Approach To account for the nested nature of our data , all data was analyzed with multilevel linear or logistic models using MIXED or GENLINMIXED with school as a random intercept in SPSS 22 . We met requirements for logistic regression in the primary analyses presented below . All continuous predictors were centered . In addition to the main predictor in each model, participant race , and interactions with participant race were always included. We only report interactions when they contribute unique variance to the model. Initial models were run to examine experimenter differences, age, and school diversity . None of these variables contributed significantly, so they were removed from the final models. Correlations and descriptive statistics for measures are presented in Tables 3 and4. --- Who Talks about Race? We conducted a multilevel logistic model with repeated measures to investigate the frequency with which children mentioned race versus gender. Overall, children were significantly less likely to talk about race compared to gender, B = -1.41, SE =.34, p < .001, OR =.25, 95% CI [.13, .48]. Critically, this difference did not interact with participant race: racial minority children were just as reluctant to talk about race as White children. Overall, the odds of children mentioning race was four times lower than mentioning gender , despite the fact that both questions were equally useful for completing the task. It was also clear that children noticed race: Over 97% reported noticing that the photos varied by race in the post-task measures. --- Performance The performance measure reflected ordinal count data with a restricted range and a nonnormal distribution, thus we conducted a multilevel multinomial logistic regression to examine the effect of mention of race on number of questions asked. Those who avoided race, performed worse on the task, B =.43, SE =.07, p < .001, OR =1.54, 95% CI [1.35,1.78]. The interaction with race was not significant, although Asian, Black and Latino children all performed worse than White children . --- Nonverbal Comfort The avoidance of race was also associated with interpersonal costs: regressing children's nonverbal comfort during the task on participant race and mention of race , revealed that those who did not mention race appeared less comfortable, B = .79, SE =.22, p = .001. The interaction with race was not significant, indicating that children's avoidance of race was associated with greater display of nonverbal discomfort, irrespective of their racial background. --- Perceptions of Parent, Peer, and Teacher Approaches to Race We examined whether children's decision to talk about race in the experimental task was linked to their impressions of how three potential social referents handle race: parent, peers, and teachers. To do so, we regressed mention of race onto participant race and perceptions of others' approaches to race. A significant negative relation between children's perceptions of their parents', B = -.65, SE =.31, p =.040, OR =.52, 95% CI [.28, .97], and teachers', B = -.1.03, SE =.32, p =.002, OR =.36, 95% CI [.19, .67], approaches to race emerged, such that children's impression that these adults avoid race independently predicted their own avoidance of race in the photo task . However, children's perceptions of their peers' approaches to race were not predictive of their behavior controlling for children's perceptions of adults' approaches to race, B =.56, SE =.33. p =.09. The lack of a significant interaction with race indicates that teachers and parents were important social referents for all children. --- Why Do Perceptions of Parent and Teacher Approaches to Race Influence Children? If children are indeed adhering to colorblind norms, concerns about appearing socially appropriate may mediate the relation between perceptions of parent and teacher approaches to race and children's mention of race. That is, these social referents may establish the standard for what is and is not considered appropriate in this context, which may explain children's reluctance to mention race. As indicated by the analysis above, Latino, Asian, Black and White children's impressions of parent and teacher approaches to race predicted their own avoidance, but we expected the mechanism explaining how these adults influence children to differ for majority and minority children. Specifically, because social appropriateness concerns tend to be more central to majority parents' racial socialization approach, we expected social appropriateness concerns to better explain parents' influence on White children's mention of race. Importantly, however, because teachers in our sample are predominantly White, but their classrooms are comprised of both majority and minority children, we expected social appropriateness concerns to mediate the effect of teachers' influence on all children's mention of race. We used Hayes's PROCESS algorithm to test two moderated mediation models , controlling for school, with racial minority status as the moderator and social appropriateness concerns as the mediator. We met criteria to use a fixed effects approach to clustering and conducted this analyses at Level 1 . The indirect effect of parent approaches on mentioning race was moderated by racial majority/minority status, B = 1.12, SE =.43, 95% CI [.33, 1.98]. As expected, social appropriateness concerns mediated the effect of parent approaches on mentioning race for White , but not racial minority children . However, the indirect effect of teacher approaches on mentioning race was not moderated by racial majority/minority status, B =.47, SE =.38, 95% 1.26]; social appropriateness concerns mediated the effect of teacher approaches on mentioning race for both White and minority children. Thus, when it comes to talking about race, teachers may be a particularly important, shared social referent defining what behavior is appropriate for children from a diverse range of backgrounds. --- Discussion For racial minority children in contemporary society, there is considerable tension between two basic social processes: social identity development and social norm adherence. Social identity development relies on recognizing and valuing their racial group membership, yet societal norms dictate that talk of race is taboo. Faced with this race talk dilemma, our results indicate that racial minority children, like White children, adhere to societal colorblind norms. Remarkably, minority children were just as likely as White children to equate mention of race with prejudice -stating, for example, I didn't want to be racist-as an explanation for why they avoided acknowledging race . Not only did children avoid acknowledging race, they did so at the expense of their performance on and comfort with the task. While all children who avoided race incurred these costs, racial minority children performed worse than White children regardless of whether they avoided race. While speculative, their worse performance on the task may indicate their attention was directed elsewhere as they negotiated the tension between their racial identity and societal norms. In sum, despite the benefits of acknowledging race for minority children's identity development, societal colorblindness norms appear to prevail, at least in the present educational context where children likely feel particularly accountable to adult norms. It is possible minority children would talk more openly about race in contexts where norms associated with their peers are most salient . Future research should further develop a framework for understanding when groupspecific versus societal norms take precedence in influencing children's intergroup behavior. Consistent with past research our results suggest that White and racial minority children receive different socialization messages from their parents. Although both perceived parental and teacher approaches to race relate to children's mention of race, there is important variability in who elicits concerns about appearing socially appropriate. Perceived parental approaches to race predict social appropriateness concerns among White, but not racial minority, children. However, perceived teacher approaches to race predict both White and racial minority children's social appropriateness concerns and, ultimately, whether they talk about race. This finding suggests that teachers may be especially influential social referents because they are in a position to define race norms among children from a diverse range of racial backgrounds. Given that the majority of pre-K-12 teachers are White , it is not surprising they may reinforce the notion that colorblindness is tantamount to social appropriateness or cultural sensitivity. The current work underscores the importance of examining how schools and other social institutions communicate race norms and recognizing sources of racial socialization beyond parents and peers . This research makes a number of important theoretical contributions. First, given that racial minorities have been largely absent from empirical work examining how social norms influence intergroup behavior and attitudes, the current investigation helps illuminate whether these processes generalize beyond a White middle-class population. This work also underscores the importance of examining the interplay of social identity processes and norms at multiple levels . This interplay is easily overlooked because social identity processes and norms typically do not conflict for White individuals. Yet it is in circumstances where social identity processes and norms do collide-as they do for racial minorities-that we obtain a more theoretically rich understanding of the determinants of intergroup behavior . Rather than indicating that racial minority children openly embrace a colorblind ideology, we suspect our findings indicate that they are aware that others support colorblindness as an appropriate response to race. Avoidance of race in mainstream contexts may thus represent a reactive coping response or a form of "social acumen," where minority children understand and adapt to the preferred norms in their school context, even if they differ from their own views . This sort of adaption to mainstream norms is consistent with code-switching and parental socialization that helps minority children negotiate a predominantly White society . Even if it is the case that racial minorities openly talk about race in other settings, colorblindness is likely to perpetuate as White classmates look to racial minorities to infer what is appropriate when it comes to race . It is troubling that pressures to adhere to colorblind norms override talk of race, even among racial minority children. Research with adults has documented the potential for colorblindness to facilitate the expression of racial bias and negative affect in intergroup interaction and to perpetuate group-based inequities . Moreover, research with older adolescent and college samples has found that a "race doesn't matter" socialization message can interfere with positive racial identity development among Black students . Our results underscore the strength of colorblind norms in schools and highlight the need for future research to consider their impact on both majority and minority children's social development. They also illuminate a fundamental challenge facing society: issues of race continue to be a source of controversy and contention in American society, from education and business to policing and the law, yet it remains unclear how these issues can be resolved, much less articulated, if no one is willing to acknowledge race. Wong CA, Eccles JS, Sameroff A. The influence of ethnic discrimination and ethnic identification on African American adolescents' school and socioemotional adjustment. Journal of Personality. 2003;71:119771: -123.10.111171: /1467-6494.7106012 [PubMed: 14633063] -6494.7106012 [PubMed: 14633063] Figure 1. Percentage of Latino, Asian, Black, and White children who mentioned race as compared with a) gender and b) whether they self-reported noticing race. Error bars denote SE. .39 .38 .37 .44 .40 .61 .62 .63 .56 .60 Mentioned Gender 0-1 .87 .88 .86 .67 .81 .68 .69 .67 .73 .69 Noticed Race 0-1 .94 1.0 1.0 1.0 .98 1.0 .92 1.0 .93 .97 Performance 3-12 7.5 7.1 6.7 6.9 7.1 7.7 7.6 7.8 7.3 7.6 Nonverbal Comfort 2.5-8.8 6.4 6.9 5.5 4.9 5.9 5.6 5.3 4.5 5.6 5.3 (1.
Racial minorities face a unique "race talk" dilemma in contemporary American society: their racial background is often integral to their identity and how others perceive them, yet talk of race is taboo. This dilemma highlights the conflict between two fundamental social processes: social identity development and social norm adherence. To examine how, and with what costs, this dilemma is resolved, 9-12-year-old Latino, Asian, Black, and White children (n=108) completed a photo identification task in which acknowledging racial difference is beneficial to performance. Results indicate minority children are just as likely to avoid race as White children, and such avoidance exacted a cost to performance and nonverbal comfort. Results suggest that teachers are particularly important social referents for instilling norms regarding race. Norms that equate colorblindness with socially appropriate behavior appear more broadly influential than previously thought, stifling talk of race even among those for whom it may be most meaningful.
INTRODUCTION Although cultural heritage is increasingly recognized as a potential catalyst for tourism, many cultural heritage events are in the making, both in academia and the general public. The idea of researching cultural tourism based on folklore culture arose during research and conclusions that the UNESCO Representative List of the Intangible Cultural Heritage is used by many countries to transform existing tourist values and create a competitive advantage of a locality . In addition, folklore is part of the cultural heritage that develops in a community and is characteristic of that community . In the past, folk culture represented a system of folk customs that determined the daily life and ceremonies of members of already established social communities. As a result of social and economic changes, the whole system has changed and the events in our daily lives are not the same. However, customs are constantly and continuously passed between and within groups of people and civilizations. Folklore, which belongs to these particular traditions, is common in many nations, particularly in the Balkan Peninsula. By adding kolo to the UNESCO Representative List of the Intangible Cultural Heritage of Humanity in 2017, the United Nations Educational, Scientific, and Cultural Organization acknowledged the significance of folklore as a form of tradition in Serbian society . UNESCO World Heritage List is also used as a means of attracting large numbers of tourists, given that the tangible or intangible heritage on this list is an important attraction for tourists . The number of tourists visiting World Heritage Sites is steadily increasing , which encourages communities to preserve it and present it in the best possible manner to tourists. Bearing in mind the importance of the UNESCO cultural heritage list, the subject of research in this study is the examination of folk culture and tradition in the context of cultural tourism based on Serbian folklore. The paper also gives recommendations for a new modern form of tourism -creative tourism that can represent a new strategy for attracting tourists to a destination . According to Portuguese creative tourism network, creative tourism combines different elements of tourism and creative content and incorporates them into the lifestyle. Consumers or travelers desire to participate actively in the experience and explore their creative potential or activities in the location . Using multidimensional and multinational social research, the paper explores the role of intangible cultural heritage on the tourism map of the Republic of Serbia. The results of the investigation are based on new empirical evidence developed in 2021 through a questionnaire and data processing in the SmartPls software package. The goals of this research are reflected in specifying the significance of the intangible cultural heritage through a theoretical approach and examining the ways, factors and contexts of the spread of national customs and traditions through Kolo dance. Taking the motivation of tourists for cultural tourism, McKercher et al., point out that culture as a tourist attraction can be a powerful force in the claim that the historical, cultural, religious and industrial past of the region should be preserved. Based on the relationship between motivation, cultural contact and tourism, the following hypotheses were derived: H1: Motivation for travel has a positive effect on tradition and cultural contact in tourism H2: Tradition and cultural contact in tourism have a positive effect on the interest in the dance Kolo. The Kolo dances are almost always performed to commemorate the most significant occasions in people's and groups' lives, making them a very enduring and current national emblem. Cultural and artistic organisations maintain the continuation of the practice while institutions and local communities ensure its prominence through planning local, regional, and national festivals and competitions. The most frequent method of talent transfer is through active engagement, and skilled players inspire others to learn. The paper presents and integrates intangible heritage, folklore and cultural tourism in the context of the tourism industry in an original way. This paper provides a new view of cultural tourism and opportunities to create an original tourism offer through the connection of cultural tourism. This is supported by the increasing tourism income and the growth of tourism in the post-Covid period. In the Republic of Serbia, folklore is a form of intangible folk art that is rich in spiritual values that are connected to traditions, festivals, songs, dances, and legends. Each of the regions in the Republic of Serbia has its own kolo story, custom or tradition presented at numerous festivals and tourist events. With this in mind, the idea for a new form of tourism emerged, especially in the post-Covid period. --- THEORETICAL BACKGROUND According to the World Tourism Organization survey on culture and tourism, the majority of respondents classified cultural tourism into two parts: tangible cultural heritage and intangible heritage . According to this research, as much as 35.8% of the incoming tourist market belonged to cultural tourism. The relationship between tourism and the intangible cultural heritage has been the subject of research by many authors . In the contemporary setting, cultural heritage is a crucial component of travel and is increasingly becoming a draw for travelers , especially for the development of intangible tourism destinations . Cultural tourism, of which cultural heritage tourism is part is one of the fastest growing components of tourism in many countries , as is the case of Serbia. Cultural heritage has been gaining importance lately, not only for its economic benefits but also for its serious approach to sustainability . Due to the growth of mass tourism, cultural heritage tourism is endangered and a serious approach to preserving the sustainability of this specific and rare type of tourism is needed . Intangible cultural heritage depicts the natural and cultural landscape of the Republic of Serbia by pointing out the multiethnic characteristics of the people, and tourist promotion restores the identity of the Serbian people through the meeting place of cultures, religions and languages . Relatively little attention has been given in literature about relationships between travel motivation, cultural framework, and interest in folklore culture . For example, Hall & Weiler concluded that the motivation of travelers is primarily determined by a special interest with a focus on activities in a specific destination. In addition, the authors Swarbrook & Horner added that a tourist with a special interest is highly motivated to develop a new interest and learn something new about the location he is visiting. Recent research shows that very significant cultural attractions that are valorized for tourism purposes are actually promoted cultural heritages to which local traditions, folklores and artistic events have been added . The cultural and folklore potential of a country is extensive and is made up of components that connect a rural way of life to material and spiritual culture . The UNESCO Representative List of the Intangible Cultural Heritage of Humanity's inclusion of the Kolo , Slava , and singing to the accompaniment of the gusle represents a significant advancement for Serbian culture and rebrands Serbia . Intangible cultural heritage is a particularly attractive element of tourism services. The idea of intangible cultural heritage, as outlined in the Convention for the Safeguarding of Intangible Cultural Heritage , should be taken into account when discussing ethnology. In this sense, the promotion of ethnological elements in the tourism industry, as part of intangible heritage, is one of the promising ways to preserve ethnic diversity. This is because the desire to comprehend various occurrences in ethnic and cultural domains led to the mixing of many types of tourism activities known as ethno and cultural tourism . A combination of all these elements can form a tourism brand. Globally recognized intangible elements of Serbia's cultural heritage potentially lead to more tourists . Folklore is an integral part of the cultural tourism resource and it has an important integrative social function, nurturing a collective identity. It carries the hallmark of local and regional identity and serves as a symbol of the national community . However, the assessment of the impact of folklore on tourism resources and its practical value in stimulating the tourism industry is still pending. For this reason, attention remains to be paid to present and future research. A study by the authors Chang et al. showed that most respondents were interested in the folklore dimension of traveling or traveling for pilgrimage. Also, in his research, the author Bochenek pointed out the strong link between cultural heritage tourism and folk dance learning. Folklore, customs and tradition are specific tourism resources of national and regional identity in the age of globalization. They are becoming a tourist product to millions of people around the world and provide reasons for cultural and creative tourism. Folklore, or traditional dance, is a family-friendly hobby that has been handed down through the ages. The results of a study by Filippou et al. indicate that more and more highly educated individuals in Greece attend folklore-related festivals and prefer folklore as a folk play. The results obtained by these authors can be singled out as important for tourism development. First of all, the majority of the surveyed respondents are those who have been attending folklore lessons for a long time and can thus be characterized as drivers of the development of recreational tourism. These respondents, that is, the hosts, represent a stable basis for the tourist offer, and travel agencies can create offers based on traditional folklore learning courses in a particular country. --- STUDY AREA The Republic of Serbia is located in the central part of the Balkan Peninsula, at the intersection of roads and various influences coming from the north and south, east and west. Over the centuries, Serbia has had different political systems, but it has remained a multiethnic state with different ethnic communities living on its territory: Slovaks, Hungarians, Romanians, Albanians, Croats, members of the Roma community etc. . Different ethnic minorities live together with the majority population and have their own language, customs, name, religion and cultural tradition. People that have inhabited the Balkan Peninsula for centuries have left behind a rich cultural legacy, and the growth and durability of their cultures have been impacted by the region's recurrent political upheaval. So, there are different customs, rituals, skills and techniques in the Balkans that represent the intangible cultural heritage and are the identification point of the Balkan people. The ongoing process of cultural exchange involves the transfer of traditions, rituals, and knowledge from one generation to the next. Due to this exchange, cultural similarities that are becoming apparent can be identified, such as folk costumes and dance practices called Kolo, that is, folklore and the rituals and dances associated with it. The spread of customs and traditions creates the basis for the development of cultural tourism. Because of its impact on the social, cultural, historical, and environmental environments, tourism is an extremely complex societal phenomenon. A great heterogeneity of the area provides many opportunities for tourism. For example, studies on the cultural heritage and impact of tourism and the intangible cultural heritage highlight the significant role of tourism and the greatest potential for economic growth and development . --- Fig. 1 Map of research area Source: Authors by using https://www.mapchart.net/europe.html Serbia is a significant component of the Balkan Peninsula's traditional ethno folklore culture. Serbia boasts the following list of intangible cultural heritage verified by UNESCO: 1) the Slava, the celebration of the family's patron saint's day, listed in 2014; 2) the Kolo, a traditional folk dance, listed in 2017, 3) the Gusle singing, listed in 2018 and 2020: 4) Zlakusa pottery production, hand-wheel pottery production in the Zlakusa village and 5) Social practices and knowledge related to the preparation and use of the traditional plum spirit -šljivovica . --- DATA AND METHODS During the research, an anonymous questionnaire was used, which was distributed via the Google platform. The questionnaire contained 22 questions, where 80 valid answers were collected and processed for further data processing. When collecting answers, a five-point scale was used . The research was conducted in the period May-October 2021 in order to cover both the period of the intensive season and the part outside the tourist season. The questionnaire was distributed in English, taking into account the expectations of visiting foreign tourists. Based on the outcomes of earlier study and a combination of those results, the questions were modified and changed with certain modifications in light of the Serbian context. There are four sections to the questionnaire. The first component collects background data on respondents. The next segment is related to factors influencing the tourists' decision to travel to Serbia and motivation for travel. The third section presents the respondents' opinion about sharing national customs and traditions. The last, fourth section, analyzes the tourists interest in folklore. The sections and abbreviations are the following: ▪ general information about respondents, ▪ factors influencing their decision to travel to Serbia and motivation for travel ▪ analysis of their interest in folklore Data analysis is based on SEM -PLS statistics using Smart-PLS 3.0. The analysis of the model of the structural equation with partial least square is appropriate for using small samples to examine the association between variables in tourist research. The covariance-based method and the variance-based method are two methods that can be used to analyze SEM. Demographic statistics of the sample are presented below. According to the data shown in Table 1, the largest number of respondents were female , while the number of male respondents was significantly lower . The majority of responders were between the ages of 30 and 39. Most of the respondents have advanced degrees , as far as education is concerned. Most respondents are engaged by an employer and have an income ranging from 500 EUR to 3,000 EUR. Only 32% of respondents associate their occupation with culture. Source: Author's calculation Due to differences in occupations as well as the level of earnings, it is important to mention the country of origin of the respondents who filled out the questionnaire. Except Serbia, the dominant numbers of respondents were from the following countries: North Macedonia , Croatia , Poland , Germany , Romania , Ukraine and Austria . --- RESULTS AND DISCUSSION Based on a number of factors that influence the motivation for travel, the authors opted for factors that are in the domain of national customs and traditions and interest in folklore. With this in mind, the authors basically use the theoretical model proposed by Rina with some modifications. The proposed Rina's model has been modified to some extent. The measurement model by the author Rina also consisted of three latent variables . The model used in this study also uses three latent variables, namely: motivation for travel which is related to the latent variable Visitor Engagement. The variable cultural frame in this study is identified with the latent variable cultural contact, while the variable interest in folklore is renamed and modified based on the previously set variable Intention to Revisit. Bearing in mind that the previous sample model contained questions related to the use of questions related to English for tourism, those parts were removed and aligned with the research on the traditional Kolo dance. --- Fig. 2 Theoretical model --- Source: Author's calculation The model parameters were evaluated using the Smart PLS 3 software suite. Determination of the value of Cronbach's Alphas was used in order to evaluate the model's validity and the results are displayed in Table 3. The Confirmatory Factor Analysis was used to evaluate the sample's internal satisfied. Confirmatory Factor Analysis was used to evaluate the sample's internal consistency and validity. The internal consistency was calculated using Cronbach's coefficient . According to Nannally , values below 0.7 are prioritized, meaning the observed model's internal consistency criteria have been met. Table 3 shows the obtained values of Construct Reliability Statistics. After the model's validity and fit were confirmed, the value of the regression coefficient was determined. The PLS-SEM model's outcome is depicted in Figure 3 as a result. --- Fig. 3 Structural model Source: Author's calculation All of the regression coefficients and the R square, which are represented by the blue circles of the latent variables, are positive, according to the data displayed in Figure 2. This demonstrates the validity of the initial study hypotheses. In order to assess the significance of the specified hypotheses, it is also important to determine the significance of the acquired coefficients. The findings in Table 4 reveal that, at the level of p 0.05, every regression coefficient is statistically significant. Given that the regression coefficient demonstrating the link between cultural context and folklore interest is relatively high, it can be said that hypothesis H1 is supported. The association between travel motivation and cultural frame likewise yielded a positive regression coefficient , supporting the conclusion that hypothesis H2 is true. The results therefore indicate a high positive and statistically significant impact of influence of the cultural framework on the interest in folklore culture among tourists who visited the Republic of Serbia. The results can be connected with the claims of the authors Antón et al., who show that the internal drivers of individuals who are related to learning local customs in the destination are precisely the drivers for the attractiveness of the destination. Related to the second hypothesis, the results also showed a high and positive statistically significant relationship between travel motivation and cultural framework. In fact, the results reproduce the fact that the traditional culture of the people in destination is an important motivation for travel. Having that in mind, the author Pettersson points out that tourism demand can be stimulated by local culture, both traditional and non-traditional customs and handicrafts, which will increase the number of visitors. --- CONCLUSION Based on the presented theoretical and empirical part of the study, it can be pointed out that cultural tourism is certainly a significant element of tourism for many destinations. However, few studies have focused on travel experiences . This study sought to contribute and improve the understanding of folklore tourism as one of the elements of cultural tourism and thereby contribute to lessening the gap between the experiences in cultural tourism. It is particularly important that this study contributes to the ongoing efforts to enhance the cultural experiences of tourists as an element for the destination's competitive advantage. The obtained research results confirmed all the factors that were included in the analysis. All factors that have been researched have a positive effect on the interest in folklore as a tourism resource in the Republic of Serbia. Although the factors under investigation have a significant impact on interest in folklore, the relationship between the cultural framework and the interest in folklore was found to have the strongest regression coefficient, suggesting that future events should pay special attention to being improved and utilized for tourist purposes. Legends, beliefs, folk tales, songs and dances along with folk dances have always been an important cultural asset of the community. They represent specific cultural expressions of utmost importance for national identity. In addition to the social, they are an important element of tourism development and of the sense of the traditionality of a place. This is in agreement with the authors Xi and Wei who pointed out that a tourism product without cultural connotation will not have long-term vitality and appeal. In general, the opinions of respondents toward folk culture and tradition can be deduced as follows: ▪ The importance of preserving tradition is very important for all respondents. ▪ The Republic of Serbia has a lot of potential to develop into a destination for tourists based on cultural tourism grounded in tradition, which could indicate the potential for the growth of creative tourism. ▪ Folklore is an important basis for creating a tourist package of services in Serbia, since 50.6% of respondents prefer folklore when visiting a destination. Given that the questionnaire was distributed online and that women responded more frequently than men, the study's shortcomings might be seen in the small number of respondents. The survey's findings provide a solid foundation for further study in the area of tradition-and folklore-based cultural tourism. Deeper multidisciplinary research that will contribute to academia and society can be established based on this exploratory research. It can also be argued that tourism commercialization and mass tourism have a detrimental effect on the authenticity of traditional local cultures. Various events are adapted to the demands of tourists and thus mass tourism harms traditional customs by creating "false folklore" . Culture should not be sacrificed to promote tourism and add economic value at the cost of losing valuable cultural value. The results have important theoretical implications in terms of being able to support and expand existing models of cultural tourism and, above all, intangible heritage-based tourism. Also, it should be borne in mind that the role of intangible heritage in terms of increasing motivation for travel is not sufficiently addressed in the literature on cultural tourism, so this research is another part of this important area of research. Certainly, the study deepened the analysis of travel motivations by adding quality and value from the aspect of cultural tourism. --- TRADICIJA I KULTURA KAO OSNOV TURISTIČKOG PROIZVODA: STUDIJA SLUČAJA UNESCO NEMATERIJALNE BAŠTINE Tradicionalno srpsko narodno kolo upisano je na UNESCO listu nematerijalnog kulturnog nasleđa čovečanstva 2017. Kolo je kolektivna narodna igra i, kao neizbežan deo javnih i privatnih proslava najvažnijih događaja u srpskom društvu, značajan društveno integrativni element srpskog kulturnog nasleđa. U radu se istražuje potencijal učenja srpskog plesa kao dela kreativne turističke ponude različitih regiona u Srbiji. Podaci su dobijeni putem ankete korišćenjem Likertove skale i analizom pomoću SmartPls softvera. Cilј ovog istraživanja je ispitivanje tradicije lokalnog turizma zasnovanog na folklornoj kulturi sa kojom turisti imaju kulturni kontakt, kao i uticaja kulture i tradicije na nameru i interesovanje za folklornu kulturu. Studija otkriva visok i statistički značajan pozitivan uticaj motivacije za putovanje, kulturu, tradiciju i interesovanje za srpsku tradicionalnu igrukolo. --- II FACTORS INFLUENCING THE TOURISTS' DECISION TO TRAVEL TO SERBIA AND MOTIVATION FOR TRAVEL 1. To which extent are you familiar with Serbia as a tourist destination ? 1 2 3 4 5 2
The traditional Serbian folk dance Kolo was included in the UNESCO Representative List of the Intangible Cultural Heritage of Humanity in 2017. Kolo is a communal folk dance that is performed at both public and private celebrations of the most significant occasions in people's lives and the lives of communities. Kolo is an important socially integrating component of Serbian cultural heritage. The paper investigates the potential of learning Serbian dance as part of the cultural tourism offer of different regions in Serbia. Data were obtained through a survey using the Likert scale and analysis using SmartPls software. The aim of this research is to examine the tradition of local tourism based on folklore culture with which tourists have cultural contact as well as the effect of culture and tradition on the intention and interest in folklore culture. The study reveals a high and statistically significant positive impact of motivation for travel, culture, tradition and interest in Serbian traditional dance -kolo.
care these days. On the other hand, it can provide us some keys to plan maternal health interventions in which these older women become involved, because they gave birth at home, and due to the interest that may arise in relation to childbirth at home, that it has recently increased in many countries . For this purpose, we applied a nursing model. The use of theories and models can help the reflection of basic aspects of our profession, the simplified representation of reality, and the development in our practice . The chosen one was the Sunrise Model, by Leininger. She was the first nurse who defined health care considering cultural aspects, establishing among its principles, the existence of differences and common aspects in health care depending on the culture and on structural factors which influence the way of caring . Her theory has been used in numerous studies in recent decades . Its use can help us explore the role of culture in terms of beliefs and practices related to pregnancy and childbirth, and determine the factors affecting it . The purpose of this research is: To explore beliefs and practices related to pregnancy and childbirth from the perspective of older women who gave birth at home, applying Leininger's Sunrise Model. --- METHOD As the aim of the study was to explore beliefs and practices related to pregnancy and childbirth from the perspective of older women who gave birth at home, the researchers designed a qualitative approach. This approach holistically allowed to explore the cultural awareness of maternal care, providing the insider´s perspective of participants and not the biomedical perspective. The method used to collect the information was the semi-structured interview. The study was carried out from April to September 2012, in the rural municipalities of Almanza and Cebanico , with a total of 16 villages. Participants were women who gave birth at home. The inclusion criteria were: women born in this area, over 60 years old, whose pregnancy and childbirth took place at home in this area, and cognitively able to share their experiences. The exclusion criteria were: lack of desire to participate in the study. After obtaining the ethical permits , a convenience sampling was performed. The principal investigator was a neighbor and well-known person in the area. She contacted women who met the inclusion criteria, in each village, and invited them to participate in the study. The PI used the fact of knowing the sources to establish the relationship and select the most appropriate participants. Using the snowball technique, and being advised by participants and neighbors, the PI contacted other possible participants. Finally, 24 women were Pdf_Folio:3 accepted, pending publication dec 2020, DRAFT "RTNP-D-19-00090_ProofPDF" -2020/9/10 -13:18 -page 4 -#4 contacted . All agreed to be interviewed. All of them were housewives who had between 1 and 17 deliveries at home, and they were between 68 and 92 years old. The technique used to collect the data was the semi-structured interview. Researchers worked with an updated guide from a previous pilot trial as question guide . The information obtained is part of a far-reaching investigation , and within this document, we use information related to cultural issues. Interviews were conducted in the homes of participants. Written consents were obtained from all participating women and ethical aspects were taken into consideration . An audio recorder was used to collect the data. The average length of each interview was of 60 minutes. The PI, the person interviewed and, sometimes, a family member of the person interviewed were present during the course of the interview . A second follow-up visit was made to the participants, to clarify the answers and explore emerging issues. Data saturation was reached with 24 women. The interviews were transcribed by the PI, and listened and revised by the secondary investigator, in order to confirm the transcription. Manual content analysis of the data was used to generate common topics. The analysis was conducted by both the researchers, based on the transcribed data, discovering, coding, and relativizing data . Data were coded and grouped into seven subcategories, and encompassed into two main categories: beliefs and practices related to physiological and to psychosocial aspects. These categories were discussed between the two researchers to identify and reach consensus on their relevance and order. Leininger's Sunrise Model was applied to explore the role of culture and the factors affecting maternity care . To this effect, when analyzing each of the emerged subcategories, we reflected on how the different factors identified by Leininger could have an impact on them. On the other hand, a graphic representation of the data was made, according to the model. --- RESULTS Those beliefs and practices related to pregnancy and childbirth were divided into seven subcategories: minimal intervention, hygiene, pain control, rest, feeding, spiritual well-being, company. Likewise, as above mentioned, these subcategories were clustered into physiological and psychosocial aspects . --- Beliefs and Practices Related to Physiological Aspects Minimal Intervention. For the women interviewed, pregnancy and childbirth were natural events. During pregnancy, "We never went to the doctor" . This fact could have been influenced by social and family factors in a rural community, where women's work was so important: "I did not have anyone to help me at home" . However, in addition, the economic factors could have influenced, because in Pdf_Folio:4 accepted, pending publication dec 2020, DRAFT "RTNP-D-19-00090_ProofPDF" -2020/9/10 -13:18 -page 5 -#5 accepted, pending publication dec 2020, DRAFT "RTNP-D-19-00090_ProofPDF" -2020/9/10 -13:18 -page 6 -#6 accepted, pending publication dec 2020, DRAFT "RTNP-D-19-00090_ProofPDF" -2020/9/10 -13:18 -page 7 -#7 Cultural Care, Sunrise Model 7 this area there were three doctors and three nurses for all the villages, and people had to pay to be assisted. Likewise, once the woman was in labour, "The TBA just came to take the newborn and clean him/her, because I already had everything ready" . Family members or the TBA used everyday instruments from home, as well as plants or mineral elements , or animals . Natural and accessible resources, and technological factors, conditioned thus the care. Hygiene. Hygiene measures: "I always listened to her/him : 'You have to wash your hands"' , "Clean your hands with soap and water" ; they all were in line with the recommendations of that time. They also used animal, vegetable, and mineral elements . For example, fire ash or tallow to disinfect the navel of the newborn. Once again, natural resources, as well as educational factors conditioned the way of providing assistance. Pain Control. For the pain of childbirth, they recommended tea infusions, lime blossom tea, or chocolate. In addition, cultural beliefs also persisted: "If you worked hard, the bones work well and you had few pains, so it is good to exercise and walk during pregnancy" . Rest. Family responsibilities determined the rest patterns. Therefore, some women said "A few days in bed, so that the bones can go back to their place" , and others "The child was born at 3 o'clock in the morning one day. The following day, at 9 in the morning, I left the cows to drink water. I didn't stop in bed, I had to work" . Feeding. If the woman had a craving for any food during pregnancy, she would satisfy it to prevent the child from being born, according to a belief , with a mark on the body. After birth, the woman had to regain her strength and take care of her body to start breastfeeding. A typical meal in those early days was "chicken broth": "They recommended you to eat light meals, such as 'chicken broth"' . Women usually prepared it "My mother gave me broth 2 or 3 days and also omelette" . Other recommended foods were wine, and soft foods. The newborn, during the first days, was fed with infusions of lime or chamomile with sugar, "My sister prepared chamomile, because the child cried and was hungry, with a little bit of sugar" , because it was believed that colostrum was not healthy. Once the first few days had elapsed, if the mother could not breastfeed, she fed the baby with cow's or goat's milk , or they followed an ancient and supportive tradition , and some neighbor who was breastfeeding also breastfed that child: "The neighbour's wife fed my mother" . --- Beliefs and Practices Related to Psychosocial Aspects Spiritual Well-Being. Christian religious beliefs and practices accompanied these moments . Thus, saints or virgins were invoked: "I prayed a lot to San Antonio for the pregnancy to go well, my mother Pdf_Folio:7 accepted, pending publication dec 2020, DRAFT "RTNP-D-19-00090_ProofPDF" -2020/9/10 -13:18 -page 8 -#8 Andina-Díaz and Siles-Gonzále insisted on the need to do it" , and "All women had to confess before giving birth" . There were also pagan beliefs in order to guess the sex of the child, "They asked me which day I got pregnant, and they looked up what type of moon was it that day, and as it was a first quarter moon, they told me I would have a boy" . After birth, following certain ancestral rituals, the placenta was buried with animal waste. Some rituals took place in order to protect the child from the "evil eye." And if the child died, an "emergency baptism" was carried out: holy water was administered to make him/her a Christian before burying him/her: "My mother baptised her. When the priest arrived and he was told what she had done , he said: 'well, the child is already baptised, because what this lady did is legal"' . Another tradition with high religious value was to "maintain the quarantine." During 40 days, women could not go outside, not even to go to the baptism of their children. A woman recalled proudly how she had been the first woman to attend her child's baptism, "I was the first woman in town to go to the baptism of my child" . The tradition of maintaining the "quarantine" was lived between respect and fear, and was not always accepted, as it interfered with the development of their domestic routine: "You could not leave the house back then, because the priests AQ1 would not let you out. I went down here so that they would not see me, to give green rye to the cows, and when I brought the packages behind me, a neighbor told me "I will tell the priest," and I said: "Tell him, and both of you come and help me" . Once the 40 days elapsed, women could go outside. Beforehand, they had to go to Mass to purify themselves, the "Newborn Mass": "After a month, we went to church with the candle and the money to pay for the priest's mass; we were in sin" . Company. The family, TBA, and close friends played an important role during these moments. The neighboring people rang the church bells so that the whole town knew there was a birth. The relatives killed a chicken, and with the meat, prepared the broth: "My aunt killed a chicken" . The husband participated: "My husband stayed with me, because the TBA was small and she had no strength" . After the birth, the family and relatives celebrated it: "After the birth, they celebrated it, they made an omelette or chocolate" . They also prepared the broth: "I was at my mother's house, and she prepared it along with my sister-in-law" . The neighbors visited the woman and brought her food: "the neighbours gave me chocolate, half a dozen eggs; we called it 'the visit"' . Applying the Sunrise Model, we reflected on how beliefs and practices were conditioned by technological factors , religious factors , social factors , cultural factors , economic factors , or educational factors . The structure of this rural community conditioned the way in which these women built an image of motherhood and, therefore, maternal care. For this reason, the culture of this community had a relevant impact on maternal care. In Figure 1, we can see the results achieved, applying the Sunrise Model. --- DISCUSSION This study has explored some beliefs and practices related to pregnancy and childbirth, from the perspective of older women who gave birth at home in a rural area of Spain, thus fulfilling the objective. In addition, if we compare the results obtained with current literature, we establish many similarities. The two categories obtained from the results are consistent with the concerns of women during maternity collected in a recent qualitative systematic review, which describe birth as an incarnate experience of physiological and psychosocial nature . In Andina-Díaz and Siles-Gonzále this line, the WHO consider the need of maintaining the physical and sociocultural normality of the pregnant woman . Among the emerged subcategories appears, as shown in the results, the need to experience pregnancy and childbirth as a natural process, fact which has been considered a recurrent issue in several systematic reviews . Another subcategory is the need to maintain minimum standards of hygiene and to use elements of the local economy, which was also mentioned in the work carried out in Brunei or Mexico . In line with our results, in other studies conducted in other areas of the planet, tea, coffee, or seeds were used to control labour pain . In other studies, the specific dietary recommendations for women after childbirth are similar , including vegetables, sugar and cinnamon tortillas with tea, in Mexico , onions or potatoes in Turkey, melon in Iran, or honey, red tea, and cow's milk in India . As for the needs of spiritual well-being, in other studies women also invoked saints or virgins , performed rites after expelling the placenta , or administered concoctions to the newborn to protect him/her from the socalled "evil eye" . On the practice of "emergency baptism," in other cultures, such as the Mexican, there was a similar belief, by which the dead child born had to be buried under a stream of water, the water prevented him/her from staying in limbo . The practice of "quarantine" is still present in some cultures of Asia and is practiced by some immigrant women . Finally, we find studies that emphasize the importance of companionship . In many of these studies cited above, as in ours, the role that older women, family, and relatives were significant, as transmitters of maternal health information. This is in line with other authors . Finally, the application of the Sunrise Model helped us to verify the weight that culture has in maternal health care, and the multiple factors that interfere with the way of caring . The study has limitations, such as the small sample of people interviewed, the specific place, as well as those limitations of the oral sources themselves . In addition, the results are represented only with one model, without comparing them with others. Therefore, as future lines it is proposed to replicate the study in other areas, and compare them with other cultural models. --- INTERNATIONAL IMPLICATIONS FOR PRACTICE The fact of knowing the experiences of older women who gave birth at home help us to understand the origin and weight of some beliefs and practices conveyed from generation to generation , and which survive nowadays in some pregnant women. These beliefs and practices are similar in different cultures, and are divided into two main categories . This fact is interesting to be considered, in order to provide cultural care these days, and generate a positive impact on women, their babies and their family. On the other hand, we have verified the role that these older women, family, and relatives had as significant transmitters of maternal health information. This issue, added to the fact that these women gave birth at home, can provide us some keys to plan maternal health interventions in current affairs, which older women become involved as companions or counselors in some cases. Finally, the application of the Sunrise Model has helped us to verify the weight that culture has in maternal health care, and the multiple factors that interfere with the way of caring. The application of models to real situations such as this one facilitates the reflection on essential aspects of our discipline-as it is maternal careand the graphic and simplified representation of that reality. Consequently, all this helps us to develop and improve our practice: as nurses, not only should we focus on knowing the physical aspects, but also the social and cultural circumstances surrounding the pregnant woman. Something that today seems to be especially relevant, as the WHO establish and on which theoretical nurses, like Leininger, had already placed value decades ago. --- Author Queries: AQ1: AU: As per stylesheet, there should be 4 to 6 keywords. Please check and update.
and Purpose: The role of older women close to the pregnant woman may be relevant when conveying information. The use of theories/models can guide the development of nursing practice. Purpose: To explore beliefs and practices related to pregnancy and childbirth from the perspective of older women who gave birth at home, applying Leininger's Sunrise Model. Methods: Qualitative approach, using semi-structured interviews with 24 older women who gave birth at home (rural area, Spain). Manual content analysis of the data was used, and Sunrise Model guided to explore the role of culture and the factors affecting maternity care. Results: Two main categories emerged: beliefs/practices related to physiological aspects (subcategories: minimal intervention, hygiene, pain control, rest, feeding) and to psychosocial aspects (subcategories: spiritual well-being, company). Implications for Practice: The experiences of older women who gave birth at home helped us to understand some beliefs that survive in some pregnant women, similar in different cultures, and divided into physiological and psychosocial aspects. An interesting fact to consider to provide cultural care. Older women have a relevant role as transmitters of information, and can provide some keys to plan health interventions, as companions or counselors. Applying the Sunrise Model, we verified the weight that culture has in maternal health care, and the multiple factors that interfere with the way of caring. The application of models helps us to improve nursing practice: not only should we focus on knowing the physical aspects, but also the social and cultural circumstances surrounding the pregnant woman.
INTRODUCTION The tribal development in India cannot be observed, given the country's rich cultural diversity and the presence of numerous tribal communities. These indigenous groups, often residing in remote and ecologically sensitive regions, constitute a vital part of India's social fabric. Focussing on their development is crucial for several reasons. First and foremost, it promotes social inequality by addressing historical injustice and bridging the socioeconomic gaps prevalent in these communities. Secondly, tribal development contributes significantly to the preservation of India's diverse cultural heritage, including unique languages, traditions and art forms. By empowering tribal communities through education, healthcare and skill development, India can tap into their immense potential, fostering entrepreneurship and contributing to the nation's economic growth. Additionally, ensuring the welfare of tribal population promotes social harmony by reducing disparities and fostering a sense of inclusion. Moreover, many tribal regions are ecologically fragile, and sustainable development initiatives can aid in environmental conservation efforts, making tribal development vital for both social progress and environmental sustainability in India. Recognizing and supporting the unique needs of these communities are essential step toward a more inclusive and harmonious society in the country. To ensure the development of these people government has initiated number of programmes. Though these programmes are being implemented from so many years there is a need to study the impact of government development initiatives on tribals is paramount in fostering inclusive and sustainable progress.Tribals, often residing in remote and economically disadvantaged areas, require targeted interventions to uplift their communities. By conductive comprehensive studies, policymakers can assess the effectiveness of existing initiatives, ensuring that these programs promote social justice, economic empowerment and cultural ---------------------------------------------------------------------------------------------------------------------------------------------------------- preservations. Such research enables the evaluation of policies, adding in the allocation of resources and the design of future strategies. Moreover, it ensures that the human rights of tribal populations are respected and protected, fostering a harmonious relationship between development goals and the preservation of indigenous cultures. These studies also play a crucial role in mitigating conflicts, promoting sustainable development and fulfilling international commitments related to indigenous rights. Ultimately, data-driven insights gleaned from these studies are essential for informed-decision making, facilitating the formulation of policies that genuinely improve the lives of tribal communities while respecting their unique cultural identities. --- Need for Government Development Programs to ensure tribal sustainability Government development programs play a crucial role in ensuring tribal sustainability for several reasons: 1. Economic Development:Government programs canprovide financial assistance and resource to promote economic development within tribal communities. This can includesupport for entrepreneurship, job creation and infrastructure development, which are essential for the long-term sustainability of tribal economies. 2. Education and Healthcare: Government programs can allocate funds for improving education and healthcare service in tribal areas. Access to quality education and healthcare is vital for the well-being and future prospects of tribal communities. By investing in these areas, government can help reduce disparities and empower tribal members to lead healthier and more prosperous lives. 3. Land and Resource Management:Many tribal communities rely on natural resources for their livelihood, such as agriculture, forestry or fishing. Government programs can assist in sustainable land and resource management, ensuring that these resources are used responsibly and in a way that preserves their availability for future generations. This can involve initiatives for conservation, sustainable farming practice and protection of tribal lands. --- cultural preservation: Tribal communities have unique cultural identities that are often closely tied to their lands, languages and traditions. Government programs can support initiatives aimed at preserving and promoting indigenous cultures, including language revitalization, cultural heritage preservation and the protection of sacred sites. This helps maintain the social fabric and identity of tribal communities, contributing to their overall sustainability. --- Legal and Political Support: Government programs can provide legal and political support to tribal communities, ensuring their rights and interests are protected. This can involve initiative for self-governance, recognition of tribal sovereignty and the enforcement of laws that safeguard tribal rights. By addressing legal and political challenges, government can create an enabling environment for tribal sustainability. --- Capacity Building: Government programs canoffer capacity building opportunities to tribal communities including training, technical assistance and skill development programs.by enhancing the capabilities of tribal members and institutions, government can foster self-reliance and empower tribes to manage their own affairs effectively. Overall, government development programs are essential for ensuring tribal sustainability by addressing economic, social, cultural and environmental challenges faced by indigenous communities. By providing support, resources and opportunities, government can help tribal communities thrive and preserve their unique identities for generations to come. --- Government development programs for tribals in the study area Mahatma Gandhi National Rural Employment Guarantee Act MGNRGEA was the first nationwide welfare scheme introduced by an act of Parliament in 2006. At least 100 days of work per year will be provided to the rural poor, agricultural labourers and landless poor families below poverty line. Unskilled works include excavation of ponds, roads, repairs of old roads, provision of protected fresh water shelters, planting of plants, flood prevention, raising ground water levels, drought prevention works. Due to this scheme, the migration of tribals is decreasing and infrastructure facilities are being provided to them. --- Self-Help Groups SERP was established in 2000 to provide economic opportunities to women to eradicate rural poverty. Then Self-Help Groups formed in SERP. The scheme aims to bring quantitative change in the lives of women and improve their socio-economic status. It helped to raise the living standards of the downtrodden people and bring them into the mainstream society. ---------------------------------------------------------------------------------------------------------------------------------------------------------- --- Volume: 11 | Issue: 1 |January 2024 --- Pradhan Mantri Awas Yojana The scheme was launched in 2015, provides houses to the homeless poor and infrastructure such as safe drinking water, sanitary drainage system around the house and electricity to eligible below poverty line families in rural areas. The beneficiaries of this scheme are selected on the basis of socio-economic conditions. --- National Rural Livelihood Mission The scheme was established in 2011 to setup self-help groups for women below poverty line and provide microloans fortheir employment. In 2006, changed it to Deen Dayal Antyoday National Rural Livelihood Mission scheme. Through this scheme, road facilities have been established, connectivity between other areas has increased, education, medical and market facilities have been provided and the tribals have gained selfreliance. --- Pradhan Mantri Jan Dhan Yojan The government implemented the scheme in 2014 with an aim to encourage all citizens of India to open bank accounts and contribute to the economy. It aims at empowering the downtrodden sections, women, small and marginal farmers and labourers by making them economically active. Through this scheme, the tribals who are not in the mainstream society socially and economically can be brought into the mainstream and financially supported. --- Integrated Tribal Development Agency This is come in to existence in the year 1979-80 with the aim to protect the interests of tribal people. ITDA people will conduct skill development programmes and provides aid in peachiest equipment for self-employment and it also deals with banks to provide grants and loans to the downtrodden community. This organization tries to bring the tribals into mainstream society. They also work an infrastructure development in the tribal areas and education enhancement through providing aid to tribals educational institutions. ITDA also would like to ensure livelihood to the tribals throughout the year. --- Navaratnalu scheme The Government of Andhra Pradesh has come up with unique sustainable social development program called "YSR Navaratnalu". Under the stewardship of chief minister Y.S. Jaganmohan Reddy. In the program total Nine schemes are there under which Andhra Pradesh Government is providing financial aid to marginalised people and basic infrastructure development and amenities to the downtrodden community. --- OBJECTIVES OF THE STUDY • To study the status of the scheduled tribes in the Andhra Pradesh • To identify beneficiaries among the respondents of tribe • To assess the impact of development programs on income and employment generation to attain the development with in the study area. The state of Andhra Pradesh has three regions: Rayalaseema, South costal Andhra and North costal Andhra. The Nellore district in south costal Andhra region has been selected based on purposive sampling method. Nellore district is the largest tribal populated district in Andhra Pradesh, comprising total scheduled tribe population 2,14,452 , out of which Yandi population is 1,76,341. Tribals are found in all the 38 mandals of Nellore district. The area of study covers four villages from four revenue divisions viz; Atmakur, Kandukur, Kavali and Nellore. The study area covers four villages from four revenue divisions of Nellore district of Andhra Pradesh. The mandals village and respondents selected based on multi-stage random sampling method. The village Dachuru in Kaluvoya mandal selected in Atmakur revenue division, Chevuru village from Guddluru mandal from Kandukur revenue division, Brahmanakraka village from Jaladanki mandal from Kavali revenue division and Chavatapalem village from Venkatachalam mandal from Nellore revenue division. In order to study, seventy -five respondents are selected in the randomly from each selected village and total 300 respondents have been selected in Nellore district of Andhra Pradesh. --- TOOLS OF DATA COLLECTION The data for the present study will be collected from the primary and secondary data. The primary data will be collected by schedule method and covering the aspect of socio-economic profile of the beneficiaries and impact ----------------------------------------------------------------------------------------------------------------------------------------------------- --- TOOLS OF ANALYSIS A simple statistical tool such as averages and percentages will be used for the porpose of analysing the data. The main goals of the paper are to analyse chief socio-demographic aspects of the selected beneficiary households under study are of social education and economic development. Government has introduced some terms of prosperity, education and employment. 82 percent of respondents benefited from various programs from the government, while the remaining 18 percent of respondents did not receive any benefit. Majority of the families have been able to improve their economic status and social status by availing the benefits provided by the government. --- Table -2 Who informs you about the schemes source: filed survey There are five types of tools to get information about government schemes viz; through newspapers, through village leaders, through government officials, through NGOs and through friends / relatives. 11 percent of respondents get information about government schemes through newspapers, 13 percent of respondents from village leaders, 21 percent of respondents from government officials, 39 percent of respondents from NGOs and 16 percent of respondents get information about government programs from friends/ relatives. Most of the respondents get information about government schemes through NGOs. ---------------------------------------------------------------------------------------------------------------------------------------------------------- Indira Awas Yojana scheme, currently known as Pradhan Mantri Awas Yojana which aims at "housing for all". 42 percent of respondents did not know, they could not benefit. Remaining 58 percent of respondents are benefited of this scheme. Information was taken through self-help groups, through training programs and through village leaders. Self-help groups are very useful for the tribals, they form a group and attend various meetings to gather their opinions and utilize them. 78 percent of respondents are getting benefit through this scheme and remaining 22 percent of respondents are not aware of the scheme or not have benefited from it. and provides loans at low rates. As a result, small traders and women are getting loan facility and entrepreneurs are doing well. While 37 percent of respondents benefited from tis scheme, the remaining 63 percent of respondents are not aware of the scheme or could not benefit. ---------------------------------------------------------------------------------------------------------------------------------------------------------- The Andhra Pradesh government providing financial aid to marginalised people and basic infrastructure development and amenities to the downtrodden community. 94 percent of respondents have benefited from some programs under this scheme, but 6 percent of respondents have not benefited from this scheme. provides aid in peachiest equipment for self-employment and it also deals with banks to provide grants and loans to the downtrodden community. 35 percent of respondents have benefited in various ways through ITDA. 43 percent of respondents had no benefit but 22 percent of respondents did not even know they had ITDA. This is also the opinion of Yanadisabout the development of tribals. 18 percent of respondents are not at all helpful about these programs, there is no change in their way of life. 71 percent of respondents said that these programs are somewhat useful. 11 percent of respondents said that these programs are very useful. The transformation of socio-economic status of Yanadi tribe in the study area. Government of India Government of Andhra Pradesh, ITDA are implementing many programs for the welfare of these tribals. Among Yanadis 26 percent of respondents said their socio-economic status has not changed. 14 percent of respondents are unable to justify their statusand remaining 60 percent of respondents are improved their socio-economic change in the study area. ---------------------------------------------------------------------------------------------------------------------------------------------------------- The increasing money generated through various schemes is mainly used in 8 categories viz: health, school, clothing, food, entertainment, household material, jewellery and savings. 23 percent of respondents their health, 14 percent of respondents are using it for children's education. 18 percent of respondents to buy new clothes for the festivals they celebrate, 21 percent of respondents spending on food, only one percent of respondents spend on entertainment, 13 percent of respondents spending on household needs and remaining 10 percent of respondents savings for future needs. The Yanadis mostly spend on health and food. Due to the programs undertaken by the government, the role of tribals in the society has increased and there has been a changed in the occupation of children. 42 percent of respondents said that their children's occupation has not changed. While the remaining 58 percent of respondents said that their children's occupation and their living standards have increased. with mainstream society, now tribals are playing their part in education, employment and politics. Government also allocates funds for welfare and development to make things happen, they are doing their own professions. 80 percent of respondents expressed that they are in touch with the mainstream society. Remaining 20 percent of respondents said that they are out of touch with mainstream society. --- Volume: 11 | Issue: 1 |January 2024 --- Table -15 --- The impact of government development programs on the change in their family status is known. 18 percent of respondents are of the opinion that the family condition is good, 27 percent of respondents are of the opinion that the family condition is satisfactory and remaining 55 percent of respondents are opinion that the family condition is poor, they said that their condition has not changed. --- CONCLUSION The research is conducted to examine the development programs impact in the study are and found that development programs have contribute to the socio-economic transformation of tribals and this can be seen in terms of employment generation, increasing in knowledge level in various fields and economic conditions. Positive changes eventually led to tribal empowerment in terms of economic independence, but these changes worked only to a limited extent. The impact of development program is evident not only on the economic development of the tribals but also on the social life. Rise in social status of respondents there has been a change in recreational activities and better care is being taken in sending children to convents/ schools with quality clothing. Build good relationships with people in community and stay close to the mainstream society. The programs have been very helpful in improving their family's financial situation and many children have changed occupation.
In independent India still the tribals have not developed to the extent expected. Tribals are living backward conditions due to lack of awareness about the need for education. Tribals do not have land so they cannot contact with mainstream society for financial needs and for the government provides financial facilities through some welfare schemes. Many of the tribal peoples are living dependent on the facilities provided by the government and even today Yanadi tribes are living a nomadic life without their own house or proper job opportunities. These schemes are very useful for Yanadi tribals to lead an ideal life and to be a part of education, job and employment opportunities. Though these programmes are good but these programmes not able to ensure sustainability of all tribals. With the change in the time Indian government priorities changed. After independence first government focussed on agriculture then industrialisation, later power sector, now we are in the era of digitalization. Similarly, the tribals needs and expectations are changing time to time. In this context, the present article focusses on "Impact on Government Development Programmes on Yanadi Tribe Sustainability in Nellore district of Andhra Pradesh" so as to understand what extent these schemes are successful and to identify any new aids needed by them.
introduction The field has often made calls for sociologies. From the sociology of stuttering to the sociology of mobile phones, "sociologies" are language of appeal: this particular topic deserves sociological attention. Let's make it the object of study! The call for a sociology of diagnosis had a rather different intent. From its initial mooting in 1978, by Mildred Blaxter 1 , to its status today as a bone fide sub-discipline, sociologists of diagnosis have focussed on how this particular sociology shines a light, not on itself as an object of study, but other aspects of social life: power, distribution of resources and interests. Elsewhere I have written that diagnosis is "a kind of focal point where numerous interests, anxieties, values, knowledges, practices and other factors merge and converge" 2 . It is implicated in global politics, commercial agendas, health care relationships, boundary work, and so on. Emerging as a discipline, the sociology of diagnosis was first an idea, proposed by a number of scholars, discussed and debated amongst them; then a collection/special issue; a monograph, and a field. It now fills the role that Sarah Nettleton and I argued it should in the first special issue: that diagnosis "provides a not only a category and process but a neat analytic tool that serves as a prism that reflects and casts light on a multiplicity of issues in health, illness and medicine" 2 . Diagnoses have increasingly been at the fore as a result of evidence-based practice movement, which has argued, with overwhelming success, for clinical medicine to use principles of clinical epidemiology. This in turn is only possible in the presence of countable categories of disease, that is to say, diagnoses. Diagnoses are the means by which cases are assembled to enable generalisation. Recognising the similarity between cases, and thus diagnosing them, achieves a number of classificatory aims, including organizing knowledge 3 ; recognising clusters 4 ; and perhaps, above all, as Richardson wrote at the beginning of the last century, reducing a disorderly mass to an orderly whole 5 . Categorization of course, is a social activity, as deciding how the continuum of human function will be broken into manageable and explainable parts is the result of deliberation, power and consensus 6 . How conditions come to be given official status within medical diagnostic systems like the International Classification of Diseases or the Diagnostic and Statistical Manual of Mental Disorders is a matter of interest to the sociologist of diagnosis. The way in which diseases are categorized says a great deal about what a society values, how it makes sense of nature, as much as it does about pathophysiology. It takes more than the technical capacity to recognise an ailment for it to be given diagnostic status. For example, that microscopy enables one to view the spirochete responsible for Lyme disease is of no interest if no one is attempting to look. In the case of Lyme, the fortuitous disease cluster amongst children in Lyme Connecticut enabled a recognition of similarity which could then lead to its technological discovery 7 . But at the same time, there has to be a will to see a particular disorder as disease. Contested diagnoses like electromagnetic or multiple chemical sensitivities are often overlooked, and become point of extreme contest between sufferers and the medical institution 8 . Diagnoses are the categories we use to create order; sort through particular symptoms and presentations; place them together or apart, and do the work of medicine. The categories used in medicine reify, serve as heuristic and didactic structures, determine the treatment protocol, predict the outcome, and provide a sense of identity for lay and professional alike 9 . They also serve to explain deviance. Conrad & Schneider 10 and Rosenberg 11 all have demonstrated, in different ways, how diagnosis guards the boundary between deviance and normality. What may not fit social norms, can be variably viewed as bad, or as sick. Diagnosis, is, as Blaxter famously described, both a category and a process 1 . The process is the means by which the diagnostic category does its social work. Already it designates social role, as lay person approaches clinician in the pursuit of diagnostic explanations. Each has her own role as the diagnostic process is undertaken. But at the same time, many other social functions are triggered and resources allocated. Treatment and prognosis are determined, medical speciality is defined, and identity rejigged. The diagnosis can legitimise as well as stigmatise; not all diagnoses are created equal. Diseases with sexual or psychiatric connections may reduce the social status of the diagnose. To have AIDS or Syphilis has a very different impact than arthritis or influenza. Dag Album has referred to "disease prestige" in a model which shows medical predilection for particular diagnoses ranked in order of heroic potential 12 . But diseases create other types of identities as well. Maren Klawiter 13 demonstrated how breast cancer at different eras generated different identities: fighter, survivor and activist. Different disease regimes offered different ways of experiencing the cancer diagnosis. In addition to identity, the diagnosis can be a source of commercial exploitation. While many countries have legal restrictions in place in relation to the advertising of prescription pharmaceuticals, few prevent the pharmaceutical industry from promoting disease awareness. Industry's involvement in the promotion, identification and cure disease is disease branding: a way of marketing, not the therapy, rather the awareness of the condition that the therapy is supposed to cure. An effective disease-branding strategy results in sufficient public awareness such that intervention is no longer required: the patient and doctor are vigilant monitors of diagnostic potential 14 . The social model of diagnosis provides a heuristic for considering diagnoses in their social and cultural context. It juxtaposes on the one side, the way in which diagnostic categories are socially framed, and on the other side, the social consequences of their attribution. Further, it places the process of diagnosis squarely in the centre, with the doctor-patient interaction, troubled as it is by the democratization of diagnostic information, the advent of self-diagnostic apps and tools, the encroachment of other professional diagnosticians and so forth. There is a circular relationship between the two sides of the model with diagnostic categories shaped by the consequences they entail, and the consequences shaped by the categories imposed 2 . --- genetic diagnoses and the social model Using the social model of diagnosis as a starting point, in the pages which follow, I will point out some of what critical scholars of genetic medicine should consider as the field opens before them. As genetic explanations for ailments multiply and the science around genetic disease moves ineluctably forward, there is concomitant rise in social issues related to this new diagnostic paradigm. I will propose some thoughts for social scholars which focus on not only the way that genetics shapes diagnostic process and classification, but also on the role of diagnosis itself as a sense-making tool in health, illness and disease. This paper will propose how the social model of diagnosis may apply in the context of genetic diagnosis including identity, screening, disease definitions, and the certainty of genetic determination . --- Social Framing Social framing is a term which Robert Aronowitz highlighted in his 2008 paper in Social Science and Medicine 15 . He used this term, he explained, as a way of referring to how social forces shape what we consider as disease without falling into the trap of anti-social constructionism, understood by some to mean that there is no reality. Social framing acknowledges the material reality of illness or of disease but "…avoid[s] a few unwanted connotations sometimes associated with constructionist arguments --a style of dated cultural relativism, a lack of common sense, and a reflexive opposition to biomedicine". The critical scholar of genetic medicine will need to consider what social frames the genetic turn brings to the understanding of diagnosis, health and illness. --- Believing is seeing An important social frame that the critical diagnosis scholar should consider as she approaches the subject of genetic diagnosis is the degree to which science replicates belief patterns, rather than disrupts them. Laqueur eloquently used historical anatomical drawings to demonstrate how social beliefs about, in his case, sexual roles, shaped the way in which scientists of an era were able to see the differences between the female and male bodies 16 . Depicted as an inside-out penis, the female genital organs embodied the relationship between men and women. "Ideology, not accuracy of observation, determined how they were seen and which differences would matter". While it would be facile to retort that contemporary science has "moved on," that would be a mistake. Every era imposes its own normative values on the human body, and contemporary Western medicine takes biology as the cause, and behaviours as the emerging effect 17 , much like Laqueur's images which propose a particular relationship between men and women from this anatomical starting point of inside-outness of the 16th century. The critical scholar of the genetic turn should ask a number of questions in relation to this conundrum: now that we CAN see human biology in different ways, what should/are we looking for and how is this shaped by extant belief patterns and norms? Just as the phrenologist asked questions about the relationship between personalities, or behaviours and skull shapes, how can/ should we justify the questions we ask about genetic profiles? For example, the pursuit of an obesigenic genetic profile is linked to an assumption that fatness is an indicator of poor health, which in turn is based on a longheld belief that the appearance of the individual provides a portal to the inner self, a glimpse of the hidden workings of the body, a kind of aesthetic of health 18 . This belief, inadequately examined, leads to a focus on obesity rather than on its causes, and is not upheld by many epidemiological studies 19,20 . It has been referred to as a moral panic by Campos et al. 21 . --- Potential patients Further troubling the framing of diagnoses is the problematic nature of screening in which genetic diagnosis today has the potential to play an important role. I turn to the work of David Armstrong to anchor this discussion 22 . His seminal "The Rise of Surveillance Medicine" underlines the degree to which surveillance and screening problematises normality and transforms the individual into a compliant, always-potentially-ill subject. Armstrong describes how health has come to focus on the seemingly well individual, constantly and continuously checking for his or her disease potential. He calls this "surveillance medicine" whose "boundaries are the permeable lines that separate a precarious normality from a threat of illness". Armstrong's sophisticated historico-sociologic analysis are also captured-albeit far less critically -by elements of the medical community, concerned with over-diagnosis, "incidentilomas," and the insurgence of the medical technology and pharmaceutical industries into the realm of diagnosis, creating an ever-watchful population [23][24][25] . Genetic diagnostic technology offers an additional leaf to surveillance medicine. Particularly in this moment of emergence, where the generalisability of genetic information and its correlation to disease is still being confirmed, the presence of such-or-such genetic mutation or profile may be used to provide a set of probabilities about the future of an individual, even in the absence of disease. For some individuals, this provides a window of opportunity where therapeutic actions can be taken, as with hereditary dif fuse gastric cancer 26 . In others, it does little more than describe a genetic profile without therapeutic avenue, or without even necessary presaging the outcome. --- Roads not taken The development of a genetic explanation for diagnosis can for illness may be salutary. If it contains causal or therapeutic information with associated remedies, it may, as with the case of hereditary diffuse gastric cancer, mentioned above, save entire families. On the other hand, with each new genetic explanation, other avenues of explanation are closed down, and a foundation for the recognition and study of illness is cemented in a way which may resist later restructure. One poignant example of how this can be problematic is in the case of fibromyalgia. This contested and oft-debilitating disease has been dismissed by many sectors, including, frequently, main-stream medicine, for its fluid diagnostic nature. A disease "for which there is no blood test" does not achieve the same legitimacy as those with measurable features. The current diagnostic case definition is symptom based. In ICD 11, fibromyalgia is subsumed in the category of "Chronic widespread pain" and is described as "diffuse pain in at least 4 of 5 body regions and is associated with significant emotional distress or functional disability " 27 . A genetic marker would be on the one hand helpful, and on the other, problematic for those with the symptom, but without the marker. By changing diagnostic criteria, there is a reconstruction of explanation, of population and of impact which should not be dismissed. The social impact is significant. --- Diagnostic processes The previous pages have focused on diagnostic classification. However, as Blaxter pointed out in her seminal piece, diagnosis is at the same time classification and process. The entry into the world of diagnosis is triggered by the process: the person suffering for an ailment for which he or she would like a diagnosis. The pursuit of diagnosis will lead the patient to the doctor and at the same time will define their respective roles: doctor as interpreter and allocator of diagnosis ; patient as compliant, patient recipient. There are many models for the diagnostic encounter; my own leaning is towards Leder's "diagnostic hermeneutics" which describes assembling four texts to arrive at diagnostic interpretation. These include the experiential, narrative, physical and instrumental, each of which are troubled by the genetic turn 28 . The experiential text is the perception, kinesiological or other, of troubles, by the patient, brought to the clinician for interpretation. The narrative is the story that the patient tells about the troubles, augmented, altered or otherwise transformed by the clinical interview in which the doctor asks for further information. The physical examination and the "instrumental" or texts produced by diagnostic technology such as x-ray and laboratory findings, complete the picture that the doctor will then interpret. The genetic patient on the other hand disturbs this long-held pattern of clinical hermeneutics, the patient doctor relationship, and the order of texts. The scientist and the genetic counsellor take a dominant role in the interpretive endeavor; the patient may be symptomatic or not. The presentation may be via other family members, rather than via the individual herself. The social scholar should be interested in how this new arrangement disturbs power relations, distribution of resources, and diagnostic impact. Like the 20 th century move to "serum diagnosis" 29 which was robustly resisted by doctors of that era, there is a shift in how disease is understood and diagnosis delivered. Friedson underlined the importance of diagnosis in power arrangements when he wrote "Where illness is the ubiquitous label for deviance in an age, the profession that is custodian of the label is ascendant" 30 . Bourret et al. 31 describe how post-genomic platforms contribute to tensions among health practitioners over clinical jurisdictions, but also how they conflate the issues of diagnosis, prognosis and therapy. There is a more-than-diagnosis at play here, as at the same time, the diagnosis, linked of course to prognosis, is now also predictive, suggesting the likelihood of therapeutic success. --- Social consequences Following the social model of diagnosis, social framing of diagnostic categories and the process of diagnosing lead to social consequences, which, in turn feedback in to the way that diagnosis is framed, understood and delivered to patient by clinician. Diagnostic consequences can be salubrious, problematic or both. What is invariable is that the consequences, regardless of their type, will have an impact on how the condition is understood, explained, represented and ultimately diagnosed. legitimization That diagnosis legitimizes patient complaints is a well-known concept. The sick role, as described by Talcott Parsons, is linked to diagnosis. For the individual to have access to the sick role, they must have a recognized disorder, and comply with a prescribed treatment regimen 32 . The absence of diagnosis in the presence of illness is a heavy burden for the individual who does not receive the official sanction of the diagnosis. Joseph Dumit has described this in terms of "illnesses one has to fight to get." 9 These are conditions which have "fuzzy boundaries," are frequently mistaken for others, and are frequently either dismissed as being psychological in nature, or result in psychological distress, given the absence of diagnosis. Genetic medicine may be very beneficial for those who have to fight to be ill. The genetic explanation may, in an instant, legitimize suffering which was otherwise unsanctioned. With the power instilled in diagnosis for making sense of disorders, the possibility of genetic explanations in the absence of others fulfills an important legitimizing function. Organizations like the Undiagnosed Diseases Network put important weight on the role of genetics in explaining, understanding, and researching rare diagnoses. Not only do the genetics explain, they offer a sense of identity, regrouping, via genetic identity, people suffering from otherwise isolating conditions which cannot be generalized. exploitation New anxieties around the potential of genetic diagnosis makes the lay person ripe for exploitation by the marketing of genetic industry, at the same time as it places the e-scaped individual in a position to navigate medical information in ways previously unavailable. It's easy to send a scraping off to 23 and me, or ancestry.com without the medical gate keeper. Direct-to-consumer advertising about genetic risk, on the surface, increases disease awareness at the same time as it generates customers, anxious to find out the genetic truth about their future disease potential. Rather than create a calm, and measured approach to targeted conditions and populations whose outcomes may be improved by testing, it promotes referrals, demands and interpretations which may or may not be appropriate for the individual, the diagnosis or the situation. Those who are tested, and for whom variants are located, often participate in the creation of health social networks revolving around these genomic variants. They further elicit participation in the testing programmes, reinforcing and solidifying the networks and the commercial testing agencies at the same time as they create diagnostic awareness 33 . However, it would appear that this relocating of knowledge has resulted in new ways of consumption, blurring as Michael Arribas-Allyon has explained, the "boundaries between consumer, producer and expertise" 33 . The on-line testing kit, as one point of access for the consumer, and one commercial opportunity for the biotechnology industry, creates as byproduct an enormous database of genetic information and genetic customers which shape another powerful commercial incentive to re-cruit a worried subject. The biotechnology industry can then remarket its data to the scientific community 31 . The genetic data ensuing from individual tests escapes ownership of the person who created it, and in a style reminiscent of what happened to Henrietta Lacks' cervical biopsy. Lacks, who died of an aggressive form of cervical cancer in 1951 became an unwitting contributor to the enrichment of medical researchers who cultivated her cells, and finally patented them, generating millions of dollars in profit as they sent them to laboratories around the world. Not knowing how genetic data will be used creates an important ethical challenge. Genomic data has ended up in paternity suits, bone marrow transplant registers, and courts of law, with and without consent of the individuals 32 . --- Stigma and Blame The social model of diagnosis includes stigma as one potential consequence. Diagnosis can threaten the identity and self-esteem of the individual, as well as her potential status in social groups, or her worthiness for social roles. Being identified as ill, or potentially ill, can lead an individual to retreat, pursuing secrecy and concealment 33 . It can lead to discrimination on the basis of diagnosis and diagnosis potential, by employers, health insurance and even potential life partners. With genetic diagnosis, this stigma may extend well beyond the expression of the individual case. In communities with particular genetic risk, the association with a particular genetic profile casts wider aspersions, inferring moral and problematic behaviours on the wider group 34 . One salient example are the Ashkenazi Jews who have a high risk for a number of lethal and debilitating genetic diseases which have been managed, in recent times, by genetic testing programmes such as the Dor Yeshorim programme 35 . This community testing programme, which was designed as a means to reduce, if not eliminate the genetic disorders common in Jewish families, raises important questions about genetic responsibility, genetic couplehood, and indeed, stigma. While the intent of the programme is to reduce stigma; in one ultraorthodox group, being identified as a carrier added to, rather than decreased stigma in those so labelled 36 . Diagnostic stigma therefore may extend beyond the expression of the disorder to the potential to carry it. We cannot overlook the specter of eugenics, raised by the association of biological exploration with race-related diagnostics. As with all the other social features of a classification system, what can be driven as minority inclusion and social justice may at the same time be a way of serving dominant values and stereotypes 37 . Along with the genetic responsibility are complex problems of blame and self-blame, autonomy, and stigma. Identifying to whom, in a couple, a particular genetic disease cause may be assigned can result in, as fictionalized in the film, Still Alice, a deep sense of self-blame for what is to become a family illness 38 . As in Still Alice, the hereditability of genetic diseases can, in the words of Arribas-Ayllon and his team "can potentially alter and expose the -alignment of family relations" 39 . Family relations also provide opportunities for blame. The refusal to be tested for a genetic disorder may be seen as dereliction of duty, involve complex negotiation around disclosure and management of genetic knowledge. Blame features prominently, and "…is the distinguishing feature of how families manage and [to] disclose their genetic status and the attendant genetic risk for 'significant' others" 40 . --- conclusion There is much for the critical genetic diagnosis scholar to consider in a new era which contains many new fish hooks, but also much of the same. Diagnosis continues to provide a method of generalization about individual cases that is based on consensus, linked to power, reflective of social angst and beliefs about what it is to be healthy. It promotes particular configurations of illness at the expense of others. Post-genomic diagnosis also has the potential to open many doors, and provide explanations for what is currently unexplainable, diagnoses for what is currently undiagnosable. In so doing, it will give access to resources, identity, explanation and hopefully, therapy. Returning to Richardson, whom I cited in the introduction, being able to provide these diagnoses, to sort out the unexplained illness creates order from disarray 6 . But we must be careful about what kind of order we make here, so as not to simply heap one type of confusion upon another. Despite its promise, post-genomic diagnosis is unlikely to be able to heal all ills, or explain all disease. While this short commentary just scratches at the surface of what post-genomic diagnosis begs the social scholar to consider, it does provide a starting point for critical questions. Each advantage brought to the fore reveals at the same time, a potential disadvantage. Behind each putative empowerment resides an exercise of power. I have not offered theoretical perspectives from which to consider these topics. This has been done by others in the context of geneticization, biosocialization, bricolage and more… The critical social scholar will also need to think about what theoretical frames illuminate and conceptualize the array of factors that genetic diagnosis and its related biotechnologies raise. A critical scholar cannot look at any of the products of genomic medicine without considering the full picture. If we are to capture the promise of genetics, we must at the same time recognize its downsides. However diagnosis is formulated, be it via genetic explanations or microbiological ones, they are the product of social discovery, negotiation, and consensus. They are dispensed by social agents, vested with the power to label health and illness, and they have social consequences.
Resumo O diagnóstico é uma ferramenta essencial para o trabalho da medicina, uma vez que categoriza e classifica o padecimento do indivíduo por meio de um esquema genérico. No entanto, o diagnóstico também é um profundo ato social, o qual reflete a sociedade, seus valores e como dá sentido para o sofrimento e a doença. Considerar o diagnóstico de maneira crítica, assim como prática, é um trabalho importante dos sociólogos. Este artigo analisa como um modelo social pode fornecer uma ferramenta crítica para vermos o diagnóstico na era genômica. Explora como a formulação do diagnóstico, seja através de explicações genéticas ou microbiológicas, é o produto da descoberta social, negociação e consenso. Palavras-chave Sociologia do diagnóstico, Poder,
Background Child marriage is a global issue that cuts across countries, cultures and religions. The phenomenon has been experienced by a large number of women globally [1]. In spite of the widespread efforts to end child marriage, about onethird of the girls in low-and middle-income countries will most likely be married before age 18 due to attained progress levels which are not sustained in many countries and less than 10% of girls will get married before they attain 15 years of age [2,3]. In resource-constrained settings, the prevalence of child marriage is alarming. More than 67 million women aged 20-24 years were married as adolescents by 2010, with 20% of them from Africa. The indication was that 14.2 million adolescents, who are less than 18 years had been married off annually; making almost 39, 000 young women married on a daily basis [2]. This will increase to about 15.1 million girls per year, beginning from 2021 to 2030 [2], should the current trend be allowed to persist. Child marriage is rooted in communities' sociocultural practices and is an act of human rights violation [2,4,5]. To attain Sustainable Development Goal 5 in Africa, there is much to be done to reduce the prevalence of child marriage, especially in sub-Saharan Africa. Child brides are prone to domestic violence and are less likely to participate in family decision making due to immaturity and lower socioeconomic status [6][7][8]. One of the major problems with child marriage is the pressure to raise children while they are still children themselves and have limited knowledge about sexual and reproductive life. Research evidence indicates that child marriages are associated with many adverse reproductive outcomes such stillbirth, miscarriage, stunting, underweight, unwanted pregnancies, and abortion [9]. Childhood pregnancy put both the mother and her baby at high risk of adverse reproductive outcomes [2,10]. More so, complications in pregnancy and delivery are prominent determinants of morbidity and mortality among young women in lowand middle-income countries [2,9,11]. International agreements to protect the rights of young women in child marriage include the 1989 United Nations Convention on the Rights of the Child [4] and the 1990 African Charter on the Rights and Welfare of the Child [5]. Also the Programme of Action adopted by the International Conference on Population and Development in 1994 has as part of its activities the protection of young women in child marriage [12]. Article 16 of the Convention on the Elimination of all Forms of Discrimination Against Women states that "women should have the same right as men to freely choose a spouse and to enter into marriage only with their free and full consent" and that the "betrothal and marriage of a child shall have no legal effect [2]. In 2010, about 158 countries confirmed that 18 years was the minimum legal age for marriage. However, in 146 countries, state or customary law allows girls younger than 18 to marry with the consent of parents or other authorities; while in 52 countries, girls under age 15 can marry with parental consent [2]. In 2014, almost all African Union member countries signed some of these laws which emphasise that the minimum age for marriage is 18 [13]. Overall, the political will to implement marriage laws varies substantially across sub-Saharan African countries. Whereas about 90% of the countries in sub-Saharan Africa region have legislated a minimum marriage age of 18 years for women, however, one-third of them permit marriage below age 18 years with parental consent, hence creating a compromise for parents to marry off their daughters before they attain adult age [14]. Unfortunately, marriage laws in several sub-Saharan Africa countries have provisions that allow children to marry in certain circumstances such as under customary law or if they become pregnant irrespective of their age. The incoherence in the legal proscriptions is challenging because child marriage is a long term practice which is culturally acceptable as a rightful approach to protecting young women from premarital sex and the consequences of unintended pregnancy and sexually transmitted infections [15]. Several factors promote child marriage, including incentives to marry out young women to lessen the economic burden on disadvantaged households [16]. Furthermore, the needs to reinforce social ties and protect daughters from sexual adversity as well as the believe of some parents that they can improve their social status by marrying off their daughters to a well-off family [17,18], are among the leading factors promoting child marriage. Moreover, women's educational attainment, wealth status, religious belief, and place of residence are associated with child marriage [19,20]. Elsewhere, the practice of child marriage was found to be most prevalent among young women who live in disadvantaged households, lack school education, and dwell in rural residence [21]. Emerging evidence also reveals that drivers of child marriage are complex especially if it is viewed from the perception of those impacted. Not all girl child marriages are arranged; many girl brides may be interested in the relationship. Also, low investment on girls' education, social norms, sexual relations, unplanned pregnancy, incomplete education, poverty and unemployment among girls have been identified as factors promoting child marriage [22][23][24]. Despite efforts, policies and intervention programmes put in place by many countries in sub-Saharan Africa, child marriage remains an issue of grave concern. The problems associated with child marriage led to the post-2015 Sustainable Development Goal-3 targeted to help many countries attain landmark progress towards ensuring healthy lives and promoting the well-being for all at all ages [25]. The SDG-3 is vital because child marriage denies young women the privilege of developing their potentials as productive and healthy individuals [26]. It also entrenches young women in poverty and limits their life choices [2,27]. In spite of the problem of child marriage and its health, reproductive and social outcomes, the issue has not been explored adequately, and the dearth of literature on it may hinder effective efforts, policies and intervention pragrammes especially in sub-Saharan African countries. Studies have revealed that reproductive health programmes targeting youth may not reach those who are mostly at risk [9]. This stresses the need for more research on women who experience child marriage. This study aims to examine the influence of child marriage on reproductive outcomes using DHS datasets from 34 countries. --- Methods --- Data source This study utilised pooled data from the latest Demographic and Health Surveys conducted between 2008 and 2017 across 34 sub-Saharan Africa countries. Demographic and Health Surveys are comparable nationally representative household surveys that have been conducted in more than 85 countries worldwide since 1984. The DHS were initially designed to expand on demographic, fertility and family planning data collected in the World Fertility Surveys and Contraceptive Prevalence Surveys, and continue to provide an important resource for the monitoring of vital statistics and population health indicators in low-and middle-income countries. The DHS collects a wide range of objective and selfreported data with a strong focus on indicators of fertility, reproductive health, maternal and child health, mortality, nutrition, and self-reported health behaviours among adults [28]. In this profile, the study presents an overview of the DHS, along with an introduction to the potential scope for these data in contributing to the micro and macro epidemiology fields [29]. DHS datasets are available for researchers through DHS at http://dhsprogram.com/ data/available-datasets.cfm. See Table 1 for details of survey countries. --- Measurement of variables --- Outcome v0061riables 1. Early fertility: This was measured by childbirth within the first year of marriage using the question about the age at first birth; women who had the first baby within the first year were classified as early, not having childbirth in the first year of marriage, was classified as not early [9]. The association between early fertility and age at first marriage would be of interest. 2. Rapid repeat of childbirth: This was measured by whether the first preceding birth interval was less or more/equal to 24 months. The preceding birth interval is calculated as the difference in months between the current birth and the previous birth, counting twins as one birth. Birth interval of less than 24 months has implications for the health of the mother and the child. Closely-spaced and higher-order births pose a greater risk of infant and child mortality [30]. Psychosocial, educational, [33,34]. About 3.9 million girls between the ages of 15 to 19 engaged in unsafe abortion every year [32]. Also, evidence revealed the relationship between child marriage and stunting, underweight, miscarriage, and stillbirth [6,9]. 5. Modern contraception: It was assessed with a question about forms of modern contraception such as hormonal methods, barrier methods, and female sterilisation and so forth to identify if a woman had ever used a modern contraceptive method or not. The use of contraceptives can prevent early pregnancies and adverse reproductive consequences [35]. In developing countries, 23 million girls between the ages 15 to 19 experience unmet needs for modern family planning methods [32]. If these needs are met among the adolescents at risk, it could prevent 2.1 million, 3.2 million and 5600 unplanned births, abortions, and maternal deaths, respectively every year [32]. High fertility is risky not for the health of children and mother, but also affects capital investment, economic growth and is a treat to environmental sustainability. 6. Lifetime fertility: The total number of births during the lifetime was measured. Participants were classed as having high fertility if they had ≥3 childbirths, which was the mean value for the variable. As the population of adolescents increases globally, it is projected that by 2030, there will be an increase in adolescent pregnancies with a large percent of it coming from Africa [36]. 7. Any childbirth: This was measured using "total children ever born"; where those who reported at least 1 were categorised as Yes, and 0 was categorised as No. High maternal mortality is associated with higher parities and older and younger ages [30]. --- Explanatory variable The explanatory variable was the age at first marriage. The variable was classified as child marriage when the respondent was < 18 years at marriage [1] and adult marriage when the woman was ≥18 years. The study considered women aged 20-24 only as evident from studies conducted on child marriage [9]. This enhances and affords comparison with similar studies. This way, women below age 18 will not be considered, and biases due to selective survival and forward displacement of age at first marriage would be minimized [37].. In addition, it minimises the possibility of errors due to recall which may occur as ages get farther away from 24. Married women in this study are referred to as ever-married, legally married or those living with their husbands in a consensual union. --- Covariates This section provides a profile of the background characteristics of respondents. The analysis of these background characteristics provides the socio-economic context within which the age at marriage, fertility, and fertility-control issues are examined. --- Ethical consideration This study used publicly available data. The ethical procedures for data collection were the responsibility of the institutions that commissioned, funded, or managed the surveys. All DHS are approved by ICF International and Institutional Review Board to ensure that the protocols comply with the U.S. Department of Health and Human Services regulations for the protection of human subjects. Therefore, this study did not require further ethical approval. --- Analytical procedure We calculated sampling weights to account for stratification and clustering in the sample design. Individual to standard DHS question was managed and analysed. Tests of multicollinearity were done. The study did not violate the multicollinearity assumption with a tolerance value of not less than 0.10. In addition, the correlation between each of the independent variables is less than 0.7. Distribution of respondents' marital status by socio-demographic characteristics was examined. This is in line with the evidence from the literature [9,40]. The associations between child marriage and fertility outcomes were examined from the ever-married subsample to estimate odds ratios and 95% CIs using the binary logistic regression models to calculate the unadjusted models and those adjusting for demographic characteristics . A significant level of 5% was used in this study. STATA version 14 was used for data analysis. --- Results This section presents socio-demographic characteristics of the respondents -the sample of women aged 20-24 . The results showed about a quarter and one-fifth of women reported ages 20 and 22 years, respectively. While those who reported each of the other ages were less than one-fifth of the total respondents. About onethird of the study population lived in rural areas , and Christianity was reported as the dominant religion among the sampled countries in sub-Saharan Africa. Women with higher education were only 5.6% in this study, while 25.7% of the women had no formal education, 30.9 had primary education, and 37.7% had secondary education. Women from male head households were 73.7% women from the poorest and poorer household categories constituted the same percentage each . Women in the richest category constituted 24.1% of the sampled population. More than half of the women indicated were currently working. Women who read newspaper or magazine were only one-quarter of the total women while more than one-third claimed they listened to the radio. Respondents who indicated they watched television were almost half of the total sampled population. See Table 2 for details. An examination of child marriage by the age of women revealed that age 20 had the highest child marriage, followed by age 22 , age 24 , age 23 and age 21. Child marriage was more pronounced among respondents in the rural areas compared to urban areas [41] and also among Muslims and other religious adherents compared to Christians . The percentage distribution of child marriage by educational attainment followed a negative pattern -the higher the educational attainment, the lower the percentage of child marriage. The highest incidence of child marriage was among the respondents with no formal education , while the lowest was found among respondents with higher education . The percentage distribution of child marriage by wealth status followed the same pattern. The higher the wealth status, the lower the percentage of child marriage. Child marriage reported in the poorest household category constituted 52.9% of the sampled population, while those in the richest household category constituted 19.2% [23,38,39,42]. Overall, distribution of child marriage according to the sex of the household heads revealed a higher incidence of child marriage among households headed by male compared to those headed by a female . More than one-third of respondents who indicated they were currently working and those who indicated otherwise reported child marriage. Among the women who listen to the radio , about 31.4% had child marriage, while those who do not listen to the radio had higher child marriage . Only 25.1% of the women who watch TV reported child marriage, while 47.2% of those who do not watch TV experienced child marriage. Overall, media users had a reduction in child marriage, compared to nonusers. See Table 2 for details. Results on the prevalence of child marriage showed large disparities across sub-Saharan African countries between 16.5 to 81.7%. The prominent countries in child marriage were; Niger , Chad , Guinea , Mali , Nigeria . However, Rwanda reported 16.5%, Lesotho had 29.3%, and Namibia showed 31.3%. Details of women's age at marriage below 18 years are presented in Fig. 1. Based on the results, about 56.1% of child marriage had a child in the first year of marriage; for adult marriage, approximately 78.3% gave birth in the first year. More so, about 28.0% of child marriage had childbirth < 24 months of first preceding birth interval. Approximately 34% of child marriage had at least 3 children, compared to 7.2% of adult marriage with the high number of children ever born. Whereas, 20.4% of child marriage had used modern contraceptive methods, compared to about 26% of adult marriage that reported lifetime modern contraceptive methods use. Results showed that 22.3 and 11.6% of child marriage had lifetime unintended and terminated pregnancies, respectively. Further, about 95.6% of child marriage had childbirth. See details in Table 3. The women who experienced child marriage showed 85% reduction in the odds of childbirth in the first year of marriage, compared to those of adult marriage after adjusting for other covariates . Women of child marriage had 14% reduction in childbirth < 24 months of first preceding birth interval, compared to women who married at ≥18 after adjusting for other covariates . Fig. 1 Prevalence of child marriage across Sub-Saharan Africa countries Further, women of child marriage were 17.00 times as likely to have ≥3 number of children ever born , compared to women who married at ≥18 after controlling for other confounders . Child marriage women were 1.154 times as likely to use modern contraceptive methods, compared to adult married women after controlling for other confounders . Women of child marriage were 1.53 times as likely to have lifetime terminated pregnancy, compared to women who married at ≥18 after adjusting for other covariates . See details in Table 4. Adjusted for age, place of residence, religion, education, sex of household head, wealth index, working status, read newspaper/magazine, listen to the radio, watch TV. --- Discussion This study extensively explored the prevalence of child marriage and its association with fertility and fertility outcomes throughout sub-Saharan Africa countries. The findings revealed an unacceptably high and disproportionate prevalence of child marriage across several sub-Saharan Africa countries [38]; Niger, Chad, Guinea, Mali, Nigeria, Sierra Leone, Burkina Faso, and Liberia were among the leading countries with child marriage. In contrast, each of these countries, Rwanda, Lesotho, and Namibia, had below one-third of their women who were married as children. These findings suggest large disparities in the age at marriage across countries [38], implying that many countries still allowed marriage at very young ages which could mainly be orchestrated by socio-cultural factors. Our study showed that about half of sub-Saharan African women aged 20-24 years from rural residence, religious beliefs other than Christianity, less educated, disadvantaged households or those who do not read newspaper or magazine, listen to the radio or watch television were married before the legal age of 18 years and most-atrisk or vulnerable to the practice. These findings are consistent with several reports of previous studies conducted in low-and middle-income countries [37,41]. It is commonly reported that age at marriage increases with higher socio-economic conditions [43]. This study corroborated findings from other studies that low education, rural residence, low wealth status, disadvantaged households are factors responsible for early child marriage [16][17][18][19][20][21]. High levels of child marriage persist across several sub-Saharan African countries despite legislative efforts to prevent the practice. It is surprising that though the laws represent a crucial precedence for the protection of human rights and have lasted for decades; our findings suggest that they are inadequate to end the practice. Unfortunately, neither the recent progress in economic and women's development, nor existing policy or programmatic efforts seems to prevent child marriage in the region [2,4,12,13,44]. Findings on the association between child marriage, fertility and fertility outcomes showed that women of child marriage had reduced odds in childbirth in the first year of marriage and childbirth less than 24 months first preceding birth interval in comparison to the reference groups. The reduction in the odds of childbirth in the first year of marriage among women of child marriage could be partly attributed to physical and biological immaturity. This may have a great adverse effect on their health and social development. Child marriage has been associated with an increased incidence of poor health [38]. Childbrides are exposed and forced to engage in marital issues, chores, and to take up adult responsibility they have not really prepared to undertake and are not matured enough to undertake. Immaturity of childbrides socially, psychologically, and physiologically may lead to adverse reproductive outcomes. Our understanding is that higher contraceptive prevalence rate leads to lower rates of unintended pregnancy, which is in theory preventive of higher fertility. Nonetheless, it doesn't account for fertility preference as some women may use modern contraceptive and still desire high parity. In light of these observations, we recommend that policy instruments be developed to correct 'fertility behaviour' as an integral part of the strategies to increase the average age of marriage. Previous studies from low-and middle-income countries showed that married adolescent women have higher lifetime fertility, increased use of modern contraceptive methods, more terminated pregnancies, and childbirth than their adult counterparts [41]. High fertility and abortion are inimical to sound sexual and reproductive health of women. Child marriage put women at increased risk of pregnancy complications and maternal mortality. Complications due to childbirths and pregnancies are part of the leading factors in maternal mortality among women aged 15-19 and 20-24 in the world [38,45,46]. It has both long and short term consequences most especially in sub-Saharan African countries where there are/ is a high level of poverty, poor/ inadequate health facilities , low prevalence of contraceptive use, sexual and reproductive education. Negative consequences of child marriage include poor health, low birth weight, premature births and nutritional deficiencies [47]. Increase in the use of modern contraceptive among women married at a young age could be attributed to attainment of the desired number of children at an earlier age, as evident by their high fertility. The results are in line with previous studies that reported an association between child marriage and women's health or fertility outcomes [9,10,26,41,[48][49][50]. More so, media use, education, and economic levels were also significant covariates of child marriage infertility outcomes among sub-Saharan Africa --- Strength and limitation This study utilised multi-country data coverage with high response rates which can be generalised to other agegroups or country contexts. DHS use standard data collection procedures to ensure reliability, and that survey estimates accurately represent the health situations. In addition, DHS used multistage probabilistic sampling methodology to select clusters and households from geographic-based sampling frames that cover the entire territory of participating countries, a design that translates into naturally occurring population hierarchies. However, this study was based on self-reported data which is subject to recall bias and social desirability [51,52]; for example, there might be errors in reporting respondents' age at marriage due to the fact that registration of age system is not documented. In addition, the variable for pregnancy termination did not differentiate between miscarriages and abortion and thus blur the true association that exists between the forms of pregnancy termination and child marriage. Also, the study is limited in its discussion about country differences. Additionally, there was about a nineyear gap in the collection of the data from various countries, and DHS data are cross-sectional, and causality cannot be examined. Finally, we did not consider trichotomizing the exposure variable to < 15, 15-17 and 18 to test for differences by early and very early marital ages. That being said, within policy arena, the focus is usually on zero tolerance on child marriage and not differentiating nor attaching ranking or importance to any form early child marriage, such as labeling early versus very early. --- Conclusion This study showed that child marriage remains highly prevalent in many sub-Saharan Africa countries. Improved family-planning interventions geared towards married adolescents would help a great deal to tackle the occurrence of child marriage and its outcomes. Prominent factors of child marriage such as poverty and lack of education should be addressed to promote personal development among the girl-child to prevent early marriage and its adverse fertility outcomes. The findings of the study further suggest that health programmes for innovative interventions aimed at discouraging early marriage should be formulated to educate young girls about the negative outcomes of early motherhood. Furthermore, modern contraceptive methods could help reduce child marriage, especially among women who enter marriage due to unwanted pregnancy. Overall, global consensus points to laws restricting the minimum marriage age at 18 years are essential, and considerable evidence has associated child marriage to adolescent sexual and reproductive health problems. Passing direct and unconditional laws against child marriage to arrest the socio-cultural forces that perpetuate it remains a fundamental approach in curbing the practice in sub-Saharan Africa. Moreover, social change programmes on child marriage, targeting unmarried young women should also be broadened to accommodate interventions for men who are pursing children for marriage. --- --- Authors' contributions SY contributed to the study design, the review of literature, and analysis of literature, manuscript conceptualisation and preparation. GB and EKO critically reviewed the manuscript for its intellectual content and contributed to data analysis as well. SY had final responsibility to submit for publication. All authors read and approved the final manuscript. --- --- --- Competing interests The authors declare that they have no competing interests. ---
Background: The issue of child marriage is a form of human rights violation among young women mainly in resource-constrained countries. Over the past decades, child marriage has gained attention as a threat to women's health and autonomy. This study explores the prevalence of child marriage among women aged 20-24 years in sub-Saharan Africa countries and examines the association between child marriage and fertility outcomes. Methods: Latest DHS data from 34 sub-Saharan African countries were used in this study. Sixty thousand two hundred and fifteen women aged 20-24 years were included from the surveys conducted 2008-2017. The outcome variables were childbirth within the first year of marriage (early fertility), first preceding birth interval less than 24 months (rapid repeat of childbirth), unintended pregnancy, lifetime pregnancy termination, the use of modern contraceptive methods, lifetime fertility and any childbirth. The main explanatory variable was child marriage (< 18 years) and the associations between child marriage and fertility outcomes were examined from the ever-married subsample to estimate odds ratios (ORs) and 95% CIs using binary logistic regression models. Results: In the study population, the overall prevalence of women who experience child marriage was 54.0% while results showed large disparities across sub-Saharan African countries ranging from 16.5 to 81.7%. The prominent countries in child marriage were; Niger (81.7%), Chad (77.9%), Guinea (72.8%), Mali (69.0%) and Nigeria (64.0%). Furthermore, women who experience child marriage were 8.00 times as likely to have ≥3 number of children ever born (lifetime fertility), compared to women married at ≥18 years (OR = 8.00; 95%CI: 7.52, 8.46). Women who experience child marriage were 1.13 times as likely to use modern contraceptive methods, compared to adult marriage women (OR = 1.13; 95%CI: 1.09, 1.19). Those who married before the legal age were 1.27 times as likely to have lifetime terminated pregnancy, compared to women married at ≥18 years (OR = 1.27; 95%CI: 1.20, 1.34). Also women married at < 18 years were more likely to experience childbirth, compared to women married later (OR = 5.83; 95%CI: 5.45, 6.24). However, women married at < 18 years had a reduction in early childbirth and a rapid repeat of childbirth respectively. Conclusion: Implementing policies and programmmes against child marriage would help to prevent adverse outcomes among women in sub-Saharan Africa. Also, social change programmes on child-marriage would help to reduce child marriage, encourage the use of modern contraceptive, which would minimize lifetime terminated pregnancy and also children ever born.
Resumen Objetivo. Identificar el efecto de posiciones de centralidad de la red social sobre el uso de tabaco en adolescentes de preparatoria en Tonalá, Jalisco. Material y métodos. Estudio longitudinal de redes sociales sociométricas. Participaron 486 bachilleres y 399 . La encuesta incluyó: componentes de redes sociales, tabaquismo y características sociodemográficas. Se calcularon medidas de centralidad de redes sociales y utilizó regresión logística multivariada. Resultados. El consumo alguna vez de tabaco , estrato socioeconómico marginado-bajo y vínculos recibidos predijeron el tabaquismo; mientras que los vínculos enviados y la diferencia entre vínculos enviados y recibidos protegieron contra el tabaquismo. Conclusión. Nombrar más amigos que ser nombrado por otros protegió contra el tabaquismo. Los estudiantes populares, aquellos con muchos nombramientos, tuvieron mayor riesgo de ser consumidores. La inclusión de líderes con influencia podría ser una estrategia eficiente en la diseminación de mensajes preventivos. Palabras clave: redes sociales; uso de tabaco; adolescentes; centralidad; amistad; presión de pares salud pública de méxico / vol. 54, no. 4, julio-agosto de 2012 Ramírez-Ortiz MG y col. T obacco use is a significant public health problem for adolescents. Among Mexican adults, tobacco use causes more than 60 000 deaths and generates multiple chronic diseases annually. 1 The National Addictions Survey in Mexico 2 showed that 8.9% of adolescents were active smokers in 2002, and 8.8% in 2008. 3 The Junior and Senior High-School Student Survey in Mexico City reported "ever in your life" tobacco use in boys was 51.1% in 2003 and 47.6% in 2006, while prevalence for girls was 50.1% and 49.4% for the same years. Moreover, "current use" in boys fell from 23.4% in 2003 to 19.7% in 2006 and from 22.2% to 16.4% in girls. 4,5 An important factor associated with adolescent's smoking is having friends that smoke. 6 To understand factors associated with adolescent tobacco use, socialnetwork methods were used to measure an adolescent's position in the social network. Social network methods can be used to measure social relations and interactions that influence tobacco use. [7][8][9] Also, it is a useful guide for the development of interventions for prevention and treatment of addictions. [10][11][12] The social network model is based on relationship systems and communications. The basic data for analysis are the links between nodes . Studies of social network analysis on smoking have been analyzed from two perspectives: 1) social influence from others derived from group interaction 13 or sociometric positions 14 and 2) actor centrality. 15,16 Social influence studies have repeatedly documented that being exposed to smokers increases smoking risk. In addition, studies have shown that tobacco use was higher among students having links with group members, being group members, liaisons, 17,18 dyads, 14 or even being isolated. 13,14,19 In one notable 32-year cohort study, smokers were increasingly moved to the periphery of the social network, whereas non-smokers moved to the center. 20 Perhaps the most common indicator extracted from social network data is centrality. The term "centrality" is restricted to the idea of "central actor". It indicates positions in which actors occupy a prominent place or strategic position in the network. 21 Central people may have a greater influence on the opinions and behaviors of others and at the same time may be influenced by others in the network. 22 In this regard, central people can induce the persuasive influence of other peers by signaling cultural acceptability for the behavior. 10 Centrality, measured as the frequency a person was named as a peer, has been associated with substance use. Valente 23 reviewed studies on the effect of school-based social networks on substance use and found that use is the result of the interaction among peers and their degree of centrality. 24 In this interaction, peer influence 24 and the normative effect of substance-using friends and close relatives were important. 25 Another network study considered two different definitions of centrality: popularity, or the number of friendship nominations received from others and expansiveness, or the number of friendship nominations sent to others . 15 The study showed that popular people were more likely to be and to become smokers. 16 Some studies have found an effect of centrality measurements on psychoactive drugs use. 26 Whether the effect of centrality measurements such as out-in-degree and out-in-closeness may explain this relationship has not been evaluated. The aim of this study was to identify the effect of central positions in social networks on current tobacco use among students of a high-school. The findings will provide information for planning strategies for the prevention of tobacco use. --- Material and Methods Study design and sample: A longitudinal study was conducted in order to collect sociometric social network data 21 in one high-school in Tonalá, Jalisco, Mexico. Tonalá is located in the Guadalajara metropolitan area but some semi-urban traits persist and the lowest strata of the social pyramid predominate. Tonalá High-school had a student body of 2,650 students in 2003, and 2,702 in 2004, from first to sixth semester. From June to July 2003, a total of 490 students from first and second semester were invited to participate in the study. Of them, 486 accepted and 399 were followed-up in 2004. Procedures: School officials and students gave their written consent. The project was approved by the Local Health Research Committee at the Mexican Social Security Institute. --- At the time frame of the study, school regulations prohibited smoking A self-administered questionnaire was applied at baseline and approximately one year later . Variables: Tobacco use was measured with the following questions: have you ever smoked? and do you smoke currently? . salud pública de méxico / vol. 54, no. 4, julio-agosto de 2012 --- Social networks and tobacco use Artículo originAl Social network data were collected by asking for the name and sex of each person's six best friends in the school, and communication frequency according to the Pearson and Michell 13 format. Social network indicators included: Density : number of links in the total networks, expressed as a proportion of the maximum number of possible relationships within the networks. Density formula is l/n /2 where n is the number of nodes and l the number of lines present. 21 Subgroup density: proportion of connections between actors of an asymmetric valued matrix that share an attribute. 27 Centrality measurements proposed by Freeman 28 and Valente 29 were calculated and included in-degree, out-degree, in-closeness and out-closeness. Also, two variables of difference were generated: out-in-degree and out-in-closeness . Measurement's definitions are described in Table I. Peer pressure was defined as the subjective experience of feeling encouraged by people of one's own age to do certain things regardless of whether one wants to do them. 30 The measure included 11 items with a 5-point scale ranging from "strongly disagree" to "strongly agree". --- Socioeconomic stratum was evaluated according to Basic Geostatistical Areas Statistical Analysis: Social network structure analysis was performed using NetMiner II 2.4.0.* Chi-square tests were calculated to evaluate prevalence changes --- Undirected measurement Degree Is characterized as a local centrality measure because it can be calculated without reference to the overall structure of the network. Is the number of links to-and from a person. Measures communication activity. --- Closeness Measures the average distance a node is from all other nodes in the network. Someone who is closer to everyone else, on average, is in a central position. Measures the independency or efficiency of communication. --- Directed measurement In-degree Number of ties a person receives. Identifies opinion leaders in social networks and popularity in friendship networks. Indicates influence as that is who might try to influence a person. Useful to measure social integration. People with a high value can be recruited to establish a critical mass in favor of a new behavior because they are role models for many people. Out-degree Number of ties sent to others. Represents selection as it indicates whom they select as friends and measures a person's socialness or sociality. Out-in-degree* Difference between out-degree and in-degree. A high value represents a person that has more connections to friends than receiving these connections from friends. Indicates a person who is more sociable than popular. In-closeness Measures the links directed to a person. Is the shortest path that friends go through to reach a specific friend. The highest value represents a person that others can reach in the fewest number of steps to him/her. People with a high value can be recruited to ensure diffusion spreads to the maximum number of people. --- Out-closeness Is the shortest path an actor goes through to reach his or her friends. The highest out-closeness is the person who can reach others in the fewest number of steps. Out-in-closeness* Difference between out-closeness and in-closeness. Is an actor closer to his/her friends than these are to the actor. A high value represents a person that is closer to their friends than they with him. --- Table I --- Centrality measurements Adapted from Freeman L, 1979 28 and logistic regression to evaluate associations. The dependent variable was current tobacco use in 2004 and the independent variables were the centrality measurements in 2003 , peer pressure in 2003, ever tobacco use, occupation, age in 2003, socioeconomic stratum, and sex. A Hosmer-Lemeshow test was used to evaluate goodness-of-fit. Multicollinearity was not observed . Statistical analyses were performed with SPSS 15.0 and Stata 9.0. --- Results At baseline , 486 freshmen highschool students participated in the study. The baseline refusal rate was less than 1.0%. After one-year , 399 students were followedup. Attrition was due to students exclusion due to failing grades or school absenteeism , and voluntary withdrawal from school . There were no attrition differences by sex and socioeconomic level in the follow-up; however, greater attrition was observed in students working and studying in comparison with those that remained in the study . There was greater baseline ever tobacco use among those lost to follow-up than those who remained in the study . In-degree of those who withdrew from the study was lower , than among those who remained . The mean age at baseline was 15.7 years , whereas for the follow-up, it was 16.6 years . Tobacco ever use was 49.4% at baseline, 49.9% at follow-up . Changes in current tobacco use by socio-demographic variables during follow-up are shown in Table II. Overall network density means increased from 0.011 + 0.14 to 0.015 + 0.16 , indicating that 1.1% of all possible connections among network members existed during the first year, and 1.5% in the second. Table III reports sub-group density rates in 2003 and 2004 indicating that densities were greater within homogeneous groups than among heterogeneous groups . The differences of density among smokers and nonsmokers in both years were statistically significant. Peer pressure was higher among smokers both years. At one year of follow-up there was a reduction of 5.37 among non-smokers . Smokers had a lower out-degree in comparison with non-smokers at baseline, however at year two it was the opposite and an increase of 0.63 was found among nonsmokers . Smokers had a higher in-degree in comparison with non-smokers at baseline; this was the opposite in the second year with a 0.78 among non-smokers . Non-smokers had a higher out-closeness in both measurements; only in 2003 there was a difference . At follow-up there was an increase of 2.57 among smokers . In-closeness was higher in non-smokers in both measurements with an increase of 2.46 at follow-up . At baseline the out-indegree was lower among smokers . However, at follow-up it was higher, with an increase of 3.96 . At both times non-smokers had higher out-in-closeness with a reduction of 1.96 in average . Models of centrality positions associated with current tobacco use are shown in Table V. In the first model, in-degree, out-degree, in-closeness and outcloseness were evaluated. Tobacco ever use in 2003 and in-degree were associated with current tobacco use in 2004 . In contrast, out-degree was a protective factor for current tobacco use in 2004 . In the second model, out-in-degree and out-in-closeness were evaluated. Variables associated with tobacco use in 2004 were: tobacco ever use in 2003 , marginalized-low stratum and out-in-degree . --- Discussion Having more nominations to peers rather than receipt of these nominations was a protective factor for tobacco use. In addition, simply as naming a high number peers was also protective for tobacco use. On the other hand, being named by peers was a risk factor to becoming a smoker. The protective effects of naming Results for out-in-degree related to tobacco consumption have not been reported before, and indicate that the difference between naming friends and being named may be an important indicator for social position that has an influence on risk behavior. Our results about in-degree related to tobacco use are similar to findings reported by others. 15,16 Valente and others found that students who were popular in the sixth and seventh grades in the US had greater probability of becoming smokers than less popular ones. Moreover, popular students at schools with high tobacco-use prevalence were more at risk to smoke; this indicates that tobacco use can be attributable to the students' position in the network structure to the extent that position indicates the person's power and susceptibility of being influenced, 15,16 or the process of selecting peers with attributes similar to oneself. 31 In this regard, a popular person is one who receives connections or friendship nominations and is a vertex of high in-degree. 32,33 In a cohort study, smokers moved to the network periphery perhaps due to the advent of public health campaigns against tobacco consumption and rise in anti-tobacco norms. 34 Using networks sociometric positions, smoking was higher among dyads and isolates and it was lower among highercategories of popularity. Maybe, in these instances, cohesive groups applied peer pressure in the opposite direction to enforce non-smoking behavior. 14 Our results about marginalized-low stratum related to tobacco use are similar to others. These studies demonstrated differential tobacco consumption according to socioeconomic strata, with a significant association with the consuming peer's normative influence. 35,36 Subgroup density results show that there are subgroups of smokers and nonsmokers within the student network, allowing for the hypothesis that greater cohesion among current tobacco consumers over time suggests that dense social ties can reinforce the use norm over time. 26 This hypothesis also suggests an interaction context in which mutual influence may occur that favors use 6 leading to the formation of subcultures in which tobacco use is a part of their identity. This may influence adolescents in the group to have access to cigarettes, to approve use, and to have mutual emotional support, not unlike that which occurs with other substances. 26,37 The subculture may also contribute to the development of other risk behaviors. 38 Ever tobacco use predicted a greater risk of current tobacco use. Ever users were more likely to be lost to followup. It is possible that a higher current tobacco use in the follow-up measurement might have increased the associations we find between current tobacco use and centrality since in-degree was also associated with loss to follow-up. Current tobacco-use prevalence in this study was greater than national prevalence 2,3 and less than current-use prevalence among Mexico City highschool students 4,5 which can be explained to the fact that use is greater among youth in contexts of greater urban development. Limitations: attrition was caused mainly by student dropouts, which was not possible to control. Also, it was not practical to follow-up adolescents who did not remain in the study, since they were no longer exposed to the student network. Attrition in the follow-up is accompanied by differences in in-degree and tobaccoever-used participants who remained in the study and those who did not, which may cause a selection bias. 39 Also, smoking, in our study, was defined as current tobacco use, while others consider it as smoking at least one cigarette every day in the past 30 days. In our case, as stated by others, we considered that any use is abuse. 40 The findings of this study describe the formal student network structure that could be complemented by exploring the possible influence of networks outside the school such as the family, 41,42 and neighborhood friends. 34,43,44 It would also be worthwhile to analyze the formation of subgroups by use patterns: light smoker, moderate smoker, and heavy smoker. 2 Naming more friends was protective for use whereas being named as a friend increased use indicating that smoking may become a shared norm and spread throughout the entire student network over time. Therefore, educational and health promotion programs should prevent initiation into tobacco use and look for strategies to stop the spread of the normative tobacco-use culture. To stop and prevent tobacco use effectively, popular tobacco-consuming students should be convinced and integrated so they will support antismoking norms just as programs need to create a cultural climate where smoking is not perceived as something desirable. 14 salud pública de méxico / vol. 54, no. 4, julio-agosto de 2012 Ramírez-Ortiz MG y col. Although our results show that popular students have a higher probability of smoking, this position has been used in interventions to reduce tobacco consumption. Opinion leaders are selected based on in-degree position because they have a prominent position in social networks structure, and may influence towards healthy behaviors. 29 In these interventions opinion leaders are trained to direct educative interventions at the informal interactions with their peers. [10][11][12] Also, recently approved Mexican regulations restrict tobacco use in public places, and favor non-smoking promotion in schools, which we hope will contribute to a more effective control.
The effects of social networks on tobacco use among high-school adolescents in Mexico.
Intimate partner violence is a considerable health and social problem that is often concomitant with other societal issues such as child maltreatment . The needs of women and children who are IPV victims are numerous and complex . When the judicial system becomes involved in the situation, these needs are often amplified because cases are dealt with simultaneously in several branches of the system involving diverse actors whose combined interventions may be incoherent and even contradictory . These collaborative contexts, which we defined as sociojudicial due to the intertwining of psychosocial and judicial system responses, are the focus of this article. Indeed, dues to the complexity of IPV and the many actors involved in judicialized situations, there is broad consensus that collaborative practices are essential to the resolution of these situations . Collaborative practices have the potential to be more comprehensive and coherent in addressing the distinct needs of family members struggling with IPV . These practices can also initiate systemic changes by pointing organizations with different philosophical stances toward --- Collaboration in Intimate Partner Violence The challenges of transforming police practices and the justice system response to IPV led to the development of community intervention projects in the early 1980s in the United States . These projects had the general objective of increasing coordination between various actors of the social and judicial systems, so as to enhance offender accountability and offer a more coherent, efficient, and adapted response to the needs of victims . This trend toward collaboration spread to other countries like Canada, Australia, and the United Kingdom . It has resulted in the development of community coordinated responses in the United States and integrated response systems in Australia . In addition, settings as coordination councils (Allen et al., 2013;Javdani & Allen, --- Low level of engagement High level of engagement ) 1 Defined as "Parties having established ongoing ties, but formal surrender of independence not required. A willingness to work together for some common goals. Communication emphasized. Requires good will and some mutual understanding" . 2 Defined as "Planned harmonization of activities between the separate parties. Duplication of activities and resources is minimized. Requires agreed plans and protocols or appointment of an external coordinator or manager" . 2011; Rondeau et al., 2001), high-risk case management committees , clinical case management committees , specialized teams combining police officers and social workers , and co-located victim services were created along the years. In Quebec, Canada, the government has promoted a collaborative approach toward IPV in its social policy since the mid-1980s . Consequently, there are coordination councils bringing together the actors involved in IPV in most regions of the province . Recently, expert panels mandated by the government have examined IPV-related practices so as to overcome persistent systemic issues and the dissatisfaction of victims toward the justice system. They emphasized improved cross-sectoral cooperation and synergy among the many people and organizations involved in IPV . Given that collaboration in IPV has been promoted and implemented in Quebec for more than three decades, one wonders why experts still need to recommend it. One possible answer to this question is that, despite their benefits and the experience accumulated over the years, collaborative practices come with persistent challenges. Yet, to better understand these challenges, studies conducted in recent years have highlighted factors that can cause, aggravate, or help to overcome them. --- Factors Facilitating and Hindering Collaboration in Intimate Partner Violence Collaborative practices in the field of IPV have been studied for several years and numerous factors are now known to promote or hinder their success. As explained below, these factors can range from individual to structural elements. For example, on the individual level, knowledge of IPV, of partners' work and the attitudes of collaborators will greatly impact collaborations . On the relational and microsystem level, it is noted that partnership will be more effective when there is frequent and regular communication and when partners have shared vision, and common goals. On the contrary, the absence of the latter, unresolved conflicts, or interference with partner's work will negatively impact partnerships . On the organization level, collaboration is supported by a formal commitment to collaboration in the organizational culture, openness to organizational change, and allocation of human resources. It is hindered by a lack of continuing education within the organization and by staff turnover . On the community level, collaboration is impacted by the commitment of key leaders , co-location of resources, joint intersectoral training or formal protocols among stakeholders . Lastly, at the macrosocial level, a key element of successful collaborations is sufficient and recurring financial support, in the absence of which collaboration may be inhibited . Our synthesis leads us to conclude that while some of these factors are more specific to particular contexts in the literature and specialists in IPV), many factors intersect with multiple contexts. --- The Current Study The originality of our study is its systemic, comprehensive, and integrated approach, in which an entire region has been studied in Quebec. Although there have been studies about IPV practices and collaboration, they have generally focused on specific mechanisms . In addition, we interviewed 10 different types of professionals involved in IPV response, whereas most studies include only one or two subgroups . This gave us a nuanced overview where complementary, competing, and antagonistic perspectives could be analyzed concomitantly. --- Theoretical Framework: Professional Representations Social representations are "beliefs, social practices, and shared knowledge that exist as much in individuals' minds as in the fabric of society" . Professional representations are a category of social representations and specifically relate to the work environment . They are references structuring professional knowledge and intentions while organizing professional actions. They are structured according to individual's viewpoint, occupational affiliation, and contextual constraints . We specifically oriented our research within the system of professional activities developed by Blin . According to Blin, professional representations are actualized along three dimensions: 1) the objects that are meaningful for the practices ; 2) the contextual framework ; 3) objects related to identity issues . For ease of reading, in this article the participants' "professional representations" will often be referred to as "viewpoints" or "perspectives". --- Method A single case study was conducted from 2015 to 2018 in one of the 17 administrative regions of the Province of Quebec. 3 The overall aim of the study was to deepen our understanding of the socio-judicial responses to IPV seen as a system and based on the professional representations of the involved practitioners. Given that health and social services are organized and systematized by region in Quebec, the choice of a single geographic case seemed the best option to meet our objective. The case was selected because of its informative potential regarding the object investigated: this was a case where IPV resources were well developed, where coordination had been documented in a previous study , where the rates of criminalized IPV was higher than the Quebec average, and finally, with a geographic diversity considered favorable to the transferability of the data. As for ethics principles, measures, such as informed consent, confidentiality of data and limitation of risks associated with participation in the study, were in place. Ethical approval from the research ethics board of the University of Montreal was obtained for the study as well as from the research ethics board of the integrated health and social service centers of the region studied. Thirty-seven key informants from the case were interviewed between July 2015 and November 2016 in semistructured individual interviews averaging 82 min in length. We employed three strategies to select our participants: variation, inclusion criteria, and convenience sampling . Firstly, to collect data from various informants, the participants were recruited from diverse organizations involved in IPV in the region of the study. Secondly, to select key informants from within these organizations, four criteria were used: 1) being a practitioner at the time of the study; 2) working with people experiencing IPV whose situation was judicialized; 3) having at least two years of professional experience in IPV; and 4) being employed by a governmental or community organizations, as they are more directly influenced by social policies than private organizations. Thirdly, a convenience sample was created with practitioners who met these criteria and who voluntarily agreed to participate in the study . They were recruited through their organization which had agreed to display a recruitment poster. Interested practitioners were asked to contact the researcher on their own, thus preserving confidentiality within their organization. --- --- Measure and Procedures Individual interviews were conducted using a semi-structured interview guide based on Blin's theory of professional representation. Thus, the themes discussed were related to: 1) the participants' socio-judicial IPV practices ; 2) the institutional and organizational contexts of these practices ; and 3) specific aspects of their professional identity considered to impact these practices. Individual interviews were chosen because they are an appropriate method for in-depth exploration of the actors' viewpoints, and they have the advantage of being focused on the studied topics. Furthermore, these interviews with 10 different types of practitioners from the same region made it possible to corroborate and cross-reference their viewpoints , which increased the credibility of our data. Interviews were conducted in person, at the participants' location of choice, for the most part at their workplace. A few days before the interview, participants were emailed the consent form and interview guide. On the day of the interview, the consent form was reviewed and explained. The length of the interviews varied between 55 and 180 min, with an average duration of 82 min. At the end of the interviews, participants filled out a socio-demographic information form . These data were compiled to describe the sample, to cross-reference our data, and to understand the influence of different attributes on our participants' viewpoints. Fictitious names were given to the participants and only the principal investigator had access to the file with real names. For this article, excerpts were translated from French to English. --- Data Analysis The interviews were recorded, transcribed, and then coded through content analysis using NVivo . Thematic coding was used, which allowed for the description of the participants' professional representations. Based on Blin's work , the data in our study were first coded deductively along his three dimensions of professional representations to reduce data and to ensure the fit of our theoretical framework. As stated before, these refer to the participant's practices, their organizational and institutional context, and their professional identity. Seventeen first-level codes were created in the process. We next conducted a more in-depth inductive thematic coding to identify relevant child codes and common sub-themes in the participants' representations . This allowed us to describe socio-judicial practices in IPV, including collaboration, its context, and how stakeholders understand their professional identities within that field of practice. Finally, data were discursively coded in three subsets of cognitions . This article mainly discusses those themes related to practices and the participants' professional identity rooted in two subsets of cognition , as these were most likely to shed light on collaboration practices. In addition, intra-and inter-role matrices that cross-referenced the themes with various attributes were used to explain, contextualize, and deepen our understanding of the basis of these representations . Given the social foundation of professional representations, only themes that were shared by a minimum of 50% of the members of the subgroups were retained and considered. At a last step, we deductively analyzed the results related to IPV practices using the conceptual model developed by Wilcox . This allowed us to adopt a processual and integrative view of the collaborative practices discussed by the participants. Lastly, to enhance the trustworthiness of our work and counterbalance the fact that we were unable to have our results corroborated by participants, we presented our preliminary results to peers and practitioners at conferences on six occasions, thereby increasing their reliability and credibility. --- Findings --- Collaborative Practices The collaboration described by the participants, categorized according to Wilcox's model, is presented in Table 2. As mentioned earlier, only practices reported by at least 50% of subgroup participants were retained as outcomes. Table 2 shows that referral and information sharing are the most common practices in the participants' representations of collaboration. Cooperation and coordination, however, are unevenly distributed, and largely unreported among the judicial participants . Table 2 also shows that organizational policies for IPV were only mentioned by police officers. Finally, we noticed that practices characterized as fully integrated in Wilcox's continuum were absent from participant discourses, suggesting that such practices may not exist in the case studied. --- Factors Favoring Collaboration Results emerging from our analyses lead us to believe that there is fertile ground for developing and improving collaboration in the region studied. These are shared elements of professional identity that go beyond specific occupational affiliation as well as generally positive attitude toward collaboration and its importance in the field. --- Shared Elements of Professional Identify There was a high level of agreement among the participants, regardless of their professional affiliation, about the knowledge and attitudes required in the socio-judicial context of IPV. As reported, the most salient were: "listening, empathy, good understanding" ; "a willingness to get involved, to get informed, to work and further our analysis" ; "to be able to collaborate between the various stakeholders" ; "to manage the risk through the back and forth [of the relationship], also feeling that you can manage the risk . Participants also mentioned the importance of being patient: "I think it takes a lot of patience in IPV because not all women file a definitive, categorical complaint that takes them straight from point A to point B without hesitating or backing up" . Furthermore, knowledge of three specific components were identified: "we must have a good understanding of violence" ; "[we must] be familiar with the resources" ; "I must be informed of the laws and procedures" . Our analysis of the participants' professional goals and missions in IPV also revealed a noticeable inter-group consensus. These were: "to protect" ; "[to help] the population and [to help] the victims" ; "to help reduce violence against women and children" ; "to make a difference in people's lives" ; "to break the cycle of violence and to increase the awareness of women, men and children about domestic violence" . Globally, our results highlight that shared elements of professional identity are rooted in: 1) empathy, open-mindedness, and good analytical judgment due to the complexity of the phenomenon; 2) consideration for one's own safety and that of others; 3) knowledge of three specific components: IPV, related resources, and the justice system; and 4) a profound desire to protect, help, take action in a significant way and increase awareness of the deleterious effects of violence. --- Positive Representations of Collaborative Practices A general positive attitude toward collaboration was noted among participants. For several, it was clear that socio-judicial responses in IPV should be collaborative: "You can't work in silos in IPV, it's impossible. If we do, then we are doomed to fail." . This attitude seems particularly relevant in complex or high-risk cases: "In homicidal, suicidal risk assessments, consultation is important. You shouldn't take that kind of decision alone." . In addition, most participants report good collaborations that have been built up over time with partners: "I would say that [collaboration with the prosecutors] is going very, very well. It's been running for several years now; we didn't start this a month ago" . Many advantages of collaboration were mentioned during the interviews, the most notable being a greater knowledge of IPV and other resources, the effectiveness and quality of the interventions carried out, and, the complementarity of services resulting from collaborative arrangements: "When we meet with the victim and explain the whole court process, it's a big deal. So, when Mary, at the victims' center, is there to explain the steps, […] I know that it takes a huge weight off [the victim's] shoulders and ours." . That said, it was noted by some that their collaboration was more frequent with actors with whom they had formal agreements and that these agreements usually involved two organizations or actors and rarely more. In addition, our analyses showed that collaboration occurred primarily between those who worked with victims, on the one hand, and those who worked with perpetrators on the other, thus implying the presence of silos within the system: Participant : I think that we would benefit from these people talking to each other more and working together more. Interviewer: […] Currently, it's more of a silo inter-vention…? --- P: Yes We also noticed that the theme of collaboration was much more common and prevalent among psychosocial practitioners than among the judiciary, which is consistent with the fact that the latter reported fewer collaborative practices, as shown in Table 2. --- Factors Hindering Collaboration in Intimate Partner Violence Although the results presented above allow us to identify a set of elements that are favorable to IPV collaboration, the participants also reported several negative factors. These were related to the following: a lack of knowledge of IPV; being unknown and unrecognized by some partners; issues regarding information sharing, insufficient levels of coordination, and insufficient resources. --- Lack of Knowledge of Intimate Partner Violence One important issue reported by participants is poor understanding of IPV, particularly among judicial actors: "[S]ometimes I think that they [civil lawyers] don't understand IPV, that there's a lot they don't get [in terms of child custody cases]" ; "I find that police officers have a poor understanding [of IPV]" . This lack of knowledge can have the unfortunate impact of secondary victimization for victims: "it re-victimizes the woman all the time. I have the impression that they [the judiciary] don't understand [the IPV dynamic]" . It can also contribute to maintaining the abusive relationship: "I find that [the lack of knowledge on IPV] harms women and sometimes it encourages them to stay in an abusive relationship" . Lastly, it can negatively impact collaborations between partners and subsequent interventions: "[Even] if I do the right intervention, if the police officer next to me says something stupid like I've heard before, I'm working in a vacuum. They are not my work team, but they are important partners, without their work I can't really do mine" . Being Unknown and Unrecognized by Partners Secondly, the impression of not being properly known or recognized by partners was raised by several participants. It was clearly an important topic for many, although there were no questions regarding this theme in our interview guide. For example, participants who worked in community organizations, such as CRCs, perpetrator services, or victim shelters, mentioned that they felt that participants from other sectors, particularly the judicial actors, knew little about their work: It's more difficult with judges, defense lawyers, and prosecutors. I have the impression that they don't know us very well... Well, they know who we are. They recommend us a lot. But there are certain technicalities of the work we do here that they don't know or understand. . On a broader level, psychosocial actors sometimes felt that they went unrecognized by some judicial actors as indicated by this social worker: "I went a few times [to help women in their civil proceedings] and then I met the lawyers twice. […] They didn't even look at me." . As for other examples of similar issues, CPS workers reported that their mandate was misunderstood: "It's hard sometimes with the other practitioners, because they have a hard time understanding our mandate" . Those working with perpetrators mentioned for their part feeling marginalized by those working with victims: "[W]e experiences a lot of marginalization from organizations working with [victims]. Some marginalize quite a lot" . We also noted that workers practicing with perpetrators of violence were generally less likely to be mentioned when other participants were asked to identify the main actors involved in the socio-judicial response to IPV, which leads us to believe that this feeling of being marginalized was well-founded. Information Sharing Participants indicated that sharing information between partners was sometimes challenging. This especially seemed to be the case between shelters and CPS workers when there was a co-occurrence of IPV and child maltreatment, and the expectations and understanding of the partner mandates didn't seem to match. This was mentioned by Nina, a shelter worker: "In their minds [CPS], they have more control if she [the abused woman] lives in a shelter. Even when we explain very well that we don't monitor the woman's comings and goings because it's not our mandate." This issue is corroborated by a CPS worker, Sarah: "[Collaboration is challenging with] the shelters when they don't report to us, and we don't necessarily know where the woman is […]. Very often with shelters, it's difficult because of our protection mandates and our confidentiality policies." Participants intervening with perpetrators also report challenges regarding information sharing. These were not related to the diverse mandates or role misunderstanding as in the previous example, but rather to the tension between the perpetrator's right to professional confidentiality and the practitioner's obligation to protect: [W]hen there are aggravating factors or factors that you're concerned about, and you're not able to assess [risk], well the authorization to release information is very helpful. […] If there aren't enough factors to breach confidentiality and share information [or the authorization to do so], that's where we have a challenge . --- Lack of Coordination According to some participants, there was insufficient coordination within the socio-judicial IPV response system in their region: "[I]n an ideal world, these people [social and judicial actors] should have more consultation and coordination at the intervention level. What I am saying is that this is not done often enough" . It is thus not surprising that participants mentioned a lack of continuity and consistency in the services in their region. Indeed, for some, it had a significant negative impact on their activities: Sometimes I feel like a headless chicken shopping around and trying to find out who's going to give me that service this time, who's available. You know, there's like no procedures. […] Where do we start? Whom do we talk to? Who should oversee and manage the intervention process? However, viewpoints on the discontinuity of services were not unanimous. Indeed, according to nearly a third of the participants, continuity and coherence often characterize their practice. Two factors seem to be related to the level of consistency reported: the geographical context in which things seem smoother in rural areas, "This is the advantage of being on a small territory […]. There is only one shelter, I know the workers, they know me" ; and the use of protocols that structure the intervention: If there is a police intervention, the victim's center is immediately informed [because of the referral protocol]. They contact the woman, and if there is ever something that needs to be done at the [social] level, they'll transfer her to us very quickly . --- Lack of Resources Lastly, many participants point to insufficient resources and an increase in caseloads. These are present in most of the professional contexts, but the challenge seems to be particularly significant for those working with offenders as reported by Beatrice: "Lately we have so many cases. We've had a big increase in caseloads […]. Now we can't always respect the time limits, which sometimes has repercussions" . Laurie likewise stated: "There are no services, and even though we ask a lot of things from [the offenders in rehabilitation], they can't or don't do much [because there are so few resources available for them]" . This lack of resources seems to have an important impact on the professional experience of participants as well as on the quality of services offered: We try to do the best we can with the time we have, but on the other hand, we have a suspect who is usually agitated, aggressive, uncooperative, plus we have legal deadlines, and we often lack resources at the police level, so we try to do a complete intervention with the victim, but […] it is too much for the police. It also impacts collaboration such as references between organization: "we can't refer to [other resources], we're all caught up in these cuts […] this is one of the major issues in the last year" . Given the resources and time required for the most intensive collaboration such as coordination, there are arguably connections between the findings in the previous section, even if these were not formally made explicit by the participants. --- Discussion This article highlights different collaboration practices reflected in 37 key informant's professional representations of the socio-judicial response to IPV in one region of the Province of Quebec, Canada. According to our findings, interagency referrals and information sharing are the collaborative practices most frequently reported by participants. Practices requiring a higher level of interdependence, such as consultation and coordination, are unevenly noted in our sample and no fully integrated practices were reported. Given that the literature on IPV collaboration has focused mostly on its facilitators, benefits, challenges, and barriers, it is difficult to compare these findings with those of other cases of socio-judicial responses to IPV. We know, however, that coordinated and integrated systems exist elsewhere. Hence, we would tend to characterize the case studied here as being poorly integrated when compared to some other IPV response systems. Our results also draw attention to factors impacting collaboration. On the enabling side, a set of common knowledge, attitudes and goals were identified as well as a positive stance toward collaboration. On the detrimental side, factors such as a lack of knowledge of IPV, a lack of knowledge and recognition of one's partners, communication issues, and insufficient resources were reported. Most of these elements echo previous studies , but cross-referencing them with data on the collaborative practices in place allows us to gain a deeper understanding of them. Indeed, given that referral and information sharing are the most common collaborative practices, the fact that there are issues of partner knowledge and communication points to the importance of prioritizing these aspects in order to improve already common practices. In addition, the identification of actors specifically concerned with these challenges increases the possibility of targeting training and action, which will benefit the system as a whole and its actors. Our findings add, to the previously known factors in literature, the importance of knowledge of the judicial system, and of analytical skills to understand the complexity of situations and safety considerations. This also seems essential to the specific socio-judicial context of practice and its associated collaborations. Indeed, the need for training and cross-sectoral training is a key recommendation in the literature. Our results not only support such a recommendation but provide a solid foundation for it, by highlighting the core elements that could and should be taught. This has the potential to be particularly relevant to training given to CPS and CRC workers as well has for police and probation officers, who are not specialists in IPV. Although our data were collected a few years ago, they coincide with recent statements made by the Expert Committee on Support for Victims of Sexual Assault and Domestic Violence , which reported unequal degrees of coordination in the different regions of Quebec. We must conclude that despite decades of promotion of intersectoral action in Quebec's social policies, this remains an issue in need of continued attention. That said, our results support the importance of organizational guidelines and protocols . They also put forward stable interagency networks as factors that facilitate coordination. When workers are trained and have expertise in collaboration, we must ensure that their working conditions are appealing, since staff turnover is a key obstacle in the implementation and maintenance of collaborative mechanisms . In addition, the planning, monitoring, and evaluation of these protocols and formalized collaboration structures must be in place . In our study, only police officers mentioned an organizational protocol for IPV. It may not be surprising that specialized IPV resources such as victim shelters and perpetrator services do not have such guidelines since their mission is specifically oriented by IPV. However, it should be expected and recommended that participants from other generalist agencies, such as CPS or probation, have clearer guidance in this issue. Finally, psychosocial actors and those practicing in community organizations reported often not feeling recognized by some partners, particularly by judicial actors. We believe that this is a valid indicator of the power imbalances in place in the response system under study. Recognition is an essential component of the need for esteem as put forward by Maslow in his theory on human needs. According to Honneth , the denial of recognition is directly linked to a more limited autonomy and a loss of integrity. Yet most of these psychosocial and community workers were experts in IPV in the response system studied here and played a central role within it. Opportunities for the actors to get to know each other and to put their expertise to work in the response system must be created to overcome this challenge. As discussed earlier, crosssectoral training is an option in this regard. Other events, such as forums, workshops, and clinical coordination involving the actors in the field, must also be developed, and specifically include the judicial actors, who are sometimes more difficult to integrate in these activities. Obviously, the implementation of such initiatives is a challenge to all while resources are limited. To facilitate the process, it is now possible however, to rely on innovative solutions that have emerged from the pandemic. For example, collective events online are now much more common and should be used. In addition, given the importance of recognition in our data and the absence of knowledge on the matter in socio-judicial settings, research should further investigate this topic to better understand its influence on collaboration. It is relevant to ask how these recommendations can be implemented, as the COVID-19 pandemic has significantly affected the ways we connect and work together. In Quebec, the damaging effects of the pandemic on IPV have contributed to a high level of political and social concern and significant investments from the government. Among other things, these investments have supported the development of high-risk case management committees and pilot projects of specialized courts for IPV cases, two types of settings where collaboration is central. Thus, once the first phase of COVID-19 was over, practitioners quickly innovated to do better together despite the imposed distancing. In addition, the technological means to concretize their ideas were made accessible to them, for instance through creation of business accounts for online meetings. In fact, while collaboration in IPV could have been deeply affected and limited by the crisis, studies we are presently conducting show that collaboration is very active. In our view, this observation supports other research arguing that structural factors such as government commitment and investment are critical to the success of collaborative practices. --- Limitations Some limitations were encountered in conducting our research. The first is related to recruitment. For several reasons, four practitioner subgroups out of ten were underrepresented in the sample. 5 The results collected from these subgroups should thus be considered with caution. In addition, central actors in the judicial response to IPV, the prosecutors, did not participate in the research because the Director of Criminal and Penal Prosecutions did not authorize it. Consequently, an important point of view on IPV practices and collaboration remains absent, which limits the scope of our findings. Further research with these key players is recommended to overcome this limitation. Secondly, to ensure the feasibility of the study, a convenience sample was chosen over a theoretical sample even though it reduces the transferability of the results. What is more, only the individual interview technique was used to collect data, whereas in case studies, it is generally recommended to combine several means of collection. We compensated for these limitations by developing specific selection criteria and variation within the sample, which favored empirical triangulation . Regarding the focus of this article, a specific question about the challenges of the socio-judicial practices in IPV was part of the interview guide. There were no questions, however, about their optimal conditions. This may explain why there are more findings that identify challenges and issues that impede collaboration than those that promote it. A final limitation is related to the fact that our data were collected between 2015 and 2016, as social practices evolve rapidly. However, they are consistent with studies conducted in different countries and times, which leads us to assume the persistence of the challenges described in IPV collaboration. Furthermore, since 2019, there have been important political actions taken in Quebec regarding IPV that have the potential to impact collaboration, and more broadly the entire response system. Our data will therefore offer a comparison to examine the practical changes resulting from these reforms and policy actions. Despite these limitations, the study examined the experiential knowledge and attitudes towards collaboration of most of the actors involved in social and judicial responses to IPV in a specific geographic case in Quebec, Canada. This enabled us to report on the realities, experiences, and difficulties of the various parties, while leaving room for the diversity of viewpoints. These qualitative findings shared by multiple subgroups of practitioners are solid in terms of transferability and are key to our understanding of the response system studied here. It also allows us to describe an IPV intervention system in Canada, with its strengths and weaknesses, whereas this holistic approach is generally absent in the literature. --- Conclusion Our study revealed that the most frequent collaborative practices in IPV in this region of Quebec, Canada were interagency referrals and information sharing, which requires little interdependence between actors. Moreover, we identified factors that impact the collaboration taking place within the studied system, including the knowledge and attitudes necessary for such work. Given the importance of collaboration in overcoming and adequately responding to the complex social problem of IPV, our results lead us to recommend multilevel actions. These include cross-sectoral training, specifying certain themes to be taught, and organizational guidelines that promote collaboration and coherent intervention and community networking, such as forums or clinical consultations within the response systems. ---
Purpose Due to the complexity of intimate partner violence (IPV) and the many actors involved in its social and legal responses, there is a broad consensus that collaboration is essential if IPV is to be overcome. Few studies, however, have provided details as to how these collaborations occur. Rather, research on collaboration in IPV has typically focused on a series of factors facilitating and hindering it. However, these factors are rarely articulated in a systemic, comprehensive, and integrated way. Method To gain a better understanding of the socio-judicial response to IPV, we conducted a case study in an administrative region in the Province of Quebec, Canada. We conducted individual interviews with 37 key informants who work with people experiencing IPV. The data were subjected to deductive thematic coding as well as to intra-and inter-role matrices that cross-referenced the themes. Result According to our findings, interagency referrals and information sharing were the most common collaborative practices reported by participants which leading us to characterize the region studied in this article as poorly integrated. Factors facilitating and hindering collaboration are discussed in relation to previous studies. Conclusion Recommendations for cross-sectoral training, organizational policy development, and opportunities to leverage the expertise of specialized actors in IPV response systems are made.
feature The future of human behaviour research Human behaviour is complex and multifaceted, and is studied by a broad range of disciplines across the social and natural sciences. To mark our 5th anniversary, we asked leading scientists in some of the key disciplines that we cover to share their vision of the future of research in their disciplines. Our contributors underscore how important it is to broaden the scope of their disciplines to increase ecological validity and diversity of representation, in order to address pressing societal challenges that range from new technologies, modes of interaction and sociopolitical upheaval to disease, poverty, hunger, inequality and climate change. Taken together, these contributions highlight how achieving progress in each discipline will require incorporating insights and methods from others, breaking down disciplinary silos. G enuine progress in understanding human behaviour can only be achieved through a multidisciplinary community effort. Five years after the launch of Nature Human Behaviour, twenty-two leading experts in some of the core disciplines within the journal's scope share their views on pressing open questions and new directions in their disciplines. Their visions provide rich insight into the future of research on human behaviour. --- Artificial intelligence --- Kate Crawford Much has changed in artificial intelligence since a small group of mathematicians and scientists gathered at Dartmouth in 1956 to brainstorm how machines could simulate cognition. Many of the domains that those men discussed -such as neural networks and natural language processing -remain core elements of the field today. But what they did not address was the far-reaching social, political, legal and ecological effects of building these systems into everyday life: it was outside their disciplinary view. Since the mid-2000s, artificial intelligence has rapidly expanded as a field in academia and as an industry, and now a handful of powerful technology corporations deploy these systems at a planetary scale. There have been extraordinary technical innovations, from real-time language translation to predicting the 3D structures of proteins 1,2 . But the biggest challenges remain fundamentally social and political: how AI is widening power asymmetries and wealth inequality, and creating forms of harm that need to be prioritized, remedied and regulated. The most urgent work facing the field today is to research and remediate the costs and consequences of AI. This requires a deeper sociotechnical approach that can contend with the complex effect of AI on societies and ecologies. Although there has been important work done on algorithmic fairness in recent years 3,4 , not enough has been done to address how training data fundamentally skew how AI models interpret the world from the outset. Second, we need to address the human costs of AI, which range from discrimination and misinformation to the widespread reliance on underpaid labourers 5 . Third, there must be a commitment to reversing the environmental costs of AI, including the exceptionally high energy consumption of the current large computational models, and the carbon footprint of building and operating modern tensor processing hardware 6 . Finally, we need strong regulatory and policy frameworks, expanding on the EU's draft AI Act of 2021. By building a more interdisciplinary and inclusive AI field, and developing a more rigorous account of the full impacts of AI, we give engineers and regulators alike the tools that they need to make these systems more sustainable, equitable and just. --- Kate Crawford is --- Anthropology Laura M. Rival The field of anthropology faces fundamental questions about its capacity to intervene more effectively in political debates. How can we use the knowledge that we already have to heal the imagined whole while keeping people in synchrony with each other and with the world they aspire to create for themselves and others? The economic systems that sustain modern life have produced pernicious waste cultures. Globalization has accelerated planetary degradation and global warming through the continuous release of toxic waste. Every day, like millions of others, I dutifully clean and prepare my waste for recycling. I know it is no more than a transitory measure geared to grant manufacturers time to adjust and adapt. Reports that most waste will not be recycled, but dumped or burned, upset me deeply. How can anthropology remain a critical project in the face of such orchestrated cynicism, bad faith and indifference? How should anthropologists deploy their skills and bring a sense of shared responsibility to the task of replenishing the collective will? To help to find answers to these questions, anthropologists need to radically rethink the ways in which we describe the processes and relations that tie communities to their environments. The extinction of experience that humankind currently suffers is massive, but not irreversible. New forms of storytelling have successfully challenged As these processes of digital transformation continue, new connections between the humanities and technical disciplines will be necessary, giving rise to a new wave of methodological innovation. This next phase will also require more hybrid methods 15 , not only to get around platform lockouts but also to ensure more careful attention is paid to how the new media technologies are used and experienced in everyday life. Here, innovative approaches such as the use of data donations can both aid the 'platform observability' 16 that is essential to accountability, and ensure that our research involves the perspectives of diverse audiences. --- Computational social science --- Claudia Wagner Computational social science has emerged as a discipline that leverages computational methods and new technologies to collect, model and analyse digital behavioural data in natural environments or in large-scale designed experiments, and combine them with other data sources . While the community made critical progress in enhancing our understanding about empirical phenomena such as the spread of misinformation 17 and the role of algorithms in curating misinformation 18 , it has focused less on questions about the quality and accessibility of data, the validity, reliability and reusability of measurements, the potential consequences of measurements and the connection between data, measurement and theory. I see the following opportunities to address these issues. First, we need to establish privacy-preserving, shared data infrastructures that collect and triangulate survey data with scientifically motivated organic or designed observational data from diverse populations 19 . For example, longitudinal online panels in which participants allow researchers to track their web browsing behaviour and link these traces to their survey answers will not only facilitate substantive research on societal questions but also enable methodological research , and contribute to the reproducibility of computational social science research. Second, best practices and scientific infrastructures are needed for supporting the development, evaluation and re-use of measurements and the critical reflection on potentially harmful consequences of measurements 20 . Social scientists have developed such best practices and infrastructural support for survey measurements to avoid using instruments for which the validity is unclear or even questionable, and to support the re-usability of survey scales. I believe that practices from survey methodology and other domains, such as the medical industry, can inform our thinking here. Finally, the fusion of algorithmic and human behaviour invites us to rethink the various ways in which data, measurements and social theories can be connected 20 . For example, product recommendations that users receive are based on measurements of users' interests and needs: however, users and measurements are not only influenced by those recommendations, but also influence them in turn. As a community we need to develop research designs and environments that help us to systematically enhance our understanding of those feedback loops. --- Claudia Wagner is Head of Computational --- Criminology --- Daniel S. Nagin Disciplinary silos in path-breaking science are disappearing. Criminology has had a longstanding tradition of interdisciplinarity, but mostly in the form of an uneasy truce of research from different disciplines appearing side-by-side in leading journals -a scholarly form of parallel play. In the future, this must change because the big unsolved challenges in criminology will require cooperation among all of the social and behavioural sciences. These challenges include formally merging the macro-level themes emphasized by sociologists with the micro-, individual-level themes emphasized by psychologists and economists. Initial steps have been made by economists who apply game theory to model crime-relevant social feature interactions, but much remains to be done in building models that explain the formation and destruction of social trust, collective efficacy and norms, as they relate to legal definitions of criminal behaviour. A second opportunity concerns the longstanding focus of criminology on crimes involving the physical taking of property and interpersonal physical violence. These crimes are still with us, but -as the daily news regularly reportsthe internet has opened up broad new frontiers for crime that allow for thefts of property and identities at a distance, forms of extortion and human trafficking at a massive scale and interpersonal violence without physical contact. This is a new and largely unexplored frontier for criminological research that criminologists should dive into in collaboration with computer scientists who already are beginning to troll these virgin scholarly waters. The final opportunity I will note also involves drawing from computer science, the primary home of what has come to be called machine learning. It is important that new generations of criminologists become proficient with machine learning methods and also collaborate with its creators. Machine learning and related statistical methods have wide applicability in both the traditional domains of criminological research and new frontiers. These include the use of prediction tools in criminal justice decision-making, which can aid in crime detection, and the prevention and measuring of crime both online and offline, but also have important implications for equity and fairness due to their consequential nature. --- Daniel S. Nagin is Teresa and H. John Heinz III University Professor of Public Policy and Statistics at the Heinz College of Information Systems and Public Policy, Carnegie Mellon University, Pittsburgh, PA, USA. --- Behavioural economics --- Bertil Tungodden Behavioural and experimental economics have transformed the field of economics by integrating irrationality and nonselfish motivation in the study of human behaviour and social interaction. A richer foundation of human behaviour has opened many new exciting research avenues, and I here highlight three that I find particularly promising. Economists have typically assumed that preferences are fixed and stable, but a growing literature, combining field and laboratory experimental approaches, has provided novel evidence on how the social environment shapes our moral and selfish preferences. It has been shown that prosocial role models make people less selfish 21 , that early-childhood education affects the fairness views of children 22 and that grit can be fostered in the correct classroom environment 23 . Such insights are important for understanding how exposure to different institutions and socialization processes influence the intergenerational transmission of preferences, but much more work is needed to gain systematic and robust evidence on the malleability of the many dimensions that shape human behaviour. The moral mind is an important determinant of human behaviour, but our understanding of the complexity of moral motivation is still in its infancy. A growing literature, using an impartial spectator design in which study participants make consequential choices for others, has shown that people often disagree on what is morally acceptable. An important example is how people differ in their view of what is a fair inequality, ranging from the libertarian fairness view to the strict egalitarian fairness view 24,25 . An exciting question for future research is whether such moral differences reflect a concern for other moral values, such as freedom, or irrational considerations. A third exciting development in behavioural and experimental economics is the growing set of global studies on the foundations of human behaviour 26,27 . It speaks to the major concern in the social sciences that our evidence is unrepresentative and largely based on studies with samples from Western, educated, industrialized, rich and democratic societies 28 . The increased availability of infrastructure for implementing large-scale experimental data collections and methodological advances carry promise that behavioural and experimental economic research will broaden our understanding of the foundations of human behaviour in the coming years. --- Bertil Tungodden is Professor and Scientific Director of the Centre of Excellence FAIR at NHH Norwegian School of Economics, Bergen, Norway. --- Development economics --- Esther Duflo The past three decades have been a wonderful time for development economics. The number of scholars, the number of publications and the visibility of the work has dramatically increased. Development economists think about education, health, firm growth, mental health, climate, democratic rules and much more. No topic seems off limits! This progress is intimately connected with the explosion of the use of randomized controlled trials and, more generally, with the embrace of careful causal identification. RCTs have markedly transformed development economics and made it the field that it is today. The past three decades have also been very good for improving the circumstances of low-income people around the world: poverty rates have fallen; school enrolment has increased; and maternal and infant mortality has been halved. Although I would not dare imply that the two trends are causally related, one of the reasons for these improvements in the quality of life -even in countries where economic growth has been slow -is the greater focus on pragmatic solutions to the fundamental problems faced by people with few resources. In many countries, development economics researchers have been closely involved with policy-makers, helping them to develop, implement and test these solutions. In turn, this involvement has been a fertile ground for new questions, which have enriched the field. I imagine future change will, once again, come from an unexpected place. One possible driver of innovation will come from this meeting between the requirements of policy and the intellectual ambition of researchers. This means that the new challenges of our planet must become the new challenges of development economics. Those challenges are, I believe, quite clear: rethinking social protection to be better prepared to face risks such as the COVID-19 pandemic; mitigating, but unfortunately also adapting to, climate changes; curbing pollution; and addressing gender, racial and ethnic inequality. To address these critical issues, I believe the field will continue to rely on RCTs, but also start using more creatively the huge amount of data that is increasingly available as governments, even in poor countries, digitize their operations. I cannot wait to be surprised by what comes next. --- Esther Duflo is The Abdul Latif Jameel Professor of Poverty Alleviation and Development Economics at the --- Political science --- Janet M. Box-Steffensmeier Political science remains one of the most pluralistic disciplines and we are on the move towards engaged pluralism. This takes us beyond mere tolerance to true, sincere engagement across methods, methodologies, theories and even disciplinary boundaries. Engaged pluralism means doing the hard work of understanding our own research from the multiple perspectives of others. More data are being collected on human behaviour than ever before and our advances in methods better address the inherent interdependencies of the data across time, space and context. There are new ways to measure human behaviour via text, image and video. Data creation can even go back in time. All these advancements bode well for the potential to better understand and predict behaviour. This 'data century' and 'golden age of methods' also hold the promise to bridge, not divide, political science, provided that there is engaged methodological pluralism. Qualitative methods provide unique insights and perspectives when joined with quantitative methods, as does a broader conception of the methodologies underlying and launching our research. I remain a strong proponent of leveraging dynamics and focusing on heterogeneity in our research questions to advance our disciplines. Doing so brings in an explicit perspective of comparison around similarity and difference. Our questions, hypotheses and theories are often made more compelling when considering the dynamics and heterogeneity that emerges when thinking about time and change. Striving for a better understanding of gender, race and ethnicity is driving deeper and fuller understandings of central questions in the social sciences. The diversity of the research teams themselves across gender, sex, race, ethnicity, first-generation status, religion, ideology, partisanship and cultures also pushes advancement. One area that we need to better support is career diversity. Supporting careers in government, non-profit organizations and industry, as well as academia, for graduate students will enhance our disciplines and accelerate the production of knowledge that changes the world. Engaged pluralism remains a foundational key to advancement in political science. Engaged --- Cognitive psychology --- Andrew Perfors Cognitive psychology excels at understanding questions whose problem-space is well-defined, with precisely specified theories that transparently map onto thoroughly explored experimental paradigms. That means there is a vast gulf between the current state of the art and the richness and complexity of cognition in the real world. The most exciting open questions are about how to bridge that gap without sacrificing rigour and precision. This requires at least three changes. First, we must move beyond typical experiments. Stimuli must become less artificial, with a naturalistic structure and distribution. Similarly, tasks must become more ecologically valid: less isolated, with more uncertainty, embedded in natural situations and over different time-scales. Second, we must move beyond considering individuals in isolation. We live in a rich social world and an environment that is heavily shaped by other humans. How we think, learn and act is deeply affected by how other people think and interact with us; cognitive science needs to engage with this more. Third, we must move beyond the metaphor of humans as computers. Our cognition is deeply intertwined with our emotions, motivations and senses. These are more than just parameters in our minds; they have a complexity and logic of their own, and interact in nontrivial ways with each other and more typical cognitive domains such as learning, reasoning and acting. How do we make progress on these steps? We need reliable real-world data that are comparable across people and situations, reflect the cognitive processes involved and are not changed by measurement. Technology may help us with this, but challenges surrounding privacy and data quality are huge. Our models and analytic approaches must also grow in complexitycommensurate with the growth in problem and data complexity -without becoming intractable or losing their explanatory power. Success in this endeavour calls for a different kind of science that is not centred around individual laboratories or small stand-alone projects. The biggest advances will be achieved on the basis of large, rich, real-world datasets from different populations, created and analysed in collaborative teams that span multiple domains, fields and approaches. This requires incentive structures that reward team-focused, slower science and prioritize the systematic construction of reliable knowledge over splashy findings. --- Andrew Perfors is Associate Professor and Deputy Director of the Complex Human Data Hub, University of Melbourne, Melbourne, Victoria, Australia. --- Cultural and social psychology Ying-yi Hong I am writing this at an exceptional moment in human history. For two years, the world has faced the COVID-19 pandemic and there is no end in sight. Cultural and social psychology are uniquely equipped to understand the COVID-19 pandemic, specifically examining how people, communities and countries are dealing with this extreme global crisis -especially at a time when many parts of the world are already experiencing geopolitical upheaval. During the pandemic, and across different nations and regions, a diverse set of strategies were used to curb the spread of the disease. In the first year of the pandemic, research revealed that some cultural worldviews -such as collectivism and tight norms -were positively associated with compliance with COVID-19 preventive measures as well as with fewer infections and deaths 29,30 . These worldview differences arguably stem from different perspectives on abiding to social norms and prioritizing the collective welfare over an individual's autonomy and liberty. Although in the short term it seems that a collectivist or tight worldview has been advantageous, it is unclear whether this will remain the case in the long term. Cultural worldviews are 'tools' that individuals use to decipher the meaning of their environment, and are dynamic rather than static 31 . Future research can examine how cultural worldviews and global threats co-evolve. The pandemic has also amplified the demarcation of national, political and other major social categories. On the one hand, identification with some groups was found to increase in-group care and thus a greater willingness to sacrifice personal autonomy to comply with COVID-19 measures 32 . On the other hand, identification with other groups feature widened the ideological divide between groups and drove opposing behaviours towards COVID-19 measures and health outcomes 33 . As we are facing climate change and other pressing global challenges, understanding the role of social identities and how they affect worldviews, cognition and behaviour will be vital. How can we foster more inclusive identities that can unite rather than divide people and nations? --- Ying-yi --- Developmental psychology --- Alison Gopnik Developmental psychology is similar to the kind of book or band that, paradoxically, everyone agrees is underrated. On the one hand, children and the people who care for them are often undervalued and overlooked. On the other, since Piaget, developmental research has tackled some of the most profound philosophical questions about every kind of human behaviour. This will only continue into the future. Psychologists increasingly recognize that the minds of children are not just a waystation or an incomplete version of adult minds. Instead, childhood is a distinct evolutionarily adaptive phase of an organism, with its own characteristic cognitions, emotions and motivations. These characteristics of childhood reflect a different agenda than those of the adult mind -a drive to explore rather than exploit. This drive comes with motivations such as curiosity, emotions such as wonder and surprise and remarkable cognitive learning capacities. A new flood of research on curiosity, for example, shows that children actively seek out the information that will help them to learn the most. The example of curiosity also reflects the exciting prospects for interdisciplinary developmental science. Machine learning is increasingly using children's learning as a model, and developmental psychologists are developing more precise models as a result. Curiosity-based AI can illuminate both human and machine intelligence. Collaborations with biology are also exciting: for example, in work on evolutionary 'life history' explanations of the effects of adverse experiences on later life, and new research on plasticity and sensitive periods in neuroscience. Finally, children are at the cutting edge of culture, and developmental psychologists increasingly conduct a much wider range of cross-cultural studies. But perhaps the most important development is that policy-makers are finally starting to realize just how crucial children are to important social issues. Developmental science has shown that providing children with the care that they need can decrease poverty, inequality, disease and violence. But that care has been largely invisible to policy-makers and politicians. Understanding scientifically how caregiving works and how to support it more effectively will be the most important challenge for developmental psychology in the next century. --- Science of science --- Cassidy R. Sugimoto Why study science? The goal of science is to advance knowledge to improve the human condition. It is, therefore, essential that we understand how science operates to maximize efficiency and social good. The metasciences are fields that are devoted to understanding the scientific enterprise. These fields are distinguished by differing epistemologies embedded in their names: the philosophy, history and sociology of science represent canonical metasciences that use theories and methods from their mother disciplines. The 'science of science' uses empirical approaches to understand the mechanisms of science. As mid-twentieth-century science historian Derek de Solla Price observed, science of science allows us to "turn the tools of science on science itself " 34 . Contemporary questions in the science of science investigate, inter alia, catalysts of discovery and innovation, consequences of increased access to scientific information, role of teams in knowledge creation and the implications of social stratification on the scientific enterprise. Investigation of these issues require triangulation of data and integration across the metasciences, to generate robust theories, model on valid assumptions and interpret results appropriately. Community-owned infrastructure and collective venues for communication are essential to achieve these goals. The construction of large-scale science observatories, for example, would provide an opportunity to capture the rapidly expanding dataverse, collaborate and share data, and provide nimble translations of data into information for policy-makers and the scientific community. The topical foci of the field are also undergoing rapid transformation. The expansion of datasets enables researchers to analyse a fuller population, rather than a narrow sample that favours particular communities. The field has moved from an elitist focus on 'success' and 'impact' to a more-inclusive and prosopographical perspective. Conversations have shifted from citations, impact factors and h-indices towards responsible indicators, diversity and broader impacts. Instead of asking 'how can we predict the next Nobel prize winner?' , we can ask 'what are the consequences of attrition in the scientific workforce?' . The turn towards contextualized measurements that use more inclusive datasets to understand the entire system of science places the science of science in a ripe position to inform policy and propel us towards a more innovative and equitable future. --- Sociology --- Sari Hanafi In the past few years, we have been living through times in which reasonable debate has become impossible. Demagogical times are driven by the vertiginous rise of populism and authoritarianism, which we saw in the triumph of Donald Trump in the USA and numerous other populist or authoritarian leaders in many places around the globe. There are some pressing tasks for sociology that can be, in brief, reduced to three. First, fostering democracy and the democratization process requires disentangling the constitutive values that compose the liberal political project to address the question of social justice and to accommodate the surge in people's religiosity in many parts in the globe. Second, the struggle for the environment is inseparable from our choice of political economy, and from the nature of our desired economic system -and these connections between human beings and nature have never been as intimate as they are now. Past decades saw rapid growth that was based on assumptions of the long-term stability of the fixed costs of raw materials and energy. But this is no longer the case. More recently, financial speculation intensified and profits shrunk, generating distributional conflicts between workers, management, owners and tax authorities. --- feature The nature of our economic system is now in acute crisis. The answer lies in a consciously slow-growing new economy that incorporates the biophysical foundations of economics into its functioning mechanisms. Society and nature cannot continue to be perceived each as differentiated into separate compartments. The spheres of nature, culture, politics, social, economy and religion are indeed traversed by common logics that allow a given society to be encompassed in its totality, exactly as Marcel Mauss 35 did. The logic of power and interests embodied in 'Homo economicus' prevents us from being able to see the potentiality of human beings to cultivate gift-giving practices as an anthropological foundation innate within social relationships. Third, there are serious social effects of digitalized forms of labour and the trend of replacing labour with an automaton. Even if digital labour partially reduces the unemployment rate, the lack of social protection for digital labourers would have tremendous effects on future generations. In brief, it is time to connect sociology to moral and political philosophy to address fundamentally post-COVID-19 challenges. --- Sari Hanafi is Professor of Sociology at the American University of Beirut, Beirut, Lebanon; and President of the International Sociological Association. environmental studies Yasuko Kameyama Climate change has been discussed for more than 40 years as a multilateral issue that poses a great threat to humankind and ecosystems. Unfortunately, we are still talking about the same issue today. Why can't we solve this problem, even though scientists pointed out its importance and urgency so many years ago? These past years have been spent trying to prove the causal relationship between an increase in greenhouse gas concentrations, global temperature rise and various extreme weather events, as well as developing and disseminating technologies needed to reduce emissions. All of these tasks have been handled by experts in the field. At the same time, the general public invested little time in this movement, probably expecting that the problem would be solved by experts and policy-makers. But that has not been the case. No matter how much scientists have emphasized the crisis of climate change or how many clean energy technologies engineers have developed, society has resisted making the necessary changes. Now, the chances of keeping the temperature rise within 1.5 °C of pre-industrial levels -the goal necessary to minimize the effects of climate changeare diminishing. We seem to finally be realizing the importance of social scientific knowledge. People need to take scientific information seriously for clean technology to be quickly diffused. Companies are more interested in investing in newer technology and product development when they know that their products will sell. Because environmental problems are caused by human activity, research on human behaviour is indispensable in solving these problems. Reports by the Intergovernmental Panel on Climate Change have not devoted many pages to the areas of human awareness and behaviour . The IPCC's Third Working Group, which deals with mitigation measures, has partially spotlighted research on institutions, as well as on concepts such as fairness. People's perception of climate change and the relationship between perception and behavioural change differ depending on the country, societal structure and culture. Additional studies in these areas are required and, for that purpose, more studies from regions such as Asia, Africa and South America, which are underrepresented in terms of the number of academic publications, are particularly needed. --- Yasuko Kameyama is Director, Social Systems Division, National Institute for Environmental Studies, Tsukuba, Japan. --- Sustainability --- Mario Herrero The food system is in dire straits. Food demand is unprecedented, while malnutrition in all its forms is rampant. Environmental degradation is pervasive and increasing, and if it continues, the comfort zone for humanity and ecosystems to thrive will be seriously compromised. From bruises and shapes to sell-by dates, we tend to find many reasons to exclude perfectly edible food from our plates, whereas in other cases not enough food reaches hungry mouths owing to farming methods, pests and lack of adequate storage. These types of inequalities are common and -together with inherent perverse incentives that maintain the status quo of how we produce, consume and waste increasingly cheap and processed foodthey are launching us towards a disaster. We are banking on a substantial transformation of the food system to solve this conundrum. Modifying food consumption and waste patterns are central to the plan for achieving healthier diets, while increasing the sustainability of our food system. This is also an attractive policy proposition, as it could lead to gains in several sectors. Noncommunicable diseases such as obesity, diabetes and heart disease could decline, while reducing the effects of climate change, deforestation, excessive water withdrawals and biodiversity loss, and their enormous associated -and largely unaccounted -costs. Modifying our food consumption and waste patterns is very hard, and unfortunately we know very little about how to change them at scale. Yes, many pilots and small examples exist on pricing, procurement, food environments and others, but the evidence is scarce, and the magnitude of the change required demands an unprecedented transdisciplinary research agenda. The problem is at the centre of human agency and behaviour, embodying culture, habits, values, social status, economics and all aspects of agri-food systems. Certainly, one of the big research areas for the next decade if we are to reach the Sustainable Development Goals leaving no one behind. --- Mario Herrero is Professor, Cornell Atkinson scholar and Nancy and Peter Meinig Family Investigator in the Life Sciences at the Department of Global Development, College of Agriculture and Life Sciences and Cornell Atkinson Center for Sustainability, Cornell University, Ithaca, NY, USA. --- Cultural evolution --- Laurel Fogarty Humans are the ultimate 'cultural animals' . We are innovative, pass our cultures to one another across generations and build vast self-constructed environments that reflect our cultural biases. We achieve things using our cultural capacities that are unimaginable for any other species on earth. And yet we have only begun to understand the dynamics of cultural change, the drivers of cultural complexity or the ways that we adapt culturally to changing environments. Scholars -anthropologists, archaeologists and sociologists -have long studied culture, aiming to describe and understand its staggering diversity. The relatively new field of cultural evolution has different aims, one of the most important of which is to understand the mechanics in the background -what general principles, if any, govern human cultural change? Although the analogy of culture as an evolutionary process has been made since at least the time of Darwin 36,37 , cultural evolution as a robust field of study is much younger. From its beginnings with feature the pioneering work of Cavalli-Sforza & Feldman [38][39][40] and Boyd & Richerson 41,42 , the field of cultural evolution has been heavily theoretical. It has drawn on models from genetic evolution 40,[43][44][45] , ecology 46,47 and epidemiology 40,48 , extending and adapting them to account for unique and important aspects of cultural transmission. Indeed, in its short life, the field of cultural evolution has largely been dominated by a growing body of theory that ensured that the fledgling field started out on solid foundations. Because it underpins and makes possible novel applications of cultural evolutionary ideas, theoretical cultural evolution's continued development is not only crucial to the field's growth but also represents some of its most exciting future work. One of the most urgent tasks for cultural evolution researchers in the next five years is to develop, alongside its theoretical foundations, robust principles of application [49][50][51] . In other words, it is vital to develop our understanding of what we can -and, crucially, cannot -infer from different types of cultural data. Where do we draw those boundaries and how can we apply cultural evolutionary theory to cultural datasets in a principled way? The tandem development of robust theory and principled application has the potential to strengthen cultural evolution as a robust, useful and ground-breaking inferential science of human behaviour. Laurel Fogarty is Senior Scientist at the Department of Human Behaviour, Ecology, and Culture, Max Planck Institute for Evolutionary Anthropology, Leipzig, Germany. --- Genetics --- Aysu Okbay Over the past decade, research using molecular genetic data has confirmed one of the main conclusions of twin studies: all human behaviour is partly heritable 52,53 . Attempts at examining the link between genetics and behaviour have been met with concerns that the findings can be abused to justify discrimination -and there are good historical grounds for these concerns. However, these findings also show that ignoring the contribution of genes to variation in human behaviour could be detrimental to a complete understanding of social phenomena, given the complex ways that genes and environment interact. Uncovering these complex pathways has become feasible only recently thanks to rapid technological progress reducing the costs of genotyping. Sample sizes in genome-wide association studies have risen from tens of thousands to millions in the past decade, reporting thousands of genetic variants associated with different behaviours [54][55][56][57] . New ways to use GWAS results have emerged, the most important one arguably being a method to aggregate the additive effects of many genetic variants into a 'polygenic index' that summarizes an individual's genetic propensity towards a trait or behaviour 58,59 . Being aggregate measures, PGIs capture a much larger share of the variance in the trait of interest compared to individual genetic variants 60 . Thus, they have paved the way for follow-up studies with smaller sample sizes but deeper phenotyping compared to the original GWAS, allowing researchers to, for example, analyse the channels through which genes operate 61,62 , how they interact with the environment 63,64 , and account for confounding bias and boost statistical power by controlling for genetic effects 65,66 . Useful as they are, PGIs and the GWAS that they are based on can suffer from confounding due to environmental factors that correlate with genotypes, such as population stratification, indirect effect from relatives or assortative mating 67 . Now that the availability of genetic data enables large-scale within-family GWAS, the next big thing in behaviour genetic research will be disentangling these sources 68 . While carrying the progress further, it is important that the field prioritizes moving away from its currently predominant Eurocentric bias by extending data collection and analyses to individuals of non-European ancestries, as the exclusion of non-European ancestries from genetic research has the potential to exacerbate health disparities 69 . Researchers should also be careful to communicate their findings clearly and responsibly to the public and guard against their misappropriation by attempts to fuel discriminatory action and discourse 70 . --- Aysu Okbay is Assistant Professor at the Department of Economics, School of Business and Economics, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands. --- Cognitive neuroscience --- Anna C. Nobre Since the 'decade of the brain' in the 1990s, ingenuity in cognitive neuroscience has focused on measuring and analysing brain signals. Adapting tools from statistics, engineering, computer science, physics and other disciplines, we studied activity, states, connectivity, interactions, time courses and dynamics in brain regions and networks. Unexpected findings about the brain yielded important insights about the mind. Now is a propitious time to upgrade the brain-mind duumvirate to a brain-mind-behaviour triumvirate. Brain and mind are embodied, and their workings are expressed through various effectors. Yet, experimental tasks typically use simple responses to capture complex psychological functions. Often, a button press -with its limited dimensions of latency and accuracymeasures anticipating, focusing, evaluating, choosing, reflecting or remembering. Researchers venturing beyond such simple responses are uncovering how the contents of mind can be studied using various continuous measures, such as pupil diameter, gaze shifts and movement trajectories. Most tasks also restrict participants' movements to ensure experimental control. However, we are learning that principles of cognition derived in artificial laboratory contexts can fail to generalize to natural behaviour. Virtual reality should prove a powerful methodology. Participants can behave naturally, and experimenters can control stimulation and obtain quality measures of gaze, hand and body movements. Noninvasive neurophysiology methods are becoming increasingly portable. Exciting immersive brain-mind-behaviour studies are just ahead. The next necessary step is out of the academic bubble. Today the richest data on human behaviour belong to the information and technology industries. In our routines, we contribute data streams through telephones, keyboards, watches, vehicles and countless smart devices in the internet of things. These expose properties such as processing speed, fluency, attention, dexterity, navigation and social context. We supplement these by broadcasting feelings, attitudes and opinions through social media and other forums. The richness and scale of the resulting big data offer unprecedented opportunities for deriving predictive patterns that are relevant to understanding human cognition . The outcomes can then guide further hypothesis-driven experimentation. Cognitive neuroscience is intrinsically collaborative, combining a broad spectrum of disciplines to study the mind. Its challenge now is to move from a multidisciplinary to a multi-enterprise science. --- Social and affective neuroscience Tatia M. C. Lee Social and affective neuroscience is a relatively new, but rapidly developing, field of neuroscience. Social and affective neuroscience research takes a multilevel approach to make sense of socioaffective processes, focusing on macro-, meso- and micro -level interactions. Because the products of these interactions are person-specific, the conventional application of group-averaged mechanisms to understand the brain in a socioemotional context has been reconsidered. Researchers turn to ecologically valid stimuli and experimental settings 71 to address interindividual differences in social and affective responses. At the neural level, there has been a shift of research focus from local neural activations to large-scale synchronized interactions across neural networks. Network science contributes to the understanding of dynamic changes of neural processes that reflect the interactions and interconnection of neural structures that underpin social and affective processes. We are living in an ever-changing socioaffective world, full of unexpected challenges. The ageing population and an increasing prevalence of depression are social phenomena on a global scale. Social isolation and loneliness caused by measures to tackle the current pandemic affect physical and psychological well-being of people from all walks of life. These global issues require timely research efforts to generate potential solutions. In this regard, social and affective neuroscience research using computational modelling, longitudinal research designs and multimodal data integration will create knowledge about the basis of adaptive and maladaptive social and affective neurobehavioural processes and responses [72][73][74] . Such knowledge offers important insights into the precise delineation of brain-symptom relationships, and hence the development of prediction models of cognitive and socioaffective functioning (for example, refs. 75,76 --- Neurology --- Maurizio Corbetta Focal brain disorders, including stroke, trauma and epilepsy, are the main causes of disability and loss of productivity in the world, and carry a cumulative cost in Europe of about € 500 billion per year 77 . The disease process affects a specific circuit in the brain by turning it off or pathologically turning it on . The cause of the disabling symptoms is typically local circuit damage. However, there is now overwhelming evidence that symptoms reflect not only local pathology but also widespread functional abnormalities. For instance, in stroke, an average lesionthe size of a golf ball -typically alters the activity of on average 25% of all brain connections. Furthermore, normalization of these abnormalities correlates with optimal recovery of function 78,79 . One exciting treatment opportunity is 'circuit-based' stimulation: an ensemble of methods that have the potential to normalize activity. Presently, this type of therapy is limited by numerous factors, including a lack of knowledge about the circuits, the difficulty of mapping these circuits in single patients and, most importantly, a principled understanding of where and how to stimulate to produce functional recovery. A possible solution lies in a strategy that starts with an in-depth assessment of behaviour and physiological studies of brain activity to characterize the affected circuits and associated patterns of functional abnormalities. Such a multi-dimensional physiological map of a lesioned brain can be then fed to biologically realistic in silico models 80 --- Psychiatry --- Merete Nordentoft Schizophrenia and related psychotic disorders are among the costliest and most debilitating disorders in terms of personal sufferings for those affected, for relatives and for society 81 . These disorders often require long-term treatment and, for a substantial proportion of the patients, the outcomes are poor. This has motivated efforts to prevent long-lasting illness by early intervention. The time around the onset of psychotic disorders is associated with an increased risk of suicide, of loss of affiliation with the labour market, and social isolation and exclusion. Therefore, prevention and treatment of first-episode psychosis will be a key challenge for the future. There is now solid evidence proving that early intervention services can improve clinical outcomes 82 . This was first demonstrated in the large Danish OPUS trial, in which OPUS treatment -consisting of assertive outreach, case management and family involvement, provided by multidisciplinary teams over a two-year period -was shown to improve clinical outcomes 83 . Moreover, it was also cost-effective 84 . Although the positive effects on clinical outcomes were not sustainable after five and ten years, there was a long-lasting effect on use of supported housing facilities 85 . Later trials proved that it is possible to maintain the positive clinical outcomes by extending the services to five years or by offering a stepped care model with continued intensive care for the patients who are most impaired 86 . However, even though both clinical and feature functional outcomes can be improved by evidence-based treatments 82 , a large group of patients with first-episode psychosis still have psychotic symptoms after ten years. Thus, there is still an urgent need for identification of new and better options for treatment. Most probably, some of the disease processes start long before first onset of a psychotic disorder. Thus, identifying disease mechanisms and possibilities for intervention before onset of psychosis will be extremely valuable. Evidence for effective preventive interventions is very limited, and the most burning question -of how to prevent psychosis -is still open. The early intervention approach is also promising also for other disorders, including bipolar affective disorder, depression, anxiety, eating disorders, personality disorders, autism and attention-deficient hyperactivity disorder. --- Merete Nordentoft is --- epidemiology --- Gabriel M. Leung In a widely anthologized article from the business field of marketing, Levitt 87 pointed out that often industries failed to grow because they suffered from a limited market view. For example, Kodak went bust because it narrowly defined itself as a film camera company for still photography rather than one that should have been about imaging writ large. If it had had that strategic insight, it would have exploited and invested in digital technologies aggressively and perhaps gone down the rather more successful path of Fujifilm -or even developed into territory now cornered by Netflix. The raison d' être of epidemiology has been to provide a set of robust scientific methods that underpin public health practice. In turn, the field of public health has expanded to fulfil the much-wider and more-intensive demands of protecting, maintaining and promoting the health of local and global populations, intergenerationally. At its broadest, the mission of public health should be to advance social justice towards a complete state of health. Therefore, epidemiologists should continue to recruit and embrace relevant methodology sets that could answer public health questions, better and more efficiently. For instance, Davey Smith and Ebrahim 88 described how epidemiology adapted instrumental variable analysis that had been widely deployed in econometrics to fundamentally improve causal inference in observational epidemiology. Conversely, economists have not been shy in adopting the randomized controlled trial design to answer questions of development, and have recognized it with a Nobel prize 89 . COVID-19 has brought mathematical epidemiology or modelling to the fore. The foundations of the field borrowed heavily from population dynamics and ecological theory. In future, classical epidemiology, which has mostly focused on studying how the exposome associates with the phenome, needs to take into simultaneous account the other layers of the multiomics universe -from the genome to the metabolome to the microbiome 90 . Another area requiring innovative thinking concerns how to harness big data to better understand human behaviour 91 . Finally, we must consider key questions that are amenable to epidemiologic investigation arising from the major global health challenges: climate change, harmful addictions and mental wellness. What new methodological tools do we need to answer these questions? Epidemiologists must keep trying on new lenses that correct our own siloed myopia. feature [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected] Published online: 27 January 2022 https://doi.org/10.1038/s41562-021-01275-6 --- Gabriel M. Leung is Helen and Francis --- Competing interests The authors declare no competing interests.
feature modernist myths, particularly their homophonic promises 7 . But there remain persistent challenges, such as the seductive and rampant power of one-size-fits-all progress, and the actions of elites, who thrive on emulation, and in doing so fuel run-away consumerism. To combat these challenges, I simply reassert that 'nature' is far from having outlasted its historical utility. Anthropologists must join forces and reanimate their common exploration of the immense possibilities contained in human bodies and minds. No matter how overlooked or marginalized, these natural potentials hold the key to what keeps life going.
Introduction The epidemic of diabetes mellitus and its complications has become one of the major health challenges around the globe [1]. According to the International Diabetes Federation , 537 million adults had diabetes in 2021, and this number is predicted to reach 634 million by 2030 and 783 million by 2045 [2]. China is one of the countries with the highest prevalence of diabetes in the world [3]; about 140 million people suffered from the disease in 2021. As a severe, complex and lifelong chronic disease, diabetes mellitus requires long-term care and treatment, and is one of the top leading causes of death and disability [4], resulting in enormous economic and social burdens on society and individuals [5,6]. Diabetes has also become one of the major public health issues in China [7][8][9], hence, the management of diabetes intervention is of great importance [8]. The management of diabetes includes not only the guidance of medication usage but also a variety of comprehensive management strategies, such as lifestyle management [10]. The Chinese government launched the National Basic Public Health Services Program in 2009 [11], including the management of patients with diabetes as an important component. Diabetes patients are managed by community healthcare providers and medical staff, and public health services are provided for free [12]. Basic public health services include physical examination, regular follow-up visits, and health education for patients with diabetes [12]. Diabetes health education services contain regular exercise, diet, weight control, smoking control, and alcohol restriction [13,14]. Previous studies confirmed that diabetes management services and health education are the most cost-effective ways to control diabetes [15][16][17]. Individuals with diabetes self-management knowledge or higher health literacy are more likely to prevent diabetes better [18,19]. Older patients with diabetes are more likely to have more health risk factors [13]. Numerous studies have assessed the effects of diabetes health education services on diabetes control and prevention [20][21][22]. Most studies on diabetes management focused on diabetes patients in specific regions, and most of the participants were managed by community health centers [23,24]. A study has shown that disadvantaged people with diabetes in rural China underutilize health services [25]. Living in a rural area may experience a particular barrier to diabetes self-management, including costs, transport problems and limited health service access [26]. Compared to urban areas, rural patients in China have limited access to diabetes services and education resources [27]. In addition, patients living in rural areas have a lower level of awareness and ability to manage their diabetes [28], but few studies have investigated the factors associated with urban-rural disparities in the utilization of diabetes public health services. Identifying such factors may assist in improving diabetes public health services in rural areas. Existing studies have highlighted that strengthening diabetes management and improving health education methods can increase patients' awareness of self-management [19,29] and improve their health status [30]. Thus, this study aimed to examine the utilization of diabetes public health services, and to explore the factors associated with such utilization in diabetes patients. Findings from this study may offer support in improving the delivery of diabetes public health services for people with diabetes, and better achieve primary and secondary prevention of diabetes to enhance glycemic control in people with diabetes. --- Methods --- Data source Data for this study were obtained from the China Health and Retirement Longitudinal Study , 2018 wave. The CHARLS, conducted by Peking University, is a publicly available interdisciplinary survey with adults aged over 45 years old in China [31]. The 2018 CHARLS data has a high response rate of 85%, and the data are nationally representative of high-quality [32]. CHARLS used a multi-stage stratified probabilityproportional-to-size sampling method and face-to-face interviews with respondents [32]. The interview covered several aspects, such as basic information, health status, financial status, medical expenses and insurance [32]. By the time the national follow-up was completed in 2018, its sample had covered 19,000 respondents in 12,400 households [31]. The investigation was conducted in accordance with the guidelines of the Declaration of Helsinki and was approved by the Peking University Ethics Review Board, and all participants signed a written informed consent form [31]. --- Participants and definition The diabetes patients were defined as self-reported being diagnosed with diabetes or elevated blood glucose having a history of diabetes or elevated blood glucose during the last visit. We retain patients who answered "yes" to the question "Was diagnosed with diabetes or hyperglycemia by a doctor?" Patients who responded "yes" and those selected in the past as having the disease of diabetes, i.e., excluding non-diabetic patients. To understand the current status of diabetes public health services in China in recent years, urban-rural disparities, and their risk factors, this study restricted the sample to patients with diabetes in the latest CHARLS data. Finally, a total of 2976 diabetic patients were included in the analyses. --- Measurements In this study, diabetes public health services were defined as diabetes physical examination and health education. In CHARLS, participants were asked if they have used diabetes physical examination or health education in the past year. Among them, the diabetes physical examination is "Have you had diabetes physical examination by doctors during the last year?", the answer is "yes" or "no". Health education is "Have your care providers ever given you health education/advice on the following?", and the options include weight control, diet, exercise, and smoking control. Covariates include individual demographic , socioeconomic characteristics , and health status , Among them, Age was divided into 45-59 years old group, 60-75 years old group and 75 years old and above group. Education level was divided into four groups-illiterate/semiliterate, primary school, junior high school, and senior high school or above. Marital status was classified into three groups-married and living with a spouse, married but not living with a spouse, and single. Glucose control is a measure of how seriously patients take glucose monitoring, in terms of whether they are clear about their blood glucose status. Patient glucose control was measured by three options: blood glucose is under control, blood glucose is not under control, and not sure. Self-reported health was divided into three groups-good, bad or fair. The types of medical insurance are divided into urban and rural resident medical insurance, urban employee medical insurance and other types. --- Statistical analyses Descriptive statistics on public health services utilization with diabetes were expressed in frequency and percentage. The chi-square test was applied to estimate urbanrural differences in the use of public health services for people with diabetes and its differences between different populations. Logistic regression models were performed to analyze the factors of diabetes public health services utilization. Statistically significance was considered as P ≤ 0.05. --- Results --- Basic characteristics of the participants and urban-rural disparities The characteristics of the participants are shown in Table 1. Among the 2976 participants included in the analysis, 79.2% lived in rural areas. About half of the patients were between the ages of 60 and 75. With respect to education level, 56.9% were illiterate/ semiliterate,19.9% had primary school education, 15.0% had secondary school education, and 8.2% had senior high school and higher education. The majority of the participants were married and living with a spouse. Only 14.2% of patients reported living in good health status. 82.7% of people are using urban and rural resident medical insurance. In addition, 64.7% of the participants considered their glycemic control to be bad. Participants from urban had better health status and higher blood glucose control levels than those from rural areas. --- Diabetes public health services utilization and urban-rural disparities Table 2 shows the utilization of public health services and urban-rural disparities among diabetes patients in China. 91.6% had not been examined for diabetes in the past year, indicating a low utilization of public health services by people with diabetes. 71.6% of the patients had not used any diabetes health education. Urban-rural disparities in diabetes health education existed as well. Compared with urban diabetic patients, rural diabetic patients have poorer access to diabetes health education programs . --- Diabetes public health services utilization by population groups Table 3 shows the comparison of diabetes public health service utilization by different groups of diabetes patients. Patient age was associated with the use of basic public health services . Compared with patients living in better health status, patients living in worse health status have poorer access to diabetes health education programs . Among patients who had been examined for diabetes in the past year, 71.1% had good glucose control and as many as 81.9% got married and were living with their spouse . Patients' glucose control, education level, marital status, health insurance, place of residence, and social activity are associated with patient access to relevant health education. For example, Patients with better glucose control were more likely to go on to use health education on weight control than those who were unsure whether their blood glucose was under control . --- The factors associated with the utilization of Diabetes public health services The factors associated with public health service utilization are shown in Table 4. Diabetes patients reporting poor health status were more favorably examined for diabetes than those reporting good health status . Compared with participants with uncontrolled blood glucose, those with controlled blood glucose used more diabetes physical examination . Patients aged 60 years and above made less use of health education services compared to those aged 45-59 years. Patients living in bad health status used more health education on weight control , exercise and diet than those living in good health. Compared to patients who were married and living with their spouse, patients who were married but not living with their spouse used even less health education on exercise . Compared to those with low levels of education, highly educated patients use more weight health education , exercise health education , and diet education services. In addition, blood glucose control was positively associated with receiving basic public health services . --- Discussion This study demonstrates the utilization of public health services for people with diabetes in China. We found that only a few patients used diabetes physical examinations and health education in the past year. Urban-rural disparities in the use of diabetes health education existed, with a high rate of use of diabetes health education in urban areas. The study examined the association between patients' utilization of public health services and participants' characteristics. Rural and lower socioeconomic status diabetes patients are at a disadvantage in terms of utilization of basic public health services. Across all age groups, patients between the ages of 60 and 75 years participated more in basic public health services. Patients' utilization of public health services for diabetes was related to their self-reported health, patient attention to blood glucose monitoring, education level, marital status, and social activities. Our study found that rural areas had more patients with poor health status and worse access to diabetes health education, which is consistent with previous studies [33]. This demonstrates the urgent need for improved diabetes health education in rural China by increasing access to diabetes education programs for those with poor health status. This study also found that rural patients were less likely to use health education on all types of diabetes than their urban counterparts. The reasons for the urban-rural disparities remain unclear. One of the potential reasons lies in the inequitable allocation of basic community public health services facilities between rural and urban areas leading to the lack of easy access to diabetes education programs in rural areas [34]. Another reason may also be due to the fact that urban patients have more awareness of health education programs [17], compared to rural patients [35], since rural diabetic patients have poor health literacy [36]. Technology and mHealth can be used in the future to effectively reduce barriers to rural diabetes self-management and improve health outcomes [37,38]. The study found that the proportion of the population using education programs on tobacco control was lower in rural areas than in urban areas, which a previous study demonstrated already [39]. The phenomenon may be explained by the fact that people of poor socioeconomic status are at greater risk of developing tobacco dependence [40]. In addition, rural patients may have a lower awareness of the health risks associated with smoking [41]and therefore place less emphasis on tobacco control education. Provide specific training for diabetes educators and medical advisors to prioritize tobacco use issues [42]. Self-reported health status has usually been considered as a valid and reliable measure [43]. In our analysis, health status is associated with the utilization of diabetic public health services. This suggests that good self-health can produce motivating behaviors to improve diabetes, which is consistent with previous studies. [44]. This study found that compared with patients with good self-perceived health status, patients with poor self-perceived health status are more willing to use diabetes health examination and education. This may be because, according to the Health Belief Model [45], poor health beliefs promote behavioral changes in patients, so that they may actively seek public health services for diabetes [46]. This study also found that, compared with patients with uncontrolled blood sugar, patients with better blood sugar control use more health education, this may be because participating in health education allows patients to better control their blood glucose [19]. At the same time, poor glycemic control or relapse will make patients unwilling to continue to use health education [47]. Therefore, diabetes health educators can provide support to patients in the form of personalized counseling and telehealth sessions to help them build confidence to cope with the disease and overcome their fears [48]. Our study found a low use rate of diabetes physical examination and health education among poorly educated patients, compared to those who were more educated. This result aligns with other studies [49]. This may result from the fact that a higher education levels can improve diabetes awareness [50], and patients with higher education levels are more willing to accept diabetes education services. Meanwhile, from the aspect of health education, women with diabetes used more Notes: A type of health education refers to the patient has received at least one of the four types of health education . Four types of health education refer to patients having received all of the four types of health education . Health education on weight: whether the patient had received health education on weight control; health education on exercise: whether the patient had received health education on exercise; health education on diet: whether the patient has received health education on diet; health education on smoking: whether the patient has received health education on smoking cessation exercise and diet education, compared to men with diabetes. Existing evidence shows that women are known to have more awareness of diabetes than men [51] and that women are more willing to control their blood glucose levels [50]. Older patients over the age of 75 participated the least in basic public health services, probably because the older patients were in poor health and had difficulty using public health services [52]. With frail older patients already, long distances and transportation are barriers to older adults using public health services [53]. This guides the home health care efforts we should promote for people with physically inconvenient diabetes [35]. Older patients have limited knowledge and can easily overlook health issues [53] or fail to understand the professional messages of health service providers [54]. This requires healthcare providers to provide easy-to-understand forms of service delivery, such as one-on-one counseling, so that older patients can understand and implement these services well [55]. Globally, it is well known that public health service utilization of diabetes is below expectation [56,57], this is consistent with our study. Especially in some low-and middle-income countries with poor health care systems [58], the burden of diabetes is not affordable for diabetes patients and their families. The lower utilization of basic public health services makes patients' Notes: Health education on weight: whether the patient had received health education on weight control; health education on exercise: whether the patient had received health education on exercise; health education on diet: whether the patient has received health education on diet; health education on smoking: whether the patient has received health education on smoking cessation. Blood glucose control: patients' knowledge of their own glucose control; *P ≤ 0.05; **P ≤ 0.01 self-management literacy and ability poor, thus failing to meet the requirements of blood glucose control and endangering their health. China has the most significant number of people with diabetes in the world, yet in rural China, the quality of basic public health services for diabetes is poor [59]. Thus, evidence from China on the utilization of basic public health services for diabetes may be generalized to LMICs among others, and further contribute to improving global control of diabetes. Our study results may shed light on practical insights for increasing the use of diabetes physical examination and education in other developing countries. This study is subject to several limitations. First, as a cross-sectional study, causal relationships are not able to be identified. Second, although the selected data were well controlled, there may be recall bias may exist because many of the questions were self-reported by patients. Third, CHARLS obtains data from middle-aged and older adults in China and the results are more difficult to extrapolate to young people. Last, the factors associated with the use of public health services were limited to the demand-side perspective and did not include those associated with the supply side. --- Conclusion Diabetes patients with low socio-economic status, such as those in rural areas or those with low education levels used less diabetes public health services. Urban-rural disparities in the utilization of diabetes health education and the utilization were affected by education level and health status. Providing convenient health service infrastructure facilitates the utilization of basic public health services for diabetes in older patients with diabetes, especially in rural areas. Also, Health education services in the form of personalized counseling are more likely to attract vulnerable populations with diabetes to utilize health education programs. --- Data Availability The datasets used in this study are available in the China Health and Retirement Longitudinal Study repository, [http://charls.pku.edu.cn/zh-CN]. --- Abbreviations --- CHARLS --- --- --- Competing interests The authors declare that they have no competing interests. ---
Background Basic public health services for diabetes play an essential role in controlling glycemia in patients with diabetes. This study was conducted to understand the urban-rural disparities in the utilization of basic public health services for people with diabetes and the factors influencing them.The data were obtained from the 2018 China Health and Retirement Longitudinal Study (CHARLS) with 2976 diabetes patients. Chi-square tests were used to examine the disparities in the utilization of diabetes physical examination and health education between urban and rural areas. Logistic regression was performed to explore the factors associated with the utilization of diabetes public health services. Results Among all participants, 8.4% used diabetes physical examination in the past year, and 28.4% used diabetes health education services. A significant association with age (OR = 0.64, 95% CI:0.49-0.85; P < 0.05) was found between patients' use of health education services. Compared with diabetes patients living in an urban area, diabetes patients living in a rural area used less diabetes health education. (χ2= 92.39, P < 0.05). Patients' self-reported health status (OR = 2.04, CI:1.24-3.35; P < 0.05) and the use of glucose control (OR = 9.33, CI:6.61-13.16; P < 0.05) were significantly positively associated with the utilization of diabetes physical examination. Patients with higher education levels were more likely to use various kinds of health education services than their peers with lower education levels (OR = 1.64, CI:1.21-2.22; P < 0.05).Overall, urban-rural disparities in the utilization of public health services existed. Vulnerable with diabetes, such as those in rural areas, are less available to use diabetes public health services. Providing convenient health service infrastructure facilitates the utilization of basic public health services for diabetes in older patients with diabetes, especially in rural areas.
for women [2]. Older female workers generally have more health problems compared to their male counterparts [3]. Sex differences are especially apparent in depression and depressive symptoms [4]. Depressive symptoms have been found to be associated with poor work outcomes, such as early exit from the labour market, disability, and loss of productivity [5][6][7]. Because sex differences are also present in working conditions [8], they may play a role in explaining sex inequalities in mental health. It has been proposed that, while most research has focused on sex differences, a distinction should be made between sex and gender [9]. While sex is a biological construct, whereby an individual is defined as being male or female according to genetics, anatomy and physiology, gender is a social construct. Gender norms affect people's behavior, perceptions of themselves and others and how they interact [10]. They can become manifest in gender roles. Gender roles "represent the behavioral norms applied to men and women in society, which influence individuals' everyday actions, expectations, and experiences. Gender roles often categorise and define individuals within the family, the labour force, or the educational system" . The distinction between sex and gender is important because sex and gender may have a different effect on health and vulnerability to stressors [11][12][13][14][15][16]. Two hypotheses, that are not mutually exclusive, have been proposed as to how working conditions may play a role in sex and gender inequalities in health. The differential exposure hypothesis [17] posits that men and women are exposed to different working conditions. Women usually have jobs with more psychosocial demands, have less autonomy, and have less variation in their tasks compared to men [8,18]. There is some evidence that gender differences in working conditions are larger than sex differences [14]. Poor working conditions, such as low job control, high job demands, and low social support, have been found to be associated with poor mental health [19][20][21][22][23]. Therefore, they could be mediators of the relationship between sex and/or gender and health. Another hypothesis is the differential vulnerability hypothesis, which states that men and women react differently to the same working conditions and thus, their vulnerability to these risk factors differs [17]. Some studies found that the health effects of social support at work were stronger for women than for men [24,25], and that men benefit more from autonomy at work than women, in terms of health [25]. However, a meta-analysis on the effect of working conditions on depressive symptoms did not find support for sex differences in the magnitude of this association [21], which does not support the differential vulnerability hypothesis for this particular case. Most studies on working conditions and sex inequalities in health so far have focused on the entire working population or on specific sectors. Research on older workers is scarce. To be able to extend working lives, a focus on older workers is necessary. Furthermore, most studies only focused on sex differences and neglected the role of gender. Although nowadays workers work up to higher ages with health problems compared to past decades, unhealthy workers still leave the labour market earlier than those in good health [26,27]. Identifying determinants of poor mental health and clarifying underlying pathways leading to sex and gender inequalities in health is necessary to develop and implement interventions aimed at improving health of older workers and extending working lives for both sexes and genders. Therefore, the aim of the current study is to investigate 1) the association of sex and gender with depressive symptoms in older workers, and 2) the role of working conditions regarding these sex and gender inequalities, by testing the differential vulnerability hypothesis and the differential exposure hypothesis. --- Materials and methods --- Sample and design We used data from the Longitudinal Aging Study Amsterdam . LASA is an ongoing, prospective cohort study, based on a representative sample of the older population in the Netherlands. LASA focuses on the determinants, trajectories and consequences of changes in physical, cognitive, emotional, and social functioning in older adults aged 55 years or older. Measurements are conducted approximately every three years and include a main face-to-face computer assisted interview, a face-to-face computer assisted medical interview in which clinical measurements are performed and additional questions are asked, and a self-administered questionnaire. The study received approval by the medical ethics committee of the VU University medical center. Signed informed consent was obtained from all study participants. Sampling, response and procedures are described in detail elsewhere [28]. For the current study, we adopted a lagged-effect design, because we expected that with ageing, older workers would increasingly be affected by their gender role and working conditions , and that this would result in higher depressive symptoms scores in the course of time. Thus, we assumed a temporal precedence of gender roles and working conditions, as opposed to an immediate effect on depressive symptoms. Accordingly, data from 2012-2013 and 2015-2016 were used. At T1, 1023 respondents participated in the LASA study. We excluded those who did not have a paid job at T1 , those who did not participate at T2 , and those who did not have a paid job at T2 . We ended up with a sample of 313 older workers. --- Measures Outcome Our outcome measure was depressive symptoms, measured using the Center for Epidemiologic Studies Depression Scale [29]. The CES-D is a 20-item self-report scale ranging from 0 to 60, with higher scores reflecting more depressive symptoms. The outcome was measured at T2 . --- Independent variables All independent variables were measured at T1 . Sex We included biological sex, derived from the population registers, as an independent variable. Gender We constructed a gender index, based on the work of Smith and Koehoorn [9] on gender roles in the labour market. Smith and Koehoorn included four gender items in their index: responsibility for caring for children, occupation segregation, number of working hours, and level of education. Because in our sample of older workers responsibility for caring for children was not applicable, we chose to include a measure of informal caregiving. Providing informal care is much more common among women compared to men and is seen as a more feminine role [30,31]. As suggested by Smith and Koehoorn, we also included a measure of household responsibilities. Furthermore, Smith and Koehoorn suggested to include a measure for primary earner status. Unfortunately this information was not available in our data. We therefore chose to include income in our index. While Smith and Koehoorn use relative measures for educational level and number of working hours, we use absolute measures for these items, because we consider absolute measures to reflect broader societal gender roles rather than gender roles within the household. The gender index consisted of the sum score of six items: number of working hours, income, occupation segregation, level of education, informal caregiving, and time spent on household chores. For each gender item, a higher score represents more femininity and a lower score represents more masculinity. Respondents were asked about their number of working hours per week. Responses were categorised into quartiles and recoded so that a higher score represents more femininity. To assess the income of the household, respondents were asked what their monthly household income was, choosing from 24 categories, with the lowest category being €454-€567 and the highest category €5446 or more. To ensure comparability of income between persons with and without a partner in the household, income was multiplied by 0.7 for respondents with a partner in the household. The factor 0.7 is the inverse of the squareroot of 2, i.e., the number of household members. This correction makes the incomes of all respondents equivalent to oneperson household incomes [32]. Income was categorised into quartiles and recoded so that a higher score represents more femininity. Occupation segregation was measured by the percentage of female workers in the sector. Using data from Statistics Netherlands, we assigned each sector to one of four categories in accordance with Smith and Koehoorn [9]: ≤ 25% female workers, 26-50% female workers, 51-75% female workers, and ≥ 76% female workers. Respondents were asked about their highest completed level of education. We used the International Standard Classification of Education 2011 [33] to categorise educational level into three groups: low , intermediate , and high . Again, scores were recoded so that a higher score reflects more femininity. Respondents were asked if they recently provided help with household chores to somebody outside the own household, and whether the respondent provided help with personal care to somebody inside or outside the own household. If so, questions were asked about the intensity of care. Informal caregiving was categorised into not giving informal care, giving < 8 h of informal care per week, and giving ≥ 8 h of informal care per week. Respondents were also asked about the time spent on light and heavy household chores. Time in minutes per day, averaged across the past 14 days, was categorised into quartiles. The gender index ranged from 0-22 and was dichotomised at the median into masculine and feminine to enable comparison of its association with depressive symptoms with the association of biological sex with depressive symptoms. --- Working conditions We used a written questionnaire to obtain data on working conditions [34]. Respondents could answer never, sometimes, often, or always to all questions on working conditions. To measure physical demands five items were used: 'use of force' , 'using tools that cause vibration or shaking' , 'working in an uncomfortable position ', 'standing for a long time' , and 'kneeling down or squatting' . Psychological demands consisted of two items: 'working very fast' , and 'having to do a lot of work' . For cognitive demands, six items were used: 'think of solutions' , 'learn new things' , 'requires creativity' , 'requires thinking intensively' , 'requires focus' , and ' requires attention' . Autonomy was measured with three items: 'control over how to do the job' , 'control over sequence of tasks' , and 'control over when to take time off ' . For variation in tasks one item was used: 'having variation in tasks' . And for social support four items were included: 'help and support of colleagues' , 'colleagues willing to listen to work related problems' , 'help and support of supervisor' , and 'supervisor willing to listen to work related problems' . Sum scores were made for each type of working conditions and scores were dichotomised using the median due to non-linearity. Control variables Age was derived from the population registers. --- Statistical analysis Multiple imputation was used to deal with missing values, which were assumed to be missing at random. All independent, control and the outcome variables were included in the imputation process and the number of imputations was set to 30, based on the percentage of missing values [35]. To assess to what extent the separate gender items as well as the gender index are associated with sex, we conducted logistic regression analyses [36]. We used Structural Equation Modeling to estimate the associations visualised in Fig. 1. All analyses were adjusted for age. Separate models were examined for sex and gender. We used tobit regression analyses to estimate the associations of sex/gender and the working conditions with depressive symptoms, because the depressive symptoms scale is skewed to the right due to the detection limit at the lower end of the scale. Tobit models account for this left-censoring by assuming a normal distribution that is cut off at zero. --- Differential vulnerability hypothesis To test whether gender/sex is a moderator in the association between working conditions and depressive symptoms, we built models with an interaction between sex/gender and the working conditions . In case of a statistically significant interaction, the association between the working conditions and depressive symptoms varies across sexes/genders. --- Differential exposure hypothesis To investigate whether working conditions explain the association between sex/gender and depressive symptoms, we built single mediator analyses . To estimate the c paths and the b paths , we used tobit regression analyses, and for the a paths , we conducted logistic regression analyses. We used causal mediation analyses to estimate the indirect effects [37]. We used bootstrapping techniques to calculate the 95% confidence intervals --- Results Table 1 shows the characteristics of the sample. 18.1% of men and 70.6% of women were categorised as feminine on the gender index. --- Associations between sex and gender The logistic regression analyses showed that the separate gender items were all associated with biological sex, except for educational level . A higher income and a higher number of working hours was associated with male sex whereas providing informal care, spending more time on household chores, and having an occupation with a majority of female workers was associated with female sex. The gender index constructed from these items also showed a statistically significant association with biological sex . --- Associations between sex/gender and depressive symptoms Female sex and femininity were both statistically significantly associated with more depressive symptoms. --- Differential vulnerability hypothesis We then added interaction terms to examine whether sex and gender were effect modifiers in the associations between working conditions and depressive symptoms. None of the interaction terms were statistically significant. We therefore concluded that the differential vulnerability hypothesis was not confirmed by our data . --- Differential exposure hypothesis Next, we built single mediator models to investigate the mediating role of working conditions in the association of sex and gender with depressive symptoms . We found that autonomy and variation in tasks partially mediated the association between gender and depressive symptoms. In the a path, femininity was positively associated with physical demands , and negatively associated with cognitive demands , autonomy , and variation in tasks B = -0.50, 95%CI = -1.00;-0.01). In turn, in the b path, high levels of autonomy and variation in tasks were associated with fewer depressive symptoms, but physical and cognitive demands were not. The indirect effects of For the association between sex and depressive symptoms we found no mediators. No significant associations were observed in the a path. In the b path, autonomy and task variation were associated with depressive symptoms. None of the indirect effects were significant. The mediation effects for the association between gender and depressive symptoms were only partial: even after controlling for these mediators, the direct effect of sex/gender on depressive symptoms remained substantial . Therefore, these results partially support the differential exposure hypothesis. --- Discussion The aim of this study was to investigate the association of sex and gender with depressive symptoms in older workers, and to examine the role of working conditions regarding these sex and gender inequalities, by testing two hypotheses: the differential vulnerability hypothesis and the differential exposure hypothesis. Our results first show that there was a strong association between biological sex and gender as measured by an index including stereotypical gender roles, i.e. number of working hours, income, occupation segregation, level of education, informal caregiving, and time spent on household chores. This association indicates that these gender roles are still very much embedded in society. If one would assume equal pay between men and women, equal household and care responsibilities, and equal employment conditions, 50% of men and women would be characterised as masculine on this index and 50% as feminine. However, in our sample, 18.1% of men and 70.6% of women were categorised as feminine. These findings support the persistence of gender stereotypes, despite some progress toward egalitarianism in the last decades, as described by Haines et al. [38]. Both biological sex and gender were associated with depressive symptoms, with women and those categorised as feminine being disadvantaged. Although sex differences in depressive symptoms have been well established [4], gender differences have been largely neglected. Our results show that, in older workers, the gender inequalities may be even larger than the sex inequalities . We investigated two hypotheses that could give insight into the role of working conditions in sex/gender inequalities in depressive symptoms: the differential vulnerability hypothesis and the differential exposure hypothesis. In line with the meta-analysis by Theorell et al. [21], we did not find support for the differential vulnerability hypothesis, as indicated by the absence of a statistically significant interaction effect between sex/gender and working conditions in our data. Thus, we did not find support that sex/gender differences in depressive symptoms can be attributed to sex/gender differences in the effect of working conditions on depressive symptoms. We did, however, find partial support for the differential exposure hypothesis, in line with previous studies on several mental health outcomes [18][19][20]. Workers categorised as feminine experienced less autonomy and less variation in tasks than workers categorised as masculine, which in turn is associated with more depressive symptoms. Gender differences in perceived working conditions were generally larger than sex differences, highlighting the importance of including gender and sex as separate constructs in studies on working conditions. This finding is in line with findings from a recent study by Kerr et al. [14]. In our study, gender was operationalised as gender roles, including income and educational level. Evidence shows that workers who earn lower wages and have lower educational levels, have higher job demands and less psychosocial resources at work, even after controlling for sex [39]. It may be that the sex differences in working conditions as found in previous studies may actually be due to gender roles. In such studies, biological sex serves as a proxy for gender. Our study, in contrast, shows the benefit of capturing gender roles directly. There is an obvious overlap between labour-market gender and socio-economic position, as women of the generation studied achieved lower levels of education, and work in lower-level jobs with lower wages even compared to their male peers. This raises the question if the difference in depressive symptoms that we find should be interpreted as based on gender or rather on socioeconomic position. Vice versa, reports on an association between socio-economic position and depressive symptoms among older workers might actually be rooted in labour-market gender status. The several indicators of our gender index mutually reinforce one another, and it is the composite score on the six indicators that together represents gender roles relevant to the labour market. Moreover, the social position of both women and men is at stake, and the implications regarding improvement of working conditions to extend working lives run in the same vein [40]. Especially in these times, with gender inequality widening due to the global COVID-19 pandemic [41] and new trends in remote and hybrid work, it is important for employers to recognise the effects of psychosocial resources at work. By improving autonomy and variation in tasks, sex and gender inequalities in depressive symptoms may be reduced. This study has several limitations. First, we constructed a gender index by taking the index proposed by Smith and Koehoorn [9] as a starting point. We adapted their gender index based on their recommendations, availability of our data, and to reflect broader societal relevance. The validity of our gender index should be tested in other datasets and other national contexts. Gender differences in educational attainment and income vary across countries [9]. Regarding educational attainment, the sex difference has decreased in the past decades. In future studies, it may be an option to exclude education from the labour market gender index [42]. Furthermore, the Netherlands is known for its relatively large proportion of part-time female workers [43]. As ony a small minortity of men work part-time, this may widen the gender gap among older workers in terms of earnings, women's slower progression into management roles, and an unequal division of unpaid work at home [44]. Also, gender differences in mental health vary across countries [45,46], and countryspecific policies and institutions may affect the health of women and men in different ways [47]. For these reasons, similar studies in other national contexts are recommended. Also, by summing the gender items to an index, we made assumptions about the relative contribution of each of the components. The weighting of items is also subject to further research, as is the use of the gender index as a continuum rather than as a dichotomy. Second, besides gender roles, examining gender identity may give added insight into gender differences [10]. Unfortunately, no data on gender identity were available in our dataset. Third, reversed causation may be an issue, i.e. depressive symptoms may affect working conditions instead of the other way around. However, depressive symptoms were measured at T2 while the working conditions were measured at T1. Also, previous research on working conditions and mental health shows that, in this context, reversed causation is not likely [48,49]. Fourth, in our study we focused on working conditions as possible mediators. While some of these working conditions indeed mediated the association between gender and depressive symptoms, a large part of the inequalities remained unexplained. In a larger dataset, multiple mediator models could be built to estimate the total mediating effect of multiple working conditions. Other work characteristics such as type of employment and emotional demands may also play a mediating role. In addition, the literature on sex differences in depression in the general population suggests a range of other possible mediators, e.g., negative life events such as widowhood, chronic illness, coping styles, emotional support [50,51]. Fifth, our results may be influenced by the healthy worker effect, i.e. healthy individuals are more likely than their unhealthy peers to be active in the labour market [52]. Since women leave the work force earlier and more often than men due to mental health issues [53], our specific sample may show weaker associations than a younger sample of workers would. Sixth, due to collinearity we could not build models which included both sex and gender to disentangle their effects. Therefore, the effect of gender may be partly due to biological sex and vice versa. Last, but not least, our sample is relatively small, which may limit generalizability even though it is populationbased. In order to support generalizability to the general population of older workers, we compared the work participation of our cohort with the work participation for the general population as provided by Statistics Netherlands . This comparison could be made for the subsample with birth years 1950-1954 at the age of 60 years, which is the average age of our cohort at baseline. We found very similar, if not slightly higher, percentages: Men = 71.7%, Men = 73.8%; Women = 48.9%, Women = 52.6%. Regardless, our study may be underpowered. On the positive side, this implies that the associations that we did find are certainly meaningful. In particular, the working conditions that proved to be mediators, i.e., autonomy and task variation, correspond to working conditions that were found to be mediators in the association between education and health across several countries in an earlier study [40]. Also, these working conditions emerged as significant factors to continue work participation in a qualitative study among chronically ill older workers [54]. --- Conclusion In conclusion, our results suggest that sex and gender differences in depressive symptoms are not due to a differential vulnerability to working conditions. Gender differences, however, can be partially attributed to a differential exposure to autonomy and task variation. Implementing workplace interventions targeted at improving these conditions may lead to a reduction of gender inequality in depressive symptoms among older workers, so that both genders have similar chances to reach the retirement age in good mental health. --- --- Abbreviations --- --- --- Consent for publication Not applicable. Competing interests he authors declare no competing interests. ---
Background: Female older workers generally leave the work force earlier than men. Depressive symptoms are a risk factor of early work exit and are more common in women. To extend working lives, pathways leading to these sex inequalities need to be identified. The aim of this study was to investigate the association of sex and gender with depressive symptoms in older workers, and the role of working conditions in this association.We used data from the Longitudinal Aging Study Amsterdam (2012-2013/2015-2016, n = 313). Our outcome was depressive symptoms, measured by the Center for Epidemiologic Studies Depression Scale. We included biological sex, a gender index ranging from masculine to feminine (consisting of six items measuring gender roles: working hours, income, occupation segregation, education, informal caregiving, time spent on household chores), and working conditions (physical demands, psychosocial demands, cognitive demands, autonomy, task variation, social support) in our models. We examined the differential vulnerability hypothesis, i.e., sex/gender moderates the association between working conditions and depressive symptoms, and the differential exposure hypothesis, i.e., working conditions mediate the association between sex/gender and depressive symptoms. Results: Female sex and feminine gender were both associated with more depressive symptoms. The differential vulnerability hypothesis was not supported by our results. We did find that femininity was negatively associated with autonomy and task variation. In turn, these working conditions were associated with fewer depressive symptoms. Thus, autonomy and task variation partially mediated the association between gender and depressive symptoms, supporting the differential exposure hypothesis. Mediation effects for sex inequalities were not significant.Older female workers and older feminine workers have more depressive symptoms than their male/ masculine counterparts. Autonomy and task variation appeared to be important in -partially -explaining gender differences in depressive symptoms rather than sex differences. By improving these conditions, gender inequality in mental health among older workers can be reduced, so that both genders have similar chances to reach the retirement age in good mental health.
INTRODUCTION Indonesia is a country that has a plural society, consisting of various tribes, races, cultures, customs, groups, and religions, as well as social equality. Indonesia alone has about 260 million inhabitants spread across 17,000 islands. The various islands make Indonesia rich in diversity. The diversity owned by Indonesia will give birth to a different culture so that this nation belongs to one of the multicultural country categories . The variety of different cultures makes the wealth of the Indonesian nation that is very high in value. This wealth is very less enjoyed because in compound societies there are often problems that are not harmonious in society . Various problems in the community related to differences, such as differences between groups, violence between groups, clashes between students, and bullying of school children with their friends, show how vulnerable the sense of togetherness in diversity has been built by the founders of the nation . These problems can lead to discrimination among others. This problem cannot be allowed to occur continuously, which is among school children who still need mental and character strengthening . Education becomes a very important tool in the development of a nation, future generations will depend on quality and quality education. Education should be held democratically and uphold human rights, culture, and religious values . As stated in law No. 20 of 2003 on the National Education System Article 4 paragraph mentioned "Education is organized democratically and fairly and is not discriminatory by upholding human rights, religious values, cultural values, and a plurality of the nation". Multicultural education needs to be viewed as a strategic breakthrough where multicultural education is a concept, the idea of philosophy as a belief , and an explanation of the recognition and assessment of the importance of cultural and ethnic diversity in shaping lifestyles, social experiences, personal identities, educational opportunities from individuals, groups and in a country . Multicultural education is also considered a comprehensive and fundamental educational process for all learners. This type of education opposes racism and all forms of discrimination in schools and communities by accepting and affirming plurality . This type of multicultural education should be inherent in the curriculum and teaching strategies, including in every interaction carried out by educators, learners, and families and the overall teaching-learning atmosphere . According to HAR , multicultural education is an education based on multicultural, attitudes and mindset learners to be more open in understanding and appreciating diversity. Multicultural education can instill and change the thinking of learners to truly appreciate ethnic, religious, racial, and inter-racial diversity . While Ainul Yaqin recommends multicultural education as an educational strategy that is applied at all levels of subjects through how to use cultural differences that exist in learners so that the learning process becomes effective and builds character that is able to be democratic, humanist, pluralist in their environment. Karisma Bangsa Global School is a school that contributes to the field of education, which has a global orientation, a school that is multicultural and values student achievement both academically, sports, arts and culture. Karisma Bangsa School organizes elementary, junior and high school level schools using two curricula, namely Cambridge Assessment International Education and national curriculum . Karisma Bangsa School has pillars that are firmly held, namely diversity , superior, responsible and respect for the school environment and outside. Kharisma Bangsa has a mission to provide quality and global education by providing full support to students in developing and awakening all the potential they have in contributing to the world both nationally and internationally. Kharisma Bangsa students consist of students who are multireligious, diverse and very heterogeneous. There are various ethnicities, tribes, religions & cultures. In terms of the beliefs of students who are Muslim as much as 95%, the rest are Christian and Budha. There are students from Sabang to Maroeke, such as students from Papua, Kalimantan, Riau and Jawa island. From the above exposure, the purpose of this article research is to explain and analyze how the implementation of multicultural education values in Kharisma Bangsa Global Education High School in South Tangerang City and what are the challenges and obstacles to the implementation of multicultural educational values there. --- RESEARCH METHOD This research uses a qualitative approach that is descriptive. Qualitative research is one that aims to find the principles and explanations that lead to inference. The type of research used in this study is case study research. According to Muri explained that case study research is a type of qualitative research that refers to a single object, such as an individual interaction, program, a group, an institution, organization or even institution. The goal is to get a detailed exposure information and a deep understanding of the whole event. A case study can generate data from generalizations to theories. Case studies also use various techniques such as observations or surveys, interviews, and archives to collect data . --- RESULTS AND DISCUSSION --- Values of Multicultural Education in Kharisma Bangsa Global Education High School In South Tangerang City Implementation of multicultural education values in Kharisma Bangsa Global Education High School environment in South Tangerang City based on some information obtained by the author, namely; --- Democratic Values The value of democracy or justice is an overarching term in all forms, whether cultural, political or social. Democracy in education is an act of appreciating the diversity of the potential of different individuals in togetherness. As Dewey in said, democracy is defined as a way to live together by members of society in a process to obtain a safe life. The atmosphere of democracy in schools according to him can be realized by mutual acceptance, willingness to live together in differences, respect the ideas of others, fair not discriminatory, and responsible. One form of democratic values in Kharisma Bangsa High School is to provide freedom of opinion and convey ideas in choosing and being elected. This is implied in the framework of student council activities, this student council activity aims to provide opportunities for learners to develop and express themselves in organizing together. This activity is also expected to establish good and harmonious relationships between each other, especially between the upper class with the lower class and in the school environment. In this student council activity can also teach learners about leadership and a sense of responsibility. Learners will accept their new duties as leaders in an organization, learning to be fair, kind and responsible leaders. This will make the experience for learners in the future. The election of the Chairman, Vice Chairman and members of the Student Council was held in a democratic and open manner. All activities held by the Student Council in Kharisma Bangsa are supported by the school in depth and dismay, the learners are given leadership and responsibility training or commonly called Leadership Camp OSIS. The training is guided by educators from Kharisma Bangsa school or bring in some speakers from outside. This activity is carried out 3 times in one semester. Based on observation virtually through zoom held student camp activities, this activity consists of several sessions, such as reading time sessions, seminars or webinars, consultation of learners' plans, then at the end of the session in this activity will be held daily quiz . Humanism Humanism is also practiced as a way of looking that treats man solely because of his humanity, not for any other reason beyond that, such as race, caste wealth and religion . Humanism is a very valuable concept of humanity because it is entirely in favor of humans, upholding human dignity and dignity and facilitating the fulfillment of human needs to maintain and perfect its existence as the noblest being . Human rights in multicultural education is a process of developing all human potential . By understanding or seeing that each learner has their own potential, this indicates that learning and learning need to be adjusted to their needs. The application of humanism values in Kharisma Bangsa High School is through diverse extracurricular activities. This extracurricular activity is a very popular and interesting activity for Kharisma Bangsa learners. This extracurricular Activities the learners are given freedom in following it, in accordance with the talent and interest to be developed. Through this activity also many achievements achieved or achieved by learners. Based on an interview with the principal of Imam Husnan Nugraha; "... As I have revealed that the vision of Kharisma Bangsa fully supports the students in developing all the potential they have, this means that the school provides several activities that are to accommodate the potential of learners. "" Then the results of an interview with high school students Kharisma Bangsa Devina Natharina, according to him: "...there are a lot of activities in school such as events made by the student council, then there is Toska , there is also basketball kb eagles, so we can choose according to what we are interested in. Zhafirah Kamilah also mentioned the same thing that he is very fond and interested in basketball . Kharisma Bangsa School strives as much as possible to accommodate and provide activities in order to develop the potential of learners, among several extracurricular activities in Kharisma Bangsa namely Club Sport : in this activity consists of Basketball, soccer, pencak silat, badminton, fitness, volleyball. Then Club Art : Phothography, saman dance, cooking, Cultural Club Theater, painting and music, singing, storytelling . Technology: Computer, robotic logo-lego mind Stormms gammer, Communication : English, Arabic, Turkish, Japanese, Film, Journalist and Traveling, Sciene : Olympic Science and Sciense olympic project and Tahfidz Al-Qur'an. Humanism in multicultural education is also able to build empathy and sympathy for learners to the suffering of others or their surroundings. In fostering empathy and sympathy . Kharisma Bangsa school has a charity program or charity program. This program is a channel of sympathy, humanity that can be in the form of expressions, poems and donations to be given to the needy. All forms of this program involve the participation activities of Kharisma Bangsa learners. Tolerance Tolerance is defined as the existence of the existence of the existence and greatness of the soul in responding to differences. Students in a school tend to carry or at least be influenced by the family environment in various forms of habits and community environment with their cultural background and also influenced by the religious values they embrace . This value of tolerance is very important to be developed and introduced to learners, so that they can respect and respect and accept the differences of others. Respecting differences does not mean eliminating self-identity, because accepting the real difference is giving opportunities and opportunities to others to do something according to their characteristics . The application of tolerance values in Kharisma Bangsa High School through classroom learning and activities outside the classroom. One form of tolerance values in activities outside the classroom is: The celebration of religious holidays. The celebration of religious holidays is a special time that is awaited for each of its followers. The celebration activity also involves learners as committees. Because in Kharisma Bangsa High School students are diverse backgrounds both racial, cultural, and religious. As in the celebration of the Prophet Muhammad Maulid, Isra Mi'raj, Eid al-Adha and others are held openly and tolerantly for those who want to follow it. Commemorative activities of The Prophet Muhammad commemorated in various competitions aimed at getting to know and love the figure of the Prophet Muhammad Saw. Including the Competition of Love Letters for the Prophet, LCC about Sirah Nabawiah, calligraphy competition, Nasyid as well as the closing event of the competition and the distribution of prizes. If we look at the many differences of opinion in the view of scholars, especially among Muslims about the celebration of the Prophet's maulid, but in Kharisma the Nation tries to accept some of these views by giving freedom of expression in the celebration of the prophet's maulid, for those who celebrate are allowed to make activities or celebrations in school. It turns out that the celebration of the prophet's maulid goes well every year and there is also participation from non-Muslims in enlivening the activity. The author has also participated in prophet's maulid celebration activities held online due to the condition of the covid-19 pandemic . At the prophet's maulid celebration held online, from the competition all read the history of the prophet Muhammad and finally the special webinar event of the Prophet's maulid themed "Love on the Light of the Eternal & The Story of The Hanging Coffee". In the event many give pictures of how to love the Prophet in the present and there are also stories about the Prophet's tolerance towards muslims and non-Muslims, and not from the story of coffee that depends also gives wisdom to fellow humans to help each other. Then the eid al-Adha celebration activity is no less festive also where in this activity becomes a momentum to foster piety for learners and schools to share fellow communities in need. Pada this activity, collecting funds to sacrifice, the school opened donations and involved students in raising funds through Market Day activities. The activity also involved students, student guardians and communities both Muslims and non-Muslims participating. --- Receive differs in sectarian views in Islam. In Kharisma Bangsa, which is majority Islamic from different backgrounds to different countries to the Middle East, making it a container of various views of madzhab from learners and educators. On this is very important to give an understanding of tolerance in the treasures of the madzhab view. As said by Mrs. Kharisma as a Teacher of Islamic Religious Education; "... The charismatic environment of the nation consists of various individuals from different backgrounds , while still respecting other Muslim brothers who do not pray without blame. . The above interview can be concluded that one in accepting differences about the school, learners are not forced to follow other schools, but learners are given an understanding of the madhhab they embrace. Kharisma's mother as PAI teacher provides a deep insight not to vilify each other or blame each other from the madzhab embraced. From some examples of forms of tolerance that have been mentioned above, we can draw the conclusion that tolerance is interpreted by mutual respect, respect and not arbitrary about differences in other individuals or groups. From some of the activities of Kharisma Bangsa High School above, it is expected that learners have knowledge and experience in everyday life with the principle of tolerance that has been taught. Next, Penulis will use the whole-school approach to tolerance education element theory developed by in explaining and explaining the implementation of theories and concepts of multicultural educational values applied in the Kharisma Bangsa School, these elements are: --- School Vision and Policies The vision of the school becomes the most important element in determining the success of multicultural education in the school. According to the author, vision is a skeleton or backbone of all activities carried out in school. So that the vision and policy of the school also explicitly make multicultural education as the core of the vision and policy of the school. From the beginning of the establishment of Kharisma Bangsa school has had a vision that is; "Give full support to students to awaken all their potential, become a person who continues to learn and contribute to the international world and implement the school's basic values of Diversity, Excellence, Responsibility and Respect". From the vision above, the author analyzed that the vision of the Kharisma Bangsa School refers to multicultural education. Kharisma Bangsa which has four pillars of schools, where there are values that are the values of multicultural education. So that when the vision and mission of the school goes well then multicultural educators will be realized. Although the basic values of Kharisma Bangsa include; Values of Diversity which upholds and embraces all differences / diversity that exist in the school environment. Diversity is an inevitability and every religion values diversity and understands it as God's most beautiful gift to His servant. Man was created from the same origin, but it was God who made him a nation, a tribe and a variety of skins and nations. Plurality or diversity is the law of nature or sunnatullah. Humans are created with differences between one another not as a reason to cause conflict between them, but so that they know and understand each other so as to respect each other . This is explained in God's Word: Diversity in the framework of diversity of the Indonesian nation that is very plural, especially in the field of education makes it very important to be entrusted to learners. Schools are a crucible in such diversity and do not discriminate against children of different ethnic, religious and cultural identities. Schools should accommodate students fairly. Such different identities should not be eliminated, but at the same time should not be contradictory and there is always a common ground in difference . َ ‫و‬ َٰ ‫ى‬ َ ‫نث‬ ُ ‫أ‬ َ ‫و‬ ٖ ‫َر‬ ‫ك‬ َ ‫ذ‬ ‫ن‬ ِ ‫م‬ ‫م‬ ُ ‫ك‬ َٰ َ ‫ن‬ ۡ ‫ق‬ َ ‫َل‬ ‫خ‬ ‫ا‬ َّ ‫ن‬ ِ ‫إ‬ ُ ‫اس‬ َّ ‫ٱلن‬ ‫ا‬ َ ‫ُّه‬ ‫ي‬ َ ‫أ‬ َٰٓ َٰ َ ‫ي‬ ِ ‫ٱَّللَّ‬ َ ‫ِند‬ ‫ع‬ ‫مۡ‬ ُ ‫ك‬ َ ‫م‬ َ ‫ر‬ ۡ ‫ك‬ َ ‫أ‬ ‫نَّ‬ ِ ‫إ‬ ْۚ ‫ا‬ َٰٓ ‫و‬ ُ ‫ف‬ َ ‫ار‬ َ ‫َع‬ ‫ِت‬ ‫ل‬ َ ‫ِل‬ ‫ئ‬ َٰٓ ‫ا‬ َ ‫ب‬ َ ‫ق‬ َ ‫و‬ ‫ا‬ ‫وبٗ‬ ُ ‫ُع‬ ‫ش‬ ‫مۡ‬ ُ ‫ك‬ َٰ َ ‫ن‬ ۡ ‫ل‬ َ ‫ع‬ َ ‫ج‬ ‫يرٞ‬ ِ ‫َب‬ ‫خ‬ ٌ ‫ِيم‬ ‫ل‬ َ ‫ع‬ َ ‫ٱَّللَّ‬ ‫نَّ‬ ِ ‫إ‬ ْۚ ‫مۡ‬ ُ ‫َىَٰك‬ ‫ق‬ ۡ ‫ت‬ َ ‫أ‬ ١٣ "O people, Kharisma Bangsa highly appreciates the values of this Diversity, as strong as possible to be held firmly in the environment of Kharisma Bangsa. The value of diversity holds the principle of diversity, every individual in the Kharisma Bangsa environment has diversity. In principle, to borrow Gus Dur's expression, the same should not be distinguished, which is different, do not be equalized. This is in line with the Islamic teaching that difference is God's will. Differences are useful so that we get to know each other and compete in doing good. Therefore, NU scholars teach three types of brotherhood , namely brotherhood of fellow Muslims , brotherhood of fellow citizens and brotherhood of fellow human beings . As Sulalah said diversity does not need to be denied and should be used as a base for rebut over to compete for good . The differences ranging from the sexes, tribes and nations are diverse and can give birth to mutual understanding . From knowing each other is born mutual understanding , then from mutual understanding is born mutual respect . Furthermore, from mutual respect is born mutual trust . Superior Value: Kharisma Bangsa School has high expectations for its students. In achieving the best quality of education starting from the process, products and results that are or will be implemented make a certain advantage for the school. Through programs designed by the school appropriately in developing and maximizing their potential, to deliver them to achieve achievements in both academic and non-academic fields, learners are expected to be intelligent and virtuous graduates, have an attitude of love and appreciate the diversity that resides in the community. Value of Responsibility: Kharsima Bangsa School expects all Kharisma Bangsa residents, both educators, principals, students to have a high sense of responsibility. So that in carrying out their respective duties can be carried out and done well. One of the responsibilities as a citizen of Kharisma Bangsa is to uphold the principles or values of the Kharisma Bangsa school. The value of this responsibility is also given to learners in various activities and organizations of learners. Like the existence of a student council that aims to nurture learners to have a sense of responsibility as a leader. We act by heeding/ paying attention / thinking about the feelings, hopes / desires and rights of people : Respect in this regard is very much considered, where we care about others, the environment around the school and public facilities. We value our institution by demonstrating respectful and dignified behavior. We also do others properly. --- Leadership and Management Successful school leadership in carrying out its role in Indonesian schools is a leader who diligently teaches about values consistent with their own beliefs and personalities. In this multicultural educational context, school leadership should reflect the values of multiculturalism, such as democratic and participatory . Leadership and management in Kharisma Bangsa according to the author has reflected the application of multicultural values seen and analyzed from the number of activities to train leadership and develop good relations between the principal and all school residents, including; through enrichment and periodic training for Kharsima Bangsa educators from elementary-junior high to high school level, joint vacations and outbonds, leadership camp, meeting or visiting the student's home guardians, seminars, workshops, evaluation of educators and others in part. --- Enrichment and Periodic Training for educators Kharisma Bangsa School always supports and participates in organizing periodic trainings organized by the central and regional education agencies. The training provided is also very diverse, ranging from the socialistai of new education policies, curriculum preparation, teaching techniques to teacher certification. Kharisma Bangsa School also always holds enrichment seminars for educators. These seminars are discussing other topics and some are specific about education or empowering and developing educator competence. Based on the academic calendar of educators and education personnel of Kharisma Bangsa High School, in an effort to develop competence, every month the Kharisma Bangsa Foundation conducts meetings from elementary-junior high to high school level, the existence of Teacher Motivation Day, Educator Competency Development Program and others. --- Outbonds and Holidays Together Kharisma Bangsa School annually holds a tourist event with the entire Kharisma Bangsa family. The holiday, which is subsidized by the foundation, aims to develop the spirit of leadership and strengthen relationships between staff, so that interactions between large families are established. Holidays that contain outbound games and eating together in strengthening family relationships. In establishing a close relationship Kharisma Bangsa also annually held a thanksgiving birthday Kharisma Bangsa foundation. In this celebration of many activities that involve members of the Kharisma Bangsa extended family, the family of the murid guardian also enlivened the event. The building of a sense of family and togetherness between foundation managers, educators, and school staff and guardians of students is very important, because the familiarity that is established can be the basic capital in fostering commitment and dedication as part of the Charismatic Nation. --- Please visit the student guardian or home visit Kharisma Bangsa School continues to always strive to maintain the fabric between all school residents, whether working or studying in it. This is important so that the interaction is not too rigid and too institutional. Home visit is usually done at parent club activities, where in this activity will be assembled several events, often invite parenting motivations to add family insight in knowing the development of children. Home visit is also woven when there are several problems of learners, here Kharisma Bangsa school will cooperate closely with parents to talk about the development of their children. As stated by the headmaster"... And here kamil also adds that working very closely with parents. If there are problems about the student's behavior then the class guardian will talk to the elderly, who later parents will come to school or the class to come to the house, so that it can be solved in a quick way these problems. --- Capacity and Culture School culture can be interpreted as a reflection of the philosophy of education embraced by a school. School culture is also commonly referred to as school culture which is a belief and practical system that is reflected in the habits and patterns of interaction between the school community. Culture will always change and therefore can be created. Therefore, the creation of culture in the process becomes very important in the context of multicultural education . According to View author, the culture contained in Kharisma Bangsa high school environment is grouped into two, namely school and classroom culture; Culture schools formed by multicultural values are realized through the following, including; Celebration of religious holidays, celebrations of Indonesian Diversity, and others. Culture or class culture is characterized by praying according to their respective religions and beliefs before the first lesson begins and after the last lesson, carrying out active learning, sharing discussions between learners. --- Student Activities Student activities or activities ranging from intra-curricular and extracurricular activities play an important role in personality formation and tracing of learners' talent interests. These activities must also be designed and planned in such a way that the teachings of multicultural education can be well developed outside of formal activities. The activities of learners at Kharisma Bangsa High School as described above, the author found that these activities have the potential to be multicultural learning containers, namely the Science, Sports, Arts, Music and Language Club, The Diversity Podcast and ISPO festival and OSEBI. In the late days many schools are exploring the talents and interests of learners through race activities. ISPO and OSEBI are media to explore the talents, abilities, and intelligence of learners, enriching contributions to the nation's cultural characteristics by providing opportunities to learners in the development of their intelligence in the fields of science, art and Indonesian. The festival aims to provide a moral message about diversity with students from various regions to get to know each other to uphold togetherness while maintaining diversity. So it can be said that this event is one example of keeping an Indonesian house to remain one in the frame of NKRI. This OSEBI festival consists of categories of writing festivals, solo singing, poetry performances and single creation dances. Then the ISPO festival consists of Olympic projects in biology, physics, chemistry, technology, environment, and computers. Based on an interview with Kharisma National High School Principal Imam Husnan Nugroho: "Every year Kharisma Bangsa hosts ISPO and OSEBI activities which are followed by several schools in Indonesia. This activity is an event to develop and channel the talents and interests of our learners and the introduction of Indonesian culture, ISPO and OSEBI participants every know it is greatly improved, and this activity is in collaboration with eduversal education consultants". According to Farah Fakhirah Khairunnisa: "Through the activities in Kharisma Bangsa school gives us the opportunity to learn and explore ourselves and learn, and discover the talents and interests that we have, such as I like class activities and osebi festivals. In this activity dare to perform and also make know close friends between classes or friends from various regional schools, and I became aware that the culture in Indonesia is very diverse." With these festivals make the spirit and experiences in maximizing the potential possessed by learners. --- Collaboration with Wider Community The involvement of parents and the community in school activities has several objectives including to share the vision of multicultural education, maintain the consistency of school policies, and also control and evaluate programs developed for the success of multicultural education together, making for good cooperation and communication. There are several programs and initiatives at Kharisma Bangsa High School that are carried out to share the vision of multicultural education in increasing the involvement of parents and the wider community in schools such as; Market Day as a form of raising funds for sharing, distribution of food packages for underprivileged communities, in collaboration with various fields of education . From some of these programs Kharisma Bangsa school continues to strive to be able to provide and implement modern learning that continues to adapt to environmental changes and provides high concern for education. --- Multicultural Perspective Islamic Religious Education at Kharisma Bangsa High School Islamic education is a strategic means to shape all the potentials of humans or learners in order to carry out their devotion to Allah SWT by achieving the happiness of life in the world and in the hereafter, as well as a means in instilling values, teachings, experiences, and putting forward the principle of balance . The principle of balance of Islamic religious education taught in human life pays attention to every human need both in the world and the hereafter, physical and spiritual needs, spiritual, material, and others in part by being democratic, tolerant , human, honest, fair, solider, not discrimination, open and accept opinion selectively , innovative, creative, accept change, prioritize Brotherhood and friendship of fellow human beings , rational, trustworthy and responsible. These are among the principles in Islamic education . From the principles of Islamic religious education it can be understood that it is in accordance with the objectives of multicultural education, even wider Islamic education, including multicultural education, so that when Islamic religious education can be carried out properly and correctly then multicultural education will be achieved. But in realizing this, it is a long process including the process of disbursing in individuals, communities and environments. In teaching Islamic education in a multicultural perspective in public schools, especially in Kharisma Bangsa High School found several things that must be considered; Educators and learners need a broad insight into understanding Islamic religious education. According to Ibu Karisma, as a Teacher of Islamic Religious Education, Kharisma Bangsa High School regarding multicultural Islamic religious education; "... In teaching Islamic agama education, an educator must understand that islam and the prophet who brought it is rahmatan lil alamin. Islam is acceptable in any part of the world. Islam entered the customs of the area, in fact, in some places there was cultural assimilation. This makes the pattern of Islam in various places different. It's not in essence. The essence remains the same, but the way used to spread the essence of Islam is different and follows the local culture. I invite PAI educators throughout the country to be more insightful to get to know the Islamic culture spread throughout the universe, so that we are more enlightened and more receptive to differences without shouting "this is heresy and it is haram not in the time of the Prophet". From the above interview, I can understand that Islamic religious education taught at Kharisma Bangsa High School has some of the following principles; Islam Rahmatan Lil' alamin, Important know the history of Islamic culture, because the process of spreading Islam in various countries and regions by looking at cultural patterns, accepting differences without denouncing and vilifying each other. --- Islamic Education Learning Process PAI learning process at Kharisma Bangsa High School uses the 2013 curriculum where educators need to have methods, creativity and innovation in providing islamic religious education learners in the classroom so that learners can learn actively, think critically and provide experiences that students have gained from various diversity, so that they can be used as discussion material for fellow learners. One of the things that Mrs. Kharisma did as a Teacher of PAI Sma Kharsima Bangsa in her teaching is; "Many methods one of them is to create projects about different Islamic traditions that exist in the students' home regions to be told through writing in front of the class, or spread through social media platforms" PAI material that leads to multicultural education is material about unity and unity or ukhuwah taught in grade 10 then for grades 11 and 12 taught about tolerance. This is based on the results of an interview with PAI High School Teacher Kharsima Bangsa; "In implementing multicultural Islamic education, namely through formal activities such as: teaching material about unity, anti-racism, equality while learning and through non-formal activities such as: student council competitions and team guidance and counseling activities that support multicultural activities". Class 10 material on unity and unity or ukhuwwah, Class 11 and 12 material about tolerance". Through materials delivered in the classroom and then practiced in daily activities both in the school environment and outside the school. Then the results of an interview with Pai High School Teacher Kharsima Bangsa; "The Prophet never taught a single way about Islamic discourse. On many occasions he taught way A to a friend, and taught way B to another friend in the same problem. This is what will answer about the formation of a diverse Islamic jurisprudhab if traced further. It is wrong if we as PAI educators cannot understand or even accept the differences that have been very entrenched since the 1000s years ago, which is agreed by almost all salaf scholars. Differences in madhhab and culture exist and exist in our Islamic world. However, accepting the difference in madhhab does not necessarily mix the teachings of the various madhhabs or so-called talfiq. This is forbidden, but the purpose of understanding and accepting the differences in madzhab and culture that exist in our Islamic world is to cling to a single madzhab that is the ultimate of the four jurisprudhabs , while still respecting other Muslim brothers who do not semadzhab, without blaming the way they take in carrying out sharia if based on strong propositions". --- Obstacles and Challenges to The Implementation of Multicultural Education Values in Kharisma Bangsa High School in South Tangerang City The application or implementation of multicultural education in Kharisma Bangsa High School has been well applied because it is supported by all components of the school, namely principals, teachers, staff and learners in carrying out the values of multicultural education, then the vision, mission and atmosphere of a multicultural school both in terms of race, region, culture and religion, as well as adequate facilities and infrastructure in every multicultural education activities. In the application there will certainly be obstacles and challenges, the following are one of the obstacles or obstacles in the implementation of multicultural education according to the Headmaster of Kharsima Bangsa High School, namely; "..... problems or interactions between them. For example, they don't really agree with the school. Then we'll take it and discuss it. Then the mischief in school is still there. But most importantly in the Kharsima Bangsa school it has a system that will help that. So let's put it this way, we have a policy on bullying cases. If there are students who are proven to be bullying then we can make an excuse to get him out of school. So there are policies that ward off not giving punishment, but warding off the occurrence of such things. And here we also add that working very closely with parents. If there are problems about the student's behavior then the class guardian will talk to the elderly, who later parents will come to school or the homeroom teacher comes to the house, so that it can be solved quickly these problems" Likewise, the same obstacles expressed by the teacher of Islamic Religious Education Ibu Karisma; "The initial obstacle is the habituation of children in order to accept differences. In fact, there are some children who are less able to accept differences, due to previous educational factors that expose children to multiculturalism in all kinds: (race, tribe, culture, madzhab". From some of the above explanations the author concluded that among the obstacles and challenges in the implementation of multicultural education in Kharisma Bangsa High School, namely; Adaptation of New Learners: New learners start from the 10th grade where learners begin to enter a different level from Junior High School to High School . At this time it is not easy to adapt to other people from different regions, who have different characters, languages of different origins and different religions. If previous schools have not been introduced or exposed about accepting differences and multicultural education it will certainly be difficult to adapt. But this can be overcome immediately in one-two months, by providing an introduction and habituation of multicultural values. Multicultural Digital Literacy. Multicultural digital literacy is the ability to analyze cognitively, practically and critically that can be used to filter information received through digital, whether the information contains elements of lies, discrimination and violence on the basis of differences in religion, religious ideology, ethnicity, race, language, economy and others. Or already have multicultural digital literacy . Maintain awareness in building an understanding of multicultural education in teachers, learners and school environments. teachers need to have the ability to critically analyze issues caused by differences in cultural background, religion, ethnic race and others . Then the teacher should also be able to put himself to take a position in favor of the main principles of multicultural education, such as the values of justice, humanity, democracy, anti-discrimination and non-violence . --- CONCLUSION Multicultural education is an education that raises diversity in ethnicity, race, gender, language, religion and culture in society, or a process of providing information, direction, guidance, teaching and understanding about diversity owned by humans in order to be developed to achieve goals and there is no misunderstanding and selfishness in that diversity. Implementation of multicultural education values in Kharisma Bangsa High School through whole school approach and multicultural educational values such as democracy, humanism and tolerance and PAI learning has been implemented. The value of democracy is reflected in student council activities where learners are given freedom in choosing and being applied. Humanist values are implemented through a variety of activities or extracurricular activities that exist, these activities are a place to channel and develop all the potential of learners. Tolerance values are implemented through activities in the classroom and outside the classroom. His activities include commemorations of religious holidays, in which case students are taught to respect each other for different values. The value of tolerance is also taught in islamic education subject matter. Obstacles and challenges Implementation of multicultural education values in Kharisma Bangsa High School are the adaptation of new learners, digital multicultural literacy and awareness of multicultural education understanding.
This research aims to describe and analyze the implementation of multicultural education values at Kharisma Bangsa Global Education High School in South Tangerang City and know the obstacles and challenges of implementing multicultural bathing there. This research uses a qualitative approach with this type of case study research. Data sources are obtained from primary data sources (Principals, PAI Teachers, Academic Staff, and Kharisma Bangsa Learners) and secondary data sources from several books and others that support primary data. Data collection techniques are used through observation, interviews, and documentation. Then from some of the data that has been obtained the author performs data analysis techniques. The results of this study show that 1). The implementation of multicultural education values at Kharisma Bangsa Global Education High School in South Tangerang City is the value of democracy, humanism, and tolerance, and the learning of multicultural Agama Islam (PAI) Education. These values are implemented through a whole school approach, dan 2). Obstacles and challenges in the implementation of multicultural educational values at Kharisma Bangsa High School are the adaptation of early learners into school, digital multicultural literacy, and awareness of understanding of multicultural education.
INTRODUCTION Social Phenomena of Narcotics Circulation, especially Sidenreng Rappang Regency, have not shown maximum results, and even seem to be increasingly rampant to the countryside. The development and mode of operation or forms of crime are formed along with the dynamics of society and technological advancements created by humans. Every opportunity or opportunity is always utilized by organized individuals, groups, and organizations, including countries with methods or various ways with the intention that their goals are achieved. What worries again is that in Indonesia the circulation and use of drugs is no longer at the age of 25 years and above but the age of 25 years and under is increasingly increasing. because drug trafficking is no longer in big city cities but drug trafficking extends to areas including in the sub-district of Panca Rijang Sidrap Regency which is one of the biggest drug trafficking and distribution sites in eastern Indonesia. Therefore to prevent and eradicate drug abuse in sidrap district, an institution that is truly serious and responsive to drug abuse is needed. Thus the existence of the District Narcotics Agency is expected to carry out its duties and functions to the maximum so that drug users and traffickers in Sidrap Regency experience more days of decline but from the results of observations and facts that we see directly with existing conditions precisely with the existence of Narcotics Agency The district level of drug users and circulation is actually increasing every day. BNN data says an average of 50 people die from drugs every day. 50 people every day which means around 18,000 people every year. Ironically, 18,000 human resources that should have been able to provide innovation and energy in order to increase the development of Indonesia in various sectors actually gave up their lives as drug slaves without contributing to the country. In 2015 there were nearly 4 million people from the National Narcotics Agency's estimate of 5.1 million. According to UNODC Office on Drugs and Crime), drug users in Indonesia have reached 5,060,000 people. With the details of users of crystalline methamphetamine 1.2 million people; cannabis 2.8 million people; ecstasy 950 thousand people and heroin 110 thousand people. Of this number, 52.2% are under 30 years old, youth and productive youth groups in Sidenreng Rappang Regency. Based on the results of the research data obtained, in 2015 with the number of cases 82 with suspects 109 people, in 2016 with the number of cases 111 with the number of suspects 149, and in 2017 with the number of cases 140 with the number of suspects 197 people, and 2018 with the number 59 cases suspect 99 . --- Implications for the Medical and Social Rehabilitation Model Knowledge of the role of the social environment in the recovery of addicts or recurrence of using drugs serves as a direction in developing social re-construction measures so that sociologically, drug victims get social support to maintain their better new behavior. The unfavorable social situation then becomes an indirect cause of the ineffectiveness of the rehabilitation program's success, especially when the addict has just undergone a treatment program in an aftercare. Research has proven that generally someone trapped in drug abuse begins with ignorance of this dangerous drug. Its social reality is to avoid the many victims of drug abuse, it requires continuous socialization of basic drug information among the general public. Drug trafficking never stops. The consequences of drug abuse are very complex, as is the case with circulation. Efforts to expand the network of abusers as if they were endless. IDU is the group of abusers who are most at risk of becoming drug dealers, because almost half of IDUs have sold drugs to other people. In Indonesia, there are also forms of organized crime whose characteristics are by forming a network in committing crimes, including business practices in drug crime in Indonesia. One of the business practices of drug crime in Indonesia can be seen in several cases. This shows that Indonesia is a market and a place for actors to do business. Eradicating the drug business is not easy. This is due to the pattern of business activities carried out by the actors implementing a network model. The meaning is that there are connecting points, which are members of the network, who will continue to run the drug business cycle even though one of them has been caught. The existence of these connecting points also indicates that if the leader of the drug business crime organization is caught, it does not mean that the drug business stops completely. Related to the role of the people involved, first, is their presence in a network that is not directly related to the center. Second, is the adaptation of people involved in the network. The important thing about this adaptation is their way of emphasizing understanding of gangguang and strategies in response to the gangs that are about the network. The reason an intermediary can be considered better is, first, the intermediary can control information asymmetrically which can simultaneously control the business in the network. Second, intermediaries provide benefits for a network because it is very suitable to be used as a center for carrying out buying and selling activities because it is more efficient and safe. Third, because an intermediary does not get a stereotype that considers himself a bad person, then this makes it easy to collect and coordinate existing resources. --- Narcotics Nursing Network in Sidenreng Rappang Sidenreng Rappang Regency, South Sulawesi Province, is known as the Lumbung Beras area, recently this positive stigma has shifted that Sidenreng Rappang Regency is now better known as the Narcotics Granary which is one of the drug trafficking centers in South Sulawesi. The social fact is to look at social phenomena in the circulation of narcotics, especially in Sidrap Regency, and have not shown maximum results, and even seem to be increasingly rampant to the villages. Of the several cases that have been revealed are as follows: 1. The National Narcotics Agency has succeeded in uncovering the narcotics distribution syndicate in Sidrap on Thursday . Sabu weighing 5 kg is secured in two locations in Panca Rijang, Sidrap, South Sulawesi Districts. The first location was the disclosure of illicit goods, on Jl AP Pettarani, Lalebata Village, Panca Rijang District, Sidenreng Rappang District at 3:30 a.m. A man suspected of being an narcotics dealer with the initials AN was successfully secured with evidence of sabu weighing 2 kg. After securing AN and the evidence, the joint BNN team carried out the development. 2. Two members of the Sidrap police station allegedly involved in drug trafficking underwent a Propam examination on Monday, August 13, 2018. Both of these individuals had the rank of Bripka with the S in their daily duties in the Sidrap Police Integrated Service Center . And the other is a Brigadier with the initials N from the Sabhara Unit. 3. The Case of the Civil Society perpetrators of drugs who were arrested in Sidenreng Rappang District. Four drug offenders were arrested by the local police. The disclosure of this case began when Sidrap Police Narcotics Satres Team secured the first offender, HBP , who lives on Jalan Andi Haseng, Pangkajene Village, Maritengngae District, Sidenreng Rappang Regency, then on Jalan Pelita, Kelurahan Panreng, Baranti District, Sidenreng Rappang District, three other actors each ABL , HBR and SBM were also successfully arrested. The three were arrested at the house of the perpetrator, ABL on the East Pesantren Street, Benteng Village, Baranti District, Sidrap Regency. --- Cases of unscrupulous Civil Servants . " The civil servant was recorded as a civil servant. He was arrested in front of SMK 2 Sidenreng with two of his colleagues," said the Police Chief of Sidrap, AKBP Anggi Naufal Siregar, at the Sidrap Police Headquarters, Jl Bau Massepe , Maritengngae District, Sidrap. Plus thirteen of the 16 drug offenders have been named as suspects. 5. Cases of unscrupulous members of the Sidrap DPRD, the National Narcotics Agency of South Sulawesi Province, arrested one member of the Regional Representative Council of Sidrap in a cafe in Watang Pulu District, Sidenreng Rappang Regency, Wednesday, July 29, 2015. Based on information, Sidrap legislators arrested was AL, 43 years old, from one of the Political Parties. He is thought to be a dealer and user of shabu-type drugs. The Sidenreng Rappang District legislator was arrested along with six other alleged perpetrators. Among them, two men, namely AW, 39 years and US, 35 EP , and SA . They are self-employed and cafe employees at the arrest location. Nur Syamsi, Head of the Makassar BNN Rehabilitation Center Administration, also mentioned three regions in South Sulawesi, namely Pinrang, Parepare, and Sidrap which were included by the BNN as a red zone. The red zone means that the area is the center of drug trafficking. "The three regions, based on BNN monitoring, are easily accessible to drug dealers, both from the Kalimantan region and from Malaysia. --- METHODOLOGY --- Research Approach The approach used in this study is a qualitative approach, and to answer the phenomenon of the problems faced. Snowball sampling is one method in taking samples from a population. The selection and determination of the type of qualitative research is not merely interpreted as the choice of a method that is focused on the type of data and analyzed that is qualitative, but has a philosophical foundation that underlies the birth of certain paradigms about this method. In connection with the research design used Strauss & Juliet explained several designs including: Phenomenology, Ethnometeorology, Gunded Research, Qualitative Observation and Etiology, among various phenomenological strategies to uncover the meaning behind the facts . Therefore this snowball sampling is a very strategic approach in reviewing the matter of this research, including non-probability sampling techniques . For sampling methods like this specifically used for community data from the respondents / sample subjective, or in other words, the sample sample we want is very rare and is grouped in a set. In other words, the snowball sampling method is sampling by chain. --- CONCLUSION Eradicatingthe drug business is not easy. This is due to the pattern of business activities carried out by the actor applying the network model. This means that connection points are members of the network that will continue to run the drug business even though one of them has been caught. This connection poin also indicates that if the drug business crime organization leader is seen, it does not mean that drug business will stop completely.
Abstracts: , Social Phenomena of Narcotics Circulation, especially Sidenreng Rappang Regency, has not shown maximum results, and even seems to be increasingly rampant to the remote villages. Sidenreng Rappang Regency, South Sulawesi Province, is known as the Lumbung Beras area, recently this positive stigma has shifted that Sidenreng Rappang Regency is now better known as the Narcotics Granary which is one of the drug trafficking centers in South Sulawesi. The results of the study obtained data, in 2015 with the number of 82 cases with 109 suspects, 2016 with 111 cases with 149 suspects, and 2017 with 140 cases with 197 suspects, and 2018 with 59 cases with the number of suspects 99 (Results of direct interviews with Sidrap Police Narcotics Officers and administrative staff, 31 July 2018). 1.Take strict action in accordance with the applicable law towards producers, distributors and users and carry out effective and educative coordination steps with related parties and the community. 2. Strive to increase the budget to rehabilitate victims of narcotics, psychotropic and other addictive substances.
Introduction --- P erceived job insecurity is defined as a workers perception of imminent threat to their employment status. 1 It is a form of workrelated stress that is incorporated into validated and widely used work psychosocial models such as the effort-reward imbalance and job-demand control models. 2,3 Approximately 32% of working adults in the United States report job insecurity, with a prevalence of up to 52% among some occupational sub-populations, and during economic downturns. 4,5 In England, cohorts such as the British Birth Cohort Study 1970, Whitehall II, and the British Household Panel Survey have reported job insecurity prevalence rates between 7% and 40%. 6 Job insecurity experienced by older adults impacts mental health and life satisfaction, is associated with poor health and health behaviors and may influence labor force participation. [6][7][8][9][10][11] Job insecurity can impact decisions and timing of employment transitions and negatively affect worker wellbeing. 8 Job insecurity and the potential peril of unemployment adversely impact older workers approaching retirement, 10,12 due to concerns about reemployability, limited time to recover financially and organizational policies and practices that may discriminate against older workers. 9, 10 One study reported that there were negative and long-term effects on future employment probabilities among older adults who experienced job insecurity. 9 Recent and chronic job insecurity is associated with an inability to meet household expenses during retirement. 13 Research in the fields of economics and public policy indicates that the decision to stop working is substantially focused on financial preparation for retirement, 14,15 and limited resources or financial obligations may prolong the working life. 16 Immediate financial concerns such as 'making ends meet', current economy, mortgage payments, debt or loans, paying for health insurance or medical expenses are factors that influence future retirement decisions. 14 The effects of experiencing job insecurity at one time point may therefore have lingering effects. The decision to retire can also be influenced by personal health. Chronic health conditions are associated with work-related psychosocial stress and poor workability, 17 and may impact transitions out of the workforce. 18 Workers without CHCs are more likely to remain active workforce participants and even work beyond retirement, when compared with those with at least one chronic disease. 19,20 CHCs are also independently associated with job insecurity, which adversely affects psychological well-being and physiological health outcomes. 21 Job insecurity is significantly associated with increased risk of cardiovascular disease and its risk factors, psychological distress, diabetes, and multimorbidity. 6,11 Evidence from the literature implies that job insecurity can impact retirement decisions 14,15,22 ; however, to our knowledge, these associations have not been assessed using longitudinal population data. Furthermore, CHCs are independently associated with both job insecurity and retirement 23,24 ; however, it is unclear how they may impact the association between these two factors. These knowledge gaps are particularly important on an international scale. The UK and U.S. for example, have different organizational culture, labor force participation patterns, national social security schemes and health care systems. [25][26][27] Compared with the US, the UK has greater health and social welfare protections that are not tied to employment, or generating an income. [28][29][30] A lack of similar safety nets in the US may make the consequences of job loss greater for American workers, in particular, if they are in poor health. 31 These macro-level factors are likely to differentially impact job insecurity and its consequences and yield different priorities for retirement in older adults. This warrants country-level research that accounts for differences in work and social factors and potential influences of existing social safety nets. The objective of the current study was therefore to examine the prospective associations between baseline job insecurity and incident retirement. We were further interested in assessing whether CHC trajectories moderated this relationship. Examination of this relationship in the UK and US, which have different health and social welfare programs, will provide an understanding of the potential burden of independent and co-occurring job insecurity and CHCs on retirement, and potentially indicate areas where policy may be useful in aiding transitions to retirement for older workers who are job insecure, have CHCs, or both. We hypothesized that due to the availability of different health and social welfare programs in the UK, job insecurity and CHCs would not significantly influence retirement, while the lack of similar programs in the US would result in significant associations between these factors. --- Methods --- Dataset description We used data from the Health and Retirement Study and the English Longitudinal Study on Aging . Both are longitudinal cohort studies of health and retirement among American and English adults respectively, who are 50 years and older. The population sampling, content and wording of questions in these datasets were coordinated to be similar and allow for cross-national comparisons. Detailed descriptions of sampling procedures and study design for the HRS 32 and ELSA 33 are available elsewhere. Briefly, data for both cohorts are collected biennially, and include health, social, work-related and behavioral factors. HRS and ELSA data from 2006 to 2016 were used for the current analysis. The total sample size in 2006 was 9771 for ELSA and 18469 for HRS. Approximately 50% of the HRS sample was selected for an in-person interview. Baseline waves were selected based on initial availability of work psychosocial factors in either study. The data are de-identified and publicly available; therefore, ethical review and approval were not required by University of Glasgow. --- Inclusion/exclusion criteria Participants were included in the study if they were working for pay at baseline ; did not also indicate that they were retired ; had baseline data for the work psychosocial questionnaire, including a response to the statement 'My job security is poor' ; aged 50-55 years at baseline and had baseline measures plus at least one additional follow-up . The final analytic sample was 1052 ELSA and 570 HRS participants with complete data. --- Variables of interest Self-reported retirement at each study wave was the outcome of interest. Participants were considered to be retired if they indicated that they retired and were not working for pay elsewhere. Job security was our predictor variable of interest and was measured by responses to the statement 'My job security is poor'. Responses were measured on a four-point Likert scale and dichotomized for the purposes of this study. Data for job insecurity in HRS were derived from the mail-in self-administered Psychosocial Leave-Behind Questionnaire provided to participants who were selected for the in-person interview, 34 while in ELSA, it was part of the main questionnaire administered to all participants. An additional predictor variable of interest was CHC trajectories. We constructed the CHC trajectory variable using seven selfreported doctor-diagnosed conditions at each wave, which included diabetes, hypertension, cancer, lung disease, heart disease, stroke and arthritis. These conditions increase with age, are highly prevalent, and are associated with increased risk of subsequent adverse outcomes among older adults. 35 Additional baseline variables of interest controlled for in the analyses included age, gender, race in HRS, partner/marital status, level of education, household income, health insurance coverage in HRS-private insurance in ELSA, current smoking status, moderate physical activity, depressive symptoms, weekly work hours, job tenure, and occupational grouping . Depressive symptoms were measured using the eight-item Center for Epidemiologic Studies Depression Scale . Exercise was defined as engaging in moderate exercise two or more times a week. To minimize missing data, in ELSA 42 participants whose education level was marked as 'missing other' were included as an additional category for education and labeled 'other qualifications'. --- Statistical analysis Baseline sample characteristics were summarized using frequencies and means. Latent class mixture models that estimated the number and size of the trajectories and assigned probability of latent membership were used to construct CHC trajectories . 36 Model selection was determined using Bayesian information criterion, confidence intervals , sample sizes in trajectories and average posterior probabilities above 0.7. 36 For both cohorts, a model with linear functional form that produced three trajectory classes was the best fit for the data. Retirement incidence over the study period is displayed using Kaplan-Meier survival curves for each CHC trajectory class. 'Failure' was defined as first self-report of retirement over the study period. Participants were censored if they were lost to follow-up for any reason before their retirement outcome was ascertained or if they were followed up through the last wave without retiring. The log-rank test was used to test the null hypothesis that there is no difference between job secure and insecure older adults in the probability of retirement incidence at any time point. 37 Cox proportional hazards regression analysis was used to determine whether baseline job insecurity predicted retirement, and the role of CHC trajectories in this association. We estimated three models for each cohort. Model 1 assessed the unadjusted relationship of job insecurity and CHC trajectories, respectively, with retirement. Model 2 assessed the association between job insecurity and retirement while adjusting for CHC trajectories only. Model 3 fully adjusted for all the covariates stated above. Where our predictor variables of interest were both statistically significant in Model 3, we would further include a job insecurity  CHC trajectory interaction term. ELSA had a small sample of non-white individuals . Race was therefore not included in the main models to keep them comparable between the two cohorts. We however ran an additional model for the HRS cohort controlling for race . Additionally, approximately 47% of ELSA participants did not have a measure for job tenure. We therefore did not include this measure in the main models but ran sensitivity analysis for the participants with the measure . All analyses were conducted using STATA version 17.1 . --- Results --- Descriptive results Overall, 18% of HRS and 23.76% of ELSA participants had poor job security. Mean age was 53.2 years in HRS and 52.5 years in ELSA. Total household income was higher among HRS compared with ELSA participants, while job insecure individuals in both cohorts had lower total household income relative to job secure individuals. Mean CESD scores were also higher for job insecure individuals in both cohorts. Among HRS participants with no health insurance, a larger proportion reported being job insecure , and there was a higher proportion of job insecure blue collar and service workers in both cohorts. Three CHC trajectory classes were identified for both cohorts; no CHCs at baseline with few participants developing some conditions by the end of the study period, referred to as 'none-low' hereafter ; low mean CHCs at baseline and increasing over time ; and medium mean CHCs at baseline and increasing over time . In ELSA, the mean CHCs in the none-low trajectory was zero at baseline, increasing to 0.19 by 2016, with a 0-2 range of maximum CHCs. The low-increasing trajectory had a mean of 0.63 at baseline and 1.32 by 2016 . The medium-increasing trajectory had a baseline mean of 1.64 which increased to 2.70 . For HRS, mean number of CHCs in the none-low trajectory at baseline was 0 and 0.57 by 2016 . The low-increasing had a mean of 0.97 at baseline and 1.69 by 2016 . The medium-increasing trajectory had a baseline mean of 2.28 which increased to 3.59 by 2016 . --- English longitudinal study on aging Within the 11-year follow-up period, there were 257 new cases of retirement. The absolute incidence rate of retirement was higher among job secure than job insecure employees . Kaplan-Meier curves indicated that job insecurity was not favorable for retirement and that job secure participants in the medium-increasing trajectory were more likely to retire . Overall, log-rank tests indicated that there were significant differences in retirement survival curves between the job secure and insecure employees in the low-increasing trajectory group only . Table 2 presents the prospective associations between baseline job insecurity and CHC trajectories, and retirement over an 11-year period in ELSA and HRS participants. In Model 1, job insecurity was associated with decreased risk of retirement, and this association persisted after controlling for CHC trajectories . Retirement was also associated with education and occupational category. Relative to college graduates, those with a high school education were less likely to retire during the study period . Blue collar workers were less likely to retire relative to white collar workers . --- Health and retirement study There were 137 new cases of retirement over an 11-year period. The absolute incidence rate of retirement was higher for employees with job security than job insecure employees . Kaplan-Meier curves indicated that job insecurity was not favorable for retirement within each of the three trajectory classes and that job secure participants in the mediumincreasing trajectory were more likely to retire; however, log-rank tests indicated that there were no significant differences in retirement survival curves for job insecure relative to job secure participants . Among US workers, job insecurity was not associated with retirement, while classification in the low-increasing CHC trajectory was associated with a 55% increased likelihood of retirement . After adjusting for CHC trajectories in Model 2, there remained no statistically significant association between job insecurity and retirement. Both the low-increasing and medium-increasing trajectories were however associated with increased likelihood of retirement in Model 2; however, these associations, along with job insecurity, were attenuated in Model 3 after adjustment for all covariates. Baseline age increased likelihood of retirement, while having less than a high school degree or some college reduced the likelihood of retirement . Supplementary table 2 shows the association of the fully adjusted model with race included as a control variable. There were no statistically significant associations between race and retirement. As job insecurity was not statistically significant after adjusting for all covariates in the HRS and ELSA, and CHC trajectories were also attenuated for the HRS, we did not further test for interactions in both cohorts. --- Discussion This study assessed the temporal relationship between baseline job insecurity and retirement over an 11-year follow-up period, while accounting for CHCs in the UK and US workforces. While most studies on retirement do not take into account the impact of job insecurity, 9 we found evidence of reduced likelihood of retirement among job insecure adults in the UK . Adjustment for covariates altered the associations, implying that the social, behavioral, health, and work factors adjusted for may partially explain the association between job insecurity and retirement incidence. Our findings also indicated that older adults with trajectories reflecting higher baseline and increasing number of CHCs over time were more likely to retire, relative to the trajectory reflecting the least number of mean CHCs. This association persisted after adjusting for all covariates in the UK cohort. The greater likelihood of retirement among those in the medium-increasing trajectory in the UK but not the US potentially implies that macro-level factors operating latently uniquely affect the work environment, health, and retirement outcomes in different settings. Kaplan-Meier curves in our study alluded to reduced retirement among older workers who were job insecure at baseline, across all three CHC trajectory classes, while there was evidence of increased retirement among those in the trajectory reflecting greater and increasing number of CHCs over the study period. Previous studies reflect decreased retirement intentions among older workers who experience job insecurity. 13,14 Older workers who involuntarily lose their jobs face challenges in re-employment, 9 which may impact their current and future financial stability. 14,15 The probability of securing re-employment in similar posts for older workers is much less than for younger workers. 38 Among job insecure workers approaching retirement, the lack of security or consistency in employment impedes their ability to adequately plan for their financial future. 14,15 According to the 22nd wave of the Retirement Confidence Survey, approximately a quarter of respondents were not confident they had enough money for a comfortable retirement, and over 40% felt job insecurity was a chief financial concern, with only 28% indicating they had job security. 14 One study reported that job insecure workers expect to either continue working for pay after retirement or to delay retirement, to maintain an income and benefits such as health insurance. 13 Our findings are supported by studies that reported an association between CHCs and retirement 18,20,23 and are consistent with previous evidence of greater likelihood of retirement among participants with CHCs. 18,20,22 A Dutch study reported that employees with CHCs had higher rates of retirement. 23 Kang et al. reported significant associations between diagnosed CHCs and early ill-health retirement in Korean adults with hypertension, diabetes, lung disease, CVD, and cerebrovascular disease. 24 Using data from Europe, another study reported that workers with CVD or diabetes had significantly increased probability of disability benefits and early retirement. 11 Finally, two US studies found that older workers with one or more CHCs were more likely to exit the workforce. 18,20 The complexity of managing multiple CHCs can be overwhelming and lead to anxiety, stress and decreased work ability, consequently resulting in premature exit from the workforce. 20,39 The UK has a greater safety net, and the health and welfare protections available may in part contribute to a healthier national cohort. 29 At baseline, 58% of ELSA participants had no CHCs and only 10.16% had two or more CHCs. In the UK, universal healthcare through the National Health Service allows the population to continuously seek care for their health and wellbeing. In the US, however, variations in access and affordability of healthcare services may result in greater severity of disease, 30 with adverse tertiary outcomes. In addition, over 55% of the US population rely on employer-based insurance, 28 which may inadvertently encourage ill workers to remain in the workforce even as their health deteriorates. Our study has several strengths that lend weight to our conclusions, including the use of rich prospective data from two large national cohorts. The HRS and ELSA are international sister studies, which allows for comparative research on longitudinal aging and work studies. There are, however, several limitations to this study. First, use of baseline only job insecurity did not allow us to establish causality. It is possible that over time, the factors that contribute and the degree to which they contribute to retirement decisions may vary. Second, during the 11-year follow-up, there are other factors that could have impacted the timing of retirement, including the Great Recession of 2008, as well as public, private, and personal incentives and deterrents that may not be fully captured by survey data. The Psychosocial Leave-Behind Questionnaire is administered every other wave, i.e. once every 4 years to alternating HRS subcohorts. We therefore did not have data on job insecurity for 2008 for these HRS participants. Third, we cannot rule out selection bias due to healthy worker survivor effect as workers with poorer health are more likely to exit the workforce earlier, 20,40 and sample selection of the leave-behind questionnaire. Working participants who responded to the HRS mail in questionnaire accounted for only one-third of the mail-in respondents and may not necessarily reflect workers not selected for the in-person interview or those who chose not to complete the self-administered survey. Finally, the data do not provide additional information on whether retirement was voluntary or forced due to factors such as retrenchment. Longitudinal assessments of the relationship between job insecurity, CHCs and retirement in the UK, the USA and beyond are scarce, and our study partially addressed this knowledge gap. Future research needs to consider longitudinal assessments of job insecurity, public and private incentives, and disincentives and how different recessions may impact different industries. An understanding of these associations at different time points in the retirement planning process and in different settings may help inform appropriate policies that are focused on building safety nets for aging workers and developing interventions on disease self-management within the workplace. --- Key points • In this paper, we show that job insecure adults have a reduced likelihood of retirement over an 11-year period. • The association between job insecurity and retirement remains significant but is attenuated with adjustment for CHC trajectories in UK workers. • Trajectories reflecting increasing mean CHCs are associated with increased likelihood of retirement in both cohorts. • This association is attenuated for US workers after adjustment for health and social factors. • The country differences observed may be potentially due to macro-level differences in social and health welfare protections. Perceived job security and chronic health conditions 57 Downloaded from https://academic.oup.com/eurpub/article/32/1/52/6375167 by Hochschule Luzern user on 18 February 2024 --- Supplementary data Supplementary data are available at EURPUB online. Conflicts of interest: None declared.
Background: The relationship between job insecurity, chronic health conditions (CHCs) and retirement among older workers are likely to differ between countries that have different labor markets and health and social safety nets. To date, there are no epidemiological studies that have prospectively assessed the role of job insecurity in retirement incidence, while accounting for CHC trajectories in two countries with different welfare systems. We investigated the strength of the association between baseline job insecurity and retirement incidence over an 11-year period while accounting for CHC trajectories, among workers 50-55 years of age at baseline in the UK and USA. Methods: We performed Cox proportional hazards regression analysis, using 2006-2016 data from the Health and Retirement Study (US cohort, n ¼ 570) and English Longitudinal Study on Aging (UK cohort n ¼ 1052). Results: Job insecurity was associated with retirement after adjusting for CHC trajectories (HR ¼ 0.69, 95% CI ¼ 0.50-0.95) in the UK cohort only. CHC trajectories were associated with retirement in both cohorts; however, this association was attenuated in the US cohort, but remained significant for the medium-increasing trajectory in the UK cohort (HR ¼ 1.41, 95% CI ¼ 1.01-1.97) after adjustment for all covariates. Full adjustment for relevant covariates attenuated the association between job insecurity and retirement indicating that CHCs, social and health factors are contributing mechanistic factors underpinning retirement incidence. Conclusions: The observed differences in the two cohorts may be driven by macro-level factors operating latently, which may affect the work environment, health outcomes and retirement decisions uniquely in different settings.
Introduction With increasingly more international students on university campuses, some applaud global education endeavors for cultivating "global citizenship" and promoting diverse perspectives and greater acceptance of cultural differences . However, many empirical studies have demonstrated instead the lack of interaction between international and local students . International students commonly interact with other international students, but rarely do they interact, develop relationships and engage with the host society . Students may study in a host country for several years, but only form friendships with those from the same country or with the same cultural background , or interact with other international students . Some researchers argue that this lack of cross-group interaction between international students and their host society is caused by cultural differences, perceived discrimination, SPACE AND PERSONAL CONTACTS language barriers and institutional factors . While language and perceived discrimination might explain why some ethnic minority students in Western countries tend to stay within the realms of their conational community, they cannot explain the universal lack of interaction between international and host society students. For example, white British students in North America also self-segregate even though they would not have language barriers or experience discrimination . This segregation is perplexing as many universities provide institutional supports for cross-group interaction. Why then do students still tend to stay in their own groups despite sharing a physical space with many opportunities to meet others from a different social group? The tendency to socialize with others of a similar background-or homophily-has long been studied by sociologists . Homophily rests on different factors, including socioeconomic status. Homophily is not formed solely by psychological preferences but multiple social processes . What, then, are the micro-mechanisms that facilitate the formation of a group defined by student origin rather than other factors, such as study major? To explain this phenomenon, I focus on two groups of undergraduate students in Hong Kong: local Chinese who are raised in Hong Kong and Mainland Chinese who moved there to study. 2 Even after the transfer of Hong Kong back to China in 1997, the city retains independence in many areas, such as law. In official government policies and regulations, Mainland Chinese students are considered the same, or very similar to international students from other countries. Therefore, they are all considered non-local students, pay more tuition, SPACE AND PERSONAL CONTACTS cannot work over 20 hours a week, and fall under different fellowship requirements. 3 Since 1997, Mainland Chinese student enrollments have increased, and the total student population, including undergraduates and postgraduates, is now 11,376 , and increasing. 4 Despite the growing presence of Mainland Chinese students in Hong Kong universities, one widely recognized phenomenon is that mutual interaction between Mainland Chinese and Hong Kong students is rare and superficial, even though they share campus life by attending classes together, living together in university dormitories, and sharing common areas . The universities address this issue by imposing institutional arrangements, such as assigning non-local and local students as dormitory roommates to encourage cross-group interaction; however, self-segregation prevails. Drawing on in-depth interviews and ethnographic observations, I argue that the lack of mutually engaging experiences, i.e., engagement in the same activities with the same group of people over a prolonged period of time, and mutual contact at multiple points in time, leads to the absence of cross-group interaction. Specifically, the lack of daily social/personal contact causes group segregation. There are three contributing factors: fragmented daily living space, defended interpersonal space, and politicized online space. Mainland Chinese students rarely interact with locals because they hardly share any form of space that would allow for mutual engagement. Through a close examination of everyday lived experiences, the empirical cases here will provide a better understanding of the micro-mechanisms of group homophily and the intergroup contact theory. The key to potential development of cross-group friendships lies in 3 Some fellowships are only available to Hong Kong permanent residents, while others are open to both local and non-local students. --- 4 There are three main categories of university students in Hong Kong: local, Mainland Chinese, and international students. The latter two are usually considered "non-local students". This population increased from 1,239 to 14,510 between 1996-1997 and 2013-2014. During that time, the percentage of non-local students also increased from 1% to 15%. According to University Grants Committee statistics, there were a total of 99,257 university students in academic year 2015/16; among them 15,730 were non-local students . Among the non-local students, 11,894 were from Mainland China . SPACE AND PERSONAL CONTACTS organizing daily life routines because they provide opportunities for prolonged and allencompassing contact with others to facilitate emotional engagement. In the following, I first provide a brief review on homophily and the intergroup contact theory. After discussing the data and methods, I outline how recent changes in university life have resulted in the absence of mutually engaging interaction among students, followed by discussing the unique ecology of Hong Kong. I discuss how online space does not provide a channel for student interaction due to the sociopolitical context of the recent conflicts between Mainland China and Hong Kong. I then discuss some occasions in which social boundaries can be crossed and inhibitions eliminated, which result in long-term friendships cultivated with the "others". I conclude with general contributions, policy implications, and limitations of this research. --- Homophily and Intergroup Contact Theory Sociologists have long examined homophily, a social phenomenon better known as "birds of a feather flock together" . Mutual attraction takes place between those who share the same demographics, interests, and attitudes . This similarity-attraction effect is supported by convincing empirical evidence , and "one of the most robust relationships in all of the behavioral sciences" . Homophily is based on factors like socioeconomic status and usually leads to group homogeneity. Wimmer and Lewis analyzed how racial homogeneity of a student group at an elite American university is produced and found that while individual preference for homophily is important, other attributes aside from race, such as physical propinquity , can also be contributors. The implication is SPACE AND PERSONAL CONTACTS that group homogeneity is not purely created by a psychological preference for the same race; rather, it may be generated by the numerous possible processes of individual tie formation. Thus, to better understand "love of the similar", we need to understand micro-level social processes. The local Hong Kong and Mainland Chinese students are not racially different, yet they only have superficial contact. The latter may have physical and social proximities to local students, such as the same classes, but consistently socialize with other Mainland Chinese students both online and offline, who are mostly living elsewhere and studying a different major. In theory, homophily could be built on many social categories, but here, all the other categories become subordinate types of homophily, so that origin comprises the single most important factor for group formation. To explain this, we must unravel the micro-mechanisms of the processes that form homophily in Hong Kong. One such social process is cross-group interaction. The intergroup contact theory explains why contact with outgroup members leads to friendship in some settings, but intensifies conflicts and prejudice elsewhere . Allport stated that prejudice between social groups can be reduced with interpersonal contact under optimal preconditions, such as equal status, without which very little is learned about each other and cross-group friendships never materialize. Numerous empirical research following Allport confirms that the conditions under which contact occurs are vital. Positive contact leads to reduced prejudice and cooperation. Conversely, negative contact results in increased tension and hostility . The factors that reduce prejudice and increase friendships include: status equality , intimate and personal contact, common goals that cannot be achieved independently , support from recognized authorities , and favourable social climates for inter-group SPACE AND PERSONAL CONTACTS contact and harmony . The factors that increase prejudice and intergroup anxiety include unequal status, unpleasant and involuntary contact, group competition , and social norms that promote or encourage racial inequality . The contact hypothesis has been met with mixed empirical evidence, mainly because it is ambiguous whether these factors are necessary or sufficient conditions for positive intergroup contact. For example, physical proximity allows personal contact, but does not necessarily lead to intimacy or promote integration . As empirical evidence recognizes and supports, cooperating to achieve a common subordinate goal facilitates harmonious inter-group relations. Indeed, extracurricular activities provide important opportunities to mix with other students , but on Hong Kong campuses, segregation is also prevalent in extracurricular activities such as student associations. Existing evidence also shows that cross-group friendships can be developed through endorsement from authorities, especially school authorities, which is strong in Hong Kong universities because they all have various policies, regulations and other organizational arrangements to increase the diversity of the student body and facilitate mingling. Yet segregation prevails. Therefore, it is necessary to identify the key features of the processes of intergroup interaction, such as the conditions under which intergroup contact reduces and abates anxiety or uncertainties. --- Personal Contact, Affection and Friendship Building The importance of personal and intimate rather than casual and superficial interactions has long been emphasized by the contact theory . Emotion and affectivity are considered mediating processes by which contact can reduce bias. Indeed, the major factor holding friendship ties together is affectivity . SPACE AND PERSONAL CONTACTS Ultimately, intimate and prolonged contact provides sufficient information about another person, which helps overcome initial group prejudice. This emphasis on personal and intimate contact points to the importance of emotions in intergroup contact . Negative emotions, such as anxiety during initial encounters, can spark negative reactions . However, positive emotions, such as affection, can improve attitudes toward the entire outgroup . The importance of emotion or affection is particularly true given the guanxi culture in Chinese societies . Chinese interpersonal relationships emphasize the establishment of guanxi with others , which is defined by Barbalet as "…a form of asymmetrical exchange of favors between persons on the basis of enduring sentimental ties in which enhancement of public reputation or face is the aspirational outcome". Certainly, building guanxi ties is a volitional and calculative process as they are an investment intended for social exchange, and there are considerations, such as the potential returns . However, because guanxi also means long-term relationships and commitment, it entails emotional attachment and reciprocating obligations . For example, in South Korea, strong particularistic ties are based on kin, educational institution and region because they provide tolerance, mutual understanding and trust . The strongest guanxi are familial ties of sentiment and obligations, kin, regional origin-based, and pseudo-kin university/school ties . Thus, social relations formed in schools are very meaningful to university students in Mainland China. Hong Kong university students realize the necessity of building relationships SPACE AND PERSONAL CONTACTS with fellow students, both ingroup and outgroup, but strong ties can only be built under particular conditions. Since many students merely have superficial contact, we must ask: what are the conditions that facilitate intimate contact? How would positive emotions and feelings about others emerge during the contact processes? --- Data and Methods To answer those questions, I collected data from four public universities in Hong Kong . They were chosen because they have different student bodies and Mainland Chinese student community size. The latter is key because existing research finds that a cohesive and large minority group is more likely to separate from local society, and the members tend to demonstrate reluctance to learn the local language . I interviewed eighty students , who were recruited through a combination of snowball and quota sampling. They were selected through individual networks, public recruitments, and university administrative offices. The non-random sampling was driven by theoretical assumptions. Even though this is exploratory qualitative research, the sampling process includes respondents from diverse backgrounds: students of various academic disciplines with various levels of participation in student associations, and living on or off campus. The interviews aimed for a detailed understanding of whether students interact with outgroup members and why. Daily life and online activity information were solicited, so that the interview questions included those on basic demographics, social network composition, social media activities, daily university life routines and social activities, and attitudes toward other students. I illuminated the patterns of university life, interaction and social SPACE AND PERSONAL CONTACTS media use through the interview data with special attention given to the interaction details. During the interviews, attention was paid to how respondents explain and conceptualize their daily social interaction with others from different categories , and special attention was given to episodes of online and offline encounters with others. These allow for a general analysis of the relationship between their daily life and how and with whom they form friendships. The interviews were semi-structured to ensure consistency, that is, a list of the interview questions were prepared to guide the interviews. However, each interview did not have to follow the same order or structure for smooth and natural conversations. All students were interviewed in their mother tongue with Mainland Chinese students in Mandarin, and local students in Cantonese. The interviews were usually conducted in an office space on campus to ensure privacy and audio recorded with consent. The recordings were then transcribed into Chinese by research assistants. Data analysis was conducted on the Chinese transcripts. I translated the quotes into English. I also interviewed university faculty and staff members. They included the dean of student affairs at all of the universities and 4 residential hall wardens on their observation of student interaction patterns and living situations, and 2 university registry staff for enrollment details, curriculum arrangements, and the number of undergraduates enrolled in exchange or study-abroad programs. I also reviewed existing data from the university registry's offices to achieve an overview of the organization of college life and its transformations over time. Data obtained include basic undergraduate demographic information and curriculum arrangements. Offline observations on how students mutually interacted in public spaces took place on campuses from October 2012 to September 2015. I made multiple visits to the residential halls SPACE AND PERSONAL CONTACTS that lasted from 30 minutes to 4 hours where I asked both sets of students about dorm life and their daily interactions. During the offline observations and visits to student residential halls, I also informally interviewed students and hall wardens. Field notes were written immediately afterwards, including for example, information on when the students wake up or eat their meals. The arguments presented here use a combination of thematic analysis and analytic induction . Thematic analysis allows new patterns and ideas to develop from observations. The findings presented here, such as the importance of "daily routines", emerged from long-term observations and analysis of the interview transcripts. Current theoretical ideas on intergroup contact, such as "personal contact", "support of authority" and "equal status" were used as the tentative analytic frameworks. I verified the research findings against the analytic frameworks and found that surprisingly, even when the students frequently met and contacted outgroup members, they remained within their own social group. However, at times, the boundaries suddenly vanished and cross-group bonding occurred, which facilitated long-term friendships and change in views of the outgroup members in general. Then, through analytic induction, I identified similarities to develop new concepts or ideas , such as the importance of space and daily routines. I "named" these patterns as "fragmented daily living space", "defended interpersonal space" and "politicized online space". The terms were validated against the data and revised to better capture the situation of the students. Next, I discuss some of the alternative explanations for this phenomenon, before presenting my own arguments. --- Language, Discrimination, and Motivations While the four universities differ in many respects, such as ranking and housing options, all demonstrated segregation between the Mainland Chinese and locals. I noted in my SPACE AND PERSONAL CONTACTS observations and field visits that self-segregation prevailed despite imposed institutional arrangements. Like many other contexts , language is an important factor in Hong Kong. However, many of the interviewed Mainland Chinese students did not cite language as the primary factor that segregates them from Hong Kong students . For example, some with inadequate Cantonese skills still engage in-depth with local students by using Mandarin, Cantonese and English simultaneously. However, others from the Canton area who speak Cantonese well still only fraternize with Mainland students. Another important factor is discrimination. While discrimination against the Mainland Chinese in Hong Kong is increasingly prevalent due to the Hong Kong-China conflicts, the local students admitted during the interviews that their Mainland Chinese peers at the same university are different from tourists or new immigrants. In fact, the locals highly regard them as diligent students with high academic aspirations who are also financially well off. Moreover, many other international students also feel segregated from the locals. Ladegaard and Cheng found that non-local international students live completely separate lives on campus and do not work together, let alone socialize, with local Hong Kong students. Another possible explanation is that Mainland Chinese students lack the motivation to interact with local students. However, the vast majority of interviewed Mainland Chinese students indicated that they are strongly motivated to build local guanxi. They understand guanxi with locals is important especially if they pursue employment in Hong Kong after graduation. However, many admitted that they were more interested when they first arrived in Hong Kong than afterwards. Thus, the lack of motivation is an effect, not a causal factor. This SPACE AND PERSONAL CONTACTS echoes Klineberg who found that study abroad substantially contributes to a less favourable opinion of the country of sojourn. One of the most interesting findings of this study is that local students also do not interact with other locals at the same university, especially those who live off-campus or never participate in student associations. This finding will be discussed in a later section. Thus, language barriers, perceived discrimination, or lack of motivation cannot explain why Mainland Chinese and Hong Kong students do not interact. Rather, daily life routine prevents engagements with depth and substance. --- Space Matters The in-depth interviews and ethnographic observations revealed that group segregation is caused by little daily personal contact due to fragmented daily living space, protected interpersonal space, and politicized online space. This lack of shared space in any form hardly allows for mutual engagement. Moreover, the sociopolitical context in Hong Kong, especially the spatial density and the recent Hong Kong-China conflicts, has further led to protection of interpersonal space and politicization of online space. --- Fragmented daily living space Despite sharing a campus and dormitories, daily living space is fragmented because of the current arrangements of university life. The spaces are especially fragmented in a city-state like Hong Kong because locals have easy physical access to other social networks, such as family and high school friends. Of course, the universities try to make remedies that mix the students. A dean of the student affairs office echoed other deans and wardens: SPACE AND PERSONAL CONTACTS Our current policy is to facilitate the communication of students from different groups as much as possible, especially in student dormitories. We make sure that there is one Mainland Chinese, one local, and one international student in each room. For a double room, we assign a local student with a non-local student together . However, the effects of institutional arrangements are very limited, if not negative. In addition, the number of undergraduates in study abroad programs has steadily increased. Since fewer stay on campus for all four years of their study, community ties are weakened. Bonds could be established with roommates or classmates, but many indicated that the exchange programs have disrupted potential close relationships: The first semester when I lived in the hall, my roommate was a year 2 student. But in my second semester, he went on an exchange. My new roommate was an exchange student from a Mainland Chinese university. It was hard for me to adjust to both of them and build close relationships in such a short time. Cross-group friendships are also inhibited because many local students are not interested in socializing on campus, regardless of their housing arrangement. They often continue to prioritize existing social and family ties, instead of developing new relationships. Many also live off-campus and commute. Even if they stay in the dormitories, they return home during the weekends. In fact, many local students admitted that they do not interact with any of the university students because their emotional attachments to their high school friends are prioritized: SPACE AND PERSONAL CONTACTS People say that it's hard to find real friends at university, so I'd rather work alone. I don't even try to work with others in a group or make friends. My friends are my high school friends. As echoed by many local students, friendships are not cultivated on campus because doing so is difficult. Additionally, very few of the respondents have classes with their roommates, or even their own friends. I spent three years at U1, but didn't have much of a relationship with other students. Classes are in a big lecture hall . . . over 100 students. I don't sit with the same people. We have very different schedules, and take different courses, so nobody gets to know each other. Thus, few activities with the same cohorts is the primary reason that close friendships cannot be forged. High school affords prolonged interaction with the same group of students in mutually engaging encounters which form emotional attachments. Since these are lacking at university, many feel lonely and have little sense of belonging. Even when the university deliberately encourages interaction, time and space constraints thwart their efforts. For example, group projects are coordinated online and not in person, as observed by a dean of student affairs: There are many selective courses. Even students in the same major and cohort might have The situation is even more dire between Mainland Chinese and local students because their daily routines are so different. The former tend to eat dinner, sleep, and get up earlier than SPACE AND PERSONAL CONTACTS locals. Different daily life schedules were the most prevalent source of conflict for the hall residents, and many students blamed their different schedules for the lack of cross-group interaction. My roommate in my second year was a local law major, but we had very different schedules. When I woke up, she was still sleeping. When I went back at night, she was still out. I hardly ever saw her in my first month. Consequently, great efforts would be required to socialize with members of other groups. This is also true for hall activities, in which not only different routine schedules, but also non-local status prevent cross-group socializing as Mainland Chinese students lack the built-in family support and social opportunities of locals. The halls have activities like hall cheers, watching football...But the [Mainlanders] think that [locals] spend too much time on those activities . . . which take place late at night. For example, we have midnight snacks, but they're like, "Eating at 3 a.m.? There's a class at 9:30 in the morning". So of course they don't come. Later when I went on an exchange, I had to do a lot of things myself, such as laundry and cleaning. Then I understood why they didn't ever have time. They had to fend for themselves. But we have family and can go home on the weekends. While mingling is considered important for friendship development, and opportunities are usually shaped by organizational features , there is little mingling afforded here as the students in this study occupy the same space but at different times, and engage in different activities on the same campus. This absence of mingling is due to differences in the organization of daily routine activities. Waters and Brooks also found that "local" SPACE AND PERSONAL CONTACTS students in an international diploma program in Paris returned "to their families" in the evenings, thus reducing potential social contact with international students. --- Protected interpersonal space The limited interaction that does take place between the Mainland Chinese and local students is at best restricted and difficult. The former constantly feel defensive because of the anxiety that comes from interacting in a highly dense city like Hong Kong and the current political climate. Living in a highly dense city, Hong Kong people are sensitive to actions that might cause others inconvenience. The Mainland Chinese students then worry about being judged, which negatively affects cross-group interaction. People in Hong Kong have zero tolerance toward behavior that they think goes against the "rules". But sometimes things are not done on purpose. For example, when we talk a In addition, the Mainland Chinese students felt anxious about their language when interacting with locals, a worry that is less about incompetence and more about choice of dialect: SPACE AND PERSONAL CONTACTS I don't know when I should be speaking Mandarin, English, or Cantonese. When I speak in Mandarin, I have to talk slowly. I also avoid saying anything that [the locals] might not understand. Despite varying levels of fluency, many of the local and Mainland Chinese students felt less anxious with international students because English is the common language. Conversely, when Mainland Chinese students are talking to local students or vice versa, they often have to choose among Cantonese, Mandarin , or English . They have to constantly defend their choice of language, and often feel the need to change the language when they can no longer defend their choice; either to others or themselves. Thus identity is a social barrier that separates these students, and the different political standpoints contribute to identity. Indeed, twenty years after the return of Hong Kong to China, tensions continue to mount This apprehension consequently prevents the development of relationships with depth and substance. These issues all contribute to a constant defense mechanism while engaging in cross-group interactions. The lack of open expression and resulting superficial conversations cause difficulties in engaging with others in a way that would reduce intergroup prejudice. --- Politicized online space Since social media is incorporated into daily routine, it could help transcend the physical boundaries of the offline world to foster cross-group interaction. However, the prevalence of political commentaries on social media in recent years, largely due to the changing political climate in Hong Kong, means that online spaces have become highly politicized. Conflicting political views are more visible and accessible than in offline encounters, which further prevent social interaction. Interestingly, none of the students admitted to active political involvement. The sociopolitical context is not at the forefront of daily life. They referred to each other as "quite friendly and nice", and both groups add each other as Facebook friends. However, since many of the anti-Mainland China discussions take place on Facebook , different SPACE AND PERSONAL CONTACTS viewpoints on the Hong Kong-Mainland China conflicts may then subsequently emerge. Thus, the Mainland Chinese students can be exposed to hostile discussions: At first, I checked my Facebook, but now I feel that my Facebook friends are kind of extreme. I was interested in their views at the beginning, but then I stopped reading. Moreover, since technology and the interactional venue uncover or even amplify political differences, they obstruct cross-group interaction both on-and offline before real efforts can even be made. Thus, cross-group interaction is less desirable because of the extra effort: Building relationships is an investment of time, energy and emotion. Even though I would like to make some Mainland friends at university, it requires extra effort. I do interact with them but only for group projects and similar activities . . . practical rather than fun activities. We get together for the task . . . never talk to each[other] again. That's not enough to be friends. SPACE AND PERSONAL CONTACTS The students pointed out that collaborations do not form friendships and contact is superficial because collaborations are instrumental-oriented activities. Extra efforts are thus necessary to overcome the obstacles caused by defended interpersonal space and politicized online space. --- Crossing Social Boundaries Despite the prevalence of group segregation and prejudice, some close, cross-group friendships did form at all of the universities. This development is permitted by mechanisms that facilitate enrollment in multiple courses together, or going abroad or off campus together for programs. Social boundaries are removed when there is the opportunity for mutually engaging encounters for a prolonged period of time. Taking multiple classes together during an academic year is very conducive to the formation of social relationships, especially in programs with more compulsory courses. When students need to enroll in the same courses for an academic year or even two, they meet not only to complete assignments but also to dine together, socialize, or even engage in conversations unrelated to class work. For example, translation major students take many core courses together, and tend to have more sustained and deeper inter-and intragroup encounters: [We] have quite a few compulsory courses [in my major] so we see each other all the time. . . . [We have] "excuses" or opportunities to meet up so we keep in touch. . . . Some of my best friends are locals in my translation classes. While the exchange and internship programs at the Hong Kong universities inhibit crossgroup interaction between students on campus, once students are actually abroad or begin their off campus internship, sustained cross group interaction is facilitated because the new context fosters mutually-engaging experiences. These intensive and prolonged encounters result in a greater likelihood of cross-group interaction. SPACE AND PERSONAL CONTACTS Opportunities for a common social life and contact at multiple points in time seem to be imperative for overriding social boundaries and cultivating cross-group relationships. The students form closer bonds when intergroup contact cannot be avoided, which aligns with existing findings that when participants have no choice but to facilitate intergroup contact, the mean effect size in reducing prejudice is slightly greater than in situations where there are other options . A reason that friendships develop under this condition is that the students learn more about others at the personal level, which reduces stereotyping . Also, more information reduces uncertainty in interactions : I met my best Mainland friend in a program in Guizhou, China. Why did I become friends with her and not the other Mainland students? Lack of contact. At U4, I was a "hi and bye" friend, even with other local students. But in Guizhou, we spent over one month together. Guizhou isn't very developed . . . we faced similar difficulties and had similar complaints. We were together all the time . . . So we found out everything about each other. I found out that Mainland students have some great qualities. They are very generous . . . and forgive small things. In fact, quite a few became boyfriends and girlfriends . . . some are still in the relationship. Interestingly, experiencing common problems, or "suffering together" was also mentioned by at least 8 other students as imperative for establishing cross-group friendships. I still remember the summer program in Africa with a group of students from U1. We all got sick. So we couldn't go anywhere but lie in bed. There was no internet and we had nothing to do but talk . . . we became best friends. SPACE AND PERSONAL CONTACTS Some students expressed that "shared common experiences", especially negative incidents, are conducive to building friendships, but only likely to happen outside of Hong Kong because normal social ties are cut off and there are no shared problems or difficulties in Hong Kong. Common challenges arise when the students are abroad, so they spend much more quality time together with prolonged intimate and all-encompassing interactions which build the foundations of enduring emotional attachments. Moreover, with strong emotional attachments to a member of the other group, the other group is then regarded with more empathy and less prejudice. --- Conclusion and Discussion I have examined the phenomenon of why Mainland Chinese students do not socialize with local Hong Kong students. Group segregation is not intentional, due to lack of motivation, or attributed to homophily preferences that are psychologically innate. As Reay et al. demonstrated, even though there could be desire and efforts to engage in cross-group interaction, contextual factors may prevent success. One factor is the absence of mutually engaging experiences facilitated by current university arrangements and sociopolitical conditions in Hong Kong. The different distribution of activities in terms of space and time mean that members of different social groups cannot engage in personal interaction, or become fully engaged to develop emotional attachments. The current sociopolitical climate also puts students on the defense during cross-group interaction and is further aggravated by social media due to the recent politicization of online space. This study validates the negative factors that limit the ability to carry out interpersonal contact which would reduce intergroup prejudice. If contact does not reduce anxiety or SPACE AND PERSONAL CONTACTS uncertainty, intergroup friendship will still not take place. It is in this manner that the sociopolitical context influences interpersonal interaction because it increases the uncertainties involved in cross-group interaction . On the other hand, the observations in this study suggest that opportunities to overcome anxiety and form bonds are necessary to cross social boundaries. Therefore, space shared in classes does not ease the initial anxieties related to socializing with unfamiliar others, at least not as much as being situated together in a foreign place. Only through prolonged intimate and all-encompassing contact at multiple points in time will inhibitions be reduced, and cross-group relationships cultivated. This study also asserts the importance of shared physical or abstract space during friendship development. Wellman and Wortley argued that the salience of localities in social life have diminished due to the wide use of information and communication technologies. While this argument is valid in that friendship networks are now more geographically dispersed, the findings here imply that a shared space with prolonged intimate and all-encompassing interactions is still most conducive to cross-group interaction, especially among groups that have mutual prejudices, mainly because emotional attachments are more likely to be created. The empirical case here is an atypical case given the unique ecology and social-political context of Hong Kong. However, the findings can provide a better understanding of cross-group interaction in other contexts by foregrounding the importance of space and daily routines. I identify that fragmented daily living space, defended interpersonal space, and politicized online space contribute to the lack of mutual engagements. While defended interpersonal space is unique to Hong Kong, fragmented daily living space also exists elsewhere. While online space has increased in politicization given the recent Hong Kong-China conflicts, exposure to different ideological standpoints is not specific to Hong Kong. Instead, empirical studies show different SPACE AND PERSONAL CONTACTS political views online are very common . Therefore, fragmented daily living space is the key issue here, but can be negotiated with prolonged and personal contact through cohabitation with out-group members and a common schedule of daily activities, thus facilitating mutual engagement. The following recommendations for Hong Kong universities are based on the study findings. First, since prolonged intimate and all-encompassing interactions off-campus are most conducive to facilitating cross-group friendships, these can be encouraged by, for example, assigning students with different backgrounds to the same internship program, and designing programs with site visits that allow congregation for weeks at a time, during which tasks are performed during the day and socializing takes place in the evening. Second, the curriculum structure can allow for enrollment in more courses with the same group of others for a longer period of time . Last but not least, more space and opportunities can be provided on campus for facilitating non-instrumental activities. Thus, inhibitions may be reduced, which allow interactions to take place with ease. The limitations of this study come from the data. The sample is not statistically representative because this is exploratory qualitative research. For example, local students in Hong Kong include non-Chinese individuals. It would be interesting to study the interaction between non-Chinese local students with Mainland Chinese students. Further research can examine if ethnic minority students, such as Mainland students from Hui, Mongolia, or other Chinese minorities experience cross-group interaction with local Hong Kong students differently. There are also Mainland Chinese students who receive their high school education overseas or in international high-schools in Mainland China and then go to Hong Kong for university. Such students thus have richer experiences of interacting with others from --- SPACE AND PERSONAL CONTACTS diverse backgrounds and might react differently in cross-group interaction. Also, the micro-level social processes identified from this research, such as the relationship between participation in off-campus programs and the possibility of enjoying outgroup friendships, can be further testified with quantitative research.
Despite sharing physical space which supports contact with out-group members and institutional arrangements that encourage cross-group interaction, many university students still congregate within their own groups. To explain this phenomenon, this study examines the micro-level social processes that prevent or facilitate intergroup interaction. A qualitative study of Mainland Chinese and local university students in Hong Kong reveals that students lack opportunities for mutually engaging experiences across multiple points in time due to fragmented daily living space, defended interpersonal space, and politicized online space, which contribute to the absence of cross-group interactions. Cross-group friendships depend on external forces to remove inhibitions, which then allow emotional bonding.
2005; Sullivan & Knutson, 2000;Hall-Lande, Hewitt, Mishra, Piescher, & LaLiberte, 2015); however, specific disability status is not often adequately addressed and documented in the research or by child protection systems . Children from different disability categories often vary substantially in their unique neurodevelopmental profiles and support needs . In order to develop systems of care that include maltreatment prevention, response, assessment, and intervention strategies, it is extremely important for states to know the proportion of children who interact with their child protection systems who have specific forms of disabilities . Many have hypothesized that children with Autism Spectrum Disorder may be particularly vulnerable to maltreatment due to factors including the presence of significant challenging behavior and potent and complex cognitive and language impairments among children with ASD, as well as increased caregiver stress, lower levels of family social support, higher rates of caregiver isolation, and higher rates of caregiver dependence . Despite these risk factors, existing attempts to catalogue maltreatment risk for children with ASD to date have suffered from specific ascertainment and other methodological challenges both within the child protection system and in previous research. First, there are few standardized definitions or criteria used by child protection workers across states for assessing or reporting disability status, disability status is often only documented as a dichotomous variable , and child protection workers receive little training in identifying and supporting children with disabilities and their families . Second, previous research has failed to adequately separate ASD from other disability categories; dramatically under-identified individuals with ASD relative to the known prevalence of the disorder; or examined of rates of maltreatment in clinically-referred samples and/or samples of convenience rather than population studies . In the current report, we attempted to overcome previous methodological limitations by linking children with ASD identified through the Autism and Developmental Disability Monitoring network -the specific methodology used by the Centers for Disease Control and Prevention to estimate the prevalence of ASD in the U.S. -to the entire record catalogue of a state-based child protection agency. We specifically examined the following questions within a population level cohort: 1) Are children with ASD in Tennessee more likely than those without ASD in TN to be referred to the TN Child Abuse Hotline? 2) After referral to the TN Child Abuse Hotline, are children with ASD in TN more likely than those without ASD in TN to be screened in for further action? 3) Are children with ASD in TN more likely than those without ASD in TN to have an allegation reported to the TN Child Abuse Hotline be substantiated? and 4) Are there gender or race differences within and between groups of children with substantiated maltreatment? --- Methods After obtaining approval from the Institutional Review Board, a single population-based dataset was created using deterministic linkage of common identifiers that included information from the TN-ADDM network records, TN Department of Health birth vital records, and child protection system records from the TN Department of Children's Services . --- Study Sample The sample consisted of all 24,306 children born in 2006 from the 11-county TN-ADDM surveillance area. For context, the median household income for counties within the TN-ADDM surveillance area was $39,635 -$91,146, with 14.7% of households below the poverty line, and a majority of families with children in the surveillance area were White . Of the 24,306 children born in 2006 from the TN-ADDM surveillance area, 387 children were classified via ADDM methodology as having an ASD and 23,919 were identified as not having an ASD . ASD cases were more likely than control children to be male . The proportion of Caucasian to other races was not significantly different for ASD cases relative to control children . IQ data were available for 71% of the ASD cases , and 39% of these children with ASD had an IQ below 70 . At the time of this data analysis, all children in included in the study were 10 years of age. --- Data Sources As part of the larger ADDM public health surveillance effort, ASD cases were identified from the TN-ADDM data for surveillance year 2014. Control children were all other 2006 births in the TN-ADDM surveillance area identified from TNDH birth vital statistics database. ADDM methods have been extensively described elsewhere . In brief, educational and health records of all children born in 2006 were screened to identify potential ASD cases which were then confirmed as ASD cases by clinical review. Records of all encounters from 2006 to 2016 with TN's child protection system were provided by TNDCS. Tennessee Code 37-1-403 sub-section states "any person who has knowledge of or is called upon to render aid to any child who is suffering from or has sustained any wound, injury, disability, or physical or mental condition shall report such harm immediately if the harm is of such a nature as to reasonably indicate that it has been caused by brutality, abuse or neglect or that, on the basis of available information, reasonably appears to have been caused by brutality, abuse or neglect." The language in the code is intentionally broad, so as to encourage child protection by casting a broad net. Accordingly, we use the general term "child maltreatment" in this paper to refer to all such reports. In TN, all such reports are routed through what is called the TN Child Abuse Hotline, which serves as a single point of referral for all such allegations. Child protection professionals at the TN Child Abuse Hotline use a structured decisionmaking process to determine whether the referral should be screened out or should be screened in for further action. If the referral is screened in for further action, then other child protection professionals begin looking into the details of the allegation included in the referral and working with the family. This includes conducting interviews with the child, parent or caregiver, referent, and collateral contacts, observation of the child and home , and completion of all appropriate documentation including standardized screening tools . After all interviews and other evidence is collected, the child protection worker uses the information to determine whether there is enough evidence to say the child was abused or neglected or there was not enough evidence to say that the child was abused or neglected . Child protection system records were used to examine: all referrals to the child abuse hotline ; screening for further action by the child abuse hotline ; and substantiation of maltreatment . Because many children could be referred to the hotline multiple times or by multiple individuals for the same incident, we evaluated only initial TNDCS encounters. --- Statistical Analysis Group differences were tested with independent group proportion tests. The Benjamin and Yekutieli method was used to control the study-wide false discovery rates. R version 3.4.1 was used for all data management and statistical analysis procedures. --- Results Results are shown in Table 1. Relative to the entire ASD and control populations, significantly more children with ASD than control children were referred to the TN Child Abuse Hotline . Relative to the total number of referrals to the TN Child Abuse Hotline, children with ASD were more likely than control children to be screened out rather than screened in for further action . Specifically, 62.7% of ASD referrals were screened in for further action; whereas, 91.6% of referrals for control children were screened in for further action. However, relative to the entire ASD and control populations, ASD referrals were more likely than control children to be screened in for further action . Finally, relative to the number of referrals screened in for further action, children with ASD were less likely than control children to have substantiated maltreatment . However, relative to the entire ASD and control populations, children with ASD and control children were equally likely to have substantiated maltreatment . Examining demographic differences for children with ASD, while the proportion of males with ASD is significantly larger than the proportion of females with ASD overall, the proportion of females with ASD with substantiated maltreatment was significantly larger than the proportion of males with ASD with substantiated maltreatment . There were no significant race/ethnicity differences for children with ASD with substantiated maltreatment . Finally, there were no differences in substantiated maltreatment for children with ASD with IQ above versus IQ below 70 . For control children, there were no gender or race differences for substantiated maltreatment. --- Discussion The current study addresses the methodological limitations of the existing literature by using a well-established methodology for identifying children with ASD and linking those records to referrals to TNDCS. The finding that children with ASD in the TN-ADDM surveillance area are more than two and one-half times more likely than control children to be referred to TNDCS is generally consistent with previous reports of high rates of child protection encounters for children with disabilities, including ASD . Extending previous research, the current study provides a nuanced examination of the stages of encounters children have with the child protection system. While results of this linkage suggest overrepresentation of children with ASD in referrals to TNDCS-almost 1 in 5 children with ASD were referred to the TN Child Abuse Hotline-ultimate movement toward further action was different for children with ASD compared to control children. Far fewer referrals of children with ASD were screened in for further action, raising the question of whether children with ASD are over-referred to the TN Child Abuse Hotline or whether they are differentially screened out for further action. There are several potential interpretations of this difference. First, it may be that children with ASD, by virtue of their multi-system involvement and involvement with professionals familiar with mandated reporting, have more opportunities for maltreatment to be noticed and/or suspected than do control children and are therefore more likely to be referred. Second, the increased number of referrals for children with ASD may be linked to the complex child and family factors co-occurring with ASD presentations. For example, behavioral challenges or self-injurious behaviors may appear as symptoms of abuse to those not familiar with ASD, thus leading to increased referrals for children with ASD that are ultimately screened out for further action . Finally, it is also possible that those charged with triage and decision making from the TN Child Abuse Hotline make attributions about allegations or resource referrals differentially for children with ASD. Given existing research suggesting that child protection workers generally receive little training on recognizing and supporting children with disabilities , it may be that child protection workers could benefit from more specialized training in autism and other developmental disabilities. For example, the TNDCS staff in-service course catalog includes a one-hour, online course entitled "Autism Awareness," that appears to be one of over 100 elective in-service options Given that recommendations for further action were substantially lower for children with ASD, it is challenging to ultimately interpret the fairly comparable percentages of substantiated cases of maltreatment for those children with and without ASD. If there was a differential response to referrals, it may be that this difference represents a possible minimum or lower bound of maltreatment concerns within this population. Ultimately, it is vitally important for states to know the proportion of children within their child protection systems who have ASD in order to develop systems of care inclusive of effective maltreatment prevention, response, assessment, and intervention strategies . An unexpected finding was that females with ASD were significantly more likely to have substantiated maltreatment compared to males with ASD. Not only does this disparity not reflect gender differences in our control population, but it also does not reflect gender differences reported in national maltreatment studies of children without disabilities nor in other population studies of individuals with other disabilities . In their sample of individuals with ASD served in comprehensive community-based mental health settings, Mandell and colleagues found that compared to males with ASD females with ASD were more likely to experience sexual abuse but no gender differences were reported for physical abuse. It is possible that a similar pattern is evident in the current data; unfortunately, the dataset does not allow for an examination of the specific forms of substantiated maltreatment experienced by each child. Still, this finding highlights that females with ASD might be an extremely vulnerable population and future research should be conducted to better explain this finding. Limitations of the current study must be addressed. First, the cohort was 10 year old at the time of identification and although all initial referrals up to this age were examined, this still only represents a portion of what a child's experience with maltreatment and the child protection system may be . Second, while ASD was identified through a well-established methodology , other child characteristics were not well defined. Specifically, in addition to children without disabilities, the control group likely contains children with other disabilities who are at heightened risk of maltreatment . Similarly, given the heterogeneity of ASD, it is likely an oversimplification to discuss ASD diagnosis as a risk status in and of itself. There are likely complex specific child, family, and social factors overlaid with associated ASD characteristics that ultimately may drive risk for maltreatment. Third, the current dataset contained limited information, not allowing for the examination of who reported the abuse, the type of abuse reported, and the alleged/substantiated perpetrator. Despite these limitations, the current linkage powerfully supports the need to examine and disentangle these additional factors for children with ASD. --- Conclusion Children with disabilities are often overrepresented within child protection systems, but population studies of the experiences of children with ASD have been limited. The current work examined referrals to the TN Child Abuse Hotline, screens for further action within the child protection system, and substantiation of maltreatment for a cohort of children rigorously reviewed for ASD. Results suggest high rates of both referrals and substantiated maltreatment for children with ASD. Further examination of the factors contributing to higher risk of maltreatment referrals and potentially to the experience of maltreatment is clearly warranted to disentangle the complex challenges facing this vulnerable population of children. ---
Children with disabilities experience elevated rates of maltreatment but little is known about the interaction of children with autism spectrum disorder (ASD) with child protection systems. A population-based dataset of 24,306 children born in 2008 in Tennessee, which included 387 children with ASD identified through the Autism and Developmental Disabilities Monitoring network, was linked with state child protection records. Rates of maltreatment referrals, screening for further action, and substantiated maltreatment were examined for children with versus without ASD. Significantly more children with ASD (17.3%) than without (7.4%) were referred to the Child Abuse Hotline. Children with ASD were less likely than children without ASD to have referrals screened in for further action (62% vs. 91.6%, respectively), but substantiated maltreatment rates were similar across groups (3.9% vs. 3.4%, respectively). Girls versus boys with ASD were more likely to have substantiated maltreatment (13.6% vs. 1.9%, respectively). The high percentage of children with ASD referred for allegations of maltreatment, the differential pattern of screening referrals in for further action, and the high levels of substantiated maltreatment of girls with ASD highlights the need for enhanced training and knowledge of the complex issues faced by children with ASD, their families, and state welfare agencies.autism spectrum disorder; maltreatment; child protective services; child abuse Population-based studies and national data reporting entities clearly indicate that children with disabilities experience elevated rates of maltreatment and encounters with child protection systems (Horner-Johnson & Drum, 2006;Maclean et al., 2017;Spencer et al.,
Introduction Throughout the course of the last twenty years, the United Kingdom has undergone extraordinary constitutional change. In 1998, the UK Parliament passed three devolution Acts. The Scotland Act, The Government of Wales Act and the Northern Ireland Act established new political institutions and oversaw the transfer of some powers and functions previously held by the UK Government in Westminster. In the time that has elapsed, the devolution settlements of each constituent part of the UK have undergone yet further transformation. This includes, inter alia, a referendum on primary law making powers in Wales, the introduction of a new devolution dispensation in Scotland 1 , as well as the transfer of policing and justice powers to the Northern Ireland Assembly. These developments have further contributed to the emergence of an 'asymmetric' set of governance relations whereby devolved polities now have varying powers to craft legislation and policy across, as well as within, different fields. The changes that have been catalysed by devolution have been reflected within the research agendas of criminologists across parts of the UK, including Scotland and Northern Ireland . In Wales, however, with a few notable exceptions , criminologists have provided very little coverage of the impact made by Welsh devolution to its role within the England & Wales system. Consequently, debates on criminal justice in Wales continue to be characterised by a presumed policy linearity with Westminster. This discourse is one that consistently fails to comprehend the vastly more complex and interweaving negotiations of power and agenda setting that now occur within the governable space of Wales. As Stenson and Edwards pertinently argued over a decade ago, there is a need for criminologists to consider "the uneven ways in which political rationalities and governmental technologies are configured in different localities by competing coalitions of actors". This article explores the 'uneven ways' in which drug policy is configured within post-devolution Wales. The first section of the paper explains how the combined processes of Welsh devolution and changes to UKG criminal justice policy are responsible for delivering major changes to Wales' position within the supposed 'unitary' England & Wales system. From here, through drawing upon empirical research into drug policy in Wales, the article presents a much-needed analysis of the ways in which this Welsh policy space is being used. This includes a discussion of the extent to which Welsh drug policy is divergent from that of England, as well as offering an original analysis of some of the limitations to Welsh policy divergence. By framing the emergence of a distinctive Welsh criminological policy space, and exploring some of the important issues within it, this article illustrates the need for criminologists to think beyond 'England & Wales' as a unit of analysis despite the continuing formal existence of the unitary jurisdiction. --- The Emergence of Wales The England & Wales system was created during the sixteenth century with one central aim: to legally incorporate Wales into England. While sweeping away many of the "customs and usages" that had once included Wales' very own penal code , the formation of the single jurisdiction was responsible for producing dominant ways of talking about criminal justice policy. The absorption of Wales ensured that it was to be rendered invisible from debates on crime control and criminal justice . As such, Wales was -and indeed has been ever since -simply spoken of through the dominant position assumed by England. This has been reflected within a range of different studies on criminal justice that, by speaking solely about England on the behalf of both England and Wales, have helped to conjure up 'common sense' characterisations of "English criminal justice" as well as an active "English criminological tradition" that has helped to shape criminal justice policy in England and Wales from the nineteenth century onwards . The legacy of this anglocentric narrative is that, so long as the England & Wales system remains intact, it is deemed perfectly acceptable to speak on the behalf of Wales through the dominant position of England. However, while the England & Wales system remains formally in place to this day, at least in name, the combined effect of changes to criminal justice policy and the start of executive devolution to Wales has been responsible for a radical, yet rather inconspicuous, transformation to Wales's role within a jurisdiction supposedly characterized by the abolition of difference. --- Welsh Devolution The short history of Welsh devolution is marked by continuous iteration, development and By the middle of the millennium's first decade, having taken on a number of different faces during its early formative years , the Welsh Assembly was well on its way to becoming a more orthodox parliamentary structure. The Government of Wales Act 2006 conferred some legislative powers to the National Assembly, however, it was not until 2011, following a successful 'Yes' vote in the referendum , that full primary law making powers were given to the National Assembly. This outcome led to yet another inquiry into the future of Welsh devolution, also referred to as the Silk Commission, which has helped to shape some of the most recent constitutional developments. When its findings were published in 2013 and 2014, the Silk Commission recommended a number of modifications, including the transfer of some tax raising powers to Wales, as well as calling for a move towards a "superior" reserved powers model . The UK Government, although largely rejecting many of the Commission's recommendations 2 , legislated to provide Welsh Ministers with tax raising powers as well as introduce a reserved powers model . In January 2017, the Wales Act 2017 became Wales' third devolution dispensation in less than a twenty-year period. The rather condensed tale of Welsh constitutional development that has been told here illustrates the many 'gear changes' that Welsh devolution has gone through since its early beginnings . Importantly, however, what remains clear is that since becoming formally empowered in April 1999, the newly formed democratic institutions in Wales have been formally responsible for twenty separate areas of government. Although this still does not extend to criminal justice powers in Wales, the Welsh Government's 3 control over many social policy functions was key -and indeed still is -to shaping the identity of Welsh devolution. As argued by Chaney and Drakeford , the "essence" of early Welsh devolution had been to create a "social policy Assembly for Wales", with a significant amount of the WG's entire budget spent on areas such as health 4 , education, housing and social services. Crucially, it is the WG's control over these areas that is key to understanding Wales' changing role within the England & Wales system. In particular, as the process of Welsh executive devolution began, the social policy responsibilities being handed over to Welsh Ministers in Cardiff were about to assume a central role in the UKG's 'modernised' approach to tackling crime and offending. --- 'A Social Policy Assembly' In 1997, at the same time that plans for Welsh devolution were being unveiled by the Welsh Office , the newly elected New Labour Government outlined its commitment to a different approach to tackling crime across England & Wales. Elected at a time when Western states were beginning to reconfigure their approaches to tackling crime , the New Labour Government embarked itself on a "relentless quest" to "modernize" state institutions . At the heart of its policy was a commitment to delivering 'joinedup' approaches and the need for integrated working between state, local and community agencies. This strategy was most clearly evidenced during New Labour's early years in its approach to youth justice , as well as the introduction of the Crime and Disorder Act 1998 . A central pillar within New Labour's policy was a commitment to new forms of governance. Its plans included reforms at the level of the state itself with an emphasis upon the development of "horizontal" coordination and collaboration between state departments and public sector organisations . Rather than simply responsibilising individuals and groups beyond the central government, New Labour's commitment to joint working meant that noncriminal justice government departments, including those responsible for tackling drug and alcohol misuse, were also drawn in as part of its collaborative efforts to create an "enhanced network" of agencies actively involved in supporting criminal justice institutions to reduce crime . From 1999 onwards, this "criminalization of social policy" was being reflected in the ways in which social policies were being used by "devolved authorities" to tackle crime and offending, including the newly created WG . In Wales, despite being handed no formal responsibilities over the criminal justice system, the WG set about using its own social policy functions to help tackle crime and lower offending in Wales. From 1999 onwards, for example, the WG has introduced provisions to improve offender health , education , substance misuse , and housing services , measures to tackle domestic violence , as well as steps to improve community safety across Wales . --- 'Different Welsh Perspective' The significant changes made by devolution forced the UKG to recognise the existence of a distinct set of arrangements in Wales . No longer able to be spoken of through the dominant position of England, a 2006 joint report by National Offender Management Service Cymru and the WG vowed to take full account of "the different Welsh perspective" that had been brought about by devolution. Significantly, this included an acknowledgement that the WG now enjoyed "considerable autonomy" over policy development within pathway areas that were absolutely central to the UKG's 'joined-up' approach . Far from being part of any named, deliberate or formal strategy to provide the WG with any kind of official responsibility for criminal justice in Wales, the forging of closer ties between social policy and criminal justice have simply meant that responsibilities over crime and tackling offending have been picked up as part of the WG's existing strategic programme of government. Despite the magnitude of these changes, however, academics continue to disregard the distinct policy context that exists in Wales . As a response to this continuing failure, this paper will showcase the importance of taking Wales seriously by offering a critical analysis of the WG's approach to drug policy. --- The Study: Drug Policy and Devolution in Wales For almost 100 years, commentators have characterised "British" drug policy by its straddling of several policy spheres, and most notably that of health and criminal justice . With powers over the misuse of drugs or psychoactive substances reserved to the UKG 5 , analyses of drug policy in Wales have largely been absent or otherwise framed as a silent, and emulative, player in discussions of "Britain", "UK", or "England & Wales" 6 . However, the enduring feature of "health" and other related social policy spheres has ensured that Wales, in the post-devolution era, has become more actively involved in the crafting of policy decisions and legislation on areas that directly pertain to drug policy. This has opened up the possibility of a distinctive and divergent approach to that of England and/or the UKG. Considering its supposed social democratic and welfarist principles , it could be expected that Wales has the ability to generate strategies and approaches which are more 'adaptive' in nature , and which are more resistant to overly punitive measures than that found in England. Despite the emergence of a Welsh criminal justice policy space, the trend of neglecting drug policy in Wales in favour of reinforcing the hegemony of a "UK" approach remains dominant. As illustrated within a recent journal article by Duke et al., , who, in a footnote, state that devolved strategies are merely '…coordinated within the overall UK strategy'. It is problematic, if not concerning, just how little academic attention, with the exception of some notable evaluative studies , has been directed towards this policy sphere. By taking Wales as the central unit of analysis, the remainder of this paper will empirically examine how this Welsh space has diverged from the broader UK approach to drug policy, as well as exploring the extent to which that a distinct Welsh approach to drug policy may in fact be limited. The data used in this paper is drawn from a broader project that examined the policy-making processes relating to cannabis in England & Wales and the Netherlands . More specifically, it compared the 2009 reclassification of cannabis from Class C to Class B to the 2012/13 changes to the 'coffeeshop' tolerance policy . The research design was a multiple-embedded case study and compared two 'national' cases and two 'subnational' cases in order to decipher the nature and extent of convergence and divergence in policy-making processes, and what this signified in terms of contemporary cultures of control . For the purposes of this paper, this provided a useful and interesting way in which to explore the development and projection of drug policy in Wales and how it navigated a legislative change which was beyond the power of the WG. The paper draws upon a reading of official Welsh drug strategy policy documents as well as qualitative data from a series of interviews with policy stakeholders in Wales , which included senior political figures , senior civil servants from WG , and senior practitioners working in health and police services . Participants were recruited through purposive and reputational sampling. Documents and organisations were identified from a review of the literature as being relevant and involved in drug policy, and identified contacts were sent formal emails or letters explaining the research and inviting their participation in the study. Data collection occurred between 2011-2013. Interviews were conducted face-to-face and lasted on average 40 minutes and were recorded and transcribed. Kingdon's Multiple Streams model of policy-making was used as a 'middle-range' analytical framework to thematically code and sort both the interview and documentary data into different policy 'streams', as well as allowing for in-vivo codes to emerge from the data itself. Together this enabled the study to critically compare processes of policy change across the different cases in terms of convergence and divergence 7 . For this paper, the analysis presented takes a less rigid form than that of the Multiple Streams model, in order to explore the development of drug policy in Wales as a whole, whilst still drawing upon prominent themes that emerged in relation to the cannabis reclassification in 2009. Next, through intertwining findings from both the interviews and drug strategies, the substantive empirical analysis discusses the extent of divergence in drug policy in Wales. First, the claims for a distinctive approach are considered, before turning to critically examine the limitations of divergence. --- A Distinct Welsh Drug Policy In support of a distinct Welsh drug policy, this section will first explore various manifestations of divergence that can be detected in policy 'talk ' and 'action' in Wales . Then, it will seek to contextualise and explain this through charting the growth of the 'substance misuse' policy machinery and illuminating components of Welsh political culture which have facilitated these developments. In several important ways, contemporary drug policy in Wales demonstrates a more rational, inclusive and innovative approach than can be found in England. While it may well be possible to point towards the beginnings of a unique Welsh approach via the Welsh Office 8 , executive devolution to Wales in 1999 was the major catalyst for policy divergence as it enabled actors, agencies and institutions in Wales to gain more influence and power in the crafting and administering of drug policy. Whilst continuing to straddle criminal justice , the dominant approach taken in Wales is that of health and particularly harm reduction. The claim to a distinctive approach can be clearly identified through both official rhetoric and the introduction and support of policy initiatives by the WG. First and foremost, nowhere is this approach more clearly on show than in the language of 'substance misuse'. This lies in stark contrast to the separate strategies towards alcohol and illicit drugs in England, as well as the shift towards an abstinence-based 'recovery' approach at the UK level . The central positioning of 'substance misuse' and 'harm reduction' rhetoric in Wales is not just political posturing, but it has major consequences for how problems are recognised, responses organised, and resources allocated at a central level of decision making. In terms of Welsh-specific policies, there are several examples that demonstrate distinctiveness. In 2004, for example, the WG's introduction of a Transitional Support Service marked its major commitment to tackling substance misuse amongst Welsh prison leavers. Introduced to help address the shortfall in support for prisoners only serving short-term sentences , TSS quickly developed a reputation as a "very effective practice model" -and one that clearly diverged from England -for delivering 'through the gate' support aimed specifically at short-term prisoners from Wales suffering from substance misuse . In a further example, the use of Naloxone in Wales has gained significant attention in policy circles for its use in preventing opiate overdoses. Whilst this is available in England, it does not receive central UKG funding which makes provision more sporadic and based upon local commissioning decisions. In Wales, however, since 2011 it has been centrally managed and funded and has been rolled out nationally. Finally, in 2013 the WG formally supported the 'Welsh Emerging Drugs and Identification of Novel Substances' to provide a mechanism to allow the public to test unknown or unidentified substances, whilst offering better public information about potentially dangerous or contaminated substances on the market. Although there are also pill and powder testing services in England, which have recently gained some traction 9 , these are not yet endorsed by the UKG and appear to lie in tension with the direction towards an abstinence-based approach. Importantly, the examples highlighted here demonstrate some pertinent differences from UKG drug policy, both in terms of policy 'talk' as well as 'action' . As will be further explained below, these manifestations of difference are connected to the increased policy machinery that has developed around drug policy in Wales as well as the political culture that has come to govern the way in which drug policies in Wales are created. --- 'Brand Wales' -Policy Machinery and Political Culture The early years of post-devolution drug policy in Wales provided little by way of genuine policy distinctiveness. The WG's first drug strategy, Tackling Substance Misuse in Wales, included some subtle additions to the UKG's own Tackling Drugs to Build a Better Britain strategy , but the differences appeared to be minor beyond a continuation of the rhetorical commitment to a health-based harm reduction approach that had developed during the Welsh Office years. As executive devolution developed during its early formative years , however, drug policy in Wales began to take on a more divergent and autonomous character. The period that separates the publication of the WG's first substance misuse strategy in 2000 and its second, and current strategy, Working Together to Reduce Harm in 2008, is key to understanding the development of a distinct Welsh drug policy. First, as confidence in the maturity and resilience of Welsh devolution grew, this came to be reflected in an expanded policy machinery surrounding substance misuse in Wales. Supported by increased levels of central funding 10 , this expanded machinery has been complimented by improvements in recording, monitoring and analysing Welsh-specific substance misuse data. This process formally began in 2006 with the decision to introduce the Welsh National Database for Substance Misuse. According to one SCS who was involved in its creation, prior to this '…there was no information, no data' which limited the WG's ability to respond to, and manage, the drug problem in Wales. In constructing representations of substance misuse problems specific to a Welsh-defined context, the expanded Welsh drug policy machinery has been able to claim greater ownership over issues and provided the rationale and legitimacy to craft responses tailored to those specific problems. For example, the overt recognition that 'the harmful use of alcohol in Wales is far more widespread than that of illegal drugs and other substances' lends credibility to a joint approach to substance misuse as a whole, partly because it '…enables local commissioners to target resources in proportion to the relative harms of drug misuse and alcohol misuse in their area' . The bureaucratisation of substance misuse, and of '…wanting to embed a culture of evidencebased practice' , is not a development specific to Wales given the 'modernising agenda' that New Labour had embarked upon at the same time . However, whilst authors have often articulated the more punitive criminal justice-based manifestations of managerialist influences in England at that time , in Wales, an expanded policy machinery has helped to propel a more dominant healthbased approach which has solidified an identity, or 'brand', around harm reduction. Thus, a set of frameworks have been created which project Wales as commanding a distinct entity and position on the issue of substance misuse. This is evidenced, for example, in the Framework for Community Safety Partnerships to Commission Substance Misuse Services , the Comprehensive Performance Management Framework , and the Substance Misuse Treatment Framework . The second driver behind a distinct Welsh drug policy is the political culture operating within the expanded policy machinery. A reading of the 2008-2018 strategy indicates a more definitive shift in the rhetoric towards an autonomous approach than in previous strategies. For example, this marks a transformation in terms of the relationship with the UKG, with the current strategy projecting one of equal partnership rather than the asymmetrical dependency which characterised previous strategies: '…it requires the WG and UKG to work together on issues which cross the boundary of devolved and non-devolved areas of responsibility', creating 'links with UKG strategies' . The shift in rhetoric was driven forward at a time when other organisations, including NOMS, were forced to acknowledge the extent of the WG's involvement in shaping and implementing criminal justice policy in Wales . For those operating within the policy machinery in Wales, the emergence of a distinct culture amongst policy insiders reflects the growing strength, maturity and confidence of political institutions in Wales. In relation to the area of substance misuse, policy insiders confidently claim that a distinct political identity enables them to produce Welsh-specific policy responses. As one policy stakeholder suggested: 'It's no longer about us just hanging on English coat-tails and taking an English policy and dragonising it. We don't do that but we used to do that 20 years ago. But we don't… we develop policies which meet the needs of the Welsh population.' A strong theme, which contributes towards this sense of policy autonomy, is the projection of Welsh unity through shared common values and goals. In the accounts of policy insiders are refrains to notions of a close-knit community of policy-makers and practitioners . In part, this is adjudged to be a result of a set of geographical, cultural and historical factors which have served to forge a clear Welsh identity and divergence from England: 'We've got common things that we do together, so we are held together by the language and that makes, I suppose, a desire with everyone I ever bump into to work together. We want to be integrated, we want to have a brand Wales, we want to be together.' 'I think we are fortunate that we are quite a small nation. The number of partners that we have… because we have less regions it is easier for us to work very closely with our partners and I think you will probably find that the relationships that we have with our partners are probably better and closer than they are in England.' '…it is a document [substance misuse strategy] that is not a WG document, it's owned by everyone in Wales and you will find if you talk to partners that they will say that.' What remains central to our understanding of a distinct Welsh drug policy, however, is that the shared values underpinning political culture in Wales translate themselves into shaping the way in which Welsh policy insiders view, construct and respond to 'the problem' of substance misuse. According to one SPF, responses in Wales are framed as being more 'sympathetic' towards the individual substance user than in England. This sentiment is also clearly outlined within the foreword to the 2008 strategy, which states that '…the needs of the substance misuser, their families and the wider community must be at the heart of everything we do' . Crucially, while dominant discourses in Wales centre on the construction of the substance user as victim, who should be offered help rather than creating a divide between 'us' respectable citizens, this approach appears markedly different to the perceived strategy in England: 'I think the tone at the UK level is still very much a criminal justice driven approach with a pretty moral distancing… We are more likely to use the softer language of, these could be people you know, these could be people like you, and if they fall into difficulty we ought to be able to help them because you might be in difficulty one day.' The rhetorical difference between the inclusive 'Working Together' and exclusive 'Protecting Families and Communities' appears to corroborate the above account. The ordering of the 'action areas' is not inconsequential either, with the UK strategies' first listed priority that primarily concerning criminal justice . In the Welsh strategy, this corresponding action area is the last discussed whilst 'preventing harm' comes first. Even according to the perspectives of those working within criminal justice in Wales, the influence of health is seen as the dominant voice shaping contemporary Welsh drug policy: '…we like to think we are independently minded, and we have got health devolved so I think the emphasis on treatment and prevention is certainly stronger than enforcement because the policing isn't devolved and neither is the law…' The ability to move away from UKG policy has only been made possible following the emergence of a distinct Welsh policy space. Within this space, however, a broadened policy machinery and strong political culture have helped to influence and shape the formation of a distinct Welsh drug policy. While responsibilities over criminal justice remain outside of its competencies, this has arguably led to a sharpening of those areas in which policy movement is possible. The direction of which would appear to be attuned to a political culture which, supposedly, favours social welfarist principles . --- The Limits of Divergence -Hanging onto English Coat-Tails? Despite the emergence and claim of a 'Welsh approach' to drugs, this section will consider three central issues which have constrained divergence in Wales, namely: insufficient powers; a reluctance to campaign for genuine change; and a lack of critical debate around drug policy in Wales. While what limited research there is on justice in Wales has tended to focus upon the distinct or even progressive elements of Welsh policy , the arguments presented here offer a more critical examination of the Welsh criminal justice policy space. Firstly, a distinct Welsh drug policy is restricted by Wales' devolution dispensation. While Welsh ministers and policy makers may be responsible for the policy drivers and controls over health, primary-law making powers concerning the control and classification of illicit substances in Wales are currently reserved to the UKG 11 . These controls are principally covered by the Misuse of Drugs Act 1971 12 , which, inter alia, prohibits the possession, sale, supply and production of substances covered under its remit. Other pieces of legislation covering licit substances in Wales, such as the Medicines Act 1968, Customs and Excise Management Act 1979, and the Licensing Act 2003, which predominantly concerns the regulation of how substances can be manufactured, distributed and sold, are the responsibility of the UKG. In respect of all this legislation, the WG has no formal powers to enact, change or resist decisions made by the UKG, even where such changes may appear to run counter to the direction and wishes of elected officials in Wales. The direct consequence of this is an overt acknowledgement from WG that they must work alongside, and accept the decisions of, the UKG. As the current substance misuse strategy states, this necessitates 'pressing the case for legislative change with Whitehall Ministers… or seeking to reach agreement on where Wales and England legislation can be varied in Wales' . This very clearly imposes limitations on any current and future claims and desires for a divergent substance misuse policy. Following on from their inability to control legislation, the second limitation to divergence relates to the willingness of Welsh Ministers to campaign the UKG for change. The broader politics of crime and drugs control that has been widely noted at the broader UKG level generates an imperative for policy makers and politicians to be 'tough' on such issues . As such, this affects the extent to which politicians can be reflexive about their publicly known positions on drugs policy . The research showed that this is also felt in the sensitivities and anxieties of Welsh political actors. Indeed, it was felt by one SPF that 'putting your head above the parapet' to advance more liberal or progressive agendas on drug policy could effectively end your career. This is by no means unique to Wales, but within the Welsh context, there is limited open political support amongst Ministers or elected Assembly Members for alternatives to drug prohibition 13 . As a consequence, to speak out about issues such as drug classification and the harm-producing role of criminal justice is not perceived to be worth the risk it entails for most political actors. This is especially tricky for WG Ministers because substance misuse only equates to a small proportion of an extensive portfolio 14 . Therefore, to be risqué about a relatively modest area may have consequences on other aspects of the job that may well carry greater importance for an individual and their future career . Moreover, these dynamics are particularly conditioned by the relationship between WG and Whitehall, and so there is a sense that the WG has to be 'tentative' in the 'fights to fight': '…we have a series of difficult discussions that go on between ourselves and Westminster Government, would we choose to add this one [drugs legislation] to the list? I think probably not, because the other things that are on the list, are, you could argue in some ways are more pressing… you always worry that if you introduce another argument into that you will lose ground on some more important ones… Would you suddenly start not being able to win arguments over here because your attempt to win over here would be overshadowed by, undermined by, a different sort of argument. How could you possibly give those people those powers to do that when they're asking for this mad thing over here?' Significantly, even where the WG has demonstrated a willingness to challenge the UKG on legislation, which incidentally appears to only concern licit substances, it has also become clear that such endeavours are unlikely to result in a favourable outcome. For example, despite the continuing efforts being made by Welsh Ministers to have powers over alcohol licensing devolved to Wales , this plan was once again rejected within the UKG's St David's Day command paper . In this instance, the WG's demands were somewhat lost within a much broader set of discussions taking place around a move towards a reserved powers model, as well as the transfer of further powers to the National Assembly. The third restriction on divergence relates to the fairly narrow nature of policy-making in Wales. One criticism levelled at it by a SPF is that there 'isn't enough grit in the oyster', signifying a lack of critical debate amongst policy makers about drugs in Wales. Another political figure was equally critical of such practices: '…this fatuous idea that if you get lots of people sitting around a table you pool their wisdom, you don't, you pool their stupidity and their prejudice, and you don't get sense you get prejudice.' As such, there appears to be little willingness to look beyond prohibition for political decisions around illicit substances, with seemingly a large range of individuals from politicians to civil servants, experts and practitioners not engaging in the wider debate or challenging decisions made in Westminster: '…it's like the debate doesn't happen at all, so I get very straightforward advice within the parameters of the way that policy is currently configured… people like that [APoSM] who are not in the government machine but are there to advise it, even there they don't raise it as an issue at all. They simply talk within the tram lines.' 'I don't see any pressure on the WG to lobby the Westminster Government in opposition to any of the decisions around classification, and I don't see there currently being any appetite for them to do that either… those kind of pressures to my knowledge, having worked supporting and briefing ministers for some time around this, it's just not on the radar at all.' Importantly then, this effectively produces a deficit in Wales in what has been termed the 'primeval policy soup' , with only a narrow set of options made available for serious political consideration. In this sense, there appears to be a lack of debate, or even acknowledgement amongst politicians 15 , of alternative ways in which illicit substances could be managed at the UK level which could potentially allow for the WG's harm-reductive aims to be more straightforwardly achieved. Pervasive managerialist rhetoric such as '…making sure that services are equipped to meet the health needs of substance users is our top priority' and 'developing policies and strategies we know work' [SM Policy Worker, emphasis added] are all based within an acceptance of a 'hierarchy of credibility' that narrows the focus of 'harm' to a bounded framing of issues within a restricted template of policy responses. The notion that the very nature of UK controlled legislative frameworks could be a harm-producer is not considered, despite an abundance of research indicating such harms . From the perspective of substance misuse policy workers, the inability to change drugs legislation is not perceived to be a problem, and indeed is written off almost as incidental to the central aim of reducing harm. In relation to the 2009 reclassification of cannabis from Class C to Class Bwhich granted greater powers to the police as well as extending the maximum sentences available in the courts -it was suggested by one SCS that discussions over criminal justice and drug classification were 'irrelevant'. Rather, it was important to ensure that '…whatever strategic decisions are taken centrally in terms of classification we end up then with the best fit for our demographic and our population' [LA/WG Substance Misuse Policy Worker]: '…rather than argue about the class of any drug, what we talk about in our strategy are just the harms it can cause… from our point of view the messages to people is almost irrelevant to their classification in that respect because we're looking at prevention, education, the risks associated, and the treatment… so we have not got dragged in to that … which is not actually a WG responsibility' Whilst not exhaustive, this paper has identified three limiting factors to a distinct Welsh drug policy. The accounts presented here appear to affirm that in some crucial respects Wales is still 'hanging on English coat-tails'. Most significantly, however, is that the WG's inability to change drugs legislation -which is then responsible for a reluctance amongst Welsh Ministers and policy makers to campaign for change, as well as a fairly narrow policy circle -means that Wales remains wedded to the UKG's approach. Although it important to note that Wales has diverged in drug policy -the factors outlined here are helping to reproduce orthodoxical, UK led, positions at the expense of a wholly distinct or divergent Welsh drugs policy. --- Concluding Remarks In summary, executive devolution to Wales has enabled divergence to occur and is responsible for distinctive features in Welsh drug policy. The maturity of Welsh democratic institutions has enabled growth in the bureaucratic policy machinery, including data collection, which in turn has served to further the development of a 'Welsh approach' to 'substance misuse'. There are some commendable aspects to this approach, which appears to be more rational, consistent, and progressive than that found at the UKG level. Nevertheless, owing to a set of limitations, which restrict the ability, and willingness of WG to fundamentally challenge or resist the unidirectional flow of laws and policies enacted in Westminster, any such claims to a distinct Welsh approach must be approached with caution. Given recent figures which reveal an increase in drug-related deaths in Wales , this somewhat represents a failure to meaningfully, and more radically, respond in ways which reduce one of the severest harms caused by drug use. Through the examination of drug policy in the Welsh context this paper has challenged the hegemony of anglocentric criminology . Whilst the exact configuration of postdevolution drug policy in Wales remains indisputably complex, it is no longer accurate, and therefore worthwhile or suitable, to approach Welsh drug policy as something simply coordinated as part of a 'broader UK strategy' . The arguments presented here pose several further interesting and important questions for criminologists attempting to understand the contours of drug policy and criminal justice in Wales and the UK. First, there is the need to assess the impact made by the UKG's decentralising and privatising reforms to criminal justice. Developments such as the introduction of Police and Crime Commissioners , the introduction of Community Rehabilitation Companies , and the formation of Welsh-specific organisations such as HM Prison and Probation Service in Wales, should be paid greater attention to assess how these interact with agenda setting and policy implementation within the devolved context. Second, there is a need to understand more comprehensively the mechanisms and forces in play at a more localised level across all parts of the UK, and how they may shape, and be shaped by, their broader constellations of governance, whether that be at a devolved, UK, or international level. In doing so, there can be greater certainty over whether, for example, adaptive responses `on the ground` are a result of the `Welsh approach`, or if they reflect broader tendencies and tensions in the `structured ambivalence` of drugs control . Finally, as drug policy across the UK continues to traverse the forces of constitutional change, future developments such as English regional devolution, the potential transfer of drug policy to Scotland , and the UK's exiting of the European Union, are all likely to pose major challenges to the future configuration of UK drug policy. On a much broader international level, opportunities for divergence and policy innovation are also likely to shape the way in which drug policies are configured across local, municipal, regional, state or national levels . Indeed, the need to account for these changes is only likely likely to become greater as criminologists become more attuned to the fact that, as argued by Edwards et al., , policy variations within national borders "may be as great, or even greater" than those existing between nation states. For scholars who continue to speak of a unified and homogenous system, spirited by the assumption that intra-national contexts are either inconsequential or unable to resist, negotiate and enact policy change, the arguments presented throughout this paper should encourage critical criminologists to take account of the continually shifting UK terrain and the merits of developing a more constitutionally informed debate.
B r e w s t er, D avid a n d Jon e s, Ro b e r t 2 0 1 9. Dis ti n c tly div e r g e n t o r h a n gi n g o n t o E n glis h c o a t-t ails? D r u g p olicy in p o s t-d e vol u tio n Wale s. C ri mi n olo gy a n d C ri mi n al Jus tic e 1 9 (3) , p p . 3 6 4-3
Introduction Workplace bullying entails negative consequences on workers' life, by exposing workers to negative acts of co-workers, supervisors or subordinates [1,2]. The prevalence of workplace bullying is high across nations [3] and it is becoming an increasingly serious issue in South Korea in recent years. The vast majority of Korean employees report they have experienced some form of bullying within the previous six months [4]. The rate of workplace bullying experiences is even higher among employees who work long hours and non-regular employees who may have job insecurity [5]. Workplace bullying may impair employees' mental and physical health. However, there is lack of empirical research focusing on workplace bullying in Korea and its associations with Korean employees' well-being. Moreover, less is known about potential mediating mechanisms linking workplace bullying and employee well-being [6]. Work-to-family conflict is a possible mediator between workplace bullying and employee well-being. Work-to-family conflict refers to time-based, strain-based, and behavior-based interrole conflict between mutually incompatible demands from work and family domains in some respect [7]. According to the work-family interface model [7][8][9], negative experiences and stressors from workplaces often spill over into employees' personal and family life via work-to-family conflict [10][11][12][13]. Work-to-family conflict, in turn, is associated with employees' negative health and well-being outcomes [14][15][16][17][18][19]. Based on the work-family interface model, previous studies have paid much attention to the negative work-to-family spillover effects of employees' emotional labor, abusive supervision, and social ostracism at workplaces [10][11][12][13][20][21][22][23]. However, there has been lack of research examining the negative work-to-family spillover effects originate from workplace bullying. To address this gap in occupational literature, this study examines the potential mediating role of work-to-family conflict in the link between workplace bullying and employee well-being outcomes assessed by quality of life and occupational health. Most of existing studies on workplace bullying have been based on Western samples, lacking in consideration of different cultural values on interpersonal relationships or organizational hierarchies and cultures in non-Western countries [6,23,24]. Findings from the Korean employee sample may enrich our understanding of the mechanism in which workplace bullying impairs employee well-being in a cultural context where employees are particularly vulnerable to experiencing workplace bullying and work-to-family conflict. --- Theoretical and Empirical Background Linking Workplace Bullying to Employee Well-Being Workplace bullying is generally defined as situations where an employee is exposed to negative actions on the part of co-workers, supervisors or subordinates repeatedly and over a period of time [25]. It is different from workplace violence [26] or occupational stalking [27] in its nature of repetition, persistency, hostile intentionality of negative acts, and power imbalance. Some forms of workplace bullying behaviors include wrong or unjust judgement about a bullied employee's work performance, criticizing one's personal life, restricting expression of personal opinion, assigning meaningless tasks, and backbiting. Such negative actions are unwanted and resented by the victim employees and may cause humiliation and distress in victims and also potentially in observers [28]. Previous research has observed the negative consequences of workplace bullying on employees' health and well-being, including deterioration of psychological well-being, complaints about physical and somatic symptoms, and poor quality of life [29][30][31][32]. Both the victims of bullying and the observers report more general stress and mental stress than those without bullying experiences [33]. There may also be a long-term health consequences of workplace bullying. A 3-wave follow-up study from Danish employees in a period of four years has shown that negative health problems caused by workplace bullying last over several years even after bullying was discontinued [34]. --- Work-to-Family Conflict as a Mediating Mechanism Work-family conflict refers to "a form of interrole conflict in which the role pressures from work and family domains are mutually incompatible in some respect" , which includes time-based, strain-based, and behavior-based conflict. The work-family interface model [7][8][9] suggests that negative experiences from work often spill over into employees' non-work domains and interfere with family and personal activities that are critical for employee well-being. The emotional and strain-based work demands can threaten employees' psychological resources including needs for autonomy, competence, and relatedness and hamper their involvement to meet role requirements in family and personal domains [35][36][37][38][39]. Through this work-to-family conflict mechanism, employees may transmit their negative emotions toward and come into conflict with family members, thereby their family roles, relationships, and family time may be negatively influenced [23,40]. Previous studies found the effects of work-to-family conflict on employee's psychological distress [17,19], somatic symptoms and health complaints [14][15][16], and occupational well-being [18]. Many studies have examined work-to-family conflict consequences associated with employees' emotional labor, non-supportive or abusive supervision, psychopathic leadership, and ostracism in workplaces [10][11][12][13][20][21][22][23]. Scant empirical research has been done on the work-to-family conflict effect on the link between workplace bullying and employee well-being outcomes such as quality of life and occupational health. Employees who are frequently exposed to workplace bullying may experience considerable strain at work in trying to defend and protect themselves. This consumption of victims' physical and psychological resources might negatively spill over into their family and personal domains, which could impair well-being. One of the rare studies of this kind was recently performed by Sanz-Vergel and Rodríguez-Muñoz [41], who examined the mediating effect of work-to-family conflict on the relationship between workplace bullying and employees' health problems in the telecommunications sector in Spain. They found that work-to-family conflict partially mediated the positive association between employee's workplace bullying experiences and health problems including somatic symptoms, anxiety, and insomnia. Thus, based on the work-family interface model [7][8][9], we could propose that more exposure to workplace bullying is associated with lower well-being outcomes, mediated by higher work-to-family conflict. --- Extent of Workplace Bullying in Korean Workplaces Contextual characteristics in a certain culture and nation may influence on the people's work and family life [42]. According to the well-known Hofstede's cultural dimensions, Korea is considered to be a society with high levels of power distance, uncertainty avoidance, collectivism, Confucianism, and restraint [43,44]. In this culture, Korean workplaces have tended to have strong hierarchy of top-down organizational culture with the hard work ethic for long hours and let the group interests take precedence over the individual rights of employees [42,45,46], which is more likely to be a breeding ground for workplace bullying acts and behaviors [47]. For example, abusive supervisors or colleagues might exploit the victim's work-oriented attitude by top-down leadership or collectivistic peer pressure. According to Seo's survey in 2010, 4% of Korean employees working in healthcare, manufacturing, service, and financial industries were the victims of workplace bullying and only 13.4% reported that they had never experienced any forms of workplace bullying during the past six months [4]. Among a number of Korean industries, employees working in education, banking, and healthcare industries seem more vulnerable; about 25% of education industry workers were the victims of workplace bullying and banking industry workers reported average 34 exposure to workplace bullying per month [5]. The most frequent negative acts experienced by the respondents were 'being urged to resign', 'ideas or opinions being ignored', and 'being humiliated'. Especially, employees in education, banking, and healthcare sectors came under pressure to resign once a week. Employees who worked long hours or non-regular workers reported more exposure to workplace bullying [5]. Although workplace bullying is one of the major social problems in Korea and the media is paying attention to the recent suicide cases of employees due to severe stress from workplace bullying [48], this topic has received little scholarly attention. There has been lack of knowledge about the prevalence, antecedents, consequences, and mechanisms of bullying in Korean workplaces. To examine the associations between workplace bullying, work-to-family conflict, and employee well-being, the current study used data collected from employees in education, banking, and healthcare industries in Korea, where workplace bullying is a particular concern. --- Present Study Building on the work-family interface model [7][8][9], we examined the cross-sectional associations between workplace bullying, work-to-family conflict, and employees' well-being outcomes. Using data collected from three service industries in Korea, we tested the mediating role of work-to-family conflict in the associations of workplace bullying with quality of life and occupational health, two outcomes reflecting employees' overall well-being. Our hypotheses are as follows, with specific paths are illustrated in Figure 1. Hypotheses 1. More exposure to workplace bullying will be associated with higher work-to-family conflict . Hypotheses 2. Higher work-to-family conflict will be associated with lower well-being, assessed by quality of life and occupational health . Hypotheses 3. More exposure to workplace bullying will be indirectly associated with lower well-being, mediated by higher work-to-family conflict . --- Int. J. Environ. Res. Public Health 2018, 15, x 4 of 14 --- Hypotheses 2. Higher work-to-family conflict will be associated with lower well-being, assessed by quality of life and occupational health . Hypotheses 3. More exposure to workplace bullying will be indirectly associated with lower wellbeing, mediated by higher work-to-family conflict . --- Materials and Methods --- Participants and Procedure Employees working in healthcare, education, and banking industries in South Korea participated in this study. Participants were recruited across multiple worksites within each industry from July to September 2014. Those worksites included 4 clinics and hospitals , 6 elementary, middle and high schools , and 12 banks, insurance companies, and other financial institutions . All worksites were located in Seoul and Gyeonggi-do, the capital city and the province area surrounding the capital city, respectively. Only regular employees and middle managers and below level were invited to participate in the study. A paper-pencil questionnaire measuring respondent's exposure to workplace bullying, workto-family conflict, quality of life, occupational health, and demographic variables was administrated for about twenty minutes in the employee lounges, cafeterias, and lobbies at each workplace. Participants were briefed about the research purpose and requirements of this study, and then informed that their participation would be voluntary and anonymous, guaranteeing confidentiality. After they agreed to participate and provided consent, 444 questionnaires were distributed and 410 employees completed the survey, resulting in a high response rate of 92.3%. One of our main variables asked about the extent to which work experiences interfere with family and personal life . Thus, we restricted our sample to those who were in heterosexual married/partnered status, because homosexual relationship is socially unacceptable and against the law in South Korea. Out of 410 employees who completed the questionnaire, 307 employees were heterosexual married/partnered, regular employees, and middle managers and below level at the time of survey, thus the final analytic sample of the current study. Their demographic information is provided in Table 1. --- Measures --- Workplace Bullying Exposure to workplace bullying was measured by twenty-two items of the Negative Acts Questionnaire [49]. Employees were asked to report the extent to which they had been exposed to specific negative behaviors at their workplace within the previous six months. Sample items include "Someone withholding information which affects your performance," "Being "c" --- Materials and Methods --- Participants and Procedure Employees working in healthcare, education, and banking industries in South Korea participated in this study. Participants were recruited across multiple worksites within each industry from July to September 2014. Those worksites included 4 clinics and hospitals , 6 elementary, middle and high schools , and 12 banks, insurance companies, and other financial institutions . All worksites were located in Seoul and Gyeonggi-do, the capital city and the province area surrounding the capital city, respectively. Only regular employees and middle managers and below level were invited to participate in the study. A paper-pencil questionnaire measuring respondent's exposure to workplace bullying, work-to-family conflict, quality of life, occupational health, and demographic variables was administrated for about twenty minutes in the employee lounges, cafeterias, and lobbies at each workplace. Participants were briefed about the research purpose and requirements of this study, and then informed that their participation would be voluntary and anonymous, guaranteeing confidentiality. After they agreed to participate and provided consent, 444 questionnaires were distributed and 410 employees completed the survey, resulting in a high response rate of 92.3%. One of our main variables asked about the extent to which work experiences interfere with family and personal life . Thus, we restricted our sample to those who were in heterosexual married/partnered status, because homosexual relationship is socially unacceptable and against the law in South Korea. Out of 410 employees who completed the questionnaire, 307 employees were heterosexual married/partnered, regular employees, and middle managers and below level at the time of survey, thus the final analytic sample of the current study. Their demographic information is provided in Table 1. --- Measures --- Workplace Bullying Exposure to workplace bullying was measured by twenty-two items of the Negative Acts Questionnaire [49]. Employees were asked to report the extent to which they had been exposed to specific negative behaviors at their workplace within the previous six months. Sample items include "Someone withholding information which affects your performance", "Being ordered to do work below your level of competence", and "Having your opinions and views ignored". Each item was rated on a 5-point scale such as 0 = never, 1 = now and then, 2 = monthly, 3 = every week, and 4 = daily. Some previous studies considered a frequency of roughly weekly exposure over about 6 months as severe cases of workplace bullying [1]. To capture the effect of any exposure to workplace bullying in this study, we considered responses 1 or higher as having exposure to workplace bullying . Then we summed the binary indicators across 22 items to create total workplace bullying exposure variable; higher scores representing more exposure to workplace bullying. The Cronbach's alpha for the 22 items was 0.92. --- Work-to-Family Conflict Work-to-family conflict was measured with four items of the Work to Family Conflict Scale [50], in which employees were asked to report the extent to which they had experienced work conflicts with family in the past year. Each item was rated on a 5-point scale from 1 = never to 5 = all of the time. Sample items include "Your job reduces the effort you can give to activities at home", "Stress at work makes you irritable at home", and "Your job makes you feel tired to do the things that need attention at home". The mean of the 4 items was calculated, with higher scores representing greater work-to-family conflict. The Cronbach's alpha for the 4 items was 0.82. --- Quality of Life Employees' perceptions of their quality of life were assessed via six items excerpted from the Quality of Life Scale-Parent Form [51]. Respondents rated their satisfaction in family life, time for work, family and leisure, and financial well-being on a 5-point Likert scale from 1 = very dissatisfied to 5 = very satisfied. Example items read, "How satisfied are you with your family life?", "How satisfied are you with your time?", and "How satisfied are you with your financial well-being?" The mean of the 6 items was calculated, with higher scores representing higher quality of life. The Cronbach's alpha for the 6 items was 0.81. --- Occupational Health To assess employees' overall perceived health affected by their occupation, we used two items adapted from Zoller's [52] interview question in terms of physical and psychological aspects. The items read, "How does your job affect your physical health?" and "How does your job affect your mental health?" Responses were coded as 1 = very negatively, 2 = negatively, 3 = neither negatively nor positively, 4 = positively, 5 = very positively. The mean of the two items was calculated, such that higher scores reflected greater occupational health. --- Covariates We controlled for employees' sociodemographic and work characteristics as covariates, including age, gender, education level, and work hours. Age and work hours as continuous variables were self-reported in years and hours, respectively. Gender and education level were dummy coded. In addition, we considered potential differences by industry. In our sample, the banking industry had the largest number of employees and thus served as the reference group . --- Analytic Strategy We used multiple mediation analyses with bootstrapping method using the SAS PROCESS macro [53]. This method allows for the estimation of the indirect effect, based on the product of the effect of a predictor on a mediator and the effect of the mediator on an outcome. The indirect effect reflects "a × b" in Figure 1. The bootstrapping method also produces a bias-corrected confidence interval for the indirect effect [53]. In all models, we set the number of bootstrap samples to 10,000. --- Results Table 1 shows descriptive results of our variables and comparisons by industry. Beginning with sociodemographic characteristics, the average age of our sample was 42.85 years and banking industry employees were older than healthcare industry employees . Sixty-one percent were women, with a higher proportion of women in the education industry . The majority of the employees were college graduates or had higher education; this trend was more apparent in the education industry than in the banking industry . The mean work hours was 43.83 h per week and banking industry employees worked significantly longer hours than those in the other two industries. In terms of our main variables, the mean exposure to workplace bullying for an average employee was not so high ; yet, there was a great variability between employees . More than half of employees endorsed one particular item, "Someone withholding information which affects your performance." Employees in the healthcare and banking industries reported significantly more exposure to workplace bullying than those in the education industry . Our sample of employees reported a moderate level of work-to-family conflict and a high level of quality of life , on average, with no differences by industry. The mean level of occupational health was moderate , and it was higher for education industry employees than for banking industry employees. Table 2 shows results of the mediation model examining the effect of workplace bullying on quality of life through work-to-family conflict. The first column presents the results of "a" path, the association of workplace bullying with work-to-family conflict adjusting for covariates. Employees in the healthcare and education industries reported lower work-to-family conflict than those in the banking industry. Women , employees with college or higher education , and those with longer work hours reported higher work-to-family conflict. After controlling for these effects, there was a significant association of workplace bullying with work-to-family conflict, such that more exposure to workplace bullying was associated with higher work-to-family conflict. Moreover, higher work-to-family conflict was associated with lower quality of life . Before including work-to-family conflict, there was a significant negative association of workplace bullying with quality of life ; this association was slightly reduced after including work-to-family conflict . The association was found after adjusting for industry, sociodemographic characteristics, and work hours . On the whole, then, the model revealed a significant indirect effect of workplace bullying on quality of life mediated by work-to-family conflict. Twenty percent of the total effect of workplace bullying on quality of life was explained by the indirect effect through work-to-family conflict. Table 3 shows results of the mediation model examining the effect of workplace bullying on occupational health through work-to-family conflict. Consistent with the previous model , more exposure to workplace bullying was associated with higher work-to-family conflict . Further, higher work-to-family conflict was associated with lower occupational health . This link was independent of the significant associations of education industry and older age with higher occupational health. The total effect of workplace bullying on occupational health was also significant . However, after including work-to-family conflict, the direct association of workplace bullying with occupational health was reduced . Overall, the model revealed a significant indirect effect of workplace bullying on occupational health mediated by work-to-family conflict. Forty-one percent of the total effect of workplace bullying on occupational health was due to the indirect effect through work-to-family conflict. Figure 2 summarizes our results showing the mediating effects of work-to-family conflict on the links between workplace bullying and two well-being outcomes. More exposure to workplace bullying was associated with higher work-to-family conflict , which was, in turn, associated with lower levels of quality of life and occupational health . Work-to-family conflict was a significant mediator in the association between workplace bullying and well-being . --- Discussion Guided by the work-family interface model [7][8][9], we examined the mediating role of work-tofamily conflict in the associations between workplace bullying and well-being outcomes among Korean employees. Consistent with our hypotheses, results revealed that more exposure to workplace bullying was associated with greater work-to-family conflict, and greater work-to-family conflict was further associated with lower quality of life and occupational health. We have found no other studies that report the consequences and mechanisms of workplace bullying in Korean employees. Given that workplace bullying is a serious issue in many countries [3], our findings may add regional empirical evidence to the literature on workplace bullying. We found that Korean employees who had more exposure to workplace bullying reported experiencing greater work-to-family conflict. This finding supports the work-family interface model [7][8][9] which suggests that stressful work experiences such as workplace bullying may spill over into employees' non-work domains and interfere with family and personal activities. Specifically, stress from workplace bullying experiences might have threatened employees' psychological resources and thus reduce their ability to be involved in family and personal roles and responsibilities [35][36][37][38][39]. Note that the mean levels of workplace bullying exposure and work-to-family conflict experiences were not high in our sample, but the two variables were positively covaried. It may also be important to mention differences in the levels of workplace bullying and work-to-family conflict by industry. We observed that Korean employees in the healthcare and banking industries reported significantly more exposure to workplace bullying than those in the education industry . Moreover, Korean employees in the healthcare and education industries reported higher work-to-family conflict than those in the banking industry after adjusting for sociodemographic characteristics and work hours . However, the positive association between workplace bullying and work-to-family conflict was found across the three industries, which may suggest the strong link between them. Our results also revealed that greater work-to-family conflict was associated with lower levels of quality of life and occupational health. This is in line with previous studies that report the negative consequences of work-to-family conflict on employee health and well-being [14][15][16][17][18][19]. Korean employees work long hours and work in hierarchical culture [42,45,46], all of which may be risk --- Discussion Guided by the work-family interface model [7][8][9], we examined the mediating role of work-to-family conflict in the associations between workplace bullying and well-being outcomes among Korean employees. Consistent with our hypotheses, results revealed that more exposure to workplace bullying was associated with greater work-to-family conflict, and greater work-to-family conflict was further associated with lower quality of life and occupational health. We have found no other studies that report the consequences and mechanisms of workplace bullying in Korean employees. Given that workplace bullying is a serious issue in many countries [3], our findings may add regional empirical evidence to the literature on workplace bullying. We found that Korean employees who had more exposure to workplace bullying reported experiencing greater work-to-family conflict. This finding supports the work-family interface model [7][8][9] which suggests that stressful work experiences such as workplace bullying may spill over into employees' non-work domains and interfere with family and personal activities. Specifically, stress from workplace bullying experiences might have threatened employees' psychological resources and thus reduce their ability to be involved in family and personal roles and responsibilities [35][36][37][38][39]. Note that the mean levels of workplace bullying exposure and work-to-family conflict experiences were not high in our sample, but the two variables were positively covaried. It may also be important to mention differences in the levels of workplace bullying and work-to-family conflict by industry. We observed that Korean employees in the healthcare and banking industries reported significantly more exposure to workplace bullying than those in the education industry . Moreover, Korean employees in the healthcare and education industries reported higher work-to-family conflict than those in the banking industry after adjusting for sociodemographic characteristics and work hours . However, the positive association between workplace bullying and work-to-family conflict was found across the three industries, which may suggest the strong link between them. Our results also revealed that greater work-to-family conflict was associated with lower levels of quality of life and occupational health. This is in line with previous studies that report the negative consequences of work-to-family conflict on employee health and well-being [14][15][16][17][18][19]. Korean employees work long hours and work in hierarchical culture [42,45,46], all of which may be risk factors for work-to-family conflict and degraded well-being. Given that happier employees are more productive at work [54], Korean employers should make more efforts to reduce work-to-family conflict and thereby improve their employees' well-being. For example, a workplace intervention designed to increase supervisor support may reduce work-to-family conflict [55], and by doing so, improve employee health and well-being [14,56]. Combining these results, this study observed that workplace bullying was associated with employee well-being , and this association was partially mediated by work-to-family conflict. Before adding work-to-family conflict in our analytic models, workplace bullying was significantly associated with quality of life and occupational health. However, these associations became weaker after including work-to-family conflict. Although not fully mediated, considerable proportions in the total effects of workplace bullying on quality of life and occupational health were explained by work-to-family conflict. This study contributes to understanding the mechanisms in which workplace bullying is linked to Korean employees' well-being. Future research may need to consider other potential mechanisms linking workplace bullying and employee well-being, as we found that work-to-family conflict did not fully mediate the association. --- Practical Implications Korea currently has no legal definition and laws on workplace bullying. This study urges that it's about time to develop rules to reduce workplace bullying incidences in Korea as well as to protect Korean workers from its negative consequences. Most of European countries and parts of Canada and Australia have established laws and regulations against workplace bullying [57,58]. Their practices and success stories may guide Korean government's legislation. In addition, work and life balance rather than achieving goals and career success is a continuously important topic among Korean employees because many Korean workplaces are highly competitive and demand individual sacrifice for the larger organization. The mediating effects of work-to-family conflict on the negative associations between workplace bullying and employee well-being found in this study suggest that each workplace needs to implement work-life balance policies and establish ethical standards and infrastructure [59] for the prevention and handling of workplace bullying. Workplace bullying may also involve substantial costs for the community due to degraded health as well as for the employers in terms of lost productivity. In order to legislate against workplace bullying in Korea, a business case needs to be made. Findings from this study may also provide broader implications for other countries who have similar issues of work and family life with Korea and want to improve their own workplace practices. --- Limitations and Future Directions Several of this study's limitations provide useful directions for future research. First, we used self-reports of workplace bullying, work-to-family conflict, quality of life, and occupational health that may pose a risk for common-method bias [60]. For example, an employee who experienced more workplace bullying might have responded negatively to the items of quality of life and occupational health. Future research may benefit from incorporating objective measures of well-being, such as clinical health measures or biomarkers of stress. Second, our sample was purposely selected from multiple worksites in three industries in South Korea, and thus it is not representative of Korean employees. In the future, it is necessary to include workplace bullying items in a national survey so that we can draw national-level inference about the negative influence of workplace bullying. It may also be that our measure of workplace bullying may not fully capture the real phenomenon of workplace bullying. According to Seo [5], only about 38% of victim employees in Korea report the incidents of bullying, because of their perception that some extent of bullying is unavoidable in Korean workplace culture. As such, we may underestimate the extent of workplace bullying. Future research may need to improve the validity of workplace bullying measure by cultural and occupational contexts. More specific measurements about workplace bullying are also needed. For example, there may be differences between men and women in the experience of workplace bullying consequences of it [61]. Moreover, more regional analyses are needed to see whether findings from our study are replicated in other settings. Finally, our cross-sectional analyses cannot determine the direction of effect. Although our analytic models imply that workplace bullying is a predictor, work-to-family conflict is a mediator, and quality of life and occupational health are outcomes, there is no temporal order between the variables and causality can operate in other directions. Future research should include multiple time points to identify the direction of effect. --- Conclusions Findings from this study highlight that workplace bullying is an important work-derived stressor associated with Korean employees' work-to-family conflict and well-being outcomes. All of our research hypotheses were supported: More exposure to workplace bullying was associated with lower levels of quality of life and occupational health among Korean employees; specifically, the negative associations were mediated by greater work-to-family conflict. At the most basic level, both workplace bullying and work-to-family conflict are societal concerns, and thus future research should continue to focus on this topic by examining multiple pathways linking workplace bullying to well-being outcomes in diverse employee samples across countries. A more harmonious workplace may improve the employees' well-being, which may ultimately enhance productivity and health at the larger society. ---
Workplace bullying entails negative consequences on workers' life. Yet, there is lack of research on workplace bullying in an Asian context. Moreover, less is known about the potential mechanisms linking workplace bullying and employee well-being. This study examined the associations between workplace bullying and Korean employees' well-being (quality of life, occupational health) and whether the associations were mediated by work-to-family conflict. Cross-sectional data came from 307 workers in South Korea who were employed in healthcare, education, and banking industries. Analyses adjusted for industry, age, gender, education, marital status, and work hours. Employees who had more exposure to workplace bullying reported lower levels of quality of life and occupational health. These associations were mediated by work-to-family conflict, such that more exposure to workplace bullying was associated with greater work-to-family conflict, which, in turn, was associated with lower levels of quality of life and occupational health. These mediating pathways were consistent across the three industries. Korean employees who experience more workplace bullying may bring unfinished work stress to the home (thus greater work-to-family conflict), which impairs their well-being. Future research may need to consider the role of work-to-family conflict when targeting to reduce the negative consequences of workplace bullying.
Introduction With the future as the background of the epidemic era, this paper explores the modernization of urban community governance capacity. At present, the modernization of urban community governance capacity in China is in the stage of exploration, and a lot of research and exploration are needed in the theoretical output and method practice. This paper emphatically from the perspective of modern construction of urban community governance ability, HF city in Anhui province, for example, analyzes the development status and reason, through the feasibility and scientific analysis of its deficiencies and put forward scientific Suggestions, to improve the level of community governance, promoting the modernization of national management ability and management system has important practical significance. [1] [2] [3] --- The Basic Connotation and Structure of the Modernization of Urban Community Governance --- The Basic Connotation of Urban Community Governance Modernization With the rapid development of China's economy and the improvement of people's living standards, the basic connotation of the modernization of urban community governance has been defined in modern times, and the following main research directions of the modernization are given: first, the main contents of the modernization of urban community governance; second, the basic attributes of the modernization of urban community governance; the main role of the modernization of urban community governance; and the goal of the modernization of urban community governance. First of all, the main content of urban community governance modernization is based on the modernization of community governance system and governance capacity, mainly to enrich the modernization of community governance. Secondly, the basic attribute of community governance modernization is to improve the participation of residents, so that residents can have a real sense of participation and identity to invest in the community construction. Again, the main role of the modernization of community governance is reflected in improving the awareness of grassroots governance to the greatest extent, promoting the modernization of national governance capacity and governance system, and strengthening the level of community governance. Finally, the main goal of urban community governance is to enhance the ability of community governance, improve residents' satisfaction, and provide a better living environment for residents. --- The Structural Framework of Urban Community Governance Modernization Urban community using "by a house in a station for" community organization structure, urban community party organizations, community residents' committees, community affairs workstation, community management summary management do mutual contact, mutual restriction, other social organizations and community residents to participate in community governance system, in order to improve the level of community construction, actively promote community construction. This framework structure to improve the efficiency of the community, four mutual restriction, mutual correlation, closely around the community party group leadership work, with inner-party democracy drive social democracy, increase residents autonomy, enhance the grassroots public service consciousness, enhance residents service quality, improve the efficiency of grassroots comprehensive management work, the construction of a harmonious community. --- Analysis of the --- 1) The workload of community governance is large and the quality of autonomous organizations is uneven Community governance work plays an important role in residents' committees in modernization, for some township community, most residents are retirees, laid-off workers, etc., low level of education, strain capacity for work is poor, most residents for community work efficiency, little work content for the community, so for the regular activities of the community participation is not high. At the same time, with the acceleration of the urbanization process, the continuous increase of community population, to a certain extent, leads to frequent changes of community responsibilities, increased management difficulty, increased management tasks and increased number of tasks. As a result, the community work is miscellaneous, some staff work attitude is loose, the staff is floating, reducing the public awareness of community governance participation, at the same time, the governance ability of community governance cannot be broken through. --- 2) Grassroots management is rigid, and the governance mode is too administrative For grassroots construction this year to the local grassroots government for community management has too much interference, mostly in the process of administrative order, management is more traditional, not get rid of the bondage of traditional thinking, only around the superior command and the traditional guidance, the lack of listening to the attention of the people, too one-sided, policy formulation and administrative management lack of public opinion, of the grass-roots government has yet to get rid of arranged, do, etc., in the long run, seriously weaken the enthusiasm of residents to participate in, for the improvement of the community modern management ability produce serious obstacles. --- 3) Residents lack the awareness of participation and have poor community public service facilities As one of the main bodies of community governance, residents lack the awareness of participation in the process of community governance, which is difficult to play their role as the main body of the community, and difficult to integrate into community activities. They participate in community activities with full enthusiasm and active attitude, and only blindly passively follow community management and administrative orders. As one of the important equipment in community governance, community public service facilities not only provide community governance places for residents in their daily work, but also become the link between the masses. However, the current community public service facilities are insufficient and the quality is poor, and the attraction to the residents of the community is reduced by a few minutes. --- Analysis of the Reasons for the Insufficient Modernization of Community Governance in HF City in the "Big Test" of the Epidemic 1) The government's own positioning is unclear and its responsibilities are chaotic When exercising its own functions, the government often lacks accurate positioning, often takes charge of community work in other departments, and lacks initiative and creativity in function undertaking. In a long run, it has caused low efficiency of community work, and a large number of complicated works is redundant, making it difficult to step in community governance work. On the other hand, the government's responsibilities are not clear, so it is difficult to mobilize community residents to participate in the community governance work. The communication efficiency among various departments within the government needs to be improved. Only by actively meeting the public opinion and letting community residents participate in the work of community governance can the benign operation of the government and community departments be promoted. 2) The quality of community personnel is uneven, and the source of community funds is single Urban community governance work is one of the important role in community workers, community workers for the current lack of specialization, quality level, etc., and so on and so forth, community workers work attitude and ability is crucial for community governance, the current HF city community work team personnel quality and professional ability is difficult to adapt to the requirements of community governance, because of the current community workers to retirement age, and the degree is low, community workers ability, team is weak. Working funds for the community are one of the important sources of work in the community. Although the state financial subsidy to the community has improved the community infrastructure, there is no other way to raise the community funds except for the traditional financial subsidy, which is not conducive to the long-term development of the community. 3) Residents' sense of participation is not strong, and their enthusiasm needs to be improved Measure of a community governance ability is the most important index of the residents' participation and identity, but H city community residents' overall participation is not high, the main body of community residents' participation consciousness is insufficient, as community residents cannot well recognize the community work is not only the community workers, also need residents active participation and cooperate. At the same time, the main group of the community is single, mainly for the elderly, which makes it difficult for the community to fully gather and reflect the needs of people from all walks of life. At the same time, the participation mechanism of community residents is not perfect, and a considerable number of residents have little community activities, and the publicity of relevant activities is not enough, resulting in low awareness of participation and low enthusiasm. --- Experience and Enlightenment in Promoting the Modernization of Urban Community Governance in the Post-Epidemic Era --- 1) Improve infrastructure construction and build new service modes Community infrastructure quality directly determines the level of community service, look from the traditional community governance, the new comprehensive community construction, network service system construction, better meet the background of residents living, life and leisure and other material and spiritual needs, especially to adapt to the service characteristics and requirements of the network age, informatization, intelligent service to build the new connection between community and residents, presents the characteristics of service and management level directly linked. --- 2) Expand the number of participants and build new ways of participation For community participation more traditional relatively single, thus expand the new participation main body, the community residents and managers, volunteers and related groups all assembled to the community work, make a single governance environment into multiple community work, the development of the community and functions associated with social development, from one-sided to all-round governance, achieve the goal of cooperation work. --- 3) Mobilize the enthusiasm of the residents, innovate the leading mechanism For community participation more traditional relatively single, thus expand the new participation main body, the community residents and managers, volunteers and related groups all assembled to the community work, make a single governance environment into multiple community work, the development of the community and functions associated with social development, from one-sided to all-round governance, achieve the goal of cooperation work. --- Modern Countermeasures for Urban Community Governance in the Post-Epidemic Era --- 1) Pay attention to the team construction of community workers and improve the comprehensive quality of the members of community organizations Community residents' committees staff ability directly reflect a level of community governance, only improve the comprehensive quality of community workers to better promote community construction, in the professional assessment to strengthen the professional ability and the core quality, the assessment personnel attitude of community workers, let its fully realize the importance of community work, at the same time the outstanding contributors to give incentives, fully stimulate the enthusiasm and creativity of community workers, with full emotion and enthusiasm into the community work. --- 2) Improve the urban community governance mechanism and promote the rule of law in community governance methods In the community epidemic prevention and control, HF city has undergone a serious test, and has rich experience sharing and relevant experience and lessons, which provides an effective governance path for the future development of the community. In community governance, we should be aware of the boundary between government responsibilities and community governance, straighten out the relationship between the government and society, resolutely do not interfere in the power of community governance, resolutely fulfill their own responsibilities in place, and improve the mechanism of community governance. Enhance the legal awareness of the community subject, through the professional legal knowledge training, enhance the handling ability of daily legal work, improve the level of community legal governance. We will actively promote the rule of law in community governance, strengthen the ability of community governance, strengthen residents' understanding of the rule of law, provide publicity on the rule of law, and form the concept of the rule of law. --- 3) Optimize service supply and promote social coordination To optimize the supply of community services, we must further clarify the process, norms and standards of services. The lack of a clear standard system for community service is an important reason for the low service quality and the frequent community conflicts. For the existing community service equipment, reduce the service process, optimize the service quality, standardize the service standard, combine the specific situation of the community, cooperate and govern from various aspects, clarify the responsibilities and obligations of the company, and promote the standardization of service. Thought is the forerunner of action, establish the concept of coordination and co-governance, in the process of community governance modernization, take the forerunner of coordination concept, and promote the community governance work under the guidance of its thought. In the process of community governance, multiple platforms should be incorporated to strive for the support and understanding of all parties, and gather governance synergy. --- Peroration To sum up, the community in the process of promoting the national governance modernization has a key role of a connecting link between the preceding, in the response to the new crown outbreak, is a major test of urban community governance, after the outbreak era should pay more attention to the relationship between the government, community, residents, promote collaborative work, transformation government function, reveal the advantage of social organizations to improve the participation of residents consciousness. At present, although there are still some difficult problems to be solved in the process of urban community construction, the solution to these difficulties is not only the efforts of the community itself, but also the cogovernance of multiple subjects. The modernization of urban community governance is an important part of the modernization of the national governance system and governance capacity. To some extent, the modernization of --- urban community governance is also an important embodiment of the modernization of the national governance system and governance capacity, and is the result of the remarkable improvement of China's governance capacity. [4]
General Secretary Xi Jinping stressed: " Community is the foundation of the grass-roots, the foundation is solid, can the national building be firm." Community governance work is related to the interests of many parties, the services of the government, as well as social stability and order, the modernization of urban community governance capacity has become the most prominent link in the modernization of national governance system and governance capacity In the post-epidemic era, the modernization of community governance capacity for community work and community organization is more and more obvious, and the demand is also more prominent. As the grassroots cell of modern national governance, the community plays a pivotal role in people's livelihood and social development, and plays an important role in improving the quality of urban life and enhancing the reputation of the city. The modernization of community governance is an important step in the current national governance. However, there are many problems in the actual community governance, such as community public services are not in place, residents have low enthusiasm to participate in community work, the ability of members of community organizations or the workload is large. In the current community governance of the grassroots management of rigid phenomenon, to seek diversified governance means, on the basis of considering community form change and governance needs according to the change of the existing social governance mechanism, above this according to the realistic path of urban community governance to provide accurate positioning, provide effective execution basis for urban community governance. To further promote the development of community, promote the modernization of community governance, we need to speed up the optimization of multiple governance pattern, in the era of the outbreak of social economic structure and social structure, the change of the specific governance demand analyzes the existing community governance phenomenon, from the governance ideas to the main body to finally to effect a series of exploration of community governance ability modernization to provide profound reference, grasp the correct direction of the current community governance, explore to adapt to the outbreak era after the effective path conducive to community development.
Background Traditional medicine refers to health practices, approaches, knowledge and beliefs incorporating plant, animal and mineral-based medicines, spiritual therapies, manual techniques and exercises, applied singularly or in combination to treat, diagnose and prevent illnesses or maintain well-being [1]. Traditional medicine is commonly used to treat or prevent diseases including chronic illness therefore improving the quality of life. It occupies an important place in the health care systems of developing countries. It is estimated that more than 80% of health care needs in these countries are met through traditional health care practices [2,3]. A traditional healer is defined as an educated or layperson who claims ability or a healing power to cure ailments. He could have a particular skill to treat specific types of complaints or afflictions and might have gained a reputation in her/his own community or elsewhere. Traditional healer may base his power or practice on religion, the supernatural, experience, apprenticeship or family heritage [3][4][5][6]. In the last decade, there has been a global increase in the use of traditional and complementary/alternative medicines in both developed and developing countries [5]. The reasons in developing countries are cultural acceptability, perceived efficacy, affordability, accessibility and psychological comfort. The other factors are inaccessibility of modern health services in terms of geography, cost or time, shortage of well-trained modern health professionals [3,[6][7][8][9][10]. Eighty percent of human and 90% of livestock in Ethiopia depend on traditional medicine for primary health care services where modern public health services are limited or note available [3,[8][9][10]. Traditional healers play an essential role in the delivery of primary health care to local people as they treat people in resource poor settings. These people have poor access to modern health services and could not afford the cost for modern health services [3,6,[9][10][11]. However, the contribution of traditional clinics to public health care system in Addis Ababa and other cosmopolitan cities where modern health services are found aggregated is not well documented and studies conducted so far are limited on the perceptions and practices of modern and traditional health practitioners about traditional medicine [6,[12][13][14][15][16]. Therefore, the purpose of this study is to document the type of diseases treated by traditional healers, reasons for choosing traditional healers' clinics and magnitude of contribution of traditional healers to public health care system in Addis Ababa. The study might be useful as base line data for future evaluation of the significance of traditional healers' clinics for public health system and the services rendered in these clinics. --- Materials and methods --- Description of the study area Addis Ababa is the capital city of Ethiopia with a population of 2.74 million [17]. Its area is estimated to be 530 Km 2 with altitudes ranging from 2200 to 3000 m above sea level, average temperature of 22.8°C and average rainfall of 1,180.4 mm. Addis Ababa has 30 hospitals, 29 health centers, 122 health stations, 37 health posts and 382 modern private clinics [18]. --- Study subjects Study subjects were 10 traditional healers who were willing to participate in the study, patients, 306, who were willing and attending traditional healers' clinics during data collection period in Addis Ababa. --- Ethnobotanical data collections The ethnobotanical data were collected using two types of semi-structured questionnaires from February to May 2010: one for traditional healers' clinics clients and the other for traditional healers. Face to face, interviews were conducted with traditional healers and their clients, and individuals accompanying children less than five years. Information on demographic characteristics, use and types of traditional medicine, sources of healing knowledge, number of visitors per day, reasons for visiting traditional healers' clinics, and the common types of diseases treated by healers was collected. The semi-structured questionnaires were prepared in English and discussion with respondents was conducted in the local language, Amharic. --- Data analysis Data were summarized using percentages and bar chart. Pearson's Chi-squares test was used to show presence or absence of association among different socio-demographic variables with traditional medicine use. P-value of less than 0.05 was considered as statistically significant difference. Single sample t test was conducted to determine variability within each category. SPSS version 13.0-computer software was used to analyze the data. --- Ethical clearance The study was ethically approved by Institute Review Board of Aklilu Lemma Institute of Pathobiology, College of Health Sciences, Addis Ababa University. Prior to the initiation of the interview, the aim of the study was elaborated to the participants, verbal consents were obtained from both traditional healers, and their clients' that participated in the study. --- Results --- Socio-demographic characteristics of patients visiting traditional healers' clinics Three hundred and six patients: 44.8% male and 55.2% female with a mean age of 28.1 years were interviewed and there was no significant difference between sexes . The participants, young , never married , orthodox and Amhara were frequent visitors of healers' clinics . There was significant difference within each demographic category . --- Health seeking behavior of patients visiting traditional healers' clinics Traditional healers' clinics were first choice for 172 patients for diseases like swelling, herpes zoster, wound, fracture, hemorrhoids, paralysis, back-pain, liver diseases, cancer and eczema . One hundred nineteen patients got information about traditional healers clinics from friends, 80 from family, 61 from previously treated individuals and 46 form multiple sources. Most patients, 183 visited traditional healers' clinics escorted by their family, whereas 96 went by themselves, and 27 with friends. One hundred seventy and three patients visited healers' clinics once, 85 two times, 34 three times, 9 four times and 5 more than 4 times in their life time. --- Reasons of visiting traditional healers' clinics Seventy-four patients that visited traditional healers' clinics reported that they were previously treated and cured. They were treated of diseases such as herpes zoster 35, wound 22, eczema 11 and swelling six . The reasons for visiting traditional healers' clinics by patients were 175 efficacy, 109 dissatisfaction with modern medicine, 10 dissatisfaction with modern medicine and efficacy, 6 cost and 6 dissatisfaction and cost. --- Attitude of patients to traditional healers' clinics The majority of the patients had positive attitude to the efficacy of traditional medicine and out of these patients, 116 rated the efficacy of traditional healers' service as good and 177 indicated side effect was low. About Fifty-nine percent of patients reported that they were satisfied with traditional healers' clinics services . --- Socio demographic characteristics of traditional healers The interviewed healers were males with a mean age of 51 years, and had religious education. They started traditional healing practice at their young age and were generalists that were treating different types of diseases. The majority of healers were Orthodox Christians. Their sources of knowledge were apprenticeships to parents . --- Knowledge and Practice of healers in Addis Ababa The majority of healers identified diseases and causes of illness by history-taking and physical diagnosis. During history taking, patient or person accompanying the patient was interviewed about the sign and symptoms of disease, the duration of the disease, age of the patient and history of similar disease in the family. In examination, they observed signs of diseases such as face color, abdomen size and discomfort, wound size and site, and urine color. On the other hand, a minority of the healers were using combination of history-taking, physical diagnosis and divination in identifying diseases and determining the type of medication. --- Source of medicine, preparation, prescription and fee The sources of medicine for the majority of interviewed traditional healers were plants, animals and minerals while for two healers were plants and animals, and for one healer were only plants. Two of the healers had home-gardens for cultivation and as source for some medicinal plants. All healers used both dry and fresh plants parts for preparation of remedies. Crushing, powdering and pounding were indicated by six of the healers as the methods of preparations of herbal drugs, while four of the healers only used squeezing. All healers stored medicinal plants in the form of powder or dried and cut into pieces within a closed container. The time of storage varied among the healers and depended on the type of traditional medicine. The doses of the medicine were measured using cup, spoon, glass, pinch, and lid of the container; it was determined by age of the patient, physical status of the patient, severity of the disease and the experience of individual healer. All healers had offices for their healing practice but none of them admitted and treated inpatients. Seven healers responded that they had additional persons working with them as assistant healers, their number ranged from 1 to 5. Healers received payment for their services that included registration fee and cost of medicine. The registration fee ranged from 2.00 birr to 20.00 birr though none of the traditional healers' have formal registration system for their patients. The cost of medicine was paid immediately after getting the treatment and showed variation from healer to healer as well on type of disease --- Referral, collaboration and feed back One of the healers responded that he had referred patients to modern health institution and to 'spiritual wholly water' treatment when the illness of the patient was beyond his professional capacity and skill. All interviewed healers did not get help from modern health professionals and did not initiate cooperation with modern health professionals. The reasons mentioned were lack of motivation to collaborate and communicate with modern health service workers and vice versa. The majority of the healers got feedback from their customers on areas such as the strength of their service, efficacy, fees of treatment and medicine. --- Discussion The number of individuals found in the traditional healers' clinics during data collection period and who responded those traditional healers' clinics as their first choices could indicate the contribution of traditional healers' clinics to the public health system. The number of repeated visits of these clinics by patients and number of individuals that gave information to the patients about traditional healers' clinics that might have previously visited traditional healers' clinics also demonstrated the significance of the traditional healers' clinics for the public health system in Addis Ababa. These showed that a considerable number of the population was treated by the traditional healers' clinics and hence, the contribution of these clinics to public health systems in Addis Ababa. The majority of patients in this study preferred traditional health care clinics than modern health facilities. Females, individuals with middle-income level and those with education visited traditional healers' clinics more frequently than the rest of informants. This is in agreement with the study done in Trinidad [19]. However, it is different from the studies conducted in California [20], Israel [21] and Colombia University [22] where females, those with higher education and high-income level had statistically significant association with traditional medicine use. In most studies, low income has been mentioned as the reason to visit traditional healers' clinics [9][10][11] whereas in this study it was not found as a determinant in visiting traditional healers' clinics since other categories were equally important, which was indicated by single sample t test distribution . Reasons indicated by patients that participated in the present study for using traditional medicine as their first choice when they were ill is similar to the study done in Trinidad [19] where efficacy of traditional medicine was the reason for choosing herbal medicine as the first line of health care option. This high efficacy perception may be because traditional medicine was embedded in the belief and culture of the society [9][10][11]. On the other hand, the study conducted in Addis Ababa to determine the epidemiology of herbal drug use [13] showed that the main reasons given for choosing herbal medicine as the first line medication option were dissatisfaction with the services of modern health institutions due to their time-consuming practice, cost and perceived efficacy. Study conducted in Nigeria [23] also agrees with the present study that high efficacy of traditional medicine and dissatisfaction with modern medicine were the reasons to visit traditional healers' clinics. The study conducted in the United States [24] to investigate possible predictors of alternative health care use indicated that those with higher education and poorer health status were associated with alternative medicine use. This is not in agreement with the current study, however level of education had a contribution in visiting traditional healers' clinics. A majority of patients, in this study, visiting traditional healers' clinics were associated with dermatological cases. Study conducted in Pakistan [25] showed that 43% of the patients preferred traditional healers for skin disorder treatment indicating that the effectiveness of the remedies given by traditional healers against dermatological diseases. The finding of this study that majority of patients were satisfied after being treated by traditional healers is corroborated by the study conducted in Zambia [26] and Tanzania [27]. The study conducted in Nigeria [23] indicated that 33.4% of the respondents reported that herbal medicines had no adverse effects though lower than the current study. The difference could be due to the variation in the dosage and the type of herbs used. The source of the healers' knowledge in this study is similar to the study conducted in Tanzania [27] where for 41.9% of the healers were their families. On the other hand most healers in Tanzania kept patient records containing demographic, diagnosis and treatment data whereas in the current study none of the healers kept patient records. The healers in the current study followed traditional treatment systems. Healers in Tanzania [27] agree in diagnosis of patients with this study though they also use laboratory test results made in the hospital in addition to history taking, physical diagnosis, and divination to identify diseases. In the current study, only one healer referred his patients to modern medicine but the study done in Tanzania showed that almost all healers referred their patients to hospitals when they failed with their own treatment. This difference may be because absence of collaboration and lack of training of traditional healers in Addis Ababa. --- Conclusion The study conducted showed that for the majority of patients interviewed traditional healers' clinics were one of the options to solve their health problems, which indicated the considerable contribution of these clinics to the public health care system in Addis Ababa. The main reasons for choosing traditional healers' clinics were efficacy, safety of the traditional medicines and affordability of the services provided by the healers' clinics. Nevertheless, in this study the contribution of traditional healers' clinics to the public health system would have been better shown if individuals who are not customers of the healers' clinics were included in the interview. However, the study might be useful as a base line data for future evaluation of the significance of traditional healers' clinics for public health system and the services rendered in the healers' clinics. --- --- Competing interests The authors declare that they have no competing interests.
Background: Ethiopian people have been using traditional medicine since time immemorial with 80% of its population dependent on traditional medicines. However, the documentation of traditional healers' clinics contribution to modern public health system in cosmopolitan cities is scanty. Studies conducted so far are limited and focused on the perceptions and practices of modern and traditional health practitioners about traditional medicine. Thus, a cross sectional study was conducted from February to May 2010 to assess the contribution of traditional healers' clinics to public health care system in Addis Ababa. Materials and methods: Ten traditional healers who were willing to participate in the study and 306 patients who were visiting these traditional healers' clinics were interviewed using two types of semi-structured questionnaires. Data were summarized using percentages, tables and bar chart.The diseases mostly treated by traditional healers were wound, inflammation, herpes zoster, hemorrhoids, fracture, paralysis, back-pain, liver diseases, cancer and eczema. This study showed that traditional healers' clinics considerably contribute to public health care in Addis Ababa. Fifty two percent of patients reported that traditional healers' clinics were their first choice when they faced health problems. The reasons for visiting these clinics were 175 (57.2%) efficacy, 109 (35.6%) dissatisfaction with modern medicine, 10 (3.3%) dissatisfaction with modern medicine and efficacy, 6 (2.0%) cost and 6 (2.0%) dissatisfaction and cost. Females (55.2%), young age (20-40 years, 65.0%), never married (56.9%), orthodox (73.9%), Amhara (52.3%), educational status above grade 12 (34.6%) and government employees (29.4%) were frequent visitors. Healers reported that there was no form of cooperation with modern health professionals. The reasons were lack of motivation to collaborate and communicate with modern health service workers. Family based apprenticeship was the sources of knowledge for majority of the healers.The study conducted showed that for the majority of patients interviewed traditional healers' clinics were one of the options to solve their health problems that indicated the considerable contribution of these clinics to the public health care system in Addis Ababa. Nevertheless, in this study the contribution of traditional healers' clinics to the public health system would have been better shown if individuals who are not users of the traditional healers' clinics were included in the interview. However, the study might be useful as a base line data for future evaluation of the significance of traditional healers' clinics for public health system and the services rendered in these clinics.
In most Western societies, the democratic state establishes and resources particular places that play a special role in meeting citizens' human needs. These placeswhich, like all places, are geographically-bounded locations invested with material resources and infused with meaning and values contribute to the functioning of societies and communities. For example, citizens can freely access places such as public emergency departments for medical care, public schools for education, public libraries and museums for information and culture, public law courts for justice, and public parks and community centers for recreation and community belonging. The open accessibility of these places is a hallmark of the values of the democratic state and its commitment to the welfare of its citizens . Several literatures are instructive in helping to understand the characteristics and functioning of these special places. From the perspective of humanistic geography and sociology, scholars have established the concept of place in a broad sense as a combination of geographic location, materiality, and meaning . Building on this literature, Carr et al. focused specifically on the importance of public places as those designed and built to provide universal accessibility for all citizens to essential human services. These authors propose that public places are thus where citizens go to make 'claims' for access to services . In contrast, the literature on institutional theory in organizational studies has so far engaged only minimally with the concept of place, primarily considering place as merely the research setting . However, since an institutional approach inherently draws attention to the role of institutions in bringing order, stability, and meaning to society , there are obvious synergies in combining aspects of institutional theory with the concept of place. Taken together, these theoretical perspectives lay out the importance of a special type of place whose functioning as an institution is integral to democratic society because it fulfils normative social purposes . However, these taken-forgranted places have not been explicitly identified or conceptualized in prior research. We label this institution as 'a place of social inclusion'. Building on the currently disparate approaches, and through our analysis of an empirical case, we develop the definition of a place of social inclusion as an institution invested by a society or a community with material resources, meaning, and values at geographic sites where citizens have the right to access services for specified human needs. In developing our concept of a place of social inclusion as an important institution of the democratic state, we focus attention on how the combination of place and institution produces precariousness. Early institutional scholars cautioned that the values of institutions are inherently precarious because their existence at the macro level of society depends on organizations and individuals reproducing them at the micro level in actions and interactions ). In considering a place of social inclusion as an institution, we draw on the place literature to suggest that the institution's precariousness is inherent in the local character of places and place claiming . By this we mean the societal-level value of providing universal accessibility to essential human services for all citizens is precarious because it must be continuously accomplished at the local level each time a citizen makes a claim for services from a specific geographically-bounded site in a neighborhood, town, or city. At the local level, the accessibility of any particular site that is a place of social inclusionfor example, a local emergency department or local public school may be impacted by factors such as population growth, income inequalities, natural disasters, and social ills like poverty, illiteracy, homelessness, and poor physical and mental health. Gun shootings occur in local schools, terrorists attack citizens in public open places, crime and violence assail neighborhoods, and pandemics and infectious diseases spread across national borders and within local communities as the recent outbreak of coronavirus shows. We posit that places of social inclusion are constituted as universally accessible institutions of the democratic state, yet the perpetuation of these institutions is consistently challenged by such ongoing threats. How, then, are places of social inclusion maintained? We investigate this research question through a longitudinal field study of the emergency department of a public hospital in an Australian city, which we argue is a compelling empirical example of a place of social inclusion. The Australian government establishes and resources public emergency departments in local places to provide all citizens with access to care and treatment for their acute health needs. By undertaking observations and interviews at our emergency department fieldsite, we were able to examine the everyday struggles involved in accomplishing the societal-level value of social inclusion through universal access to medical care at a local place. The precariousness of the emergency department as a place of social inclusion was cast into bold relief when our fieldwork was punctuated by the Ebola outbreak, offering a unique opportunity to explore and understand both the ordinary and extraordinary efforts needed to maintain places of social inclusion as important institutions in democratic society. Our study makes a significant contribution to the literature by shining light on these places as institutions. --- INSTITUTIONS AND PLACE Over the past few decades, geographers and sociologists have examined the human experience of place. Humanistic geographers conceive of places as geographic sites that become meaningful through people's social interactions and emotional attachments . Sociologists have also given attention to the concept of place, focusing on how insiders and outsiders shape the meaning and character of a place . These literatures point to specific placessuch as buildings, neighborhoods, cities, towns, and other public and private sitesas "centers of value and significance" . Researchers distinguish three essential elements of a place . First, a place is a geographic location, "a unique spot in the universe" distinct from neighboring places . Second, a place has physical form which includes natural and built resources, material objects, and organizing routines . Third, people invest a place with special meaning and value based on their relationship with its history and identity . A place comes into existence and endures when people "recognize themselves and others as part of a common enterprise with mutual meanings and experiences" . People's capacity to associate a place with a common enterprise and ascribe enduring meanings suggests that places are institutions. Scott defines institutions as comprising "regulative, normative and cultural-cognitive elements that, together with associated activities and resources, provide stability and meaning to social life." While institutional scholars have rarely postulated meaningful relationships between places and institutions , Scott's definition implies that a place should be conceptualized as an institution. A place is regulated by laws, rules, and codes of conduct that seek to control and order how people interact with and in that place. A place is supported normatively by values and beliefs that define what inhabitants should strive to attain and how. Finally, a place will evoke shared meanings and "a way of seeing, knowing and understanding the world" that is cognitively and affectively accepted by people who inhabit that place . Moreover, because institutions are multi-level systems, both a higher-order place like the world system and a local place like a county fair can be institutions . The world is "filled with significant places" that are institutions and which are intrinsic to the constitution and reproduction of social life . In this paper, we draw attention to the institution of a place of social inclusion. --- Places of Social Inclusion Building on the previous literature about place and aspects of institutional theory, we conceptualize a place of social inclusion as a distinctive type of institution commonly associated with the democratic state. This institution is instantiated in local geographic sites that are publicly accessible to citizens with specified human needs and are infused with meaning and values associated with normative social purpose. Established theory about public places focuses on the importance of being situated locally in neighborhoods, towns, cities, states, and nations . Because places are geographically bounded by their natural and physical location and the buildings and material objects assembled there , the physicality of the place impacts the way in which they are resourced to accomplish normative social purposes. Although previous literature on public places has not stressed the characteristic of social inclusiveness, to varying degrees it is inherent to discussions of public access to places such as emergency departments, public schools, libraries, recreational parks, welfare offices, community centers, and courts of law. Insights from the literature suggest the nature of human needs and the depth of association with, and accomplishment of, values of social inclusion involving equality, dignity, and human rights varies across different public places. Some places are explicitly created and maintained to accomplish social inclusion with regard to groups marginalized with respect to race, disability, or other characteristics . Other places fulfil a social purpose that is sometimes associated with universal access to basic human services . These studies regarding public places provide a foundation for considering how some particular places can be established and maintained as places of social inclusion. Combining the above ideas with concepts from institutional theory conceptualizing institutions as multi-level phenomena , we posit that a place of social inclusion is nested across societal and local levels. The societal level captures the regulative and cultural-cognitive elements of a place of social inclusion in the democratic state and the normative values it is expected to accomplish for citizens through meeting specified human needs. Depending on the precise nature of these needs, places of social inclusion are embedded in the state and also intersect with other higher-order institutions in society such as the medical, teaching, and legal professions. The local level reflects the specificity of the geographic places in which the institutional values of a place of social inclusion are accomplished. That is, human needs are met at local sitessuch as a local emergency department or a local public schoolthat are resourced by the state to actualize the institutional value of social inclusion. Since places at the local level are "forever precarious and contested" when they nest within societal-level systems , a place of social institution is an inherently precarious type of institution. --- Maintaining Places of Social Inclusion Two literature streams offer preliminary guidance on how places of social inclusion might be maintained. Geographers and sociologists pursue one stream, focusing on how people interact with a place . This literature posits a reciprocal relationship between people and place . Places are created, reproduced, and transformed by the human activities and social relations that transpire in a particular locale, as people experience and interpret the place's historically-contingent meanings, values, routines, and resources . Cognitions and emotions shape how people interact with each other and with the material aspects of place . This literature conceptualizes a person who visits a public place to access its material and symbolic resources as "making a claim" on the place . The staff of the public place must respond by "strik[ing] the right balance among various claims on its use and meaning" and ensuring "place claims are … being noticed and taken seriously" . However, the everyday cycle of claim-making and responding is not well understood . Researchers know little about the behavioral routines that maintain the rhythm of life of a place and how they shape people's experiences of material resources and their enduring sense of place . Other clues about how places of social inclusion might be maintained can be found in the literature on institutional work. Lawrence and Suddaby define the work of maintaining institutions as "supporting, repairing, or recreating the social mechanisms that ensure compliance." Implicit in most studies is an assumption that place is just the site where actors perform institutional work directed at other institutions. Researchers have highlighted how the Cambridge University Dining Hall and English County Cricket grounds offer settings where actors perform institutional work that produces institutions of social class. Nazi concentration camps have been viewed as settings where institutional work creating social oppression was undertaken . Institutional work maintaining professional occupations goes on in museums, law courts, restaurants, and hospitals through the everyday actions of curators , lawyers and advocates , chefs , and physicians and nurses . Place was not the focus in the aforementioned studies, but Lawrence and Dover recently drew attention to how place influences institutional work, showing how places serve as "social enclosures" that contain, "signifiers" that mediate, and "practical objects" that complicate institutional work. We draw inferences from the established literature to suggest three tentative insights into how the institutional work associated with maintaining a place of social inclusion might play out. The first insight concerns the institutional work of the actors who respond to claims on a place of social inclusion. Selznick argued that societal values are protected by institutional "guardians", characterized as professionals working inside formal organizations who are entrusted with institutional values and given autonomy to defend them from subversion by other goals. While some scholars have applied Selznick's concept of guardians , others have invoked Soares' term "custodian" to designate the caretakers of values, traditions, and institutionalized practices . For Soares , custodians are "practitioners who have a sense of community … [and] a sense of custodianship for the tradition's present and future prospects." Howard-Grenville and colleagues used the term "custodians" to label community members who "actively and tenaciously conserved and protected the [place] identity" of Track Town USA. Taken together, these studies suggest that places of social inclusion may be maintained by custodians. The second insight sheds light on the processes and emotions that might be involved in the institutional work of custodians. People are motivated to engage in maintenance work when they have cognitive and emotional investment in an institution . While the institutional literature on emotions is still underdeveloped, studies suggest that emotions like shame and fear of punishment discourage deviations from prescribed ways of thinking, acting, and feeling . Other studies show that moral emotionswhich the psychology literature links to the interests and welfare of society motivate reflective action to maintain, protect, and defend institutional values and practices . This emerging body of research suggests that custodians may be cognitively and affectively motivated to undertake maintenance work to protect the values of a place of social inclusion. The third insight concerns the intentionality of the work involved in maintaining a place of social inclusion. Actions associated with maintenance may not always be obvious because the custodians who inhabit institutions are engaged in the usual day-to-day affairs of their workplace . Maintenance work may be "nearly invisible and often mundane" when custodians support an institution by complying with regulations, enacting normative routines and performing rituals . Although these actions are institutionally conditioned, custodians are still able to engage in low-level intentional action by making small-scale incremental choices between sets of institutionalized practices and routines . However, breakdowns in institutionalized practices are inevitable; "active and intentional custodial work may be [necessary] for the continued stability of most institutions" . More intentional maintenance work involves self-conscious action and reflection by custodians , as well as deliberate efforts to resist change and to defend and repair an institution whose survival is threatened . In summary, we bring together insights from existing literature to conceptualize places of social inclusion as important institutions of normative social purpose established by the democratic state that have so far been largely ignored. Identifying and conceptualizing these places is critical because further study holds potential to advance theory about the connections between place and institutions. This is also important because the societal-level value of social inclusion is challenging to accomplish in publicly accessible and geographically bounded sites at the local level. Prior studies suggest that places of social inclusion may be maintained by custodians, and we need to know more about how such precarious institutions can survive. Seeking to develop a deeper understanding of how the work of custodians can maintain a place of social inclusion, we conducted a longitudinal qualitative study of the emergency department of a public hospital in Australia. --- METHODS --- Research Setting Emergency departments are compelling cases of places of social inclusion. In most Western countries including the United Kingdom, Canada, Australia, and New Zealand, the state funds EDs as "the accessible front door to the healthcare system" . In the United States, EDs are legally required under the Emergency Medical Treatment and Labor Act to evaluate and treat all persons needing emergency medical care regardless of their ability to pay; most Americans regard having a nearby ED as "equally or more important than having a nearby library, public health clinic, fire department, or police department" . Staffed 24 hours a day to provide urgent medical attention to people in need , citizens with acute illnesses or injuries go to these universally accessible sites to receive treatment from emergency physicians and nurses . We focused our investigation on an ED in Australia, where the state funds EDs based in public hospitals in metropolitan, regional, and rural locations. Signage of white lettering on a red background, recognizable to all Australians, denotes that a place has official status as an ED and is accessible free of charge. In 2015-2016, over 7.5 million patients visited EDs . --- Data Collection This study is part of an ongoing research project focusing on emergency physicians and nurses and their role in Australia's health care system. Data were collected at the ED of a large public hospital located in the inner city of a major metropolis. Each day, over 200 patients arrived at our ED fieldsite through large glass entry doors which were open 24 hours a day, or arrived by ambulance. Patients were assigned to a category on the Australasian Triage Scale and streamed by the triage nurse as follows: patients suffering imminently life and limb threatening conditionssuch as a heart attack, stroke, or major traumawere streamed to a "Resuscitation Zone" with advanced equipment and beds; patients with urgent, semi-urgent and non-urgent needs were streamed to an "Acute Zone" of examination bed cubicles with basic equipment; and patients whose condition could be treated rapidly and discharged, such as minor lacerations and fractures, were streamed to a "Fast Track Zone". About 80 percent of emergency patients were able to be treated and discharged, while the remaining 20 percent were judged to be sufficiently unwell to require hospital admission. We collected observational, interview, and archival data. Our primary data source was observational fieldnotes taken while shadowing emergency physicians and nurses as they assessed, diagnosed, treated, and discharged or referred patients within the Acute Zone, which was the focus for this study. The Acute Zone responded to the highest volume of patients and experienced the greatest difficulties with patient flow and overcrowding, suggesting that custodian work to maintain the ED as a place of social inclusion was particularly important in this zone. We collected a total of 210 hours of observational data over a six-month period, with observations recorded as handwritten fieldnotes and typed up after each shift. These observational data were supplemented with 47 interviews with senior emergency physicians who oversaw the everyday work of the ED. Of these interviews, 15 senior emergency physicians were interviewed twice and 17 were interviewed on a single occasion. Interviews were semi-structured, with questions designed to elicit accounts of the emergency physician's work as a custodian of the ED as a place of social inclusion. Interviews lasted between 60 and 90 minutes, and were digitally recorded and transcribed. We also interviewed nine residents who were undergoing specialty training in Emergency Medicine and 29 nurses about their experiences in the ED, with these interviews typically lasting 30 minutes. Four additional interviews, lasting between 60 and 90 minutes, were conducted with hospital executives, and we attended a number of staff meetings, training sessions, and strategic planning days. Archival documents, many of which were publicly available, provided background information on the organizational and professional context. During our data collection, the outbreak of the Ebola virus in West Africa created a sudden jolt . In August 2014, the World Health Organization declared a "public health emergency of international concern". WHO estimated a possible 20,000 cases from the Ebola outbreak and a mortality rate of 70 percent. Around 10 percent of the cases and fatalities were healthcare aid workers. The first cases of Ebola transmission outside of Africa occurred in October 2014, when nurses in Spain and the USA tested positive for Ebola after treating travelers who had contracted the virus in Africa. During the epidemic, the Australian government designated our fieldsite hospital as one of Australia's Ebola Response and Treatment hospitals. Although the ED never treated a confirmed case of Ebola, staff undertook preparations as the state's frontline responders and dealt with several persons suspected of being infected with Ebola. We included probing questions about Ebola in our interviews, engaged in informal conversations and debriefs during observations, and collected archival documents, including WHO updates, government reports, and media releases. --- Data Analysis Data analysis followed established procedures for inductive theory building from qualitative data . We used NVivo 9 and Excel software to assist with coding. Our initial focus was the observational fieldnotes, which captured in real time the day-to-day activities of doctors and nurses responding to persons who presented to the ED. Consistent with the place literature , we conceptualized each presentation as a "claim" made on the "place-specific resources" of the fieldsite ED and viewed doctors and nurses as the "custodians" tasked with allocating resources to satisfy claims. As we read our fieldnotes, we were struck by the consistent responses of doctors and nurses regarding their responsibility to ensure the ED remained accessible to all citizens. As part of their approach to providing services, we noticed that as they evaluated cues about each claim, doctors and nurses experienced different levels of tension between the ED being an inclusive place for everyone, and having sufficient resources at the local place to respond adequately to all claims. 1We observed that doctors and nurses served as custodians of resources through two types of work when responding to a claim. The first type was activated when doctors and nurses experienced a low level of tension between inclusion and resources and interpreted the basis for a person's claim as an immediate or recurrent health need. Here, we noticed that doctors and nurses tended to feel emotions of low intensity. After consulting the literature , we categorized these feelings as moral emotions because they expressed a desire to "do the right thing" for the patient and for society when allocating resources to the claim. We labeled this custodianship as resource-rationing work. The second type of custodian work was activated when there was a high level of tension between social inclusion and finite resources. Here, we noticed that moral emotions were more intense. Custodians felt deep compassion for patients and families, and prioritized the highest societal-level ideals of a place of social inclusion. They responded by providing extraordinary access to resources, which we labelled as resource-enabling work. From this first analytical cycle, we speculated that ordinary resource-rationing work and extraordinary resource-enabling work represent micro-processes of custodianship that resolve the inclusionresource tension, thereby maintaining the ED as a place of social inclusion. To probe our hunch, we turned next to the interview data. Reading the different transcripts, we noted that doctors and nurses described processes similar to those we observed in the real-time fieldnotes. As we reviewed the interviews, we noticed how doctors and nurses portrayed their experience of, and response to, the inclusion-resource tension as relating to the level of the claim while also recognizing that pressure on resources built up at the level of the ED as a local place. This was most evident in comments about responding to claims during busy shifts and working hard to avoid "going on bypass". State regulations permit Australian emergency departments experiencing extreme resource pressures to declare a "bypass" situation, temporarily closing the hospital to new patients arriving via ambulance. Our fieldnotes contained one instance where our fieldsite ED declared a bypass. This suggested the ED could be disrupted as a local place of social inclusion when custodians' efforts to respond to claims through resource-rationing and resource-enabling work failed. Yet custodianship associated with the resource-inclusion tension only partly explained our data. The jolt from the Ebola crisis gave us the opportunity to investigate a second tension that arises when safety of the local place conflicts with social inclusion. We were struck by the anomaly that while potential Ebola claims evoked unmistakable fear among custodians, other potentially harmful claims did not. Interviewees described how they were "used to" dealing with physical harm from persons who were behaving violently and with the infection risk of "well-known" transmissible diseases. Consulting the literature for guidance, we speculated that Ebola confronted custodians with a decision situation reminiscent of "Knightian uncertainty" , whereas claims associated with other threats of harm presented decision situations involving "risk" . The literature also offered guidance on the differences between feara basic emotion that is immediately felt and triggers individual self-defense responses and the higher-order and more reflective moral emotions that we had noticed custodians experiencing towards the resource-inclusion tension. We sensed that being able to manage fear by mitigating risk was fundamental to custodian work that maintained the ED as a place of social inclusion in the face of the inclusion-safety tension. Armed with these distinctions, we returned to our data for a second cycle of more refined coding. Our initial interest lay in elaborating custodian work for claims involving the inclusion-resource tension. Reviewing our fieldnotes and applying Trefalt's ) method of viewing every claim as an "episode" that constituted a unit for data analysis, we extracted 336 episodes where doctors and nurses grappled with finite resources and no tension with safety was apparent. Two authors independently coded two hundred of these data episodes according to the level of tension between inclusion and resources , basis of claim , moral emotions , and resource allocation . Inter-rater agreement was high, and disagreements were resolved through discussion and clarification of the coding scheme. One author coded the remaining fieldnote episodes. When completed, custodianship took the form of resource-rationing work in 336 episodes and resource-enabling work in 20 episodes. To verify whether these same processes were evident in the doctors' and nurses' accounts of their own lived experience, we revisited the interview data. We extracted text segments in which interviewees provided examples of specific instances of claims made by a particular patient and more general descriptions of ED responses to common types of claims, producing 159 interview episodes. Coding classified custodianship as resource-rationing work in 108 episodes and as resource-enabling work in 51 interview episodes. While this coding focused on the level of the claim, we also coded one instance in the fieldnotes of the ED declaring ambulance bypass. In our view, this was an episode of custodianship in response to extreme inclusionresource tension at the level of the local place, which was supported by interview data. We present a summary of the coding frequencies of episodes involving the inclusion-resource tension in Table 1. Representative data are presented in Tables 2 and3. - -------------------------------------------INSERT TABLE 1, 2 and3 HERE - -------------------------------------------Having completed our coding of how the ED was maintained by custodian work directed at the inclusion-resource tension, we shifted our attention to the inclusion-safety tension. Our initial focus was on claims that posed a threat of harm where there was a low level of tension. We conceptualized these as "known-risk claims". From our fieldnotes, we extracted 51 episodes of known-risk claims involving violence and 18 episodes involving a familiar infectious disease. From our interviews, we extracted a further 30 episodes of violent claims and 24 episodes of infectious claims. As we assembled this dataset, we became sensitized to custodian's confidence in risk mitigation as a means of managing fear. We labelled this custodianship as harm-mitigation work. Coding indicated custodianship through harm-mitigation for known risks ultimately ended in resource rationing in 118 episodes and in resource enabling in 5 episodes. Table 4 shows examples of our coding. - -------------------------------------------INSERT TABLE 4 HERE - -------------------------------------------At this point in our data analysis, we began to conceptualize harm-mitigation for known risks as an ordinary microprocess of custodian work that maintains the local place of social inclusion. The Ebola virus made visible an extraordinary form of custodianship when custodians experienced "unknown risk" claims. We assembled a data set by extracting all text related to Ebola in our fieldnotes and interviews and gathering the secondary documents we had collected. We compared within and across these different sources of data to discern how Ebola disrupted the ED. Our coding indicated that Ebola aroused uncontrollable fear and triggered contests over whether Ebola should be considered a normal risk or a special risk for which harm must be avoided. A key mechanism in resolving these contests and bringing fear under control was custodian's moral emotions. Table 5 presents examples of our coding. - -------------------------------------------INSERT TABLE 5 HERE - -------------------------------------------In the final stage, we developed a process model that theorizes how a place of social inclusion is maintained by custodianship that connects the levels of societal institution and local place in responding to claims and managing value tensions. The robustness of our model was increased by triangulating across multiple data sources, using dialogue and debate in research team meetings to arrive at the most credible interpretations, and debriefing with fieldsite participants to verify interpretations in the context of their experience . We now present the findings that emerged from our analysis in more detail2 . --- FINDINGS Our data analysis shows that the public hospital emergency department we studied can be considered as a place of social inclusion across nested levels of societal institution and local place. At the level of society, the Australian government resources and regulates public hospital EDs to provide universally accessible medical care to all citizens with acute needs. As one doctor put it, 'the public hospital ED is the ultimate environment … [where] it's a privilege to provide a service to everybody' . In contrast to the pay-forservice ED in private hospitals, the public ED is a place of social inclusion where 'everyone is equal' and 'everybody deserves the same sort of entitlements and rights as everybody else' . For Australian people in marginalized and vulnerable groupssuch as the homeless, mentally ill, drug or alcohol addicted, and socially disadvantagedthe public ED is often 'the one place where these guys can get looked after' . Public EDs in Australia 'are the safety net for vulnerable people … whatever's going on [in society] we become that place' . At the same time, there is broad recognition that public EDs provide care that is not only socially inclusive but of high quality. A hospital executive at our fieldsite ED said, 'if I was really sick I would like to be in here, which is always the test!' . Our findings suggest that the institution of a place of social inclusion is actualized at the local level in geographically-specific EDs located in towns and cities across Australia. The societal value of universally accessible health care for all Australians inheres in our fieldsite ED as a local place where any citizen with acute health needs can present to make claims. As a local place of social inclusion, the ED is expected to be 'the saving place for so many people who come [here to make claims] for all sorts of reasons' . Yet the data indicate that the combination of societal institution and local place has consequences that make this accomplishment difficult. The ED is geographically and materially bounded because the government has assembled a finite stock of resourcesstaffing, beds, equipment, diagnostic technologies, and other suppliesat the local place to respond to citizens' claims. This creates a tension between the institutional value of inclusion and local resources. A nurse described this value tension: 'Everyone is entitled to health care but you've only got this much resource and you've got this [gestures with hands to indicate volume of people presenting to the local ED], how do you match them?' . A second value tension concerns local safety. At the societal level, the ED as a place of social inclusion 'should at least be a safe place to come' . However, our data show that translating this value at the local level into 'an open door policy to members of the public' exposes the fieldsite ED to risks of harm arising from infectious diseases and acts of violence. These value tensions render EDs precarious as places of social inclusion because the societal value of universally accessible health care can only be realized by consistent actions of inclusion at the geographically specific ED. Our analysis shows doctors and nurses tried to protect this institutional value through ongoing local-level custodian work. Because doctors and nurses believed 'the basic ethos of trying to provide equal health care for all is something we should fight for' , they invested effort in custodian work to resolve value tensions and maintain the ED as a place of social inclusion on top of their normal work as organizational employees and members of the medical and nursing professions. Our findings indicate that custodianship directed at value tensions is "extra" work performed over and above the professional work that characterizes an ED more narrowly as a place of medicine. --- Local Resources and Maintaining the Place of Social Inclusion Persons who presented to our fieldsite ED were exercising their societal-level right to make a claim for access to the staff, beds, and other material resources at this local place of social inclusion. To insure social inclusion, custodians should 'never say no … never refuse treatment' . Yet responding to all claims at the highest level of service would quickly exhaust finite resources, leaving claims unmet and rendering the ED unable to fulfil its social purpose. We found that doctors and nurses engaged in two processes of custodianship to manage this inclusion-resource tension: resource-rationing work and resource-enabling work. Resource Rationing. Doctors and nurses most commonly responded to claims by rationing the ED's finite resources. As custodians, they were 'constantly thinking about whether the patient needs these resources' and mulling over 'here are our competing demands -how do we organize our resources?' . They sought to assess claims efficiently and 'activate the resources that are needed' being 'very judicious in that use' , as this example shows: Person P presents to ED. Triage nurse asks, 'What brings you here today?' P describes vomiting and abdominal pain. P is assigned a bed. Nurse N inserts a drip and takes blood samples. Senior doctor, Dr S, notices that P 'looks pretty sick', examines P and prescribes anti-nausea medication. N offers comforting words and Dr S orders a CT scan to check for an obstruction. A radiologist suggests using a contrast dye with the CT scan but this means P will need a bed for longer and Dr S is not convinced the dye is medically warranted. After the scan, Dr S moves P to the ED's short stay unit for 24 hours with a plan that if the vomiting and pain settle down, P will be discharged and given a follow-up appointment with a hospital outpatient clinic. If symptoms persist, P will be reviewed by surgeons for an operation. This example illustrates how custodian work occurs through resource rationing. The doctor and nurse evaluate the basis for the claim as an immediate health need. Perceiving that the ED has adequate resources to resolve this need, they experience low tension between the institutional value of social inclusion and the local ED's finite resources. They allocate appropriate, but not excessive, resources and emotional energy to meet the need underlying the claim , which maximizes the ED's ability to respond to other claims. Had this been a pay-for-service private ED rather than a place of social inclusion, the doctor would not have had to think about how 'ordering a CT scan may delay another CT scan for another patient -you have a different [responsibility]' . A doctor who worked in both the fieldsite ED and a private ED explained: 'I will make different decisions on what I do in the public sector and private sector because I know there is different access and availability in the … resources' . Table 2 presents examples of these microprocesses in which custodians apprehend a claim as an immediate or recurrent health need, experience low tension between social inclusion and finite resources, and meet the need by rationing resources. Examples of claims for immediate needs include new symptoms that a person is experiencing such as back pain, acute exacerbations of pre-existing conditions such as diabetes, and diagnostic puzzles such as multiple sclerosis. Claims for recurrent needs involved the repetition of a past illness or behavior, such as unchanged chronic illness or frequent attendance for non-emergency claims. Doctors and nurses responded to claims for recurrent needs by allocating 'the bare minimum' resources because they were 'obliged to sort out [the claim] enough to allow the patient to go home in some sort of safe and dignified manner' . When a patient's needs can be adequately met with the usual attention to rationing resources, custodian work involves moral emotions of low intensity because custodians 'feel comfortable about how they can deliver care within those constraints' . Our data suggest that resource rationing balances the inclusion-resource tension in a way that upholds the institutional value of social inclusion at the local place by allowing custodians 'to try and treat as many people as possible as well as possible' . According to our informants who have comparable experiences of working in pay-for-service EDs in private hospitals and in other departments in public hospitals, this process of resource rationing is distinctive to their custodian role at the fieldsite ED. Participants reflected that resource-rationing work is 'a different reality' for medical and nursing professionals employed in a public ED because no other place of medicine in Australia has responsibility for accomplishing the value of universal accessibility to medical care. That is, Australian citizens 'know that the emergency department never shuts and know that the ED is never going to turn us away' . EDs in private hospitals, which are 'essentially business' , do not have this responsibility. Nor do other departments in public hospitals because they are not 'the initial point of contact for people coming from outside' . When working in those departments, participants said 'you're not thinking about the limited resource' in the same way as in the ED. With 'totally different flow, totally different drivers, totally different demands' than other places of medicine, resource-rationing work to balance the inclusion-resource tension is distinctive to a public ED as a local place of social inclusion. Resource Enabling. Our analysis revealed that not all claims on the ED's finite resources could be addressed adequately by custodians performing resource-rationing work. Sometimes custodians made judgments that a claimant's needs extended beyond an immediate or recurrent health problem to future-oriented needs in which vulnerable people presented to the ED seeking support to change their life circumstances. When responding to these claims as custodians, doctors and nurses experienced a high level of tension between the institutional value of social inclusion and the ED's finite resources as a local place: 'The ED is an opportunistic place for some of this stuff to happen … around social disadvantage but it takes a lot of health resource to do that' . A doctor described the tension over resource allocation when responding to a future-oriented claim: 'All of us have got this feeling of social justice but that's the problem with this sort of stuffeverything else just ground to a halt because I couldn't do everything for this one patient and all the rest in the ED but that's what it takes.' . Responses to claims that custodians judged as being made by persons who were especially 'vulnerable went above and beyond normal [allocations]' from the ED's finite supply, creating heightened value tension: Elderly person presents with back pain. Questioning by a senior doctor reveals P has had multiple car accidents and has advancing dementia. A team of six people -Dr S, a junior doctor, social workers, and community servicesspend the entire day organizing a hospital admission, home support, and removal of driver's license. For the two ED doctors, the intervention to keep 'the most extraordinary complicated social circumstance from advancing to complete disaster' dominates everything else going on in the ED, where other doctors and nurses work as best they can to cover for their absence. Dr S, who stays to resolve some issues for an extra two hours after the end of shift, describes how P's family 'went home just sobbing because someone had made an effort to try and sort it out'. Emphasizing 'the emergency department was a great site for it to happen', Dr S adds, 'But it took a huge amount of work. That's a lot of health resource'. Dr S tells the junior doctor, 'That's probably the greatest intervention you'll achieve as a junior in an emergency department. Much more so than fixing a broken arm. … This is far more important to have achieved'. This example illustrates the microprocesses through which custodians reconcile a high level of tension between the institutional value of social inclusion and local resources. The senior doctor judged the basis for the person's claim as a need involving social justice and human welfare. This need aroused intense moral emotions, with the doctor deeply concerned for the patient and family and motivated to activate extraordinary resources to accomplish the highest values of the ED as a place of social inclusion. Rather than the ED's finite supply of resources constraining the claim response, the doctor instead enacted his role as custodian by interpreting local resources as enablers of a more enduring intervention for the family's welfare. Table 3 presents other examples of custodians evaluating claims as human needs that exceed ordinary resource allocations, experiencing high tension between inclusion and resources, feeling intense moral emotions, and activating resources as enablers. Examples include claims by victims of domestic violence and by other vulnerable people judged to be in crisis and in need of 'community services to help support them' . Claims can also trigger resource-enabling responses when custodians judge a person with an addiction as sincerely wanting help to 'change in their trajectory' . Finally, claims for end-of-life care prompt resource enabling when the ED provides extraordinary resources to honor human dignity at the end of life. For custodians, the human needs underpinning these types of claims arouse intense moral emotions of empathic concern: 'If you're not upset by grief … or a tragic story, you need to go and get another job' . Some claims aroused moral emotions of such intensity that 'there are ones that will live with me forever' . Our data suggest that these processes of resource-enabling work are distinctive to custodianship of public EDs. Reflecting on their experiences being employed in both public and private EDs, several research participants explained that there is no 'naïve separation' between acute medicine and social disadvantage when they work in the fieldsite ED compared to a private ED. Some participants asserted that other specialist departments in the public hospital could also separate social disadvantage from medicine to some extent because the ED provided a buffer as 'the first port of call' between community and hospital. Resource-enabling work allowed custodians to uphold the highest ideals of a public ED as a place of social inclusion for the most needy citizens: 'rightly, the community should expect more from us' . While it was easier for custodians to allocate more resources to these types of claims when the ED was not overloaded, custodians tried to keep focused on 'making the right decision [about the person's resource needs] each time … even if the place is heaving' . As our field observations demonstrate, if resource-enabling work is 'the best we can do [for a person's needs], we run around like crazy trying to achieve that' . Place Disruption. The data show that custodianship through resource-rationing work and resource-enabling work maintained the fieldsite ED as a local place of social inclusion in two important ways. First, these forms of custodianship resolved the inclusion-resource tension at the level of individual claims so that local custodians could respond appropriately to a person's health needs. Second, they managed the inclusion-resource tension at the local place by ensuring that the ED remained open. Since 'the reality is we don't really have a lot of control about who comes through or how many people come through the front doors' , there is potential for the volume of claims to completely overwhelm the ED resources available at the local place. If this reaches 'a crisis point', state regulation and associated processes permit a local public hospital to 'deem that their ED is full and unsafe and they will redirect ambulances to other hospitals … [to allow] time to just decant patients' . While ambulance bypass safeguards the institution of the public ED as a place of social inclusion at the societal level, it means the ED as a local place is temporarily closed to citizen's claims. Our observations contained only one example of the fieldsite ED declaring bypass, along with numerous examples of busy shifts where doctors and nurses said 'it was a badge of honor' that they had worked hard to avoid bypass . Hospital managers also told us that custodians in the ED 'don't want to go on bypass, they want to manage it' . According to our data, doctors and nurses at our ED perceived ambulance bypass as a disruption of the local place of social inclusion. In their eyes, by closing off the local place from its 'value relationship with the community' , bypass disrupted the meaning of the ED as a universally accessible place for people with acute health needs. To protect this value, doctors and nurses took pride as custodians in using resource-rationing work and resourceenabling work to avoid bypass whenever possible to keep the fieldsite ED open: Bypass -that's the thing we work hard not to do. I guess sometimes when it does happen … you do feel a little angry [and disappointed that] … clearly you aren't able to provide the service that an Emergency Department is supposed to be able to provide to its patient catchment. … Bypass isn't something that we do very often. You just keep beavering away. Our hospital very rarely does that. Almost never. Our doors are always open. It's like a pride thing. We can handle anything. --- Safety and Maintaining the Place of Social Inclusion In their role as custodians of the ED as a place of social inclusion, doctors and nurses confronted a second source of precariousness. This arose from tension between the societal value of social inclusion achieved through universal accessibility for all citizens and the safety of the local place. At the societal level the public ED is intended to be 'a place of safety', but at the local level being open to everyone in the community means the 'ED is always a great entry point … for risk' . Our participants pointed out that in comparison to private fee-for-service EDs, public EDs had responsibilities for a wider 'spectrum of humanity … [so] there's a significant risk' . At our fieldsite, tension between inclusion and local safety arose when a person making a claim posed a threat of harm to custodians and citizens. Our analyses found that doctors and nurses engaged in two processes of custodian work to manage this inclusion-safety tension: harm-mitigation and harm-avoidance. Harm Mitigation. Our data show that certain people who made claims for access to health care at our fieldsite ED posed known risks of harm to staff and other patients. Doctors and nurses classified the threat of harm as a known risk based on: their familiarity with the threat, and their confidence that the risk of harm could be mitigated. The most common known risk was violence. Persons making claims could act violently due to physiological , psychological , toxicological , or behavioral causes. Doctors and nurses evaluated violent patients as a familiar threat because 'we deal with it on such a regular basis' and 'have a system that we're confident to deal with them' . Risk mitigation mechanisms included security guards, verbal de-escalation, security cameras, and patient isolation and sedation. Because violence was a known risk, doctors and nurses reported being able to manage their fear of harm to the extent that they could respond inclusively to claims. Our fieldnotes show, for example, nurses being shaken up after being verbally abused by a patient but continuing to administer care, and doctors examining angry drunk people even though 'they look ready to take a swing at me' [fieldnotes]. Another threat of harm that custodians classified as a known risk was associated with infection. Persons with blood-borne viruses and diseases transmitted via droplets and/or airborne routes posed the highest risk of infection for doctors and nurses. Custodians classified infectious diseases that had a wellunderstood and familiar disease process as known risks. For example, doctors and nurses 'understand the flu a bit more and have had experience with it' , occasionally treat cases of measles and tuberculosis , and 'could get a needle stick every day from a HIV patient or a Hep-C patient … we've got used to those risks' . Familiar infectious diseases had evidence-based risk mitigation proceduressuch as infection control precautions, personal protective equipment, warning signs, quarantines, and staff immunizationthat doctors and nurses trusted. Since they 'knew how to deal with infectious diseases that came to the front door' , custodians could resolve the inclusion-safety tension when responding to claims: If these patients come here seeking help, you see them and you assess them properly [while mitigating the known risk of harm] and then you make sure that they're okay and you activate the resources needed for them. … I'm nervous about it when you walk in to see someone who's angry and snarling and spitting, where you've got a much greater risk of actually getting a transmissible disease. But you do what you have to do. … Are you going to refuse to see them because your chance of getting harmed is much higher? Of course not. As the example above illustrates, when doctors and nurses classify a person making a claim as a known risk, they perceive tension between the safety of the local place and social inclusion. Despite feeling 'slightly excited and scared about what's coming up' , they are able to manage their fear sufficiently to perform their role as custodians by mitigating risk and then activating resources to meet the human need underlying the claim. The above example also illuminates how managing fear is bolstered by custodians' moral emotions related to a sense of concern for doing the 'right thing' to meet the needs of the patient and society more broadly. A nurse, who had recently been cut with a knife when responding to a claim by a suicidal patient, explained: 'My Achilles heel in those situations is trying to help the patient, so I'll put myself in a bit more danger' . In one compelling example from our fieldnotes, we observed an elderly dementia patient punch a nurse in the face, sparking fear among the ED team responding to the claim and triggering a self-protective instinct to withdraw access. Nurses implored, 'Can't we just send him back to the nursing home tonight?' Our fieldnotes show that moral emotions associated with not wanting to violate their custodian responsibilities to the community and empathy for the patient helped subdue fear. The treating team resolved the inclusion-safety tension by mitigating the known risk through sedation, which allowed them to safely keep the patient in the ED over night until specialist services could provide support the next day. Table 4 presents other examples in which custodians classify a claim as a known risk, experience low inclusion-safety tension and manageable fear, and are motivated to take action by mitigating the harm and then rationing or enabling resources to meet the person's need. Harm-mitigation maintains the ED as a place of social inclusion by keeping the local place safely and universally accessible to citizens. Harm Avoidance. Custodianship through harm-mitigation for claims that posed known risks, combined with resource-rationing work and resource-enabling work, usually maintained the fieldsite ED as a place of social inclusion at the local level. However, our data related to Ebola reveal that custodianship can break down when claims carry unknown risks of harm, amplifying tension between the value of social inclusion and safety of the local place. After the World Health Organization warned of the threat of a pandemic through international travel of persons who had lived in or visited Ebola-infected regions, the public hospital where we collected our data was designated by government as one of Australia's 'Ebola response and treatment hospitals'. Thus, our fieldsite ED became the local place that public health authorities, who monitored arrivals from West Africa and imposed home quarantines, would send suspected cases of Ebola for assessment. The ED was also the designated local place where other unwell persons who may have come in contact with Ebola through travel or contact with travellers could present for assessment. --- Government authorization of claims on the local place by persons potentially suffering from Ebola carried an unknown risk of harm for doctors and nurses as custodians of our fieldsite ED. The threat was unfamiliar because Ebola was 'a new exotic disease' and there was insufficient 'experience of it in a Western context to even know what the risk is' . Infection controls were unproven. Pointing to incidents of healthcare workers becoming infected, doctors and nurses saw Ebola as 'extremely contagious' and 'an illness that targets us so there is that perceived threat' . This undercut confidence that risk could be mitigated: 'I don't know that we're confident in our systems with Ebola' . The unknown risk of potential Ebola claims aroused far more intense fear than doctors and nurses customarily experienced in their everyday work: 'There's obviously things unknown about it [Ebola] so there is a fear factor and rightly so' . In our fieldnotes and interviews, custodians described their emotions in anticipation of persons making claims for health needs associated with Ebola as 'fear', 'angst', 'being scared', 'raw emotions', 'terrifying', and 'anxiety'. Nurses noted 'they call it the carer's disease' and said 'it's very scary for me as a nurse' to be at risk from an infectious patient . The fieldnotes capture how doctors and nurses struggled to control the fear aroused by Ebola as an unknown risk: World Health authorities have just announced that a second nurse has become infected while caring for an Ebola patient in a US hospital. In the ED's central work area, doctors and nurses are alarmed that hospitals in the first-world could not prevent Ebola transmission to healthcare workers wearing Personal Protective Equipment and following protocols recommended by the Centers for Disease Control. 'So how did they get sick if they were wearing the correct PPE?' 'Do we really understand how Ebola is transmitted?' Throughout the shift, doctors anxiously check for updates and review the ED's stocks of protective clothing, concerned about its effectiveness. In a follow-up interview, a doctor justified their fears, 'Suddenly two nurses actually catch it in America and then the staff suddenly can see we've got a right to be scared' . Fearful doctors and nurses sought information to assess the 'real risk' of harm from Ebola claims. Information was accessible through mass media coverage and social media networks among emergency physicians . WHO and United States Centers for Disease Control and Prevention disseminated information, and government policymakers in Australia and hospital executives sent out communications and updates. These state-endorsed sources offered scientific data and projections on Ebola and reported on infection control and border protection protocols. Conversations about Ebola 'bubbled' among doctors and nurses: 'You couldn't go anywhere without hearing the word Ebola when you're in the tea room or the corridor. It was just an Ebola fest' . Over time, evaluations of the harm posed by Ebola fragmented among doctors and nurses as custodians of the local place into two risk categories. The first category evaluated Ebola claims as a special risk. While acknowledging that Australia's border protection protocols would likely prevent a person in the highly infectious 'wet stage' of the virus from reaching the local place, doctors and nurses in this category noticed cues from multiple information streams that two nurses in the United States had become infected and bracketed these cues as important. A doctor explained, 'If those two nurses hadn't caught it, I think [the perceived risk of Ebola] would be totally different' . These cues focused sensemaking attention on differences between Ebola and more familiar threats. Ebola's high transmission risk, incurability, and high mortality rate were interpreted as a different sort of risk from that posed by violence and other infectious diseases. Ascribing significance to these differences produced the evaluation that claims by persons with Ebola represented a 'special' risk. The second risk category evaluated Ebola claims as a normal risk. These ED staff noticed cues from state-endorsed sources that controlled 'the hysteria of Ebola is coming to kill us all' . These cues drew attention to contextual differences between Australia, a first-world nation with protected borders and advanced health systems and infection controls, and West Africa, a third-world region with tribal practices and environmental conditions that accelerated Ebola transmission and mortality. A nurse explained, 'The government [here] has put out precautions and assessed it and worked it out, and obviously you've just got to trust in them that that is going to contain it' . By contextualizing Ebola, these custodians became 'more calm' and less 'caught up in the emotion of it all' . Sensemaking concentrated on similarities between Ebola and known risks , and 'it became pretty obvious that this [situation] was nothing other than normal' and nothing special to be 'worried about' . Claims for Ebola were categorized as a normal risk, equivalent to violence and other infectious diseases already accepted in custodian work: The chance of you being killed or assaulted [by a violent patient] is much higher than if you walk into a controlled environment with full protective gear on. Nothing is going to be transmitted. Fragmented risk categories created contests among custodians about inclusive custodianship for potential Ebola claims. Categorizing Ebola as a normal risk justified maintaining ordinary custodianship through harm-mitigation. A doctor argued, 'Why do we make a special thing for Ebola patients? I don't understand it.' . If the 'real' risk of infection was negligible, all staff could be trained to a level of proficiency to engage safely with Ebola claims: 'this should be no different for us treating someone with a febrile neutropenia [fever with signs of infection]' . In contrast, categorizing Ebola as a special risk problematized custodianship and justified custodians avoiding harm by not responding to a claim. If Ebola is an exceptional risk, then 'we've got to respond in a special way' and respect that 'some people have a view they don't want to be involved at all' . Wanting to opt out of responding to Ebola claims, some custodians proposed covering extra shifts in the ED' while a small group of doctors and nurses self-selected to be 'intensively trained and regularly practicing as Ebola rapid responders' . Place Disruption. Our data show the contest between the normal risk/harmmitigation and special risk/harm-avoidance approaches to custodianship for potential Ebola claims disrupted the taken-for-grantedness of the fieldsite ED as a local place of social inclusion. With some doctors and nurses advocating withdrawing their normal custodian responsibilities for universal access, custodians of the local place were no longer fully embodying the values that defined the institution of a public ED at the societal level: 'in ED, we don't get to pick and choose our patients' . For custodians, the taken-for-grantedness of the fieldsite ED as a universally accessible place for people with acute health needs, as well their own identity as the local protectors of that institutional value, was disrupted. Articulating this disruption, a doctor said, 'There's that real challenge to the way we've always seen ourselves in ED as we'll see anyone, we'll help you, we'll heal you' . Our data show that during the disruption of the local place, some doctors and nurses felt embarrassed that custodians were not living up to the role expectations that society had entrusted to them. A doctor explained, 'Hysterical responses to Ebola were a little embarrassing … [because] my identity as an emergency physician in a public ED is that if someone needs care then you give them care -you don't pick and choose who you see' . Others noted that it was 'disappointing' and 'embarrassing … for people to say we're not here for this. Aren't we? I'm pretty sure we are' . Individuals contemplating the violation of their custodian responsibilities by not responding universally to Ebola claims wrestled with both fear and self-conscious moral emotions like shame: I don't even know if I'd be walking in there [to treat a person who might have Ebola] but by the same token that's not the way we're built in the public ED. We can't say, 'Come here if you're sick and we'll see you and we'll sort you out unless you've got Ebola'. … And I think that's what's caused that real level of angst and it's challenged the way you perceive yourself [as a custodian] much more so than anything else. These emotional contests over custodianship of Ebola claims came to a head at a meeting of senior ED doctors, hospital executive, and the Infectious Diseases Department. The ED director organized the meeting to 'let people vent their spleen' about how the local place should respond to Ebola claims in a facilitated forum . ED doctors used the meeting as a 'useful tool … for having those fierce conversations' about their differing views of Ebola risk and custodianship. The meeting was emotionally charged. Doctors expressed 'forcefulness of opinions … that showed how diverse views are' . Our analysis reveals that the robust debates in this meeting, which were continued in follow-up meetings among emergency staff, aided recovery from the disruption by clarifying the constitutive meaning of the public ED as a place of social inclusion. These debates 'really crystallized' for custodians two constitutive elements that connected the societal institution of the public ED with the local place. First, the ED as a place of social inclusion was constituted by the salient attributes of persons making claims. If a person was acutely sick and undiagnosed with an illness, 'then absolutely the ED's the right place for them' . Second, the ED's societal-level meaning as a place of social inclusion was constituted by local responses to claims that upheld 'the general principles of people having equal access' . Custodians agreed 'the role of a public ED … is to treat everyone exactly the same' . Thus, when someone who may be symptomatic with Ebola 'walks in off the street' , custodians of the fieldsite ED as a local place must uphold universal access. --- Summary: Process Model of Maintaining Places of Social Inclusion The theoretical model we developed from our findings is presented in Figure 1. The combination of place and institution creates a nesting of geographically specific places of social inclusion at the local level within the institutional level where these places are regulated, valued, and given meaning in society more broadly. The democratic state establishes and resources places of social inclusion as institutions to meet citizens' needs for universal access to essential human services. Our model shows how the institution of a place of social inclusion can be maintained through microprocesses of custodianship at the local level. Every time a citizen exercises their right to universal access and presents at a local place of social inclusion to make a claim for services, custodians have a responsibility to respond. Custodians are also deeply committed to the institution's values of social inclusion. When a custodian perceives tensions between the institutional value of social inclusion and the local place's ability to actualize the value, these tensions elicit emotions and motivate multiple forms of custodian work that maintain the local place of social inclusion. - -------------------------------------------INSERT FIGURE 1 HERE ------------------------------------------- Custodians of a place of social inclusion at the local level can also perceive tension between the institutional value of universal access and the safety of the local place. When custodians evaluate a citizen's claim as carrying a known risk of harm, the inclusion-safety tension arouses moral emotions and manageable fear that motivates custodians to engage in harm-mitigating work. By safely protecting universal access at the local level, this work maintains the place of social inclusion as an institution. In contrast, when custodians evaluate a claim as carrying an unknown risk, the inclusion-safety tension arouses fear that is difficult for custodians to control and motivates a desire to keep the local place safe through harmavoiding work. Since failing to respond to a claim deviates from a custodian's responsibilities and value commitments to upholding universal access, moral emotions are also elicited. If moral emotions reduce fear to a manageable level, custodians find ways to mitigate harm and protect universal access at the local place, thereby maintaining the institution of a place of social inclusion at the societal level. However, if custodians' fear outweighs moral emotions, they feel justified in engaging in harm-avoiding work to protect the safety of the local place. In this case, access is denied for some or all citizens who want to make a claim at the local place, disrupting the place of social inclusion as an institution. --- DISCUSSION We bring together the literatures in humanistic geography, sociology, and institutional theory in organization studies and make a significant contribution by proposing a special type of institution, which we label a 'place of social inclusion'. Our concept of a place of social inclusion is anchored in scholarship about public places of democracy that are accessible to all citizens , local places that are geographically bounded, material, and meaningful , and societal institutions as nested multi-level systems . Although the possibility that places of social inclusion exist can be inferred from these previous writings, their distinctive characteristics have not been conceptualized and integrated into theoretical understandings of institutions until now. The literature pointed us to the initial definition of a place of social inclusion that we sketched at the beginning of this paper. Our empirical study of a public hospital emergency department now allows us to deepen and elaborate our understanding of the defining societal-level and local-level characteristics of a place of social inclusion as an institution. We contend that places of social inclusion are distinguished as institutions by the following characteristics: establishment at the level of society to accomplish values of social inclusion by providing citizens with universal access to services for essential human needs; and endowment of geographic sites at the local level with material resources, meaning, and values as places where citizens in need can make claims. A consequence of these two defining characteristics is the associated value tensions between universal accessibility and the finite resources and safety of the local place. We suggest that our theoretical model of how these tensions create conditions for custodianship may be generalizable beyond public emergency departments to other places of social inclusion. To illustrate, we offer an example of the model's application to public schools, which are "pervasive institutions" in society and local communities . While the "egalitarian ethos" of education-for-all exists at the societal level , students live in neighborhoods with particular demographic, economic, and racial characteristics and make claims for access to education at their local public school . Principals and teachers in local public schools at times perceive tension between the societal-level value of universal access and the resources available to meet student needs at their particular school, such as classrooms, staff, technology, and equipment . Our model suggests this value tension motivates some of them to act as local custodians by rationing resources to meet students' ordinary needs and enabling resources for vulnerable and/or gifted students. We do not assert that these custodian judgments will always or necessarily accomplish the highest values of social inclusion in terms of social justice and human empowerment. On the contrary, our model contends that whether a student's claim for education at a neighborhood public school elicits resource-rationing work or resource-enabling work depends on the subjective judgments and moral emotions of local custodians. Continuing our model's application to public schools, custodians may also experience value tension between societal-level expectations of universal access to education and "school safety and order" at the local place . Safety threats can arise from the spread of infectious diseases like measles when claims for access are made by unvaccinated students posing risks of harm at local schools with insufficient herd immunity . Our model explains how government administrators and principals of local schools respond to this inclusion-safety tension through harm-mitigating work, including reviewing students' vaccination records, cancelling extracurricular activities, and quarantining infected students . In an extreme crisis, our model shows how fear of spreading an infectious disease can outweigh moral emotions of denying students access to education. For instance, in the wake of two recent measles outbreaks, custodians of schools in Clark County USA excluded unvaccinated students for several weeks . In addition, claims at local schools may pose threats of harm through violence , recognized as a problem of "persistence and pervasiveness throughout the history of education" . School counsellors, teachers, and administrators play roles as custodians through harm-mitigating work, including monitoring students' communications and behavior and referring them for mental health support . However, when fears escalate in the aftermath of a gun shooting , our model suggests that custodianship regarding the value of social inclusion may start to break down. Harm-avoiding proposalssuch as arming teachers with guns or zero-tolerance policies that expel students for minor disciplinary infractions may emerge, disrupting the values of the public school as an accessible and safe place of social inclusion. As with Ebola in our study, disruptions from and other professionals maintain and change the logics, practices, values, identity, and status of professions within public emergency departments , public schools , drug courts , public libraries , public museums and the like. An implicit assumption is that these are places of professional work inside public-sector organizations. Our findings challenge this assumption because typifications of profession and organization are inadequate for capturing how societal-level values inhere in places at the local level. Framing geographic sites narrowly as places of professional work avoids attention to the higher level of social purpose that some of these places are mandated to fulfil in democratic society . Viewing these places as public sector organizations prioritizes questions associated with organizational goals and management processes , overlooking citizen's expectations and lived experience of them not as organizations but as local places to which they are entitled access. Conjoining profession with public organization disregards the tensions between social inclusion and local resources and safety that make places of social inclusion precarious. Our conceptual insights into places of social inclusion move the literature forward by elucidating a puzzle that cuts across the literatures in sociology, public administration, and institutional theory. This puzzle asks "can a social purpose that is fundamentally experiential be institutionalized at all?" and leads to contradictions such as "how schools can at once be egalitarian institutions and agents of inequality" . In contrast to customary explanations anchored in professional, administrative and organizational failure , our findings suggest these contradictions are related to the constitution of places of social inclusion as nested societal and local institutions. Whether an egalitarian institution at the societal level functions as an agent of equality or inequality at the local level depends on the volume and nature of claim-makers at a local place; it also depends on the subjective judgments of claim-responders with regard to tensions between universal access and the finite resources and safety of the local place. Thus, by revealing how the institutional dynamics of 'claim making' and 'responding to claims' are tailored to local places, our model provides researchers and policymakers with a new piece of the puzzle of "experienced inequality" , which was obscured when places of social inclusion were viewed through other theoretical lenses. Our identification of the concept of a place of social inclusion challenges researchers to consider the implications and potential scope conditions for established theories. Institutional complexity is likely to manifest differently when professionals work in these special places . Our findings intimate, for example, that some of the public defenders in McPherson and Sauder's study of a drug court may have been more willing to stray from their home professional logic and strategically hijack other logics because they identified as custodians of a place of social justice and were engaged in custodianship to manage resource and safety tensions. Thus, our model contributes placebased insights which may help to clarify and refine theories of how professionals function as institutional agents. In a different vein, our study offers a theoretical avenue for reconciling conflicting results about the 'paradox of expertise' when new technology emerges in professional work . Notably, librarians in public libraries ignored the Internet as predicted by the paradox of expertise , while curators in public museums embraced it . Museum curators linked "the emerging technology of the Internet and the principle of providing universal access to their collection" , implying they responded to the Internet as custodians of a place of social inclusion whereas librarians responded as professionals. Custodian identity for librarians became activated later, when free access to online information created safety threats in local libraries by exposing children to inappropriate or offensive material . The theoretical insights from our study hint that custodianship of universal access may moderate the paradox of expertise. In contributing to these literatures, we recognize that processes associated with professions and public-sector organizations also occur in places of social inclusion. These were clearly present in our study of a public hospital emergency department. What our findings unmask is a distinctive type of custodian work associated with a place of social inclusion that complements existing accounts offered by scholars of professions and public administration. This raises an obvious question. If public emergency departments, for example, are both places of medicine for professionals administered by public-sector organizations and places of social inclusion for society, how can researchers separate the institutional work directed at these different institutions? Our findings show that doctors and nurses working in a public ED where all citizens could receive services distinguished their professional work from that performed in private ED settings where only patients able to pay received treatment. They explained that their professional work as doctors and nurses was similar in both settings, but that in a public ED they were also engaged in custodian work to manage value tensions associated with universal access. This custodianship of the place of social inclusion was extra work overlaid on top of the normal work of patient diagnosis, care, and treatment required in a place of acute medicine. Thus, in conceptualizing places of social inclusion, we do not theorize that all work carried out is custodian work. What differentiates custodianship is its activation through perceived value tensions between the societal-level value of social inclusion and the local place. The defining characteristics of places of social inclusion mean that place is intrinsic to their institutional constitution and reproduction in a way that has been under-theorized by existing explanations of how institutions function . While prior studies typically reduce place to a site where work directed at other institutions happens , our study reconceptualizes places as institutions in their own right. Rather than being mere background context, our model reveals how place is constitutive of an institution itself and consequential for the custodian work required to maintain it. In doing so, we deepen theorizing about inhabited institutions by revealing how people inhabit institutions through their interactions with, and within, local places that are invested with societal values. --- Contributions to Custodian Work In addition to our primary theoretical contribution of revealing places of social inclusion as important institutions, our study contributes to the literature by offering fresh insight into how custodian work maintains institutions. Previous research indicates that custodians identify with an institution and are committed to upholding its values and standards , which motivates them to invest effort in custodian work to protect the institution . Our findings call into question an implicit assumption in much of the custodianship literature about how custodians think about and engage with the boundaries of an institution. Although researchers have not focused explicitly on modes of engagement, the findings of prior research suggest this can be an important aspect of custodianship. Studies have reported that custodians maintain and protect institutions by restricting to insiders the performance rituals at the Cambridge Dining Hall and Texas A&M University's Aggie Bonfire , closing off the outside world's access to the Scottish Advocates Library , and excluding experiences not authentic to the remembered past of Oregon's Track Town . As these examples highlight, studies tend to assume a singular mode of engagement in which custodians work to contain the boundaries of institutional participation by separating those who belong within an institution's values, norms, identities, and practices from those who do not. Our model of custodianship challenges this implicit assumption of boundary containment. We reveal an alternative mode of engagement in which custodians may purposefully direct effort to keep an institution's boundaries open rather than contained. Our findings show how custodian work that engages with institutional boundaries as permeable entails balancing a set of value tensions not evident when the mode of engagement is containment. Resource demands activate a distinctive value tension for custodians when boundaries are permeable. On the one hand, there might not be enough resources for custodians to keep the institution open for everyone seeking participation; on the other hand, closing off the institution's boundaries to some or all participants to conserve resources violates values and expectations of the custodian role. This value tension elicits moral emotions and motivates custodian work to ration and enable resources in ways that keep the institution open for everyone. In contrast, resource demands do not appear to activate value tensions of this nature when the mode of engagement for custodian work is boundary containment. Thus, the processes of resource-rationing and resource-enabling work we find in places of social inclusion are distinctive from other forms of custodian work because the mode of engagement is boundary permeability rather than containment. By bringing attention to permeability and containment as different modes of engagement with institutional boundaries, our study propels inquiry into custodianship in new theoretical directions. Building on our novel insight that managing value tensions associated with resources and safety distinguishes custodianship that engages with boundaries as permeable, future research could examine how these value tensions play out in custodianship in other institutions and explore other potential value tensions. One possibility is to investigate the power of dominant groups, such as when political pressures and interest groups at local levels try to undermine custodianship that seeks social inclusion . While the empirical data in our study do not allow us to examine the effects of local power, future research is warranted to explore power and other potential sources of tension in custodianship directed at boundaries. --- Emotions and Institutional Work Our study contributes to the emerging stream of literature on emotions and institutional work . We extend prior research that shows moral emotions play a role in institutional work by illuminating when and how they can activate custodian work that protects the values of an institution. Moral emotions are feelings that are prosocial and motivate action tendencies for the interests of others . Previous studies have focused attention on how moral emotions -including empathy for others, pride in moral rightness, and shame at moral wrongsmotivate institutional work to create, maintain and change institutions . Adding to this growing line of research, our study highlights how moral emotions motivate custodian work when actors care deeply about the values of an institution and perceive tension between those values and their accomplishment in local places. Moreover, our findings reveal that embedded actors can feel emotional attachment to both institutions and local places. Thus, we speculate that the intensity of moral emotions may be stronger when institutional work is targeted at maintaining institutions that are constituted as places, although future research is needed to explore this possibility. We also contribute to the emotions literature by casting new light on the role that fear plays in institutions. Prior research has offered two broad explanations. First, an institution's regulations, norms and systemic power arouse fear among institutional actors which disciplines them to conform . Second, institutional actors may use fear as a motivational force to collectively create, maintain and change institutions . Both explanations are rooted in a socialized understanding of fear as being experienced in the context of institutions . In contrast, our study of Ebola in a public emergency department reveals the potential for an alternative understanding in which fear is less directly connected to a person's socialization within an institution and operates at a more basic level. This conceptualization resonates with the psychology literature on basic emotions, in which fear is an immediate intuitive reaction to a stimulus that triggers human behavior for survival ). Custodians' initial fears about the Ebola virus were basic emotions and the immediate instinct was self-defense to avoid personal harm. This distinction between fear as a socialized and basic emotion is not trivial. Whereas prior research shows that socialized fear is an important and relatively straightforward mechanism in institutional maintenance , our study reveals that institutional processes are more complicated when institutional actors feel fear as a basic emotion. Our findings suggest that the impact of fear as a basic emotion is moderated by other types of socialized emotions within institutions, most notably moral emotions. In our study, moral emotions that were endogenously embedded in the institution of a place of social inclusionincluding empathy for the needs of institutional participants and embarrassment at the possibility of failing to uphold the institution's valuesrose up to play off against fear triggered exogenously as a basic emotion by the environmental jolt of the Ebola outbreak. Through their self-consciously evaluative nature, moral emotions helped to dampen down fear to the degree that custodians were able to fight against their own basic instincts for selfpreservation and engage in institutional work to maintain the institution. A comparable interplay of moral emotions and basic emotions appears to have normalized fears associated with custodian work in response to familiar infectious diseases and patient violence. Thus, reflective emotions that are more closely connected with actors' socialization and embeddedness within institutions, such as moral anger and betrayal , shame , other-suffering empathy , and pride . --- CONCLUSIONS Our study brings attention to places of social inclusion as important institutions of the democratic state that provide citizens with universal access to essential human services. We offer insight into how these institutions are maintained across nested societal and local levels through the purposeful work of custodians. We invite research exploring custodianship in diverse places of social inclusion, ranging from places with venerable histories of inclusion like public schools and museums to recently emerging places like sanctuary cities. Our findings about how such places endure are timely in light of the overwhelming fear and disruptions to places of social inclusion in the wake of the global coronavirus pandemic and given contested political discourse in the United States and Europe about what it means for nations, cities, and communities to be socially inclusive places. We encourage scholars to explore places of social inclusion and to expand the theorization and empirical investigation of place and institutions. --- N12). A person walks out of the ED when refused morphine by Dr S because 'it's not the right treatment, even if you've been given it before' . A person receives a script for Valium and leaves. When informed of the self-discharge, Dr E tells nurse, 'They're safe. There's nothing about their [condition] that makes me want to run after them' . A person who presented under the influence of alcohol wants to leave. After checking they are sober enough to be safe, Dr N shows them the exit and moves on to the next patient . --- gun shootings and measles outbreaks represent extreme cases. More commonly, custodianship through resource rationing, resource-enabling, and harm-mitigating work will maintain the local public school as a place of social inclusion. Future research is needed to confirm the generalizability of our model depicting how custodianship processes unfold. Various other places of social inclusion established at institutional levels and instantiated at local levels warrant empirical investigation. Courts of law in democratic societies, for example, are charged with delivering impartial justice to all citizens , and local courthouses constitute the places where citizens come to access this legal justice . Public libraries and museums in towns and cities provide citizens with universal access to information, collective memory, and cultural heritage . The two defining characteristics of places of social inclusion could also apply to government sites offering employment services, public housing, community centers, social welfare agencies, and parks and recreation facilities . These places "protect the rights of user groups and are accessible to all groups" when citizens make claims at the local level for basic human needs . Finally, places that are "physical sites of democratic performance" , such as legislative assembly buildings, seem to fit the characteristics of a place of social inclusion when they remain open so that collective decision-making is accessible and visible to citizens. While our main contribution is to shine light on places of social inclusion as a special type of institution, our study also contributes to the literatures on place and institutions, custodianship, and the role of emotions in institutional work. --- Place and Institutions The institutions that we label places of social inclusion have been studied using other theoretical lenses. Scholars in institutional theory and the sociology of professions have explored how doctors, nurses, teachers, lawyers, librarians, museum curators, social workers, our model extends prior research on moral emotions by illuminating their critical role in moderating fear which otherwise has the potential to derail institutional maintenance. We speculate that if a patient suffering from Ebola or behaving violently caused serious harm or death to others, basic emotions might overwhelm more reflective moral emotions and disrupt ordinary processes of institutional maintenance. We call for further research exploring the dynamics of fear and institutional disruption, which events associated with the coronavirus outbreak suggest is an issue of vital global importance for places of social inclusion. Interplay between basic and moral emotions in the unfolding processes of institutional work over time is a unique aspect of our study. Prior empirical studies have tended to ignore basic emotions, possibly because they seem à priori to be less theoretically salient to institutions than socialized emotions. The study of emotions in institutions has also been hampered by methodological difficulties of tracing institutional actors' emotions in real-time . Our study benefitted methodologically when an unexpected environmental jolt during our fieldwork cast the basic emotion of fear into sharp relief. Thus, it is hardly surprising that the relationships between basic and moral emotions and institutional work revealed in our study have been largely hidden until now. We conjecture that these relationships are generalizable to other institutions beyond places of social inclusion. We suspect, for example, that institutional work to create Canada's first safe narcotics injection sites in Lawrence's study, and institutional work to disrupt organized crime in Sicily in Vaccaro and Palazzo's study were both enabled by moral emotions controlling institutional actors' basic emotions of fear. In addition to exploring the experience of fear in other types of institutions, we invite investigation of other basic emotions identified in the psychology literature, including anger, disgust, happiness, sadness and surprise ). Future research into institutional work could explore when and how instinctive basic emotions work with and against higher-order And the very real risk of exposing [a doctor or nurse] to it and then their families potentially, and the fact that truly no system in the world is adequately set up for a major pandemic of something as awful as Ebola. D2 Senior doctor S walks down to the triage zone to inspect the designated room for assessing suspected Ebola patients. S searches the room and the antechamber. "There's supposed to be a protocol and I can't see it." Locating the protocol attached to the entry door to the antechamber, S reads the single page and shakes his head in dismay. "This is only about the mask and not the equipment. Nurse N is frustrated that not all staff see the need for Ebola training. 'They don't seem to get it. We're an emergency department and everyone has to be prepared to safely assess these patients if they turn up. We all had to see swine flu patients.' Fieldnotes I see Ebola in the same line as the retrieval work and stuff like that. Retrieval work is a component of emergency medicine care but not all of us have to do. There's special training that's involved for it and there's special levels of understanding that are required to do those sort of special roles ... Just to say that we can do things [in the ED] is not necessarily that we all should be doing things. D8 But we know very well that this is a very dangerous situation -people have died treating patients that have this condition -and so we've got to respond in a special way. D5 A group of doctors and nurses walk down the corridor of the Acute zone, handing over patients. The conversation shifts to Ebola. A senior doctor S says, "We should follow what the United States does. We train up a small team of about eight doctors and nurses who volunteer to be involved in treating these kinds of patients". Some of the doctors and nurses nod and agree that it makes more sense to have a small team. S continues, "Who's going to be more motivated -the person who wants to be involved for conscience reasons or the person who is forced to be involved? The conscience doctoryes. The forced doctor -no." Fieldnotes --- Reflection on Constitutive Meaning of Place and Self-Conscious Moral Emotions Look, the bottom line is any patient that's sick and they need to go to hospital, where are they going to go? They don't come into the entrance foyer and turn up to the volunteer and say "I feel sick. Can you call a doctor down from the ward?" They come here [to the ED]. ... So yes, the emergency department by default has to have an Ebola response. D24 It's caused us to reflect and say, "Where is our role? What do we do?" And also perhaps hopefully identify to the hospital that, in the past, it's been a default option to say, "Well, if there is a problem that's too hard to fix, just send them to ED.
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Introduction Uganda has one of the fastest-growing and most vibrant informal sectors compared to its formal sector. Indeed, the Quarterly Informal Economy Survey report on world economies indicates that the size of Uganda's informal economy is estimated to be 34.4%, which represents approximately $58 billion at the GDP PPP level . Moreover, the Uganda Bureau of Statistics reports that over 50% of Uganda's GDP is attributed to the informal sector, while more than 80% of the country's labor force work in the informal sector. This implies that the informal sector is a major sector contributing greatly to the country's economic development today. According to the World Bank , Uganda's informal sector is characterized by low productivity personal services, and basic manufacturing activities . Business enterprises in this sector are mainly manned by their owners as the only workers, but sometimes, one additional staff may be employed . Indeed, non-agricultural household enterprises many of which operate in undefined places and they are also not registered characterize the country's informal sector ). Relatedly, businesses such as eating kiosks, fish selling, and shoe shining, among others, dominate Uganda's informal sector . Moreover, it is also reported that more than half of the workers employed in Uganda's informal sector are paid employees, followed by the self-employed and contributing family workers coming third . However, although the informal sector is the back born of Uganda's economy, extending social security services to meet the social security needs and expectations of workers in the sector remains a challenge. Moreover, this is in contravention of one of the targets of the Sustainable Development Goals of ensuring universal coverage of social protection. Indeed, the inability to access social security services by workers in the sector was because business enterprises in the country's informal sector had no formal structures and it mainly attracted school dropouts and those who had failed to secure jobs in the formal sector . Because of this, the sector is viewed as an illegality, a source of hooligans, criminals, and detractors who cannot, therefore, complement the government in national development efforts . Meanwhile, steps have been made following consistent demands made by stakeholders to embrace a holistic approach to ensure universal coverage of social security services to meet the social security needs of all workers including those in the informal sector. Indeed, this is also in line with the ILO resolution on decent work and the informal economy, and the subsequent ILO recommendation No. 204 concerning transitioning from the informal to formal economy. As such, efforts have been made to have activities in the informal sector formally run including having business enterprises in the sector formalized . Moreover, it was also assumed that having businesses in the sector formalized through registration, extending financial assistance to workers in the sector, and formulation of policies to regulate the sector will enhance accessibility to social security services. Also, the amendment of the NSSF Act 1985 which provides for a voluntary membership scheme was intended to enable workers in the informal sector to access social security services. However, despite all this, accessibility to social security services by workers in the informal sector remains a challenge, which has raised and continues to raise public concern thus the motivation behind this study. Indeed, this study was informed by the Informality of Handcuff Theory which postulates that informal firms are potentially very productive, but they are only constrained by costly government regulations, government bureaucracy, their inability to secure property rights, and to access financial help. Furthermore, the theory suggests that informal firms would be fundamentally similar to formal firms if they were not constrained by policy. Therefore, this implies that if the barriers to official status were lowered and capital provided, informal firms would register and then take advantage of the formalization, which would guarantee workers in the sector enhanced accessibility to social security services. --- Study Objectives Overall, this study aimed to ascertain the effect of the formalization of informal sector business enterprises on accessibility to social security services by workers in Uganda's informal sector. Indeed, the study specifically investigated the effect of; registration of informal sector business enterprises, increasing accessibility to financial help, and, formulation of regulatory policies which support the sector on accessibility to social security services by workers in Uganda's informal sector --- Literature Review A few studies have investigated formalization of informal sector business enterprises and accessibility to social security benefits in the informal sector . However, in a number of these studies, the formalization of business enterprises was conceptualized in different ways including how business enterprises are registered, how workers in the informal sector can access finances, and the process of formulating informal sector business regulatory policies. For instance, Adzawla, Baanni, and Wontumi carried out a study in Ghana in which they discovered that formalization of the informal sector activities positively affects access to social security benefits. Moreover, Masanyiwa, Mosha, and Mamboya also investigated Tanzania and their findings revealed that access to social security benefits is dependent on several factors including workers in the sector being in the position to access finances and the regulation of the informal sector business activities. These however observed that the ability of the workers in the informal sector to access social security services is largely dependent on how well the registration of business enterprises and how participatory the process of the formulation of the sector policies is conducted. Similarly, Gwer, Odero, and Totolo Investigated accessibility to social security services in Kenya's informal sector and findings revealed that formalizing business activities in the informal sector increases accessibility to financial help. However, the same study was quick to report that workers in the informal sector spend the finances they get on consumption instead of investing it, which affects their contributions to social security schemes. Moreover, in another study by Bennett and Rablen , it was reported that enhanced access to social security services is a product of concerted efforts which involves is premised on several factors including regulating activities in the sector and increasing avenues through which workers can have access to finances to grow their businesses. Indeed, Bergolo and Cruces also agreed with the observation that formalization of the informal sector increases accessibility to social security services. However, whereas several studies report that formalizing informal sector business enterprises enhances accessibility to social security benefits, many of these studies were qualitative. Still, many earlier studies were carried out in the context of other countries and not in Uganda. Therefore, these were the gaps identified by the researcher which required further investigations, thus the motivation behind this investigation. --- Methodology The study adopted a quantitative research approach, as well as a descriptive regression research design. The choice of the approach and the research design was premised on the nature of the research problem the study intended to resolve. Data were specifically collected from different informal sector sub-groups including leaders of market vendors, the vendors themselves, leaders and workers in the transport sector, leaders and workers in plantations, and leaders and workers in the fisheries industry. Data were collected from a sample of 302 respondents selected from both the leaders and the workers in the informal sector. Because the respondents targeted by the study were many, the study opted to use a structured questionnaire. Data analysis was undertaken using quantitative methods including descriptive and regression analysis using inferential statistics. The results of the study were then presented in the next section of the article. --- Results and Discussion --- Background Information on Respondents Different background characteristics for the 302 respondents were captured and they are presented in Table 1. Results in Table 1 reveal that more males 182 participated in this study were more than their counterparts, the female participants 120. Indeed, the results also indicate that the majority of the participants 142 participated in this study were between 30 and 39 years old, which means that the majority of them were mature enough to comprehend the constructs under investigation. --- Descriptive Statistics on the Independent Variable-Formalization of Informal Sector Five questions on the independent variable were conceptualized and presented by the researcher to participants who were then asked to indicate their opinions on a scale with responses ranging from 1=Strongly Disagree, 2=Disagree, 3=Neutral, 4=Agree to 5= Strongly Agree. Results were however finally categorized into three groups and coded as 1=Disagree , 2=Neutral , and 3=Agree and presented here in Table 2. 2 indicate that the majority of the respondents 128; mean= 2.93 agreed with the statement that registration of business enterprises within the informal sector enhances accessibility to social security benefits. Results imply that respondents agree that registration of business enterprises in the informal sector in Uganda will increase accessibility to social security services by workers in the sector. Indeed, as to whether improving accessibility to finances by workers in the informal economy enhances accessibility to social security benefits, results show that the majority of the respondents 114; mean=2.88 agreed that improving accessibility to finances enhances accessibility to social security benefits in the informal sector. Finally, results further reveal that majority of respondents 118; mean=2.87 agreed that formulation of informal sector regulatory policies enhances accessibility to social security services. Overall, although the results showed that efforts to formalize Uganda's informal sector are high with mean responses ranging from 2.87 to 2.93, there is still room for improving informal sector formalization efforts in the country. --- Descriptive Statistics on the Dependent Variable -Accessibility to Social Security Services The researcher put across question items on accessibility to social security benefits such that respondents could express their opinions by selecting the right response from a range of responses on a scale with responses ranging from 1 = Strongly Disagree, 2 = Disagree, 3 = Neutral, 4 = Agree to 5 = Strongly Agree. Results were however finally categorized into three groups and coded as 1 = Disagree , 2 = Neutral , and 3 = Agree and presented in Table 2. The results in Table 3 reveal that the respondents' perceptions of access to social security services are not good. Results show that the majority of the respondents 163; mean= 2.54 disagreed with the statement that existing informal social security arrangements are well organized. This suggests that workers in Uganda's informal sector cannot easily access social security services. Regarding whether the members' social security needs are adequately handled by the existing informal social security arrangements, the results in Table 3 indicate that the majority of respondents121; mean= 2.98 disagreed that existing informal social security arrangements adequately handle the members' social security needs. This result insinuates that existing informal social arrangements do not adequately handle the members' social security needs. Moreover, regarding whether the existing informal social security arrangements respond faster to the social security needs of the members, results show that the majority of the respondents 124; mean=3.01 disagreed with the statement. Indeed, results also reveal that the majority of respondents 135; with mean= 3.10 disagreed that the contributions of members to the existing social schemes are adequate. Meanwhile, findings reveal that the majority of the respondents 113; mean=2.94 disagreed with the statement that members can easily access funds from the existing social security arrangements in the informal sector. --- Verification of Research Hypotheses This study is based on three research hypotheses, namely: H1: Registration of informal sector business enterprises has a statistically significant effect on the accessibility to social security services by workers in the informal sector; H2: Improving access to finances has a statistically significant effect on the accessibility to social security services; and H3: Formulation of informal sector regulatory policies has a statistically significant effect on the accessibility to social security services. However, before verifying these hypotheses, they were first converted into null hypotheses. Thus, the tested null hypothesis was stated as follows: Ho1: Registration of informal sector business enterprises has no statistically significant effect on the accessibility to social security services by workers in the informal sector; Ho2: Improving access to finances has no statistically significant effect on the accessibility to social security services; and H3: Formulation of informal sector regulatory policies has no statistically significant effect on the accessibility to social security services. Moreover, the study further generated indices to measure each one of the constructs, namely: registration of informal sector enterprises , increasing accessibility to finances , and formulation of informal sector regulatory policies , while accessibility to social security services as . This was followed by testing of the null hypothesizes using the multiple regression technique and the results of the hypothesis tests are presented in tables 4, 4, and 4 below; show that the correlational coefficient between the formalization of informal sector enterprises is positive with an R-value of 0.616 and R 2 of 0.379. These results imply that a unit change in the formalization of informal sector enterprises brings about a 0.379 increase in accessibility to social security services by workers in the informal sector in Uganda, with other factors remaining constant. The observed sig value of 0.000, is much lower than the critical sig. value of 0.05, implies that formalization of the informal sector has a statistically significant effect on accessibility to social security services. Moreover, to determine whether the overall regression model is a good fit for the data, the researcher went ahead and performed the F ratio test, and the results are presented in Table 4 The results in Table 4 = 60.621, P < .05) indicate that the independent variables significantly June 2, 1 Kakaire © Author; CC BY-NC predict the dependent variable ; implying that, the regression model is a good fit of the data. . Indeed, to test for the effect of each independent variable on accessibility to social security services, a multiple regression analysis was conducted and the results are presented in Table 4. The results in Table 4 show that the coefficients relating to the first independent variable, registration of informal sector business enterprises, with accessibility to social security services are positive with a beta value of 0.166. This result implies that a unit change in the registration of informal sector businesses will bring about a 16.6% increase in accessibility to social security services, with other factors remaining constant. The observed sig value of 0.001, is lower than the critical sig. value of 0.05, means that registration of informal sector enterprises has a statistically significant effect on accessibility to social security services. Therefore, the null hypothesis that "registration of informal sector business enterprises has no statistically significant effect on the accessibility to social security services by workers in the informal sector" was rejected and the alternative hypothesis was upheld. Indeed, results in Table 4 show that coefficients linking improvement in accessibility to finances, the study's second independent variable, to access to social security services is also positive with a beta of 0.329. This finding suggests that holding other factors constant, a unit change in improving accessibility to finances brings about a 32.9% increase in accessibility to social security services. The observed sig value of 0.000, is much lower than the critical sig. value of 0.05, suggests that improving accessibility to finances has a statistically significant effect on accessibility to social security services. Thus, the null hypothesis that "increasing accessibility to finances has no statistically significant effect on the accessibility to social security services" was rejected, while the alternative hypothesis was upheld. Moreover, findings in Table 4 also show that coefficients associating the formulation of informal sector regulatory policies, the third independent variable, with accessibility to social security services, is also positive with a beta of 0.263. This finding suggests that a unit change in the formulation of policies to regulate business enterprises in the informal sector brings about a 26.3% increase in accessibility to social security services. The observed sig value of 0.000, is lower than the critical sig. value of 0.05, suggests that the formulation of policies to regulate the informal sector business enterprises has a statistically significant effect on accessibility to social security services. Thus, the null hypothesis that "formulation of informal sector regulatory policies has no statistically significant effect on the accessibility to social security services" was rejected and the research hypothesis was accepted. --- Discussion This study aimed to ascertain the effect of the formalization of informal sector business enterprises on accessibility to social security services. The study came out with key findings: first, that registration of informal sector business enterprises, increasing accessibility to finances, and formulation of informal sector regulatory policies have a statistically significant effect on the accessibility to social security services. Moreover, the finding that registration of informal sector business enterprises, accessibility to finances, and formulation of policies to regulate the informal sector will increase accessibility to social security services in the informal sector is in agreement with the results of earlier studies. For instance, Charmes also established that registration of business enterprises in the informal sector results in enhanced accessibility to social security services by June 2, 1 Kakaire © Author; CC BY-NC workers in the informal sector. This was also in consonance with the work of Adzawla, Baanni, and Wontumi where it was established that access to social security services in the informal sector can be enhanced by the registration of businesses in the sector. Moreover, Masanyiwa, Mosha, and Mamboya investigated factors influencing the participation of informal sector workers in formal social security schemes in Tanzania and findings revealed that increasing accessibility to finances by workers in the informal sector is a driver to enhancing access to social security services in the informal economy. This implies that the more workers in the informal sector have access to finances, the higher would be the chances of joining formal social security schemes and accessing social security services. Indeed, this argument is supported by Agravat and Kaplelach who observe that increased accessibility to finances by workers in any sector enhances their access to social security services. Dorfman also agrees with this finding, where he vehemently contends that access to finances enhances the workers' accessibility to social security services. Moreover, Alfers also reported that regulating business activities through the formulation of regulatory policies enhances accessibility to social security services. --- Implications of the Study Overall, the finding that the formalization of business enterprises in the informal sector has a statistically significant effect on the accessibility to social security services is in tandem with both the theoretical and conceptual perspectives of this study. The informality as handcuff theory used to underpin this study stipulates that if the barriers to official status of the informal sector were lowered and capital provided, informal firms would register and then take advantage of the formalization including enhancing access to social security services. Concerning this study, therefore, the results show that other factors notwithstanding, the registration of business enterprises, increasing accessibility to finances, and designing policies to regulate the informal sector enhance accessibility to social security services. This implies that all stakeholders should pay attention to all efforts and how Uganda's informal sector is formalized. --- Conclusion In line with the findings of the study and the discussion which followed, the researcher concludes that holding other factors constant, the formalization of informal sector business enterprises would enhance accessibility to social security services in Uganda's informal sector. --- Recommendations Thus, the study recommends that local and international stakeholders should intensify efforts aimed at having informal sector business enterprises formalized and also invest more resources in all programs which will ensure that formal structures are established, and business activities in the informal sector streamlined. --- Declaration I declare that research was conducted in the absence of any financial relationship which could be perceived as a potential conflict of interest.
The study examined the effect of the formalization of informal sector business enterprises on accessibility to social security services by workers in Uganda's informal sector. This study was motivated by the persistent concerns and outcry by stakeholders over the inadequate access to social security services by workers in the informal sector despite the sector's huge contribution to the country's economic development. Moreover, the study adopted a quantitative research approach and employed a descriptive correlational research design. Quantitative data were collected using the questionnaire method from 302 respondents who were randomly selected from the informal sector and analyzed using descriptive and regression analysis methods. Findings revealed that registration of informal sector businesses (B=.166; p=.001), accessibility to finances (B=.329; p=.000), and informal sector regulatory policies (B=263; p=.000) have a statistically significant effect on the accessibility to social security services. However, overall, the study revealed that formalization (R=.616; R 2 =.379; p=.000) has a significant influence on accessibility to social security services in the informal sector in Uganda. Therefore, it was concluded that other factors remaining constant, formalization of informal business enterprises would enhance accessibility to social security services by workers in Uganda's informal sector. Thus, the study recommends that stakeholders need up all efforts aimed at formalizing the informal sector to enhance accessibility to social security services by workers in Uganda's informal economy.
Introduction Sustainability transition studies have increasingly paid attention to indigenous peoples and knowledges , an interest that follows the current research agenda of sustainability transitions . Specifically in achieving: a deeper understanding of contexts for both policy and experiment effects in the governance of transitions; as well as a deeper understanding and reflexivity of transitions' mainstream vis-a-vis diversity and inclusion. To contribute to this debate, this article explores if, and how, indigenous peoples and knowledges take part in the construction of hybrid socio-technical systems, i.e. socio-technical systems where heterogeneous knowledges already coexist and give rise to the emergence of specific and nuanced socio-technical features and patterns feeding from epistemic diversity. Given that a sociotechnical system is a "cluster of material objects, social practices, social relationships, and social organization" , we argue that a deeper contextual and analytical understanding of this phenomena is core to the understanding of knowledge governance challenges related to deep changes towards just and environmentally sustainable socio-technical systems. Understanding processes of hybridisation of knowledge is necessary to address the wicked challenges of sustainability policy and practice, specifically, to address the relations between knowledge and power in social change . For example, indigenous peoples have been recognised as the stewards of global biodiversity: "constituting only 5 percent of the world population, indigenous peoples are vital . Traditional indigenous territories encompass 22 percent of the world's land surface, but 80 percent of the planet's biodiversity" . Yet, such peoples are locally embedded in broader regional and national borders and, naturally, all sorts of economic, political, social, cultural and institutional exchanges occur in such porous contexts. Often, scholarly work and political dynamics point at the conflict and controversy that arise from the coexistence between modern ways and indigenous peoples and knowledges. Here, we acknowledge such exchange contexts as heterogeneous contexts, settled on institutionally complex socio-technical, political and economic dynamics . Power imbalances and exclusion of every sort have been also frequent, including their epistemic forms , phenomena that have been often rooted in colonial institutions, conflicts and historical drifts . Yet we can imagine that, even if such coexistence is not an easy feat, there might be a number of forms by means of which, oblivious to a deeper scrutiny, heterogeneous knowledges interact creating situated forms of socio-technical systems. This paper aims at providing analytical means to understand if, and how, indigenous peoples and knowledges assemblages interact with techno-scientific assemblages to create hybrid socio-technical systems. To that aim, we address the question: What are the types of interaction between techno-scientific and indigenous/local knowledges in socio-technical configurations aiming at sustainability? We build on the assumption that hybrid socio-technical systems emerge from the diverse possible ways in which technoscientific and indigenous/local socio-technical knowledges interact. We search for patterns or building blocks of hybrid socio-technical systems. The resulting framework points at specific knowledge governance challenges that sustainability transitions face in relation to localised epistemic diversity. Conceptually, we discuss the assumptions and main approaches of epistemic diversity and hybridisation. Coming from manyfold scholarly traditions, these concepts bring to the table challenges related to the existence of diverse knowledges. However, its reach comes short to provide nuanced views of the forms of interaction between such knowledges and its effects in socio-technical systems. We turn to the literature to source an outline of such nuanced views, carrying out a theory-driven review . We assess scholarly works discussing any form of interaction between techno-scientific and indigenous/local knowledges having sustainability as a reference point. Sustainability is our reference point because, on the one hand, unsustainability has been caused by the hegemonic Western ways of knowing, imagining and seeing the world ; on the other hand, because it has been argued that the quest of sustainable socio-technical systems would benefit from including indigenous knowledges . In this way, sustainability acts as a catalytic notion where techno-scientific and indigenous/ local knowledges interact. We search for recurring patterns indicating types and modes of interaction. We build an integrated view of such interactions into a model. We bring about the multi-level perspective transition framework as a common background to discuss a hybrid socio-technical knowledge circulation model , built on reiterative types of interaction. These types of interaction hint at the existence of multiple directionalities and levels of unfolding of such interactions. In the discussion, we further develop these hints, suggesting knowledge circulation patterns and constitutive tensions of hybrid socio-technical systems. Our insights show a better grasp of epistemic diversity as a constructive tension for transformative change in hybrid socio-technical systems. Results provide a nuanced reading of phenomena conditioning the understanding, framing and deployment of transition pathways for socio-technical longterm change in hybrid epistemic settings. We expect this contribution to add valuable insights into current analytical reflections on how to better approach the impact of epistemic diversity in sustainability transitions, especially in the South . --- Conceptual framework In this section, we discuss the epistemic diversity and hybridisation in the backdrop of socio-technical transitions as conceptual landmarks. These notions denote a diverse and long-standing scholarly interest in the coexistence and interaction between heterogeneous knowledges. --- Epistemic diversity Epistemic diversity was coined as a notion by decolonial thought. It is worth addressing a few lines to decolonial thought to clarify its foundations and positionality. Decolonial thought has been nurtured by Latin and Northern American cultural studies' scholars and African and Asian postcolonial researchers , critiquing the assumption that decolonisation came to an end in the early nineteenth century or in the second half of the twentieth century for Africa and Asia, when national revolutions surged and republics were born. From the decolonial viewpoint, colonial times have not ended at all. Colony is clearly seen in worldwide structures of center-periphery relations in which national colonial-minded elites play a role. Decolonial works and reflections raise awareness about the means by which coloniality is still performed and reproduced. Its practice supports the positioning of the colony's others' peoples, knowledges and rights. Decolonial tradition has been nurtured in action-oriented scholarship. Decolonial thought builds upon two main sources: first, the Anglo-Saxon 'postcolonial studies' perspective, arguing that coloniality is performatively expressed in manyfold ways of 'colonial discourses' ); second, the world-system perspective, in which the worldwide capital accumulation is pointed at as the main source of contemporary global becoming ). As a decolonial concept, epistemic diversity aims at uncovering, visualising, valorising and positioning other knowledges. Epistemic diversity has grown as a shared notion from a variegated set of complementary works, which plead for a deeper look at alterity, and with it express a resistance position aiming at situating others' recognition. This standpoint has been coined as radical diversity or post-abyssal thought . Epistemic diversity discusses the enactment of radical diversity at various possible levels. First, epistemic diversity operates as an assumption or starting point. The notion of ecology of knowledges expresses such diversity. Here, modern techno-scientific knowledge tradition should be just seen as another of the kind, sharing with other knowledges a core feature: incompleteness . No knowledge is or could be complete, and every kind of knowledge is partial. Ecology of knowledges also encompasses an ecology of temporalities, where contemporary times do not grasp the multiple time directionalities posed by multiple epistemic sources, nor is it exhausted in a single reference of 'present' or a sense of 'progress'. Second, epistemic diversity expresses a human value, an aspect drawing attention to widely embedded practices of epistemic injustice . As a human value, epistemic diversity urges the acknowledgement of others' knowledges and being in their intrinsic legitimacy, as well as spontaneity in their mutual encounter and exploration. Cajigas-Rotundo suggests that 'exploring such boundary spaces demands questioning about what is and what could be knowledge in a realm of epistemic diversity and democracy'. de Sousa Santos brings forth the notion of ecology of the acknowledgement, which refers to what remains when hierarchy is ignored, and the search for intelligibility without cannibalising others' knowledges. Third, epistemic diversity feeds the creation of alternate social worlds. Following Walsh , interculturality is not about romanticising folklore or 'exchange', but rather about witnessing societal building processes: the building of others' knowledges, social orders , social powers and societies. de Sousa Santos understands such processes as an ecology of productivities. We will come back later to this aspect, for it shares the main assumption of our inquiry. In sum, epistemic diversity stresses a point about the intrinsic value of human diversity, the wealth of knowledge produced by such diversity and the fact that such knowledge is embodied in social orders. --- Hybridisation as a knowledge-and culture-related process Hybridisation relates to the processes by means of which epistemically diverse peoples meet into single streams. Even though hybridisation has been discussed from different locus and disciplinary streams, there is little detail about its means and patterns. We discuss here an overview. The first locus comes from social studies of technology . Early on, Callon and Law and Callon et al. brought about the notion of hybrid forums. Hybrid forums discussed interactions between "science-experts" and "society-lay people" interactions, taking a look at the intersections in which hybrid configurations between them took place. This view aimed at illuminating 'alternative visions of worlds', as well as to show the 'heterogeneous character of social networks'. Some works follow suit, discussing the institutionalisation of collaborative practice between scientists and non-scientists or collaborative scientific and ancestral conservation initiatives . A second locus comes from institutional hybridisation. This is, hybridisation at the level of rules of the game or standardised practice. Mostly set disciplinarily on peace studies, these discussions draw attention to the manifold ways in which interactions amongst diverse actors shape institutional settings . Some refer to challenges related to the existence of implicit hegemonic positions on such processes . A complementary stream on institutional hybridisation draws attention to the ways diversity forcefully demands adaptation from rules and standards, as would be the case with multinational businesses . A third locus comes from anthropology and cultural studies, specifically in relation to overarching cultural creation phenomena that take place in contemporary societies. Here, the discussion draws attention to the ways by which cultural boundaries are affected , with hybridisation patterns that affect identities as an effect of intercultural communication. It is argued that this phenomena still need further on-site understanding , particularly in relation to the creation of 'cultural borders' . A last locus builds on a line closer to decolonial thought. This stream discusses the relations between tradition and modernity, the product of which is a hybrid, a mixture between elements of both. Some references point at cultural mixtures expressed in specific communities , as well as possible tensions implicit in such mixtures . Escobar reckons in his work implicit tensions of hybridisation processes, calling to otherness as a normative reference to question Western forms and integrating other ways of construction through interaction between different actors, knowledges, identities and cultures. Escobar seeks to conceptualise non-scientific structures as sources of alternative development pathways through hybridisation and interculturality. Close to this idea, Brown argues for the engagement of multiple knowledges as a necessary condition to tackle societal challenges. Such alternative pathways are stressed by the notion of divergence as a locus of transformational potency set in place in diversity, i.e. the idea of 'diversity as richness is desirable and taken for granted, yet many epistemically diverse contexts hold the statu quo'. As a notion, divergence raises awareness about the power of such diversity in opposition to epistemic monocultures, by diverting, producing paradigmatic controversies, proposing alternative pathways and valuing the opposition character of "a motley world" . In sum, hybridisation processes take place: in the acknowledgement of diversity and divergence, in everyday quotidian exchange, in processes of knowledge production, exchange and circulation and in societal rules of the game and institutions. --- Towards modelling a hybrid socio-technical system The question about knowledge in sustainability transitions research relates to the understanding of possible approaches, features and effects of human knowledge and technologies in relation to sustainability. Expectedly, this subject is not exempt from scholarly controversy and heterogenous normative, socio-technical and political views and action , for the discussion on knowledge embeds a discussion on power . As a notion, socio-technical systems provide a comprehensive analytical framework studying long-term clustering processes of material objects, social practices, social relationships and social organisation . Following systemic views, the notion provides a long-term view on social change processes with awareness of its material conditions . This approach was rapidly taken by sustainability transition studies following the work of Geels , for its capacity to address the systemic nature of unsustainable production-consumption systems. Although analytical efforts have been developed to better account for place and scale in socio-technical transitions , the claim for a better understanding of other contexts, and further, other peoples and knowledges, is still an open question. This matter is not only open for discussion in the field of sustainability transition studies , but in international development practice as well . The understanding of heterogeneous systems, justice and governance is of special interest in this line of inquiry . Despite the fact that there are ongoing discussions about knowledge for sustainability , its reach seems to be far from grasping epistemic diversity challenges. By reflecting on socio-technical systems in the light of decolonial thought, we aim at a more detailed translation of its stance at a model scale. Decolonial thought is positioned in a critique standpoint towards modern science, technology and innovation as foundations of the technoscientific regime. The decolonial debate on epistemic diversity is set in defence of others' knowledges. Its values, positionality and scholarly stance are concerned with the many ways in which the modern episteme has caused epistemic damage . Notions such as growth, development and innovation are seen by decolonial scholars as locked-in in performative forms of the relation developed/developing or centre/ periphery. The Schumpeterian motto of creative destruction is seen not only to destroy and create jobs, but to destroy ontological multiplicity, epistemic diversity and ecosystems . It is worth noting, though, that epistemic diversity is not only about how epistemically diverse knowledges exist at the borders , but also about how epistemically diverse knowledges co-produce social orders ). Analytically, this view is close to ontological aspects of constructivism in the understanding of socio-technical systems ) and the broader notion of boundary work , building on forms of agency related to demarcation in the shared production of social worlds. We argue that it is possible to situate a midway solution towards a nuanced understanding of hybrid contexts, by trying and recreating a colourful view of the encounter between heterogeneous knowledges as well as its effects in shaping diverse socio-technical systems. --- Rationale of the inquiry --- A theory-driven literature review We aim at finding if there are and, if so, what are the typical interactions between Western techno-scientific knowledge and indigenous/local knowledges. We approach this question through a literature review, using a crosscutting approach to ground operational categories. We are aware that a caveat of this approach is its limited reach vis-a-vis a complex and multi-situated object. We understand this inquiry as a theoretical experiment that aims at setting a provisional model built on common references. Further, we understand this inquiry as an effort of translation and development of decolonial thought and heterogeneous disciplines into mainstream thought about socio-technical systems. The effort is relevant due to the place given to socio-technical systems in sustainability transition literature. The grounding inquiry follows a theory driven literature review following an interpretive approach . We select works that describe interactions in the context of sustainability, i.e. works that document initiatives related to socioecological issues. Works are selected with a broad approach, to include insights from a multiple disciplinary base . We aim at grounding an analytical framework built on forms of interaction between knowledges . We assume that interactions around sustainability between epistemically diverse/divergent assemblages have been scholarly addressed and the readings are sound despite such interactions being studied unintentionally; both the product and the means of interaction are factual and relatable as data; the body of works studies modes of encounter that can be typified into a number of categories; possible relations between such categories help outlining a comprehensive view. --- Analytical grounding Expectedly, not every work on the database explicitly discusses interactions in a direct sense, but embodies, exemplifies or implies phenomena of interest on the matter. This aspect translates into the analysis as an iterative assessment process , by means of which elements of each work added to the definition and extent of emergent categories, in the light of its contents, purpose and/or stances; and each work was categorised according to a fitting place in each category, but also in the light of a plausible whole of demarcated categories. The categories we have found describe various features and facets of phenomena taking place when various possible and scattered elements of the Western techno-scientific regime interact with their counterparts regarding the broad context, challenges and initiatives towards sustainability. The interpretive process includes a first sorting of the papers according to scales of inquiry found in the literature . The microscale includes works set to the reach of individuals or single communities. The mesoscale includes works that describe a broader reach in which phenomena takes place beyond the single individual or community, discussing crosscutting societal objects or patterns . Afterwards, iterative rounds of discussion allowed us to identify categories within each scale. --- Research method The set of potential peer-reviewed articles was selected by performing a search in ProQuest, Ebsco Host, Jstor, LENS and Scopus. The search query was selected by searching for as many forms as possible to address forms of encounter between diverse knowledges, including their nature , purpose and context . --- Results We identified 58 papers, most of them case driven , while the rest elaborated at the theoretical level or consist of theoretical/reflexive approaches . Case-based studies analyse cases from 65 countries which are shown in Fig. 1. Expectedly, the topic is more frequently addressed in post-colonial settings. Disciplinary approaches to the topic are multiple. Some disciplines evidence more interest , but scholarly works come from a scope of 25 disciplines. This highlights the fact that the topic is relevant and draws diverse scholarly attention. Finally, the distribution in time shows an increasing interest on the topic after the year 2000, with a notorious increment after 2014. --- Discussion: outline of a hybrid socio-technical system Our inquiry builds on the assumption that hybrid systems emerge from the diverse possible ways in which technoscientific and indigenous/local socio-technical assemblages interact. We analyse the literature in the search of patterns. These patterns refer to categories that show different ways of interaction between knowledges taking place around sustainability initiatives . We take these interactions as plausible sources of an empirical inventory depicting the ways epistemic diversity is actually performed, and that its analytical grouping outlines a model of a hybrid socio-technical system, where knowledge circulation patterns at both the niche and the regime levels ignite hybridisation processes. --- Interaction patterns in a hybrid socio-technical system --- Niche At the niche level, we have identified encounters that take place around individual, project-sized, specific objectrelated processes. These should not be understood here as single or particular actions, but as generalisable examples of frequent arrays of practice by means of which standardised practice and institutionally recognised actors create relational patterns. Niche-level processes suggest grounded categories of scientific research, local valorisation and co-design. Scientific research : Research-oriented interactions are those driven to produce systematic scientific accounts about local or traditional embedded knowledges. These works relate to understanding, translation or diffusion of such knowledges. The scale of such accounts vary, depending on disciplinary approaches or object scales. Although scholar involvement varies in such works, most of the inquiries are set to the extent to provide a detailed stocktaking of an object at hand. In such cases, Selected works refer to rather broad topics, such as agroecology , indigenous sustainable innovation and entrepreneurship , food systems , environmental care and knowledge , and inclusion Some other works tackle very specific matters, for example, the features of Moriche palm , riparian forest reforestation , the Khettara water supply system , analysis of indigenous sayings for species protection and the legitimation of beliefs in hunter-gatherer societies . The potential of indigenous knowledge is discussed, for example, showing what negotiation configurations would make it possible to balance indigenous and scientific actors towards sustainability in natural resource management in Taiwan . Features or values of indigenous knowledges are usually shown, for example, discussing ancestral knowledges unveiling in processes of climate change adaptation in Zimbabwe and in medicine and food as a wise agrobiodiversity strategy taking place in Colombia . Sometimes, researchers develop these accounts from critical positions towards scholar canons or other hegemonic discourses. This aspect has further consequences, as will be discussed below. Later works in this line build on the notion of traditional ecological knowledge . Co-design : Co-design initiatives discuss collaborative settings in which local/indigenous and external actors partner to develop solutions fitting to local challenges, profiting from diversity and encounter between knowledges. Most often, the works in this category document single cases that refer to a specific action-oriented collabora- tive experience. This shows diverse settings for reach, scope, leading actors and settings of the partnerships. These works often have a focus on the methods set in motion to mix various knowledge sources and/or the hybrid features of the collaborative inputs and outcomes . --- Regime level We also identified works that discuss features of regimelevel arenas or institutional conditions. The kind of phenomena studied in these works exceeds the territorial and local reach to impact into the broader institutional or socio-technical dynamics of sectors, regions or countries. At the regime level, we identified the following grounded categories: displacement, usurpation, strategic use, straddling, positioning, hybrid science and hybrid products. --- Displacement : Displacement accounts for gradual displacement of local or indigenous knowledges. These works have a broader reach, detailing the means by which features of a dominant socio-technical regime stand at odds with local or indigenous knowledges. Rather than pointing at specific threats, these accounts describe sectoral/ institutional patterns. The scale of the discussions varies, including international commerce negotiations , national productive models , or political tensions arising from multicultural settings . The cases in this category depict exogenous knowledges as embedded in sets of practice and institutions, displayed on diverse sectors and territorial settings, gradually hampering quotidian efficacy of traditional knowledges. Usurpation : Usurpation refers to broader patterns by means of which the dominant socio-technical regime usurps local or indigenous knowledge. The cases here show exogenous actors/practices/institutions set in place as devices that allow misappropriating or abusing local/ indigenous knowledges/practices/land/workforce, often profiting its value while hampering locals' rights to ownership. A case in point comes from the global intellectual property regime, raising a case for rooibos tea . Straddling : Straddling accounts for the coexistence of parallel local/indigenous and exogenous institutions. Here, rules of the game are diverse starting on the principles, means and ends of justice. Institutional complexity is embedded in contradictions at the level of formal rules, policy or programs. Extrapolation of this notion to forms of political and economic organisation brings about the broader institutional effects of epistemic diversity. Strategic use : Works under this category describe local absorption of technologies from the techno-scientific regime. These cases document a gradual, but strategic indigenous adaptation, absorption or profiting of exogenous technologies and practice. Such processes support indigenous peoples' development or strategic positioning. Cases in point include grassroots innovation using drones for indigenous-lead mapping and monitoring or the use of information and communication technologies by indigenous civil society . Positioning : Positioning is a form of valorisation of local actors/ initiatives/stances at a wider level. This is, beyond particular or specific accounts of local knowledge or initiatives. Positioning strategies are often mixed/supported/sourced by others' languages , elaborating on the ways local/indigenous actors/initiatives/stances the dominant socio-technical regime. Positioning signals at scales beyond the local where the local actually plays a role. Some works refer to local positioning discourses, strategies and means towards controversial topics or societal affairs. This is the case, for example, of seeds , genetic resources , common resources or places . Some others relate to institutional processes, as the case of educational policy or legal controversies . Finally, some works refer to scholarship, such as discussions about cross-cultural work and overlaps or controversy in the interface Western/indigenous knowledges related to sustainability . Positioning strategies broaden the wealth of knowledge upon which public problems are understood and tackled. It widens the scope of available options as well as the political implications of policy choices. In the case of sustainability transitions, positioning processes point to indigenous/local knowledges' intrinsic merit and draw attention to its fruitful dialogue with/within Western views on cultural and ecological sustainability. Hybrid science : Hybrid science refers to forms of scientific practice that are sympathetic to valorisation/hybridisation with indigenous/local knowledges. Hybrid science often develops from critical or alternative stances. Yet it often takes part of mainstream scientific practice or creates room for educational or research programmes and within the techno-scientific prevailing system. As said before, some of these works link to valorisation efforts, as it is the case of agrarian/environmental grassroots movements against regional planning regulations in Santiago del Estero in Argentina , and the epistemic exploration on sourcing alternative therapeutic views from Yuruba Orisha traditions in the African diaspora . Other scholar works adopt critical stances and provide broader systemic readings on political ecology and power relations and social movements . A different stream relates to works that discuss alternative views, often in the attempt to being comprehensive by combining available knowledges as feasible solutions for sustainability. Some cases in point include initiatives related to agroecology , entrepreneurship and food value chains . Hybrid objects : Hybrid objects account for the co-production of hybrid artefacts, created out of hybridisation processes between parties of diverse socio-technical regimes. Solutions at this scale should not be understood as specific artefacts, but as institutional, technological or methodological products by means of which diverse socio-technical regimes link in the search for social or technological solutions that allow coexistence. Some of these hybrid objects can be found in ethnic-health programs , natural resource co-management and natural resources infrastructures . --- Landscape The landscape level is understood as an external structure or context for actor interactions, in which deep structural trends and other local variables are set . It is likely that some of the regime-level identified works have in some contexts such reach and extent . For the sake of discussion and in terms of creating a chance of discussion from an open model, we rather prefer to argue that regime-level antagonistic positions could embed critical stances aiming at such a degree of change . Table 3 presents an overview of the totality of the assessed works, classified according to each of the grounded categories. This graphic model is set on Geels' long-term development socio-technical framework, the multi-level perspective . As a representation of a socio-technical system, the graphic model illustrates a circulation flow, by means of which knowledges and technologies are created, processed and institutionalised in a specific socio-technical context. --- Knowledge circulation patterns in a hybrid socio-technical system There is a fundamental difference with Geels' approach, though. The flow of this hybrid socio-technical system has a particular dynamic of knowledge circulation. It assumes the 'usual' techno-scientific knowledge circulation flow, in which niches emerge into the regime level. At that point, it starts a twofold flow, a linear/circular flow, by means of which the techno-scientific assemblage starts interacting with other socio-technical assemblages. Visually set in this fashion, the imagery conveys a more nuanced depiction of the relations and power struggle between socio-technical systems. In other words, this view instils the decolonial standpoint into the model. In the linear flow, the techno-scientific socio-technical system deploys its inertia as a whole towards other assemblages. There is a stream of input/reaction by means of which the techno-scientific assemblage triggers and embeds different sorts of effects in contact/relation to indigenous assemblages. In the circular flow, the interactions start at niche level as specific or local modes of interaction. At regime level, the interaction creates wider sets of societal patterns and institutional structures. The configuration as a whole brings about a hybrid socio-technical system: one in which variegated directionalities, created by epistemic diversity interactions, create the intrinsic tensions of a contentious socio-technical system. The model feeds itself by ways in which niche-level phenomena escalate into regime-level phenomena. There is a sense of evolutionary/institutionalising process taking place, by means of which niche-level phenomena become regimelevel features . In sum, given a long-term socio-technical circulation flow within the system, the place, locus, and reach of interaction --- Constructive tensions in hybrid socio-technical systems We will now discuss the suggested model in terms of epistemic diversity and hybridisation. The section aims at assessing if, and how, epistemic diversity shapes different kinds of interactions in socio-technical systems, and if, and how, hybridisation shapes different kinds of patterns in a socio-technical system. The results discussed above bring about a comprehensive view of how practice and understanding of sustainability is set in hybrid settings. The findings show different kinds of interaction by means of which the hybrid socio-technical system is performatively constructed. Such interactions provide evidence of the starting stances of diverse epistemes towards the interaction, its disposition and possible tones and mishaps. Hybrid socio-technical systems evidence the paradoxical coexistence of its constitutive knowledge assemblages. Two sets of constructive tension arise as features of a hybrid socio-technical system. A first set refers to the directionality that the involved actors intend. This describes the extent to which actors' intentions performatively imply shaping a hybrid system. This is, if their intentions deliberately link to epistemic diversity and its development, or if their intentions are indifferent to or against hybridisation. A second set relates to the tensions arising from such directionality, i.e. the extent to which such tensions are conflictive. Figure 3 illustrates this idea. It shows how actors' performativity, both by directionality and its tensions, leads to overlapping hybrid forces that affect the socio-technical assemblage. Axis Y describes directionality towards hybridisation. This is the extent to which performative actions in the knowledge circulation flow link to hybridisation structuring processes of the socio-technical system. Possible directions include hybrid construction, non-hybrid construction or drift. These directions express the disposition of actors towards others', but also, de facto views towards the means or ends of sustainability. Axis X describes directionality towards conflict in the hybrid socio-technical system. This is the extent to which performative actions in the knowledge circulation flow stand in conflictive, neutral or flourishing grounds in relation to other sources, stances and actors. This axis expresses the Fig. 2 A multi-level perspective of hybrid socio-technical systems. Authors, expanding on Geels tensions taking place in the becoming process of a hybrid socio-technical system. From this point of view, the paradoxical nature of hybrid settings implies that each type of encounter performs a potential tension within the web of relations in a hybrid socio-technical system. It implies that hybrid socio-technical systems evidence a condition of intrinsic constructive tensions. --- Knowledge governance challenges of hybrid socio-technical systems in sustainability transitions Building on existing socio-technical system approaches, discussions on sustainability journeys tend to assume a stable configuration at regime level, and therefore a rather expected dynamic taking place in the processes of niche initiatives evolving into regime-level practices. Our findings wave a signal to a less structured dynamic that takes place in hybrid socio-technical systems, by means of which a configuration of epistemically contentious assemblages is set beforehand in and around the understanding of and addressing sustainability challenges. The hybrid socio-technical system paradoxical nature risks enabling contradictory, non-viable or illegitimate transition pathways. While the extent of conflict in a non-hybrid regime relates to a transition process that brings winners and losers , the extent of conflict in a hybrid socio-technical system starts where performative embedded practices from one or other 'side' of the hybrid system are able to deploy forms of epistemic violence. Intended means for sustainability transitions could be part, in the end, of such violence. Controversies about seeds are a case in point . A last aspect worth discussing brings about a reflection on science in hybrid socio-technical systems. Findings hint at the fact that, although it is a highly standardised practice, science is able to adhere to a variety of ethos. We are not referring here to Merton's ethos, a notion concerned with the institutionalisation of scientific practice . We are rather pointing at the ways scientific intentionality relates to other knowledges as much as to world creating, as its contents imply one or another form of intentionality . Here, it is visible how such intentionalities play as means of paradoxical forces of hybridisation, with direct effects on the contents, emergence and legitimacy of the contentious regimes that overlap in the hybrid system. --- Conclusion: towards a research agenda on hybrid socio-technical systems We have provided a nuanced view of the ways in which indigenous and techno-scientific knowledges interact and reflected on the implications of such interactions for sustainability transition processes. The inquiry has added heuristics to scholarly and policy work in innovation systems , and more specifically, in those where indigenous peoples and knowledge and diversity issues are a frequent public issue. Our findings have shown the core features of hybrid socio-technical systems. We have discussed the diversity and eventual divergence of directionalities in the means, products, processes, features and forces that take place in such systems. A kind of multiplicity that pervades the socio-technical system both at niche and regime levels . Such diversity embeds paradoxical tensions, which appear as a result of different directionalities towards hybridisation in a hybrid-non-hybrid continuum, as well as different performative modes of epistemic diversity in which coexistence between knowledges implies flourishing, indifferent/ neutral or conflictive trends. However, due to the limitations of this inquiry as a theoretical experiment, further research is needed. First, assessments and adjustments of the resulting analytical insights are required. It is possible to think that empirical or disciplinary accounts deepening on the grounded categories discussed above could bring about a better understanding of the nuances of each category as well as of the ways in which each of them interacts with other categories. Also, deepening on the empirical understanding of paradoxical tensions towards conflict and hybrid directionality. This may include understanding the conditions that facilitate or block sustainability transition pathways and understanding knowledge governance structures in which diverse knowledges play a role and the likelihood of their scalability. A second research area relates to policy. On the one hand, our findings suggest that there are features at the regime level that are worth a closer study, such as policy coherence and coordination at a cross-sectoral level . It is likely that deeper layers of epistemic divergence, embedded in institutional arrangements, facilitate or hamper certain sustainability transition pathways beyond specific sectors. On the other hand, it is worth taking a deeper look into the specific realm of science and technology policy: not just to assess whether and how, it is able to embed epistemic diversity, but also to understand under what conditions it is able to push sustainability transition pathways that profit epistemic diversity. This discussion is relevant to the different policy frameworks , but especially relevant to transformative innovation policy. As a policy framework, transformative innovation policy emerges with the search for urgent responses to achieve sustainability, as posed by Sustainable Development Goals and Grand Societal Challenges in the 2010s . Transformative innovation policy translates into policy incidence the experimental approach of sustainability transitions . This experimental approach of transformative innovation policy could be able to profit objects for more fitting hybrid co-production in terms of i) the positionality and expectations of the policy workers in the hybrid socio-technical regime; and ii) the scale and place of experiments in the hybrid socio-technical regime and its possible short-and long-term risks. --- Data availability The paper includes enough data. Further processing files are available on request. ---
A wealth of scholarly work has contributed to make visible and describe the place of indigenous peoples and knowledge in sustainability transitions. We follow suit, exploring if, and how, indigenous peoples and knowledges take part in the construction of hybrid socio-technical systems, i.e. socio-technical systems where heterogeneous knowledges already coexist and give rise to the emergence of specific and nuanced socio-technical patterns. We address the question: What are the types of interaction between techno-scientific and indigenous/local knowledges in socio-technical configurations aiming at sustainability? Our inquiry focuses on knowledge circulation patterns in hybrid socio-technical systems. Conceptually, we build on epistemic diversity and hybridisation as means to reflect on socio-technical systems. Empirically, we carry on a theory-driven literature review and ground a model on the backdrop of the MLP perspective. Results show that hybrid socio-technical systems present overlapping socio-technical assemblages coexisting in constructive tension. Such tension stems from the manyfold possible directionalities that take place in the social production of hybrid-oriented and non-hybridoriented performativity of knowledges. This paradoxical nature implies that each encounter performs a potential tension within the broader web of relations in the system. In terms of sustainability transitions, hybrid socio-technical systems pose particular knowledge governance challenges. Its paradoxical nature risks enabling contradictory, non-viable or illegitimate transition pathways towards sustainability.
Background The ratification of the United Nations' Convention on the Rights of the Child and the adoption of the Sustainable Development Goals document the international community's efforts to protect all children from any form of violence in their environment. Notwithstanding, it has been estimated that more than 300 million children experience severe forms of violence during their upbringing [1]. In school settings, where children and adolescents spend most of their time apart from their families, they may also face violence by school staff [2]. Teachers frequently use different acts of physical and emotional violence against children in order to regulate or correct misbehaviour [3]. These violent disciplinary measures may include beatings with the use of hands or objects, such as a cane or stick, shaking, pinching or kicking students, forcing them to adopt painful bodily postures for a long time as well as public humiliation [4,5]. Such violence by teachers inflicts severe physical and emotional suffering and pain on children and may adversely affect their mental health, psychosocial functioning and academic achievement [6][7][8]. --- Global perspective on violence against children by teachers Violence against children and adolescents in schools is a global problem, which is illustrated by the fact that the use of physical violence by teachers is legally accepted as a disciplinary measure in 64 countries worldwide, mostly low-and middle-income countries in Africa and Asia [9]. Systematic reviews indicate high lifetime prevalence rates of more than 70% and up to 100% for physical violence by teachers in low-and middle-income countries, particularly in sub-Saharan Africa [5,10]. Notably, prevalence rates were also high in countries where physical violence in schools is unlawful, suggesting that a legal ban may be a necessary, but not sufficient condition for ending the use of violence against students. The reliance on small, non-representative samples and crosssectional assessments as well as the lack of rigorous methods are noted as major limitations of available prevalence studies [10]. Similar to physical violence, studies from various countries including Turkey, South Korea, Bangladesh, Uganda, Tanzania and Nigeria reported high rates of emotional violence by teachers ranging from 18% up to 100% [6,8,[11][12][13][14]. --- Factors contributing to teachers' use of violence against children in sub-Saharan Africa The consistently high prevalence of physical and emotional violence by teachers in primary and secondary schools in sub-Saharan African countries can be attributed to multiple structural, institutional, community, interpersonal and individual factors, which interact in a complex and dynamic manner [15,16]. A legal framework may deter teachers from using violence against students due to fear of repercussions. However, social norms, beliefs and approval from authority figures condoning the use of violent discipline by parents, teachers and other adults in the community to educate children are particularly widespread in many societies in sub-Saharan Africa [17]. Accordingly, quantitative and qualitative data from various African countries suggests that teachers perceive violent discipline as an effective and acceptable way to exercise power over, enforce discipline and instill respect among students, but also to motivate them and foster learning opportunities [18][19][20]. Positive attitudes towards violence have been shown to mediate the association between African teachers' stress [21] as well as their own experiences of violence [22] and their use of violent discipline methods against students. Also, the working conditions often found in schools in sub-Saharan African countries are important sources of teachers' stress that in turn contributes to their use of violence against students [14,23]. Work-related stressors including overcrowded classrooms, low wages, insufficient school equipment, work pressure and hierarchical authority structures have been linked to higher levels of perceived stress as well as lower motivation and job satisfaction among teachers in various African countries [24][25][26][27]. In addition, students' emotional and behavioral problems may trigger emotional and physical violence by teachers [10]. Notwithstanding, inadequate training may lead to teachers lacking knowledge about non-violent discipline methods and support strategies for troubled students [28][29][30], although other evidence suggests that Kenyan teachers were aware of alternative methods, but considered them ineffective [20]. --- Effects of violence on child development Extant research has documented the detrimental shortterm and long-term consequences of child maltreatment including physical and emotional violence on children's development, health and functioning over their life course, including low self-esteem, internalizing problems, e.g. depression and anxiety, externalizing problems, e.g. attention problems and antisocial behavior, substance abuse, suicidality, physical injury and chronic morbidity, impaired cognitive ability, poorer academic performance, lower socioeconomic well-being as well as ongoing victimization and perpetration of violence [31][32][33][34]. While most of these studies focused on children and adolescents' victimization in the family context, recent reviews found comparable negative effects of physical violence by teachers in schools including physical injury and even death, poor academic outcomes, mental health and behavioral problems [5,10]. The available studies focusing on emotional abuse by teachers have reported similar effects [35][36][37]. Importantly, the observed associations between exposure to violence by teachers and poorer performance on tests of academic skills, verbal, and educational functioning suggest that violence by teachers may interfere with children's capacity to learn and thrive at school, thereby contradicting the practice's intended purpose of improving discipline and school performance [5,10,38]. Moreover, the hostile and humiliating environment created by violence in the classroom increases children's feelings of fear and dislike of school, which may lead them to avoid or even drop-out of school [5,38]. These detrimental effects translate into enormous costs to societies, e.g., stemming from lower income and productivity and higher expenses for social and health services [5]. --- Preventative interventions targeting violence by teachers The high prevalence of violence by teachers observed across various cultural settings and its detrimental consequences for the individual victims, their families, communities and societies call for joint global and national efforts targeting multiple levels, including legislative reforms prohibiting and sanctioning the use of violence at schools, public education and awareness programs about the negative consequences of violence, the strengthening of structures for reporting the use of violence at schools and the provision of alternative non-violent discipline methods to educators [5,39]. Global and continental initiatives such as goal 16:2 of the United Nations' Sustainable Development Goals 2030 [40] and the African Charter on the Rights and Welfare of the Child [41] may pave the way for legal and political changes. However, there is also a high need for preventive interventions at the school-level to reduce the use of violence by teachers and school staff against children and adolescents, particularly in sub-Saharan African countries where violent discipline at schools is both highly prevalent and socially accepted [4,17,42]. Notwithstanding, although nongovernmental organizations have recently introduced a number of programs in low-and middle-income settings, few of them have been rigorously evaluated in terms of their efficacy to reduce violence by teachers [5,43]. For instance, in Jamaica, the Irie Classroom Toolbox intervention has been recently evaluated in a clusterrandomized controlled trial in 76 preschools [44]. The intervention does not explicitly target teachers' attitudes towards violence but aims to reduce violence against children by promoting teachers' socio-emotional competence and equipping them with positive non-violent discipline techniques. Observations of teachers' behavior showed that teachers in the intervention group used significantly less physical and emotional violence against children directly after the intervention and at 1-year follow-up compared to teachers in the control group [44]. A small cluster randomized trial of an adapted version of the Irie Classroom Toolbox in 14 Jamaican primary schools further showed that grade 1 primary school teachers in intervention schools used significantly less violence against children than teachers in control schools [45]. In the context of sub-Saharan Africa, the most rigorously evaluated intervention to date is the Good Schools Toolkit, which has been tested in a cluster randomized controlled trial in 42 primary schools in Luwero district in Uganda [2,46]. The Good Schools Toolkit promotes the use of non-violent discipline techniques through a range of activities implemented at the whole school over an extended period of time. The results of the evaluation trial showed significant reductions in the past-week prevalence of physical violence as reported by students and by school staff in intervention compared to control schools at follow-up [46]. We argue that interventions to reduce violent discipline at schools in sub-Saharan Africa should primarily work with teachers as the ones who actually use violence, focusing on both changing teachers' attitudes towards violence and providing them with alternative nonviolent discipline strategies. Moreover, interventions need to be brief, require relatively few resources and emphasize transfer of intervention content to teachers' daily work in order to support dissemination in lowincome settings. In addition, interventions should be applicable to a wide target group of teachers and students, i.e., different educational stages . The intervention Interaction Competencies with Childrenfor Teachers meets all these criteria. Based on attachment, behavioral and social learning theories, ICC-T aims to reduce the use of physical and emotional violence by teachers against students and to improve teacher-student interactions by enabling teachers to learn and practice essential interaction competencies with children [23,42]. Cluster randomized controlled trials at primary and secondary schools in Tanzania and Uganda have provided initial evidence for the feasibility and effectiveness of ICC-T to decrease teachers' positive attitudes towards violence as well as student-and teacher-reported use of violence against students [3,4,42]. In a trial at Tanzanian primary schools, ICC-T also led to a reduction in studentreported victimization by peers, suggesting a spill-over effect of the intervention on peer violence [42]. --- Aims and objectives Given the paucity of scientifically evaluated interventions to reduce violence by teachers against children and adolescents in general and in sub-Saharan Africa in particular, we aim to evaluate the effectiveness of the preventive school-based intervention ICC-T at primary and secondary/junior high schools in Tanzania, Uganda, and Ghana. In doing so, we aim to consolidate initial evidence on the feasibility and effectiveness of ICC-T in primary schools in Tanzania [23,42] as well as secondary schools in Tanzania [3] and Uganda [4] and to provide a first rigorous evaluation of ICC-T at primary school level in Uganda and in different school types in a country outside of East Africa . Importantly, the three countries do not only differ in terms of cultural and societal background but also to what extent violence against children is legal. For instance, in Tanzania violence is still legal in all settings, whereas in Uganda and Ghana it is officially not legal at school [47]. However, recent national survey data indicates similarly high prevalence rates of school violence against children in all three countries [48][49][50]. As the ongoing higher use of violence by teachers irrespective of the legal circumstances can partly be attributed to societal norms and beliefs favouring violent discipline and the lack of knowledge about alternative non-violent discipline methods among teachers, interventions jointly addressing these challenges are likely to be particularly effective in reducing teachers' use of violence. Therefore, we hypothesize that the implementation of ICC-T will reduce the use of physical and emotional violence by teachers across educational settings, societies, and cultures in sub-Saharan Africa. We also expect the ICC-T intervention to have a positive impact on children and adolescents' functioning . --- Methods --- Design Using a two-arm multi-site cluster randomized controlled trial , this study will include a total of 72 schools . Half of the schools [36] will be randomly allocated to the intervention group, which will receive the ICC-T intervention, and the other half to the control group, which will receive no intervention. The study will adopt a longitudinal design and involve three data collection phases: baseline assessment directly before the intervention and two follow-up assessments approximately 6 months and 18 months after the intervention . --- Study setting and sampling The study will be carried out in public primary and secondary/junior high schools in Tanzania, Uganda, and Ghana. A multi-stage sampling procedure was applied to ensure a sample of schools that can be considered representative for each country in terms of geographical, socio-economic, and political aspects. At each stage, the respective sampling units were weighed by their number of schools according to probability-proportional-to-size sampling. First, three administrative zones were randomly selected in each country. Next, one region in each of the selected zones in each country was randomly selected. In the next step, one district in each of the chosen regions in each country was randomly selected. The selected zones, regions and districts per country are displayed in Table 1. --- Schools In each of the selected districts, schools meeting the following criteria will be eligible for inclusion into the study: 1. Public, day-care and mixed-gender primary and secondary/junior high schools. 2. At least 40 students in the selected class/stream . In case a selected school has less than 40 students in a class or stream, it will be combined with a neighboring public school to a school cluster and 20 students from each school will be selected. 3. At least 15 and no more than 50 teachers at a school. In case of less than 15 teachers, a school cluster with a neighboring school will be formed and all teachers officially working at these schools will be included. The upper limit of 50 teachers is due to practical difficulties related to providing the intervention to a higher number of potential participants. Official lists of available schools will be obtained from the relevant authorities and schools will be stratified based on school type and whether the school is in an urban or rural setting. The latter will be determined using the database Africapolis , which defines an agglomeration as urban if it constitutes a continuously built-up area with less than 200 m between buildings and its population exceeds 10.000. In the case of entirely urban districts, e.g., Mwanza in Tanzania, existing official classification on the ward level will be used. After listing the stratified schools in each district in alphabetical order, four primary and four secondary/junior high schools will be randomly selected in each of the three districts per country, implying a total of 72 schools . The stratified randomization based on school type and urban/rural location results in 36 sites or school pairs, in which one school will be randomly allocated to the intervention group and one school to the control group . All random selections of country zones, regions, districts, and schools as well as the allocation of schools to the two study conditions are performed by an independent researcher neither belonging to the core research nor the data collection teams. --- --- Procedures Before data collection, the research team consisting of psychologists from Bielefeld University and the respective partner universities in Tanzania , Uganda and Ghana will select fifteen research assistants in each country and train them in data collection in a one-week workshop. The research assistants are required to hold or currently pursue a university bachelor's degree, to be fluent in English and the local language and to have prior experience in research projects on social/health-related matters. The assessors will be blind to the allocation of the schools to the intervention and control groups. The assessment of students consists of a structured interview, a cognitive testing, and an assessment of academic performance and will take about one and a half hours. The assessment of teachers consists of a structured interview and takes about 1 h. In the interview, assessors will directly enter participants' responses into Android tablets using the survey software SurveyToGo [52]. The cognitive testing will also be administered to the students through the tablets, while the academic performance test will be administered in a paper-pencil format. All measures will be administered with standardized introduction and administration procedures to ensure high objectivity and reliability during data assessment. Following established scientific guidelines [53], all instruments will be translated from English to the respective ethnic local language by independent translators and then back to English by different translators. The back-translated instruments will then be compared with the original instruments to ensure correct translation and equivalence of the content. All interviews will be preferably conducted in the local language to ensure participants' full understanding, with the option to conduct the interview in English, for example if the local language is not the participant's mother language. Prior to data collection, selected students will receive a letter explaining the study aims and procedures together with an informed consent form to their parents to seek parental consent. Students whose parents have signed the informed consent form will be invited to an interview in a quiet and discrete setting in the school premises. Before the interview, each student will be given detailed written and oral information on the study procedure, the confidentiality of their data, and their right to withdraw from the study at any time without any consequences. The interview will only be conducted if primary school students provide their oral assent and secondary/junior high school students provide their written consent. Structured interviews with students will be conducted by assessors who have received specialized training in the assessment of children and adolescents. The assessment procedure will be repeated in the same way at 6-months and 18-months follow-up. Students can be considered masked throughout the study as the intervention only targets teachers. After being introduced to the study in a formal information session, all teachers at the selected school will be invited to participate in an interview. Teachers willing to participate will receive detailed written and oral information on the study procedure, the confidentiality of their data, and their right to withdraw from the study at any time without any consequences. Upon providing informed consent, the interview will be conducted in a quiet and discrete setting within the school setting. The assessment procedure will be repeated in the same way at 6-months and 18-months follow-up. Given the nature of the intervention, teachers are masked at baseline assessment, but unmasked at the follow-up assessments. Fig. 3 Sampling procedure in each study country. Note. Country*: the flowchart presents the selection procedure for only one country, but it applies to all project countries . The term "secondary" also includes junior high schools --- Intervention description The ICC-T intervention consists of a 5.5 days training workshop for teachers. The ICC training concept is based on the childcare guidelines of the American Academy of Pediatrics [54] and has so far been adapted and initially evaluated for caregivers working in institutional care settings and teachers working in primary [23] and secondary schools [3]. ICC-T aims at preventing harsh and violent discipline in the school setting and improving teacher-student relationship by changing teachers' attitudes towards the use of violence and enabling them to learn non-violent discipline strategies. The implementation of ICC-T is guided by four key principles: First, a participative approach encourages teachers to actively contribute to the training. Second, intensive practice is combined with theoretical input to enable teachers to integrate the acquired skills into their daily work routine at school. Third, a trustful atmosphere during the workshop assures confidentiality and invites participants to share and reflect upon their work-related problems, needs and personal experiences with violent discipline. Fourth, sustainability of the training is ensured through various activities including intensive practice and repetition of the content, self-reflection of personal behaviour, teambuilding measures, organisation of peer consultation and referral networks as well as ongoing support supervision. The sessions of the ICC-T training workshop focus on five core components that foster positive teacher-student relationship, reduce teachers' use of violent discipline and ultimately improve children's wellbeing: 1) Sessions about teacher-student interactions aim to promote teachers' empathy and understanding of their students' behaviour and to raise teachers' awareness of being a role model for students. 2) Sessions on maltreatment prevention aim to raise teachers' awareness of the negative consequences of violent discipline on children's well-being by inviting teachers to reflect on their own experiences of violence as a child and connect these experiences and associated feelings to the causes and consequences of their current violent behavior. This component is closely linked to the 3) sessions on effective discipline strategies, which aim to equip teachers with non-violent behavioral skills and tools helping them to maintain and reinforce desired behaviors and to change undesirable behavior by students. 4) Sessions on identifying and supporting burdened students intends to raise teachers' awareness for common internalizing and externalizing problems among students and to increase their ability to identify and adequately support students with these problems. 5) Sessions on implementation aim at integrating the learned knowledge and skills into everyday school life and at ensuring sustainability by establishing support networks such as peer consultation and collaboration with school counsellors. --- Intervention procedures The ICC-T intervention will be implemented in the selected schools by trained facilitators with a background in psychology and/or teaching. Participation in the training workshop will be free of charge. Participating teachers will be provided food and drinks as well as transport compensation of approximately 4$ per day. All teachers at a selected school will receive detailed written information on the training procedure, the voluntary nature of their participation as well as their right to withdraw from the training at any point. Teachers who agree to participate in the training will be asked to sign an informed consent form. Confidentiality of participants' personal data and information shared during the training will be ensured at any time. Treatment fidelity will be monitored in several ways. After each session, both facilitators will fill out a short purpose-built questionnaire including items on the session's duration, applied methods, and perceived uptake of the session content by participants as well as a checklist on possible deviations from the intervention manual and didactical aspects. Moreover, at the end of each workshop day, four randomly selected participants will be asked to fill out a purpose-built questionnaire on their perceived understanding of that day's training content and the helpfulness of the applied methods in delivering the content. In addition, all participants will be asked to evaluate the training contents and methods using a purpose-built questionnaire at the end of the workshop. Finally, two independent raters will evaluate video and audio recordings of pre-determined sequences of approximately 10 min to determine whether intervention workshops were implemented in line with the manual. --- Control No intervention will be implemented in control schools. The research team will be in close contact with the control schools to ensure that no similar intervention will take place at the schools during the study. Apart from the intervention, all data collection procedures at baseline and follow-up assessments will be implemented in control schools in the same way as in intervention schools. --- Outcome measures Our study aims to test the effects of ICC-T on teachers' use of violence in primary and secondary/junior high schools in Tanzania, Uganda, and Ghana. This primary outcome will be assessed by students' self-reported experiences of violence by teachers as well as teachers' selfreported use of violence against students. Secondary outcome measures include children's self-reported emotional and behavioral problems, quality of life as well as students' cognitive functioning. Additional outcomes will be students' experiences of peer violence, social competence and their educational performance assessed through standardized literacy and numeracy tests and grade records provided by the school administration. All outcomes will be assessed using measures that have been used in previous studies in sub-Saharan Africa with acceptable to good psychometric properties. Measures of cognitive and academic outcomes will be adapted to and pilot-tested in the specific study contexts. --- Children Exposure to violence by teachers Students' experiences of physical and emotional violence by teachers will be assessed using the Conflict Tactic Scale . The original CTS covers various methods adults use to manage conflictual situations with children including physical assault, psychological aggression, non-violent discipline, and neglect with 27 items. In the current trial, an adapted version of the CTS including 16 items on experienced physical violence, 7 items on experienced emotional violence and 3 items on witnessed violence by teachers will be used. The items are answered on a 6point Likert scale from 0 to 5 and will be asked referring to the past week. Subscale scores are derived by summing up all item scores. The CTS has been implemented in previous studies in East Africa to assess students' experiences of violence by teachers and has demonstrated acceptable psychometric properties [14,21,57]. --- Mental health problems The Pediatric Symptom Checklist -Youth Report will be used to assess children's emotional and behavioral problems. The PSC-Y consists of 35 items rated on a 3-point Likert scale from 0 to 2 , which can be summed up to a total score of emotional and behavioral problems ranging from 0 to 70. Factor-analyses of the parent-and youth-report version of the PSC revealed a 3-factor structure of internalizing problems, externalizing problems and attention problems [59,60]. Adapted versions of the PSC haven been used with HIV-infected children in Botswana [61] and school children in Uganda [62] with good psychometric properties, indicating the instrument's applicability in the sub-Saharan African context. --- Quality of life The will be used to assess children's perceived quality of life. The KIDSCREEN-10 conceptualizes quality of life as a multidimensional construct covering physical, emotional, social, and behavioral aspects of well-being and functioning. Children answer the 10 items referring to the past week on a 5-point Likert scale ranging from 0 to 5 . Having been extensively used in clinical and epidemiological studies in Europe, North and South America, Africa and Asia, the KIDSCREEN-10 has cross-cultural validity to assess children's and adolescents' self-reported quality of life [63]. Cognitive functioning We will use four classical tasks implemented in the Android application Psych Lab 101 [64] to assess different aspects of children's cognitive functioning: A visual search task to assess children's selective attention, a numerical Stroop task to assess children's ability to resist interference by distracting information, a delayed match-to-sample task to capture children's working memory and a continuous performance task to assess children's impulsivity. These tasks were chosen because they are independent of language and they cover "core" cognitive abilities that have been shown to be affected by exposure to maltreatment [65,66]. Prior to data collection, we will conduct a pilotassessment to ensure feasibility of the tablet-based assessment. Social competence We will assess children's social competence in two ways. First, we will assess children's social status in their peer networks using a wellestablished peer-nomination procedure, the social cognitive map technique [67]. This procedure asks children to name a group of children in their class to which they belong as well as other groups of friends in their class. Based on the number of nominations as members of a group, the social centrality status of individual children can be determined [68]. Moreover, children are asked to nominate three classmates they like most and three they like least, which yields an indicator of social preference status for each child. The SCM technique makes it possible to reliably identify social groups with proportions of respondents from a social network as small as 50% [68]. The technique has been successfully implemented in a previous study with primary school children in Tanzania [69]. Second, we will use the 8-item short form of the PROMIS pediatric peer relationship scale [70] to assess the quality of children's relationships with peers and friends through their selfreport. The items are rated on a 5-point Likert scale from 0 to 5 and refer to the past 7 days. The scale comes with good psychometric properties and has been used in various different cultural settings including a sample of child patients in Malawi [70,71]. Educational performance We will assess children's educational performance in two ways. First, we will use a standardized test of children's numeracy and literacy skills. Different test versions will be applied with primary school and secondary/junior high school children respectively to consider differences in levels of acquired skills and comprehension between the two age groups. The test for primary school children is based on standardized tests of numeracy and literacy skills developed by the Uwezo initiative [72]. These tests have been applied in large-scale surveys in Kenya, Uganda, and Tanzania to assess learning outcomes of primary school children. The same test will be used across all sites in Ghana, Uganda, and Tanzania, but some of the literacy tasks will be translated into the respective local language. In the absence of brief and contextually appropriate standardized tests of numeracy and literacy skills of secondary/junior high school children in sub-Saharan Africa, we will use a purpose-built test for this age group in our study. The included tasks will focus on essential numeracy and literacy skills independent of national curricula and will be evaluated by educational experts in the different study countries. The same test will be administered to all students and all literacy tasks will be in English as this is the language of instruction at the secondary/junior high school level in the three countries. Both the primary school and secondary/junior high school tests will be pilot tested in each country prior to data collection. As a second indicator of students' educational performance, we will record students' scores in core subjects in the last term exam from the school administration. Peer violence We will assess children's experiences of violence by peers using the 24-item version of the Multidimensional Peer Victimization Scale , which assesses the six subtypes physical victimization, verbal victimization, social manipulation, attacks on property, electronic victimization and social rebuff with four items each. The original 16-item and the 24-item version of the MPVS have shown good psychometric quality [73]. We will additionally assess sexual victimization by peers using four items from the adolescent version of the Sexual Experiences Survey [74]. Two items each will cover sexual harassment and sexual assault by peers. --- Teachers Teachers' use of violence We will use a modified version of the CTS to assess teachers' use of physical and emotional violence against students in the past week. The teacher version uses the same answer scale and scoring as the child version . The CTS has proven its usefulness and feasibility as a measure of teachers' self-reported use of violence in the classroom in randomized controlled trials [3,4,42] and observational studies [14,21,22] in Eastern Africa. Teachers' attitudes towards violent discipline We will use an adaptation of the CTS to assess teachers' positive attitudes towards the use of physical and emotional violent discipline. Each item is formulated as a statement beginning with "When students do something wrong, I think it is OK to …" and ending with the respective act of physical or emotional violence. The items are answered on a 4-point Likert scale from 0 to 3 . Subscale items are then summed up to yield scores for attitudes towards physical violence and towards emotional violence . The modified CTS has been used to assess teachers' self-reported attitudes towards violent discipline in Tanzania [3,22] and Uganda [21]. Purpose-built measures for ICC-T training evaluation As this study will be the first implementation of ICC-T on primary school level in Uganda and on any level in Ghana, we will also evaluate the feasibility of ICC-T in these contexts adopting the purpose-built measures as used in previous studies [3,23] and following the guidelines for feasibility studies by Bowen et al. [75]. In particular, the applicability of the training, i.e., participants' expectations about the workshop and its relevance in their daily work will be assessed before and directly after the intervention as well as at each followup. In addition, the acceptability of the training, i.e., satisfaction with the training and evaluation of new knowledge, and the integration of ICC-T core elements in their daily work will be assessed after the intervention and at each follow-up. --- Measures against bias Several measures will be taken to minimize the risk of bias and to increase the validity of the findings. First, the stratified random sampling procedure will counteract selection bias. Second, the thorough training of data collectors and the structured interview assessment using carefully selected and contextually appropriate instruments will reduce participants' reporting biases and increase the validity of responses. Third, as the allocation to intervention and control group will be executed at the cluster level and by the core research team following baseline assessment, those collecting data will be blind to the treatment conditions of the schools. Fourth, while teachers' reports of violence against students are likely to be biased in the same direction as the intervention effect, the use of students' reports of violence will provide a conservative test of the intervention effect [46]. Fifth, analyses will be carried out based on the groups as randomized to avoid incomplete accounting of participants and outcome events. Ghana in Ghana. To protect participants' identity, a pseudonymization procedure will be applied by assigning a numeric code to each participant a priori. Participants' data will be stored only together with their respective code in a password-protected folder on a secure server accessible only to the study investigators. The document linking the numeric codes to individual participants will be kept strictly confidential and separate from other data in a specific encrypted and password-protected file that will only be accessible to one pre-assigned research team member in each country who does not have access to pseudonymized data. This also refers to video and audio recordings of teachers participating in the intervention. Personal data will not be disclosed to any other person without the participant's permission or as required by the law. Behavioral intervention studies are minimum risk studies and we do not expect any adverse events as a consequence of the intervention itself. However, in case of any unexpected adverse effect, the researchers will document and report such occurrences to a trained psychologist on the research team. In case the problem is severe, the psychologist will report the problem to an independent monitoring and advisory board consisting of four experienced researchers within 1 week. Questions about experiences may evoke upsetting memories if the participant experienced similar events in his or her life. Participants who will experience any psychological distress during the data collection will be provided with psychological support by the trained psychologist on site. For participants who experience adverse or unexpected events, appropriate referrals and follow-up for specialized services and further management will be made on a case-by-case basis. The trial is overseen by a monitoring board, which ensures that the collection and management of data comply with ethical standards at any time. --- Data analyses Baseline assessment data will be used to provide information about the prevalence of maltreatment and violence in different settings as well as children's mental health and well-being. Longitudinal analysis will be carried out based on the groups as randomized . As drop-outs and missing data at follow-up assessment are likely given the longitudinal study design, we aim to apply full information maximum likelihood estimation to obtain unbiased parameter estimates. In our main analyses, we will investigate the effect of the intervention on the primary and secondary outcome measures in comparison to the control group. Due to the naturally nested data structure, we will apply multilevel analyses. Latent growth modeling or cross-lagged path models will be used to estimate the directional influence of violence by teachers on primary and secondary outcome variables over time. Results will be presented including appropriate effects sizes and with a measure of precision . Effect size η 2 ≥ 0.01, η 2 ≥ 0.06 and η 2 ≥ 0.14 will be considered to represent a small, moderate, and large effect, respectively [76]. --- Discussion The exposure to violence by teachers places children at risk of developing mental health problems, psychosocial and academic difficulties and thus contributes to a loss of social and human capital on a community and society level [5]. Considering that the prevalence of violence against children at school is particularly high in lowand middle-income countries, the prevention of violence by teachers may be an important element in efforts to foster socio-economic development in these countries. Studies conducted in sub-Saharan African countries indicate that physical and emotional violence by teachers and school staff characterize students' school life, including those where violence has officially been banned from schools [10]. This suggests that legal measures may be necessary, but not sufficient, to end children's victimization by teachers. Cultural norms, beliefs, and attitudes endorsing violence as an effective means of managing students' behavior as well as a lack of nonviolent discipline strategies are likely to contribute to the widespread ongoing use of violence by teachers in sub-Saharan Africa. Compared to legal and structural factors including poor working conditions, teachers' attitudes and specific behaviors may be more readily modified by prevention programs. This is also in line with the idea of a "bottomup" approach towards the prevention of violence, which considers schools as engines for societal change [77]. Notwithstanding, there is currently a dearth of scientifically evaluated school-based interventions that address these factors to reduce violence by teachers against students. The current study therefore aims to evaluate the effectiveness of Interaction Competencies with Children for Teachers at primary and secondary/junior high schools in Tanzania, Uganda, and Ghana using a MSCRCT design. Drawing on attachment and social learning theories and combining intensive practice with discussions in trustful and confidential settings, ICC-T aims to achieve change through two key mechanisms that complement each other. On the one hand, self-reflections about teachers own experiences of violence, discussions, role plays and theoretical input aim at increasing teachers' empathy with students, thereby enabling them to visualize the connection between violence and its negative consequences and facilitating a change of attitudes towards violent discipline. On the other hand, teachers are equipped with a repertoire of non-violent action skills and strategies to handle everyday situations in their classroom. Teachers intensively practice these strategies in role plays and actively elaborate ways how to integrate them into their daily work. By targeting both attitudes towards the use of violence and alternative non-violent strategies, we expect ICC-T to achieve a sustainable reduction of teachers' use of physical and emotional violence against students. Previous trials of ICC-T have provided initial evidence for its feasibility and effectiveness at primary and secondary schools in Tanzania [3,42] and at secondary schools in Uganda [4]. Like those studies, the current study will adopt a two-arm cluster randomized controlled trial design. However, it will extend the previous trials by including a larger number of clusters and a longer follow-up period of 18 months and by considering an additional educational setting and cultural context . In so doing, the study will provide a particularly strong test of the effectiveness of ICC-T and its generalizability across educational systems, countries, and cultures. Moreover, the longitudinal and experimental design including the controlled manipulation of violence by teachers through ICC-T will yield insights into temporal and causal associations between children's exposure to violence and their mental health, psychosocial, cognitive, and academic functioning. The use of nationally representative samples of students and teachers in each country will inform about prevalence rates of violence in the school setting. To quantify students' exposure to violence, we will not only rely on teachers' reports, which may be biased in the direction of the intervention effect, but also on students' self-reported exposure to violence, which can be considered a more conservative test of the intervention effect. The use of structured interview assessment and standardized cognitive and academic performance tests are likely to strengthen the validity of findings by reducing reporting and common-method bias. Notwithstanding, the study has some limitations. Due to the longitudinal and experimental nature of the study, attrition among participating students and teachers may occur. Reasons for attrition include possible transfer from one school to another, absenteeism, or a wilful decision to drop out. Although our power analysis considers individual attrition to a certain extent, we aim to keep it at a minimum. In a similar vein, we do not expect attrition on the school-level, which may nonetheless occur. We aim to minimize variation between study sites through standardized assessment and intervention procedures and through stratification based on school type and location. However, between-country differences may still account for considerable variation between schools. Furthermore, there are strong socio-cultural factors, attitudes, and beliefs that support the use of violence against children. The expected changes in attitudes and behavior can thus be considered only preliminary. Despite these challenges and limitations, we believe that this study will significantly contribute to the emerging evidence base on the feasibility and effectiveness of school-level interventions to reduce teacher violence in low and middle-income settings in general and of ICC-T in particular. Furthermore, the study will contribute to Pan-African [41] and global campaigns [9,78] to end all violence against children. Being a low-cost and easily applicable intervention, we believe that ICC-T will be of great interest to governments, non-governmental organisations, donors, and policy makers in sub-Saharan African countries and beyond. We hope that a successful evaluation of ICC-T across educational systems, countries and cultures will convince relevant stakeholders to scale up the intervention on a regional and national level and to integrate it in regular teacher training programs. --- --- Authors' contributions TH, FS, AK, FBM and GK designed the study. JS, ENT, MN and AKK made significant contributions to the study design. FS, AK, and TH drafted the manuscript. All authors have read and approved the final manuscript. --- --- --- Competing interests The authors declare that they have no competing interests. ---
Background: Violence has severe and long-lasting negative consequences for children's and adolescents' well-being and psychosocial functioning, thereby also hampering communities' and societies' economic growth. Positive attitudes towards violence and the lack of access to alternative non-violent strategies are likely to contribute to the high levels of teachers' ongoing use of violence against children in sub-Saharan African countries. Notwithstanding, there are currently very few school-level interventions to reduce violence by teachers that a) have been scientifically evaluated and b) that focus both on changing attitudes towards violence and on equipping teachers with non-violent discipline strategies. Thus, the present study tests the effectiveness of the preventative intervention Interaction Competencies with Childrenfor Teachers (ICC-T) in primary and secondary schools in Tanzania, Uganda, and Ghana. Methods: The study is a multi-site cluster randomized controlled trial with schools (clusters) as level of randomization and three data assessment points: baseline assessment prior to the intervention, the first follow-up assessment 6 months after the intervention and the second follow-up assessment 18 months after the intervention. Multi-stage random sampling will be applied to select a total number of 72 schools (24 per country). Schools will be randomly allocated to the intervention and the control condition after baseline. At each school, 40 students (stratified by gender) in the third year of primary school or in the first year of secondary/junior high school and all teachers (expected average number: 20) will be recruited. Thus, the final sample will comprise 2880 students and at least 1440 teachers. Data will be collected using structured clinical interviews. Primary outcome measures are student-and teacherreported physical and emotional violence by teachers in the past week. Secondary outcome measures include children's emotional and behavioral problems, quality of life, cognitive functioning, academic performance, school attendance and social competence. Data will be analyzed using multilevel analyses.
Introduction The present conjuncture is characterised by a multi-dimensional crisis featuring mass unemployment and social polarisation, significant and possibly protracted economic slump and escalating environmental crises as well as resurgent epidemiological terrors. 1 The picture is not closely comparable to the 1930s, yet the similarities and resonances are apparent-including, not least, in the field of environmental politics. The best-known type of policy programme that aims to simultaneously combat economic and climate crises, the Green New Deal , takes its name from Depression-era America. In this essay I approach the New Deal through the work of Karl Polanyi, and assess lessons for GND programmes. The essay begins by situating Polanyi against the sweep of twentiethcentury 'progress' and crises. Secondly, I inquire into Polanyi's environmentalism, noting some likenesses between his views and those that circulate within the degrowth movement 1 Pilot versions of this paper were presented at the 'Great Transformation At 75' conference, Bennington of labour union strength and welfare rights, and if democracy was globalising it was decidedly off-colour. The left, including all who took their cue from Polanyi, understood neoliberalism as social regression, a perception that gained further plausibility during the Great Recession of 2007-9 and the ensuing age of austerity. The conjuncture that is opening now, as I write these lines in May 2020, will be overshadowed not only by the recent tendency of global capitalism to sharper economic crises but also by its generation of biological and environmental threats on an escalating scale. That humans create conditions favourable to the thriving of epidemic diseases has long been apparent. In the earliest agrarian civilisations, the concentrations of people alongside livestock facilitated the transmission of pathogens and parasites, the generation of new zoonotic diseases-those that jump from nonhuman animals to humans . These processes sharply accelerate under capitalist conditions. As Rob Wallace spells out in Big Farms Make Big Flu , agribusiness 'has entered a strategic alliance with influenza.' Factory livestock farming establishes the optimal environment for pathogens to spread. Once a virus is in a chicken, duck or pig, the next hosts are easy meat: lined up cheek by jowl, with near-identical genes. The large majority of new or emerging diseases that infect humans have originated in wild or domesticated animals, and the last four decades have seen a two-to three-fold increase in zoonotic spillover events . In the case of Covid-19, the linkages from bat to pangolin to human appear accidental, but if we look behind the xenophobic headlines we see how system-conditioned they are. The aetiology of the crisis, in other words, was mapped by humanity's relationship to wilderness and its fauna under capitalist conditions. Almost all the world's wildernesses have been encroached and the primary forests have been decimated. Deforestation and other forms of habitat encroachment compress the remaining reserves of wildlife, bringing them up close to humans. Meanwhile the demand for luxury wild animal products continues. China accommodates a lucrative trade in wild animals for food and medicine; and, as the recent popular series Tiger King shows, exotic breeding programs and traffic in wild animals is not a preserve of East Asian or African nations but is thriving in the West too. In all these ways the coronavirus crisis is not simply 'natural.' Rather, it arises within a natural realm that has been ripped and striated by capitalist forces. 2The perils of Covid-19 are trivial in comparison with those of climate breakdown and biodiversity loss. Yet the epidemiological and environmental crises share some root causes, above all capitalism's predatory relationship with the natural environment. Climate change is predicted to drive 'substantial global increases in the passing of novel diseases from mammals to humans by 2070,' and will also greatly increase the range of insect-borne diseases . Both Covid-19 and climate change illustrate a troubling tendency to the downplaying of dangers where their amelioration would rub against corporate interests. The risks of climate breakdown are well known, they are existential, yet next to nothing is being done to mitigate them-as is shown graphically each month in the carbon dioxide measurements from the Mauna Loa observatory. Even in this year of coronavirus-triggered global slump, the expected emissions cuts are at best equal but more likely less than the rates of decrease required every year over the next decades to avoid disastrous climate impacts for much of the world . Similar applies to the threat of disease. Public health experts and social scientists have for years been warning of a repeat of a viral outbreak similar in scope and lethality to the 1918 pandemic . As with climate breakdown, many corporations and governments resisted these warnings, and Covid-19 caught them unprepared . --- Our ancestors' weird undertakings Polanyi is well known as a critic of the market system, but how should we characterise his approach to the natural environment? What filiations exist between his programmatic ideas and those of environmentalists today? Do his theories lend support to eco-modernisation positions, including on carbon markets, as Wim Carton contends, or to a degrowth approach, as argued by Diana Stuart and her colleagues ? One can find biographical and textual support for both positions. On one hand, Polanyi was a child of the Enlightenment. He was heavily invested not simply in the bourgeois conception of Progress but also, in his younger years, in the belief that economic growth, political democracy and the market economy march hand in hand. Later in life, in the 1930s, his socialist vision acquired a heavy-industrial slant. He marvelled at the forced industrialisation of Soviet Russia. Rapid economic growth, he supposed, was a sign of that system's superiority over its rivals. On the other hand, one can read Polanyi as an environmentalist in sensibility, and even as a degrowther avant la lettre. 3 Such a narrative would begin with his passion for Russian narodism when a youth. 4 It would note his fascination with scientific and technological advance but would emphasise his Romantic misgivings over the scientific revolution, which appeared to be troublingly outpacing humankind's moral progress. In one article he describes the oil industry as the 'fantasy monster of modern capitalism' which, like an 'iron worm is impossible to injure; it is a tank that crushes everything in its path.' In another , he criticises schools of thought for which 'machine production' had become 'a dogma,' one 'that regards the unlimited expansion of material welfare as a natural law.' In a third , he refers to 'the shadow' of economic development, which 'silences rather than reassures us.' The same article goes on, 'Today we openly admit that we are afraid. Tremendous uncertainty pervades our lives. […] The development of technology only adds fuel to our fear. Ten years ago we were happy if the news services were improved, traffic accelerated, or advances in chemistry were achieved; we were proud of the wireless telegraph, with which we were conquering space. We had faith in science, because it improved our welfare. Today the reverse holds true: when we discover new, modern explosives […] general staffs begin to compete with each other, with bombs filled with toxic gases. […] We no longer rejoice in technological progress but fear it. Instead of medicines, chemistry is producing poisons; instead of life buoys, technology is designing electric chairs.' 3 Polanyi also developed a critique of the concept of scarcity that degrowthers share. For him, scarcity is an empirical and socially constructed phenomenon; its presence depends upon natural and social factors and cannot be assumed a priori. It cannot be assessed independently of its meanings in a given cultural context. For development of this point, see Dale . This broadly Rousseauian outlook took shape during Polanyi's time in Budapest and Vienna but it gained its full form when he moved to London in the early 1930s. There, he threw himself into a debate on the social consequences of the industrial revolution in Britain. In one corner were those who deplored the harmful effects of industrialisation on the poor, and the violence of the socio-cultural rupture. In the other, the emphasis was on the all-round benefits of economic growth and the incremental character of socio-economic change. Polanyi sided forcefully with the first, and it was in developing his own distinctive approach to the debate that he came up with the theory of 'fictitious commodities.' This concept can be read as the core of his environmental political economy. It focuses on land, labour and capital , the trinity of the revenue sources identified in classical political economy. Labour, land and money, he writes , 'are essential elements of industry,' and in capitalist society the markets for all three 'form an absolutely vital part of the economic system.' Yet they are 'fictitious commodities,' in that they have not been produced for sale. 'What we call land,' he maintains , 'is an element of nature inextricably interwoven with man's institutions. To isolate it and form a market for it was perhaps the weirdest of all the undertakings of our ancestors.' The commodification of land did not, in Polanyi's analysis, prove immediately toxic to the natural environment. As an example he cites the USA prior to 1890, a society characterised by 'a free supply of land, unskilled labour and paper money' . This combination did not produce 'the lethal dangers to the fabric of society, to man and soil, which are otherwise inseparable from 'self-adjusting' capitalism.' Yet the nineteenth-century USA was an exception that proved the rule. The generalised logic of commodification was indeed ruinous. The 'transformation of the natural and human substance of society into commodities' leads to a profound 'dislocation' of social relationships which ultimately threatens our 'natural habitat with annihilation' . By subjecting land 'to the supply-and-demand mechanism of the market,' human society risks undermining 'the integrity of the soil and its resources, … the abundance of food supplies, [and] even the climate of the country which might suffer from the denudation of forests, from erosions and dust bowls' . Polanyi wrote nothing on the natural environment as such, and little even on nature-society relations, but this, his core thesis, carries a clear political-ecological thrust. A free market economy, he proposes in The Great Transformation , could not exist 'for any length of time without annihilating the human and natural substance of society.' Polanyi's contention is that constructing a global economy on the basis of commodified land, labour and money was a recipe for a disastrous 'disembedding' of economy from society, whereby the market came to dominate social life as a whole, bringing forth a sorcerer's-apprentice world of untrammelled market forces which, although human creations, lie beyond conscious human control. This lay behind the geopolitical strife, economic crises, and socio-political catastrophes of the first half of the twentieth century. The distinction between society and the market economy is normally thought of as the organising dichotomy around which The Great Transformation is constructed. Yet it maps to, and in the narrative is preceded and predated by, another contrast: of habitation and improvement . Polanyi found these terms in an English privy council memorandum of 1607, drawn up in response to widespread agitation-including rioting-over enclosures. The document recommends that some forms of enclosure should be permitted, so long as 'the poor man shall be satisfied in his end: Habitation; and the gentleman not hindered in his desire: Improvement' . In his construction of the habitationimprovement couplet, Polanyi is threading together three issues: social class, economic order, and the pace of change. He skates over social class rather briefly, but does make clear that wherever improvement carries the day, the gentlemen bend the economic order to their greed while 'the poor man clings to his hovel.' And what economic order is best suited to the desires of the gentlemen? Above all, an unregulated market system. Such a system tends to facilitate efficiency gains and economic growth, Polanyi suggests, but at the cost of 'habitation,' in its social and environmental senses. As a consequence of the 'vast movement of economic improvement' in nineteenth-century England, accompanied by the inevitable 'social catastrophe' , non-market institutions arose to defend the interests of habitation. It was this dynamic contradiction that he theorised as the 'double movement,' and at times he appears to see improvement as the accelerator pedal and habitation as the brake. Where socioeconomic change is 'undirected, ' Polanyi suggests , it tends to be too rapid, for upon the rate of change depends 'whether the dispossessed could adjust themselves to changed conditions without fatally damaging their substance, human and economic, physical and moral.' A process of undirected change, 'the pace of which is deemed too fast,' he enjoins , 'should be slowed down, if possible, so as to safeguard the welfare of the community.' In formulating political demands in the language of tempo, Polanyi's words have a conservative ring, and yet the portents of the new and more progressive society that he hoped to see were beginning to emerge during the Great Depression in Stalin's Five-Year Plans and Roosevelt's New Deal, both of which required rapid institutional change. In our crisis-ridden world today, it is clear that 'habitation,' in terms of human welfare and a habitable environment, requires a radical deceleration of capital accumulation and this, in turn, demands an equally radical pace of institutional change. With this in mind, let us turn to look in some detail at Polanyi's evaluation of the New Deal, and thence to implications for the initiatives that are today gathering under the banner of the GND. --- Polanyi and the New Deal Only Hannes Lacher and myself have studied Polanyi's evolving views on the New Deal in any detail and with attention to his unpublished writings. We both identify ambivalences and ambiguities. Polanyi, in Lacher's rendition , did not expect 'the New Deal to represent the final form of an economy embedded in society,' yet he 'certainly took it to be a first step in a gradual reassertion of the primacy of cultural and political institutions over the market.' In partial contradiction of this view, he goes on, Polanyi also came to see the New Deal as 'just a variant of "liberal capitalism"'-it did not 'constitute a re-embedding of the economy' . Polanyi, indeed, never 'considered … that the New Deal was embarked on a journey towards socialism' . Lacher makes much of purported discrepancies between our accounts. Yet to me these appear exaggerated. They rely on misrepresentations. 5 At least on the key points of interpretation, agreement reigns. My own account has appeared in separate strands ). I begin by noting that, initially, Polanyi was critical of Roosevelt, even accusing his 'Brain Trust' of advocating 'plan-economic fascism.' Yet before long he came to see Roosevelt's abandonment of the gold standard as a milestone in the global shift away from the straightjacket of liberal economics. By the Second New Deal he had turned enthusiast, and the Tennessee Valley Authority, organising public investment in rural electrification, made a terrific impression. He remarked on the 'important change' occurring in the position of the American working class, and prophesied that out of the depths of the Great Depression, 'a great transformation in the USA is growing.' This was, to my knowledge, his first use of 'great transformation.' It refers not only to the impending social changes in the USA, but to a worldwide transition, whereby all nations in the interwar period were developing into 'complete and coherent units, with closely interdependent parts' . As Polanyi explained, in a letter to his wife from the USA, 'The present world crisis is ultimately due to market-economy, as the first phase of industrial civilization. The past quarter century was a result of the dissolution of the international economic system based on that economy. […] The reform of the economic system had to be achieved on pain of destruction of society; the alternative was between a democratic or an anti-democratic method of achieving it. In Europe the democratic method proved unavailing; thus fascism became inevitable. America may be an exception, owing to the first years of the New Deal. Still-this is a world process; the reintegration of international life must still be achieved.' This letter anticipated the central argument of The Great Transformation. In brief, it runs as follows: liberal political economy bears fundamental responsibility for the collapse of liberal civilisation; the response to the collapse is taking a variety of forms, including fascism, Soviet communism, and the New Deal; in sharply divergent ways, reactionary and progressive, these movements are constructing institutions of national re-integration; the urgent need now is for integration to continue globally, in socialist and regionalist forms. In the USA that would mean a radicalisation of the New Deal, centred on the removal of land, labour and money from determination by market forces. Polanyi himself sought to play a part. Of his two objectives in writing The Great Transformation, he later recalled , one was 'to transplant into the English labour movement the spirit of the Austrian militant socialist workers' culture,' while the other was 'to give wings to Roosevelt's New Deal by an up-to-date critique of capitalism.' Far from radicalisation, however, in the late 1930s the New Deal found itself impeded. Its reform programmes, despite claims by some chroniclers today , did not bring 'the Great Depression to an end,' and prosperity had not returned already in 1933. Rather, growth flatlined, and unemployment remained at distressing levels until 1940. Many of the combative movements that had pressed for progressive change began to peter out, and the Republican Party gained electoral ground. The zenith of some radical initiatives, notably cooperative land-use planning, was not achieved until the early 1940s , but most New Deal programmes had been attenuated or reined in by then. Economic growth did eventually resurge, due to war mobilisation. As Polanyi saw it, the nation under Roosevelt was able to 'switch its industrial potential to war production in as many months as Hitler took years to do.' This, he believed , demonstrated 'democracy at its marvellous best.' Still, the question remained, could the war economy fundamentally transform economic relations? In 1943 he remarked to a friend that, in his understanding, the foundational triad of liberal capitalism-the fictitious commodities land, labour and money-had been abolished. Yet, either his understanding of decommodification was awry, or his spectacles were too tinted, for a capitalist war economy remains a capitalist economy. In sober mood, Polanyi noted that Roosevelt was shunting the USA and much of the world back towards 'the economics of the gold standard and free trade' , and at the end of the war he noted that the New Deal had barely 'affected the position of liberal capitalism.' Although it might yet 'prove the starting point of an independent-American-solution of the problem of an industrial society, and a real way out of the social impasse that destroyed the major part of Europe,' that day 'has not yet come.' Polanyi was right to note the post-war recrudescence of 'liberal capitalism.' Yet this was no simple reversal. The New Deal administrations had transformed the US state, before and during the war. Military spending reignited economic growth, and the broader exigencies of war reinforced the hands-on governmental practices that had been trialled in the mid-1930s. The Tennessee Valley Authority, through its contribution to aluminium production and the Manhattan Project's atomic bomb, exemplified one way in which New Deal infrastructure was hitched to martial ends . At a broader level, the New Deal-its ethos, sensibility, personnel and practices-led to the beefing up of America's state machinery, including new institutions of regulation and planning . It was embedded in the rhetoric of US aims in war and in postwar reconstruction, in the Four Freedoms and the Atlantic Charter, in Washington's wartime planning institutions and its post-war construction of administrative and economic capacities, as well as institutions of soft power in Europe, Japan and beyond . In these ways, the New Deal contributed to the legitimation of American power politics. As Fred Block has argued , the plans for international reform that sprang from the New Dealers, served to legitimise US imperial expansion in the aftermath of WWII, both among domestic liberals and abroad. Consider for example Roosevelt's Vice President, Henry Wallace. He was a New Dealer whose 1948 presidential bid Polanyi strongly supported , and also the bestknown booster for the US-led internationalisation of the New Deal. Destiny, he proclaimed , 'calls us to world leadership,' a role that required the USA to be more concerned 'with welfare politics and less with power politics, more attentive to equalizing the use of raw materials of nations than condoning the policies of grab and barter that freeze international markets, [and] more interested in opening channels of commerce than closing them by prohibitive tariffs.' In Wallace's vision of a global New Deal, colossal public works programmes would be unfurled, in the form of roads and airports and other infrastructure projects, which would bring tremendous profit to US business. 'American capital,' he exulted, 'can play a great constructive role-and a profitable role-in the development of the economies of other countries. It will provide us with enormous post-war foreign markets' . Other prominent New Dealers, notably Henry Morgenthau and Harry Dexter White, were key players in constructing the post-war architecture of world power, notably at Bretton Woods. Lacher's explanation is different. He believes that ambiguity entered Polanyi's strategic thinking, particularly in the final chapter of The Great Transformation, because whereas the book was aimed primarily at British and North American audiences, he was 'a revolutionary socialist on Britain and Europe, but less than a social democrat on America' . uses a less oblique phrase: 'a reformist socialdemocrat on America.') On this, my reading is different. Polanyi, on whichever side of the Atlantic he sat, embraced a radical but non-revolutionary socialism. By 'radical' I refer to his advocacy of a transformation from capitalism to a cooperatively ordered society based on the decommodification of land, labour and money and with a major role for economic planning. By 'revolutionary socialist' I understand a political strategy predicated on two axioms: capitalist states cannot be the vehicles of socialist transformation but must be confronted and ultimately dismantled, in a process that necessarily involves the active engagement of sections of the oppressed and exploited. With respect to , Polanyi evidently wished for the New Deal to veer left, yet he paid scant attention to the social movements that could effect such a turn, notably the labour militancy of the mid to late 1930s. Indeed, he played down those struggles. The US union movement, he suggested , is 'non-political'; it is 'almost state-made, a creation of the enlightened absolutism of Rooseveltian democracy.' As regards , Polanyi rightly receives acclaim for his thesis on the pivotal role played by states in engineering the market economy, but he paid little heed to the ways in which states in capitalist society are structurally geared to the interests and imperatives of capital accumulation. His analysis of the New Deal pays little attention to Roosevelt's strategies to defeat revolt , for he viewed the étatisme of the New Deal primarily as an element within a global structural shift. This approach was not, pace Lacher, distinctive to his views on the USA. It is a recurrent motif in his interpretation of twentiethcentury global politics. You find it for example in the duality in The Great Transformation between the 'conservative 1920s' and the 'revolutionary 1930s.' The terms designate not the scale or dynamic or success/failure of mass struggles but whether nineteenth-century institutions were being restored, as in the 1920s, or were being supplanted by dirigisme and economic nationalism-'revolutionary' moment as Polanyi saw it. The New Deal, I have suggested, strengthened America's institutional capabilities, enabling it to fight the war more effectively and helping to legitimise its worldwide expansion. It laid the platform for the export of the US model of capitalism: suburbs-expanding, aviation-addicted, gasoline-slurping, car-luvvin, grotesquely wasteful and hideously militaristic. The golden age of what some Polanyians call 'embedded liberalism' was a carbon age, in which environmental despoliation proceeded at breakneck pace. Greenhouse gas emissions increased more rapidly than during any other period of history, bequeathing humanity today with the urgent need for… well, a GND? --- A Red-Green New Deal One can distinguish four broad strategic approaches to climate breakdown. The first can be called 'callous indifference,' and is represented by Donald Trump. 'Climate breakdown, who cares? It may be a threat, it may not. Either way, we'll carry on trashing the planet, its future means nothing to us. Maybe environmental apocalypse will come? If so, there's nothing we can do to stop it. We'll fiddle as it all burns.' The second we can call 'rationalist liberalism.' It possesses at least a basic literacy in climate science and is hegemonic in the European Union. It advocates green capitalism and green growth, with emissions to be curbed through international agreement, technological investment , and changing patterns of consumption. It identifies corporate ecological responsibility as a key driver of change . For its part, government should steer and nudge industries and consumers using methods both fiscal and market based . Investments are typically tied to a national goal: to become an export leader in the dawning green new world. The third is the GND. It overlaps with rational liberalism-indeed one of the earliest usages in English was by a neoliberal columnist, Thomas Friedman -and in the oncoming economic depression this convergence is likely to grow. A straw in the wind is the pro-GND editorial position of the Financial Times , and there is scope for further convergence, either in a 'neoliberal Green New Deal' based around public-private partnerships, or in an economicnationalist version that prioritises eco-industrial supremacy. For the most part, however, GND supporters tend to alloy support for 'Hamiltonian' industrial policy with socialdemocratic values, and to place strategic emphasis on state regulation, green jobs programmes, and the 'just transition.'7 Its leading proponents include Alexandria Ocasio-Cortez and Bernie Sanders; it looks to trade unions for support, supports climate jobs programmes and, on its left flank, it includes anti-capitalists who envision a far-reaching transformation towards an egalitarian, sustainable and radically democratic society. The fourth is degrowth. As a social movement, it 'started in Lyon in the wake of protests for car-free cities, meals in the streets, food cooperatives and anti-advertising' . Degrowthers advocate fundamental social and economic change, including a sharp reduction in consumption in the rich world and a turn from industrial agriculture to agro-ecology and permaculture. Most of them emphasise change 'from below' and identify as feminists and anti-capitalists , although some adopt a more constrained, individual-ethical, agenda of frugal living . I see the degrowth movement as narodnik, in that it is centred around leftist intellectuals, with 'commoning,' 'small is beautiful' and 'back to the land' dispositions . Among degrowthers, references to Polanyi, in particular his 'embeddedness' theorem, is not uncommon . These four positions define the tragedy of climate politics as it is playing out today. The first is a death cult. Its proponents, in the USA, China and elsewhere, have promptly used the coronavirus crisis as a pretext to suspend or repeal environmental regulations . If they advocate any climate change mitigation at all, it is tokenistic and trivial. The second fetishizes technology, peddles consoling illusions in 'net zero' , ignores the problem of rebound effects, and wishes for renewable energy to power the engines of capital accumulation. Although an increasingly hegemonic project since the 1990s, it has been unable to navigate emissions reductions at anything remotely approaching the speed required. The gap between its laudable environmental goals and its abject failure to meet them is filled by magical thinking and torrents of greenwash. The third, the GND, is in danger of becoming little but a snappy brand name for the second, while the fourth possesses a clear-eyed view of the dimensions of the crisis, but its programmes struggle to find mass resonance. Early warnings of the hijacking of the GND arrived in 2008-9 when, in the midst of the Great Recession, South Korea and China launched 'green' stimulus packages. These, when you look at the small print, contained thimbles of ecological benefit but gallons of environmental despoliation, alongside large dollops of governmental and corporate spin . Both countries' carbon emissions continued to rise. A more recent example is South Korea's GND, announced by the incoming Moon Jae-in government in spring 2020. Over ten years, the plan would cut emissions by '37% below projected business-as-usual levels' . This may sound significant but it would not even meet South Korea's share of reductions necessary to fulfil the pledge in the Paris Agreement to limit global heating to below 2˚C. Moon's GND makes no mention of the need to phase out internal combustion engine vehicles, nor does it contain a plan to reach 'net zero' emissions by 2050 . Within a fortnight of its announcement, the Moon administration authorised a $2 billion bailout-with no social or environmental strings attached-of Doosan Heavy Industries & Construction, one of the world's largest coal exporters . In current discussion of the GND, what inspiration do its supporters find in Roosevelt's New Deal and war mobilisation? Front and centre is the government-led leveraging of economic transformation. As Ocasio-Cortez sees it , government could deploy the tools of the present but could turn to those of the New Deal: 'Tennessee Valley Authority-style public programs.' Relatedly, they look to the speed and breadth of war mobilisation. The war economy was not left to market forces. Planning played a major part. Government, with large-scale popular backing, directed big business to produce equipment for the war front, just as it could today on the 'climate front.' Government also suppressed entire industries , much as it could today . Although often forgotten, tremendously inspiring activity also occurred on the home front . That front, as the American socialist Mike Davis describes , constituted 'the most important and broadly participatory green experiment in U.S. history.' In the 1940s, he recalls, 'my parents, their neighbors, and millions of others left cars at home to ride bikes to work, tore up their front yards to plant cabbage, recycled toothpaste tubes and cooking grease, volunteered at daycare centers, shared their houses and dinners with strangers, and conscientiously attempted to reduce unnecessary consumption and waste. … Victory gardening transcended the need to supplement the wartime food supply and grew into a spontaneous vision of urban greenness and self-reliance. … The war also temporarily dethroned the automobile as the icon of the American standard of living [and] the bicycle made a huge comeback.' One could envisage a GND replicating this 'People's War'-for example by converting suburbia's lawns and golf courses to agro-ecological cultivation. A further lesson for the GND today, and one of which Polanyi was insufficiently aware, is that these transformative processes were driven by mass movements. The Roosevelt administration did not enter office with the intention of swapping orthodox liberal austerity for socialdemocratic programmes. A decisive factor was the movement upsurge of unemployed and working people. There were hunger marches, rent strikes and labour militancy, including use of mass pickets and frequently with communist activists in organising roles . As Naomi Klein relates , there was 'the Teamster Rebellion and the Minneapolis general strike in 1934, the eighty-three-day shutdown of West Coast ports by longshore workers that same year, and the Flint autoworkers sit-down strikes in 1936 and 1937.' It was this pressure from the left, she adds, that delivered the most progressive elements of the New Deal. Equally, the same period reminds us that where movement leaderships, in the desire to influence policy, tie themselves too closely to state institutions, their organisational and mobilising capacities tend to wither . These, then, are the sources of inspiration in Rooseveltian America for GND campaigners today, but the analogy has limits. In the war, capital could get fully behind Roosevelt's programme. Big corporations were eager to lead the war-time conversion process . They were primed to benefit from the massive boost in demand, and from the destruction and devaluation of foreign rivals. This latter was a gamble predicated on martial success, but with the USA entering in 1943 it was a good bet. Victory promised further benefits to US capital, through Washington's domination of much of the world, with previously protected markets cracked open and control gained over global oil supplies. A GND, by contrast, will have to offer drastic demand reduction in many more sectors, and it does not promise global domination . On the contrary, success, especially in addressing climate breakdown and other environmental challenges, will require unequivocal internationalism. When compared with war mobilisation, therefore, incomparably greater resistance from capital can be expected-at least if the GND is to have real traction rather than be a greenwashing of 'business as usual.' That is why, if a GND is to take seriously the needs of 'life making' on a habitable planet, it would need to turn red-green-a 'radical GND,' to use the term of Kate Aronoff and her colleagues , or a 'people's GND,' to use Max Ajl's . Unlike
today. Thirdly, I provide an exposition and critique of Polanyi's approach to the New Deal. This, finally, provides materials through which to re-examine the GND today.Karl Polanyi was a child of the nineteenth century but his political thought was baked in the furnaces of 1914-45. He belonged to a generation many of whom who had grown up swaddled in a Whiggish faith in the inevitability of social progress (Dale 2009). Liberals and many socialists too, including Polanyi, accepted the comforting promise that the onward march of capitalism would necessarily expand liberties and democracy, that the advance of science would overcome many of the challenges facing humanity, and that peace would flourish, by virtue of intensifying commercial exchange and international cooperation. Cures would be devised for cholera and other pathogens, and famine would be defeated. Working together, liberal politics, rational science and market economics would bridle and tame the four horsemen. In 1914, however, the dream shattered. Four years later, Spanish Flu scythed through the warweakened world. As far as I know, it bypassed Polanyi, although in 1917-18 he was hospitalised by another mass killer of the age, typhus. In the 1930s, famine returned to Europe, notably the Ukraine, while livelihoods worldwide were ravaged during the Great Depression. In the USA this included ecological crisis in the Great Plains, where drought combined with the soil erosion occasioned by settler colonialism and cash-crop agriculture to drive dust-bowl desertification (Holleman 2017). All of these, followed by war and the death camps, exposed, for all to see, some terrifying propensities of the capitalist system. (In that system I include 1930s Ukraine, for reasons summarised in Dale (2017).) When Polanyi wrote The Great Transformation, during World War II, the Progress narrative was ailing, but colour soon returned to its cheeks. The 'good guys' won the war, eradicated Nazism, and soldered the world economy back together. Progress powered on, full-throttle, as manifested in miraculous advances in prosperity, literacy, and life expectancy. In North America, where Polanyi lived, but also in his native Hungary and beyond, welfare institutions were constructed. Medical advances were breath-taking too. Typhus and several other diseases were largely vanquished, with some, notably smallpox, being eradicated. Socialists of socialdemocratic and orthodox-communist stripes found common ground with liberals in the belief that Progress was enjoying another splendid stride. (Whether Polanyi belonged to this camp is the subject of some debate.) A decade or two after Polanyi's death, as the neoliberal era dawned, eventually stretching from around 1980 to the present, Progress appeared to mainstream opinion to be achieving giddy heights, exemplified in the marvels of computing and information technology, economic globalisation, the worldwide expansion of democratic government and its triumph over communism. Yet the same decades saw a widespread erosion
Health Beliefs and Race or Ethnic Differences Health beliefs are a necessary factor for explaining-and changing--health behaviors. Several theoretical models, such as the Behavioral Model of Health Services Use ); the Health Belief Model ; and Shaw's Framework of Coping, Health and Illness Behavior, and Outcomes , highlight the importance of knowledge and health beliefs for understanding and predicting health-related behaviors. These behaviors include not seeking medical help for common symptoms, such as LUTS. Shaw's framework incorporates concepts from several prior models to provide a comprehensive theory of how a person moves from experiencing symptoms to an appraisal of those symptoms. This appraisal is crucial for developing a perception of a health threat, assessing the severity of that threat, forming intentions for health behavior, engaging in health behavior, and finally experiencing health outcomes. A variety of psychosocial factors are theorized to influence this process, ranging from external influences and social norms to a person's coping resources and self-efficacy. This study was focused on the appraisal of the situation and the in-depth examination of two of the psychosocial factors theorized to influence that appraisal: cognitive representations of symptoms and group differences . More specifically, Shaw's framework was used to investigate whether and how cognitive representations of symptoms intersect with group differences--particularly, race or ethnic background. Compared to other models, Shaw's framework provides more guidance regarding the components of cognitive representations. Rather than a general category referring to a person's knowledge and understanding of his or her condition, four illnessrelated beliefs are identified in Shaw's framework that combine to inform a person's cognitive representation of his or her illness or symptoms: an identification of signs and symptoms, perceived consequences, perceived causes, and perceived time frame of the illness . In addition, building on prior research indicating that social group differences are important sources of variation in information about health , Shaw included group differences as an important psychosocial factor influencing one's appraisal of the situation. Although Shaw suggests that group differences operate alongside a person's cognitive representation in forming an appraisal of the situation, more recent research regarding the role of race or ethnic group differences in shaping health behaviors suggests that it is more likely that race and ethnicity affect health beliefs, which in turn affect health behaviors . As a result, this study was focused on race and ethnic differences in the cognitive representations of common symptoms in order to more fully understand the gap between experiencing those symptoms and not seeking medical care. --- The Case of Lower Urinary Tract Symptoms Lower urinary tract symptoms encompass a range of symptoms related to urinary storage, voiding, and postvoiding sensations that may or may not be accompanied by pain , such as urinary frequency, nocturia, urgency, and incontinence. This set of symptoms provides a useful case for several reasons. First, LUTS are common symptoms that can impact quality of life negatively . They carry a social stigma that can lead to isolation , and they are associated with depression and anxiety . Second, despite the availability of relatively simple and effective treatments , a significant portion of people with LUTS do not consult a health care provider about their symptoms. Documented barriers to seeking help for LUTS include feeling too embarrassed, ashamed, or uncomfortable to talk with a doctor about urinary symptoms , lack of awareness that symptoms are treatable , and uncertainty about the cause of the symptoms . As expected, higher levels of perceived symptom severity and bother increase the likelihood of help-seeking . However, among those people who reported experiencing multiple LUTS, less than onethird sought medical care . Even for incontinence, reported rates of help-seeking range 15-52% . Third, people's interpretations of symptoms appear to differ across racial and ethnic groups. For example, symptom bother is associated not only with objective measures such as number, type, and severity of LUTS but also with race or ethnic group . Compared to White men, Black men reported higher LUTS severity but lower symptom bother . These findings suggest that people assess symptoms differently regardless of objective criteria and that interpretations are related to sociocultural differences. Finally, there are gaps in the knowledge about people's cognitive representations of LUTS. For example, a well-documented causal belief is that symptoms are an inevitable part of aging; however, younger people experience LUTS as well. Furthermore, it is unknown if causal beliefs differ across social groups, and beliefs other than symptom cause are not welldocumented. As a result, LUTS provides a good case for applying Shaw's framework to examine how cognitive representations of symptoms among those who have not spoken with a provider may differ across race or ethnic group. --- Method A qualitative research design was used to allow participants to explain their symptomrelated beliefs and experiences in an open-ended and detailed manner. --- Sample Respondents were a subsample of participants in the Boston Area Community Health Survey. The BACH survey is a community-based, random sample epidemiologic survey of a broad range of urologic symptoms. This parent study utilized a multistage stratified cluster design to recruit a diverse sample of men and women aged 30-79 years from three major United States racial or ethnic groups . The BACH study design and implementation have been reported previously . Based on the BACH sample, stratified random sampling was used to recruit a subsample of 151 respondents who reported at least one urinary symptom on the BACH survey. The subsample consisted of roughly equal numbers of men and women from a broad age range across the three BACH race and ethnic groups. Respondents for the current study consist of a further subsample of the 35 participants who reported during the qualitative interview that they had not "ever talked with a doctor, nurse, or some other kind of health care professional" about their urinary symptoms. Similar to the larger qualitative sample of 151 respondents, the sample for this study consisted of roughly equal numbers of men and women as well as race and ethnic backgrounds . The sample represented a range of ages and urologic symptoms . --- Data Collection Respondents participated in an in-depth interview about their characterization of and experience with urinary symptoms, their beliefs and attitudes about those symptoms; their coping and management strategies; and help seeking from family, friends, and health care providers. A semistructured interview guide was developed from a literature review and refined based on eight focus groups stratified by gender and race or ethnicity. Interviews were conducted by trained qualitative data collectors in either English or Spanish, according to respondent preference. Interviews were conducted in 2007-2008, lasted approximately 60 minutes each, and took place in respondents' homes. Both the parent study and the qualitative interviews were approved by the Institutional Review Board of New England Research Institutes. All respondents provided written informed consent prior to participating. Each participant was assigned a study number in order to protect confidentiality. The current analysis was focused on respondents' knowledge, beliefs, and attitudes about their symptoms. Applying Shaw's framework, all respondents had reported previously at least one urinary symptom and were asked to address what they thought caused their symptoms, whether they thought their symptoms would continue indefinitely or go away , and whether they thought urinary symptoms were signs of other health problems . In addition, respondents were asked what they thought a health care provider might do for their symptoms . --- Analytic Strategy Interviews were recorded digitally and transcribed verbatim. Interviews conducted in Spanish were transcribed and then translated into English. Transcripts were imported into Atlas.ti qualitative analysis software to facilitate data organization and coding. Analysis began by developing an initial code list, a process known as open coding . The analysts met to compare and discuss their lists of codes and corresponding text. Throughout data collection, analysts read transcripts as they became available and met regularly to review coding and the code list, adding and defining new codes as needed. A codebook with code definitions was stored in Atlas.ti. Following open coding, the lead author developed detailed subcodes, entered them into the codebook, and applied them to all transcripts using Atlas.ti. Thematic analysis proceeded in two ways. The most commonly occurring categories were identified and compared across race or ethnic groups. To fully develop themes, corresponding quotations were examined thoroughly to elicit the meaning of each category. --- Rigor Several steps were taken to enhance methodological rigor. To guard against response bias, interviewers were trained to build rapport with respondents. As part of the interview protocol, interviewers emphasized that they were not connected to a medical organization or doctor but rather were interested in learning from the respondent about her or his experiences and viewpoints. In addition, to maximize respondents' comfort levels, interviews were conducted in respondents' homes and in their chosen language . During analysis, auditability was enhanced by using a consensus process with multiple analysts . To assess credibility, a draft of this paper was circulated to project staff members, including an interviewer who had listened to respondents' stories firsthand. --- Results Respondents in the full sample held varied beliefs about the causes, consequences, continuation, and treatability of their urinary symptoms . The most common causes identified were personal behaviors and aging, but about one-fifth of the sample was uncertain of the cause. The two main causal attributions-personal behaviors and agingwere at opposite ends of the spectrum of whether their symptoms were under their personal control. The sample was split on whether their symptoms would continue, but the majority believed their symptoms were treatable and could have a health consequence--yet they had not sought medical care. For the full sample, these findings appeared inconsistent and even contradictory. However, examining results by race and ethnic group helped to make sense of the various beliefs. --- White Respondents Believed Symptoms Were Normal Aging The familiar view that urinary symptoms are a part of aging was most common among White respondents. Consistent with previous research , respondents who attributed LUTS to aging typically normalized their symptoms. A 74-year-old White man provided a typical explanation when he said that his symptoms were "just part of the normal aging process…, just muscles relaxed over time." As expected, normalizing symptoms meant that they were interpreted to be of relatively low importance or concern. Attributing the cause of urinary symptoms to aging raised the issue of bodily control, particularly for incontinence. As a 73-year-old White man who experienced occasional leakage explained, "There have been times when, and this I definitely attribute to age, where I actually lose control. Now that really bothers me. …You start to say, 'Oh my God…Am I losing control of my functions?' And, it's not a nice feeling." In his view, a person with urinary incontinence "is a person who's ready for a nursing home." For him and others in this group, viewing symptoms as related to aging created distress because their symptoms were at odds with their perception of themselves as "not old enough" to lose urinary control. In line with the view that aging causes LUTS, White respondents more often than Black or Hispanic respondents believed that their urinary symptoms would continue . As a 57-year-old White woman explained, "Well, we're getting older. So, we're not going to get better, we're just going to get worse. Isn't that the process? Your body breaks down." Similarly, White respondents also more often than Black or Hispanic respondents characterized symptoms as common among people their age , and it was less common for White respondents than for Black or Hispanic respondents to believe that their urinary symptoms were treatable . Taken together, these beliefs about the cause, continuation, and treatability of symptoms intersected to create a familiar storyline for explaining why this group did not seek medical help. That is, symptoms are believed to be a common part of aging and therefore not amenable to medical treatment. For example, a 54-year-old White woman who experienced daily urinary hesitancy, incomplete bladder emptying, and frequent urination for over 10 years explained several times during the interview that she knew other middle-aged women who also had urinary problems, including incontinence. In her words, "Everybody's kind of dealing with it. You know, it's like the joke." She continued to explain that her urinary problems were "lowest on the list" of items to address with her doctor because "it's just part of getting older. There's nothing to be done." However, the same woman also told a story of a middle-aged friend with incontinence who had undergone corrective surgery. She concluded, "It also made me think, 'Well, gee, if I had problems and they got worse, you know maybe there is something to be done for them.' I sort of go along figuring, 'Well, you're just getting older. There's not a lot to do.'" Even knowing someone who had received treatment did not fully undermine the belief that symptoms were age-related and not appropriate for medical treatment. --- Black Respondents Believed Symptoms Were Controllable Among Black respondents, the predominant beliefs were that LUTS were caused by personal behaviors, would or could go away, and were treatable. Many respondents in this group identified the amount, timing, and type of drinks they consumed as the cause of their symptoms. As a 61-year-old Black woman explained, she attributed her symptoms to "the time factor in which I'm taking the fluids. I think that's why I have to get up during the night and go to the bathroom." Other personal behaviors believed to cause urinary symptoms included lack of exercise, rushing, and waiting too long to use the bathroom. For example, a 46-year-old Black woman explained that she was told as a young person "to do these exercises with your vagina to keep it strong," and continued, "I didn't do the exercises, so now I'm suffering." Although they had not sought medical care, most Black respondents believed that a doctor could treat their urinary symptoms. Respondents who believed their symptoms were treatable mentioned a range of ways in which they thought a doctor could help, including medication, surgery, diagnostic tests, exercise and lifestyle advice, and diet modifications. A 43-year-old Black woman expressed typical sentiments when she explained that a doctor "might do a test, like [a] urine test to see if I have an infection" and "they might change my diet or whatever, or [have me] exercise." This belief that symptoms are treatable helped to make sense of why Black respondents commonly believed that their symptoms would or could go away. As a 42-year-old Black woman said, "I think they will continue indefinitely if I don't inform anyone about it," implying that the doctor could help if she sought care. Believing that one's own behaviors caused urinary symptoms implied that they were controllable. For example, a 40-year-old Black woman explained: "I know people have to control your bladder. Because if you have a schedule, you have to go to the bathroom, or you wait until you feel like to go to the bathroom and you go right way. So, I don't think it's going to be a problem." Similarly, a 62-year-old Black man said, "And I think you have to make sure you manage your bladder. Go to the bathroom when you feel it coming on. … And, if you hold back, I mean…" Since symptoms were controllable, they would or could go away if they "have a schedule to go to the bathroom" or "try to not drink too much tonight" . In short, it was common for Black respondents to believe that their symptoms were within their control, making the available medical treatments unnecessary. For example, a 61-yearold Black woman who experienced nocturia explained that her symptom was caused by the type and timing of fluids she drank. In her words, "And I know when I drink the ginger ale that it makes me go to the bathroom like two or three times, especially if I drink more than just a little bit. … And then when I do that, I pay for it by having to wake up and go to the bathroom during the night." As a result, she believed that changing her habits would relieve her symptoms. She continued, "If I could eliminate the vitamin water and the ginger ale completely and change the time factors as to when I take in these fluids, and I believe if I exercise consistently, I do believe they'll go away." When asked if she had ever spoken with a medical provider about her symptoms, she said "No, because I didn't think there was any need to. …I didn't see it as a problem. I just felt like because of the fluids I take in…and the time factor in which I take them in, that that's what was going on in my body." It did not seem necessary to raise the issue with her physician since she attributed her symptoms to her own behaviors. --- Among Hispanic Respondents, Uncertainty Fueled Worry Hispanic respondents shared the main causal beliefs reported by other groups, but they also appeared to have more uncertainty regarding what caused their symptoms. Compared to one-fifth of the overall sample, a third of Hispanics in the sample expressed uncertainty as the sole or underlying view about what caused their symptoms. As a 57-year-old Hispanic man said when he was asked why he thought he had urinary symptoms, "That's what I would like to know, too! Because I urinate so much at night." In addition, believing that symptoms would have a consequence was particularly prominent for Hispanics. Hispanics tended to view the body as an interconnected system in which "one thing leads to another" and symptoms would have a "chain reaction" . Furthermore, believing that symptoms would have a health consequence tended to accompany uncertainty about the cause, as six of seven respondents who were uncertain of the cause also expected a future health consequence. This combination was more common among Hispanics. However, the belief that urinary symptoms could or would lead to a health problem did not translate into seeking medical care. The lack of help seeking was not because Hispanics tended to believe urinary symptoms were untreatable; 80% believed a doctor could help. As a 75-year-old Hispanic woman said, she would rather consult her doctor than family and friends about her symptoms because the doctor could provide "the right medicine for my disease." Instead, as with most respondents who believed their symptoms would have a consequence , Hispanics reported that they did not seek help because their symptoms were not serious in the present; the consequence would occur at some point in the future. For example, a 39-year-old Hispanic man who described having symptoms of increased frequency and urgency for two years wondered about what may have caused his symptoms but ultimately remained uncertain, and this led to worry. He explained, "So, sometimes I worry because I don't know if it has something to do with any disease I might be getting but still haven't gotten. I haven't had a check up so that I can be sure about what is happening." He continued to explain that he viewed his urinary symptoms "as a disease that has to be treated or that sometimes makes me worry about the future in the sense that in the future this might cause something that is too late or too serious to treat." He acknowledged that not seeking help may be exacerbating the problem, but he continued to live with the worry. In his words, "And, so far I haven't done anything to take control of this. But, yes, it worries me." As this respondent illustrated, not seeking medical care did not preclude symptomrelated concern about the future. --- Discussion A range of health beliefs was explored in this study to understand more fully how the cognitive representations among those who have not sought medical care for common urinary symptoms differ by race or ethnic group. The well-documented belief that aging causes LUTS occurred in combination with beliefs that symptoms were not treatable and would continue, and this explanation for not seeking help was most common among White respondents. In contrast, Black respondents more often attributed their symptoms to personal behaviors over which they had control and, therefore, did not require the available medical treatments. Hispanic respondents appeared to live more commonly with uncertainty and the accompanying worry. Although not every respondent within a race or ethnic group reported the same beliefs, the trends for cognitive representations associated with not seeking medical care for LUTS differed by race or ethnic background. A full discussion of reasons for these differences is beyond the scope of this article, but Shaw's framework provides some guidance. Building on Leventhal et al. , Shaw argues that health-related information is acquired in part from social and cultural sources. These sources include not only generalized societal knowledge but also informal communication within the context of different social groups. This suggests that people from varying race or ethnic groups may bring different information about health to the process of forming a cognitive representations of their symptoms. Demonstrating that sociocultural differences shaped cognitive representations of symptoms contributes to prior knowledge in several ways. Gannon et al. have shown that uncertainty about LUTS and its causes contributes to a delay in help-seeking. The current study added that a particular sociocultural group appeared more often to be living with uncertainty about the cause of their symptoms, with the associated lack of help-seeking and worry. In addition, although prior studies have concluded that people with LUTS often view their symptoms as not serious, this analysis of a diverse sample revealed that this attitude was not as widespread as the literature would suggest. Although some respondents viewed their urinary symptoms as a low health priority relative to other concerns, this did not preclude concern that the symptoms may have a future health consequence. As a result, reports of people considering urinary symptoms to be not serious do not necessarily mean that there is no symptom burden associated with LUTS. Finally, prior studies have concluded a lack of awareness that symptoms are treatable . In contrast, the current analysis demonstrates that Black and Hispanic people with LUTS tend to believe that symptoms are treatable, even though they have not sought medical care. Although some of these respondents said that they may not choose to take a medication for urinary symptoms or wondered if the doctor would find their symptoms to be "serious," "abnormal," or an "emergency," they were aware that urinary symptoms are treatable. Rather than a lack of awareness of medical treatments, it was the combination of health beliefs to form a cognitive representation of symptoms that made sense of the behavior of not seeking care for these groups. --- Limitations The limitations of this research indicate areas for future research. First, more research is needed to evaluate whether the apparent association between the cognitive representations identified by this study and the behavior of not seeking medical care is a causal relationship. The current sample was drawn from a cross-section of people with LUTS, some of whom had sought medical care at the time of the interview while others had not. For those who had sought medical care, the data do not include retrospective information about their health beliefs prior to speaking with a health care provider about their symptoms. Future retrospective or longitudinal research of the full range of health beliefs before and after seeking medical care is required in order to examine causality directly. Second, future research is needed to examine in-depth the other psychosocial factors theorized to influence one's appraisal of the situation , which was not possible in this study due to limitations of the dataset. Third, since the sample size for each race or ethnic group was relatively small, further research with a larger sample of people from racially diverse backgrounds is needed to confirm the differences in cognitive representations found in this study. Still, the findings from this study remain valid and informative as qualitative methods neither claim nor require population representativeness. The strength of this sample is in its diversity as results provided new insight into how patterns of cognitive representations of the same symptoms differ across racial and ethnic groups. The results also support the use of a diverse sample for future studies regarding health-related beliefs for other types of symptoms. --- Implications The finding that cognitive representations of symptoms tend to differ across race and ethnic groups underscores the need for cultural competency in patient assessment and health education, including but not limited to LUTS. Health care providers and educators cannot assume that patients across different sociocultural backgrounds hold the same or even the most commonly recognized beliefs about the causes, consequences, continuation, or treatability of their symptoms. The behavior of not disclosing symptoms to a provider was shared by all respondents, but the cognitive representations associated with that behavior differed across groups. For example, in the case of LUTS, if providers and educators anticipate only the widely acknowledged belief that people normalize their symptoms as part of the aging process, then efforts to assess patient needs or educate about symptoms will fall short of connecting with the sizeable number of people who attribute symptoms to their own behaviors or are uncertain about the cause. In order to facilitate help-seeking for LUTS among patients from varied race and ethnic backgrounds, providers and educators could phrase questions in ways that reflect varying beliefs about symptoms, e.g., whether patients can identify a change in personal behavior that could improve their well-being or are uncertain about an issue related to their health. For LUTS and other symptom clusters, asking questions in ways that reflect varying beliefs about symptoms may increase the likelihood that a patient will disclose those symptoms during a clinical encounter. The findings also have implications for theoretical models explaining health-related behaviors. In particular, as suggested by Shaw's framework of health behavior and outcomes, cognitive representations were made on the basis of several types of beliefs about symptoms. Causal attributions are an important but incomplete indicator of the role of health beliefs in explaining behaviors. In addition, the diversity of cognitive representations indicates that race and ethnic background operates by way of impacting health beliefs . Future research is needed to investigate whether race and ethnic background influences other factors that contribute to an illness appraisal as well as whether other social group differences intersect with these factors. Finally, that some respondents connected causal attributions to personal control suggests the need for future research to more fully examine the ways by which health beliefs intersect with health locus of control. Focus of the current study as part of Shaw's Framework for Research on Coping, Health and Illness Behaviour, and Outcome. Adapted from "A framework for the study of coping, illness behaviour and outcomes," by C. Shaw, 1999, Journal of Advanced Nursing, 29, p. 1247. Copyright 1999 by John Wiley and Sons. Permission granted to reproduce. --- Notes. a Subsample sizes smaller reflect the number of respondents within each group who addressed the particular belief or attitude. b Some respondents reported more than one causal belief. Nurs Res. Author manuscript; available in PMC 2012 May 1.
Background-Health beliefs are an important mediator between the experience of symptoms and health behaviors, and these beliefs can vary by race or ethnicity. Objectives-To better understand the gap between experiencing symptoms and not seeking medical care by studying health beliefs about lower urinary tract symptoms (LUTS) across race and ethnic groups. Method-Qualitative, semistructured interviews were conducted with 35 Black, Hispanic, and White people who reported at least one urinary symptom but had not spoken with a health care provider about the symptoms. Drawing on Shaw's framework of health behavior and outcomes, a range of beliefs was examined: cause, consequence, continuation, and treatability. Interviews were transcribed, coded, and analyzed for themes according to race or ethnic background. Results-The belief that LUTS are a typical part of aging and not amenable to medical treatment was most common among White respondents. Black respondents more commonly attributed their symptoms to personal behaviors over which they had control and therefore did not require medical care. Hispanic respondents appeared more often to live with uncertainty about the cause of their symptoms and an accompanying concern about a future health consequence. Discussion-The combination of a range of health beliefs to form a cognitive representation made sense of the behavior of not seeking medical care. The finding that sociocultural differences shaped these cognitive representations underscores the need for cultural competency in patient assessment and education. Results have implications for theories of health behavior and indicate further research with larger samples, additional psychosocial influences, and other symptoms.
Traditional attire: Both Korean and Indian cultures have unique traditional attires that hold significant cultural and social significance. In Korea, the traditional attire is known as hanbok, which is worn during special occasions and festivals. In India, traditional attire varies depending on the region, such as sarees, turbans, dhotis, and lehengas, and they hold cultural and religious significance. Food culture: Korean and Indian cuisines are distinct and have their own flavors, ingredients, and cooking techniques. Korean cuisine is known for its emphasis on fermented foods, such as kimchi, and its love for rice and noodles. Indian cuisine, on the other hand, is famous for its diverse flavors, spices, and regional variations, such as curry, naan, and dosas. Social hierarchy: Both Korean and Indian cultures have a strong emphasis on social hierarchy and respect for authority. In Korea, Confucianism has influenced social hierarchy, where age, rank, and social status hold significance. Similarly, in India, the caste system has historically influenced social hierarchy, where people are classified into different castes based on their occupation and birth. Religion: Religion plays a significant role in both Korean and Indian cultures. In Korea, Buddhism, Confucianism, and Shamanism are prominent religions, while in India, Hinduism, Islam, Christianity, and Sikhism are major religions. Religion influences various aspects of life, including customs, traditions, festivals, and social norms. Language: Language is an important aspect of culture, and both Korea and India have their own unique languages. Korean language, known as Hangul, is the official language of South and North Korea, while India has a diverse linguistic landscape with over 122 major languages and numerous dialects spoken across the country. Art and aesthetics: Both Korean and Indian cultures have a rich history of art and aesthetics. Korean art is known for its minimalistic and elegant style, seen in traditional crafts, pottery, painting, and architecture. Indian art, on the other hand, is known for its intricate designs, vibrant colors, and diverse styles, seen in various art forms such as painting, sculpture, dance, and music. Education: Education is highly valued in both Korean and Indian cultures. Both countries have a strong emphasis on academic achievement and believe in the importance of education for personal and societal advancement. High academic standards, rigorous examinations, and a competitive educational environment are common in both cultures. Festivals: Both Korea and India have a rich tradition of festivals and celebrations. Korean festivals such as Lunar New Year , Chuseok , and Dano are celebrated with traditional rituals, food, and performances. Similarly, Indian festivals such as Diwali , Holi , and Navratri are celebrated with religious ceremonies, music, dance, and cultural activities. --- Historical Link between Korean and Indian Culture Millions of Koreans trace their origins to Suriratna, a princess from Ayodhya who had married the Korean king Kim Suro, a diplomat from the country said, adding that a memorial to the princess would soon be upgraded. At a two-day international conference organized by the Indian Council for Cultural Relations , the deputy head of the South Korean embassy Ahn Min Sik said the shared heritage between India and his country began in 48 AD with the Ayodhya princess marrying the Korean king. If there's any country that is closer to India in terms of the shared history, the language, it is Korea,' said the ICCR President Lokesh Chandra, adding that the legend has helped in strengthening Indo-Korean relations. 'Our history shows the mutual support and partnership these two countries had enjoyed. This has led to an increasing value to our extending partnership in economic, political and cultural entities,' Anil Wadhwa, secretary in the ministry of external affairs said while addressing the conference. An official statement from the ICCR pointed out that Suriratna had travelled for three months from Ayodhya to Korea by sea and married the Korean king, thus marking the beginning of the Garak clan in Korea. Prime Minister Narendra Modi during his visit to Seoul in May had also reiterated the importance of this legend in his speech. 'The relationship between the two countries goes back to the first century when an Indian Princess travelled from the kingdom of Ayodhya to Korea by a boat. She married the Korean King Suro and became the first queen of South Korean kingdom. Several Koreans trace their lineage to her,' Mr Modi had said at the India-Korea CEOs Forum. This tale of the Ayodhya princess was also mentioned in 'SamgukYusa' or 'The Heritage History of the Three Kingdoms', a treasured work in Korea which was written in the 13th century. The book finds a reference to the princess , who after marriage had become Queen Heo Hwang-ok. The statement from ICCR also mentioned some of the famous descendants of Queen Heo as General Kim Yoo-shin, who had first unified the Korean Kingdom in the 7th century, former president and Nobel Laureate Kim Dae-jung and former prime minister Kim Jong-pil, among others.
Korean and Indian cultures are rich and diverse, with unique customs, traditions, and values. Here are some comparative studies between Korean and Indian culture: Family values: Both Korean and Indian cultures place a strong emphasis on family values. In both cultures, family ties are highly respected, and filial piety is considered important. Family members often live together or in close proximity, and the elderly are typically given great respect. Respect for elders: In both Korean and Indian cultures, respecting and taking care of elders is deeply ingrained. Older family members are considered to have wisdom and experience, and their opinions are often sought and valued. They are accorded a high level of respect in both societies.
INTRODUCTION Several studies have tried to identify how social and structural determinants of health impact the health and social care needs of patients. Some of these studies lack standardization of what variables define Open Access the social determinants of health and the appropriate screening tools to track these variables, inconsistent data and measurement, and inadequate healthcare-based solutions for the core problems such as access to care, poverty and food insecurity [1]. Medical providers are trained in biological determinants of health however may lack knowledge in the implications of social factors that impact health outcomes. Common medical studies do not delve into the social determinants of health. Interestingly, a recent study found that the relative contributions of social determinants of health on wellbeing outcomes were around 60% [2]. It is a priority for health care providers to know the effects of these social determinants on patient's health care outcomes . A comprehensive understanding of the impact of social determinants on health can ultimately improve health in individuals and populations as clinicians can offer more effective treatments, improved social screening, timely referrals to legal and social services, and initiation of research to understand the mechanisms by which social factors affect health. Understanding that structural determinant factors [3] determine an individual's socioeconomic position which affect the intermediary determinants such as material circumstances and the psychosocial and behavioral factors helps unravel the complexity of the interaction of all of these factors at many levels . The aim of this paper is to review the literature on social determinants and its' impact on the health of older adults in the United States and to develop a conceptual framework for clinicians to better understand the importance of social determinants on the health of older adults. --- RACE AND ETHNICITY DETERMINANTS OF HEALTH AT OLDER AGE Racial and ethnic inequalities have been associated with adverse health outcomes [4]. Life expectancy is a parameter to measure health and will be discussed. In the United States, years of life expectancy at birth in non-Hispanic Blacks is 74.9 in men and 78.1 in women is the lowest. In whites it is 78.7 in men and 81.1 for women. In Hispanics it is 81.8 and 84 in men and women respectively. The higher life expectancy for Hispanics seems to be a paradox considering that Hispanics have a lower socioeconomic status, education, and health care resources than the white population. Despite poorer household incomes, poor access to health care, and worse health [5]. Hispanics have a longer life expectancy than white people. Boen found Hispanics have higher disability, depressive, metabolic, and inflammation compared to Whites. Boen did not find a healthier status in Hispanic immigrants. Interestingly socioeconomic factors are important determinants of inflammation, disability, depressive, metabolic, as these differences are attributed to stress exposure [6]. Furthermore, US-and foreign-born Hispanics had lower physical function and depression than Whites. Also, foreign-born Hispanics have the same metabolic syndrome risk as White. Conversely, US-born Hispanics have increased risk of metabolic syndrome than Whites. Lucas found that among the Hispanic subgroups Puerto Ricans had poorer health state than Mexicans , Cubans , and Central or South American [7]. Also, Puerto Ricans had additional multiple chronic diseases, increased psychological distress, and were more likely to be unable to work due to health problems that the other Hispanics subgroups. Studies also found that Hispanics and African Americans health risk was very similar. Further the disparity between foreign-born Hispanics and Whites declined with age, offering evidence of the age-as-leveler hypothesis. However, this contradicts the fact that Hispanics live longer than whites. Therefore, there must be other factors that cause the increase life expectancy in Hispanics. One of these factors may be that Hispanics have strong communities and often live in multigenerational households that care for one another. Even though morbidity is high in adult life, they are taken care of by family members. Also, Hispanics have a higher life expectancy due to good health behaviors, the healthiest come to the United States living in communities where they have strong support systems. Interestingly, it is important to note that life expectancy in Hispanic countries is lower that the Hispanics in the United States which raise questions about social or biological factors that impact life span such as differences in health care systems. --- EDUCATION Cutler and Lleras-Muney estimated the basic correlations between education and health by the following formula [8]: Hi c Ei Xi i β δ ε = + + + where Hi is an individual i's health, Ei stands for individual i's years of education, Xi is the individual characteristics including race, gender and single year of age, c is a constant term and ε is the error term. The coefficient on education β is the object of interest, and it measures the effect of one more year of education on the patient's health. The study's results show that individuals with higher levels of education are less likely to die within 5 years. They also found that the more educated also report having lower morbidity from the most common acute and chronic diseases . The only exceptions are cancer, chicken pox and hay fever. Education can play a factor in improving health outcomes for individuals while diseases can decrease your chances of obtaining a better education. Interestingly, Singh found that higher education significantly increases life expectancy in older Whites and African Americans however not in Hispanics [9]. Thus, there must be other social factors that counteract the positive effect of education in older Hispanics. One factor could be the Hispanics familism defined as a stronger orientation toward the family [10], in which acceptance and love to all their family member regardless of their educational achievements would decrease psychological stress and increase wellbeing [11]. Additionally, lower education has been associated with diabetes and hypertension [12]. However, education contributed to lower mortality from diabetes in Hispanics [13], making the analysis of these factors more complicated. Furthermore, Jemal et al. found that possibly preventable determinants associated with lower education could be the associated with a great proportion of all deaths in US adults [14]. --- TYPE OF WORK Occupation has been associated to health outcomes and life expectancy. In a recent study they found that white-collar men and women with no activity limitations between the ages of 50 and 75 had a life expectancy of about 4.5 years longer than in low skilled blue-collar occupations [15]. High skilled blue-collar and low skilled white-collar occupations without activity limitations had a 2.3-and 3.8-years shorter life expectancy, compared to high skilled white-collar men. Low skilled white-collar women without activity limitations had a life expectancy of 2.6 years shorter than high skilled white-collar women. --- INCOME AND WEALTH Wealth has been associated with better health status and higher life expectancy in multiple studies. Research of the causality between health and wealth indicates a bidirectional relationship between health and wealth. In 11 countries, a one-way causality was found as being from wealth to health and in 8 countries the other way around. Also, a two-way relationship was observed in 2 countries [16]. --- YOUNG ADULT LIFE EXPERIENCES AS DETERMINANTS OF HEALTH IN OLDER AGE The interaction between young adult life experiences and older adult health has only recently begun to attract attention to researchers [17]. Healthcare providers should review the patient's life course for the understanding of this interaction. Healthcare providers should examine the individual experiences and the affect with on future medical comorbidities, as each change over time and in their interaction with external historical conditions. Life course events such as exercise, happiness, stress, social support, health care, early age at marriage, high parity, and experience of adverse events, such as the death of a child and being dismissed from work has been associated with health in early old age [18]. --- LATE LIFE EXPERIENCES AS DETERMINANTS OF HEALTH IN OLDER AGE --- Social Aging --- 1) Retirement in older age. There is an obvious relationship between poor health and early retirement [19]. However, it is unknown how an early retirement affects health in older adults. For a long time, it was thought that retirement was detrimental to older adult health [20]. However, a European study found that retirement decreases the probability of reporting to be in fair, bad, or very bad health; subsequently it has a positive effect preserving general health [21]. 2) Psychological and physical effects Aging can cause physical symptoms such as fatigue, pain, and weakness which can produce poor health inhibiting functioning and decreased social engagement [22]. These adverse physical symptoms can provoke isolation and loneliness which typically increases in older adults [23]. In a recent study, Kotwal found that the overall prevalence of social isolation and loneliness in older adults was 1 in 5 and increases prior to death [24]. However, in another study more than 60% of older adults rarely account loneliness and less than 10 % state severe loneliness [23]. Furthermore, loneliness has been associated to increased mortality in several studies [25,26]. Some investigators have hypothesized several biological mechanisms that increase poor health and mortality such as cardiovascular activation, cortisol levels, sleep and health behaviors [27]. --- Work after Retirement Post-retirement has been associated with greater psychological well-being and life-satisfaction [28]. Studies have found that individuals who work after retirement show improved physical and mental health outcomes [29]. Furthermore, Nikolova found that voluntary part-time workers are happier, experience less stress, less anger, and have higher job satisfaction than full-time employees [30]. --- Exercise Exercise has been associated with good health outcomes such as improved cognition and preventing dementia [31]. Furthermore, Lee found an inverse linear dose-response relation between volume of physical activity and all-cause mortality [32]. --- Social Support Married individuals have healthier physical and mental state than single individuals, however married individuals have increased risk of overweight and obesity than single individuals [33]. One explanation for this paradox is that despite a higher weight married people have healthier eating habits and behaviors [34]. Health insurance studies showed that the lack of insurance in American adults generate less appropriate healthcare, and it was associated with higher mortality among white adults who had low incomes, diabetes, hypertension, or heart disease [35]. Currently around 1.6 billion people worldwide lack adequate housing and, it is estimated, that annually about 2 million people are formally evicted from their homes. Novoa found that housing conditions can impact one's physical and mental health by the emotional housing conditions, the physical housing conditions, the physical environment, and the social environment of the neighborhood [36]. Nguyen found that family and friend relationships are associated with well-being. Also, Nguyen found that qualitative aspects such as closeness and negative interaction are more important than structural aspects such as frequency of contact [37]. Seeman found that increased social relationships have positive effects such as decreased mortality in older adults; however, negative effects such as depression and angina were also found 38. These negative effects could be related to increased cortisol and norepinephrine 38. Therefore, these data suggest that the quality of social relationships determine the positive or negative effects. --- Nutrition Nutrition is a major factor in older adults health and human health in general [38]. Interestingly, Ordovas found that Personalized Nutrition plan motivates people to follow a healthy diet and lifestyle when compared conventional dietary advice [39]. --- CONCLUSION The nation expects an increase in the number of older adults as the population ages; therefore, it is crucial to educate healthcare providers about older adults and their caregivers social care needs. It is important to address all the social determinants of health in the integrated healthcare plan of older patients to develop individual interventions such as the Personalized Nutrition plan. Healthcare organizations should adopt these interventions to improve the health status of older adults at the local, national, and global level. There are still multiple unresolved challenges due to the extensive heterogeneity across race, culture, genetics, resources, education, and other social factors, which makes a consensus statement defining the social determinants of health in older adults difficult to approach. The fact that patient's health issues also affect social factors makes defining causality almost impossible. Furthermore, efforts to create a person-centered integrated healthcare plan and develop individualized protocols that address the patient's social and health status interrelationships should be implemented in health care settings. This can be achieved by increasing screening and documentation of the social determinants of health documentation in the electronic health record. These records will allow providers to use the collected data for the integrated health care plan to make medical decision and referrals to social care services [40]. --- CONFLICTS OF INTEREST The authors declare no conflicts of interest regarding the publication of this paper.
In this paper, we review the social determinants of health in older adults and their complex interrelationship with medical diseases. Also, we provide recommendations to address these determinants in the integrated healthcare plan. The social determinants in older adults and its influence in health outcomes have been studied for decades. There is solid evidence for the interrelationship between social factors and the health of individuals and populations; however, these studies are unable to define their complex interrelatedness. Health is quite variable and depends on multiple biological and social factors such as genetics, country of origin, migrant status, etc. On the other hand, health status can affect social factors such as job or education. Addressing social determinants of health in the integrated healthcare plan is important for improving health outcomes and decreasing existing disparities in older adult health. We recommend a person-centered approach in which individualized interventions should be adopted by organizations to improve the health status of older adults at the national and global level. Some of our practical recommendations to better address the social determinants of health in clinical practice are EHR documentation strategies, screening tools, and the development of linkages to the world outside of the clinic and health system, including social services, community activities, collaborative work, and roles for insurance companies.
Introduction Although the need for sleep is universal, getting enough, and high-quality, sleep is particularly important during adolescence, a period with rapid physical, cognitive, and emotional development [1,2]. Between 18 and 30% of adolescents and young adults in Norway experience insomnia [3], and 3.3% suffer from delayed sleep-wake phase disorder, that is, they struggle to fall asleep at the normal time and find it difficult to wake up [4]. Too little or poor sleep may negatively impact physical and mental health [5][6][7], contribute to alcohol and drug related problems [8], and result in poorer attendance and lower grades at school [9][10][11], sickness absence [12], as well as traffic and work accidents [13,14]. Although the Norwegian national guidelines for treatment of sleep problems recommend cognitive behavior therapy as first-line treatment over prescription drugs [15], prescription drugs are by far the most frequently used treatment for sleep problems in Norway [15,16], and therefore the focus of the current study. Prior research has shown that some parental risk constellations are associated with subsequent treatment for anxiety/depression in offspring [17]. Here we build on and extend that research by addressing whether some parental risk constellations are associated with subsequent prescription drugs treatment for sleep problems in offspring. We disentangle the role of parental risk constellations in predicting treatment for sleep problems as a separate entity from anxiety/depression, and treatment of sleep problems that precede, co-occur, or follow treatment for anxiety/depression. A study based on cross-sectional data, assessed children's sleep with actigraphs over 7 nights, showed that parental problem drinking was associated with shorter sleep duration, reduced sleep efficiency, and greater long wake episodes in offspring [18]. Further, a longitudinal study showed an association between parental problem drinking and reduced sleep duration and sleep efficiency in offspring over time [19]. Poor parental mental health and low socioeconomic status are also both associated with offspring sleep problems [20][21][22][23][24][25][26], and these three risk factors -mental health, low SES and problem drinking -often co-occur [27,28]. To date, most studies have focused on single parental risk factors, a tendency that may lead to underreporting of true risk. A combination of risk factors, including risk factors below clinical level, may accumulate, and represent significant risk. Studies that examine single risk factors, may present elevated risk, or obscure actual risk [29]. Rather than studying risk factors in isolation, it is more informative and nuanced to consider risk factors together, as they cooccur within and across families. Historically, sleep problems were mainly considered as symptoms of depression or anxiety [30,31]. Indeed, problems falling asleep, staying asleep, and restless sleep are common symptoms of anxiety and depression and listed along with the other symptoms of these disorders in diagnostic manuals [32]. However, sleep problems are also considered as separate disorders [30]. The sleep related complaints in the research diagnostic criteria for insomnia largely overlap with the sleep related symptoms of anxiety and depression [33]. In order to separate sleep problems that occurs independently from sleep problems that are symptoms of anxiety and depression, some sleep studies control for anxiety/depression [34,35]. However, many studies fail to do so [10,19,36,37]. As the etiology for sleep problems may differ from the etiology of anxiety/depression, it is necessary to account for the latter when examining sleep problems in general, namely those not associated with anxiety/depression. Failure to do so may lead to possible conflated results or masked true effects. Further, given the bidirectional relationship between sleep and anxiety/ depression, extensive follow-up time is necessary to identify cases where sleep problems occur without instances of anxiety/depression. Among Norwegian children and adolescents, the prevalence of diagnosed depression is between 0.1 and 2.7% [38][39][40][41][42]. For anxiety disorders, the prevalence is between 1.5 and 5.3% [38,39,42,43]. To date, most studies are cross-sectional or have short follow-up period, see e.g. [18][19][20]26], adding uncertainty as to the problems that are captured during data collection; sleep problems, anxiety/depression, or both. Further, most previous research has focused on self-reported symptoms of sleep problems and anxiety/depression, or sleep data from actigraphs, which consequently has formed the basis of the current knowledge on the association between parental risk constellations and offspring sleep problems. Some studies also specifically exclude cases where offspring present with a diagnosed sleep disorder [18,19] The current study contributes to and extend knowledge through use of a different approach, namely pharmacological treatment for sleep problems with and without preceding, co-occurring, or following prescription drug use for anxiety/depression. The prevalence of sleep problems in young people, and the adverse outcomes associated with it, underscore the need for reliable knowledge about its predictors. We examine the effect of parental risk factors on subsequent prescription drug use for sleep problems in offspring as adolescents and young adults. We use a large cohort study, where both parents and offspring provide information on key variables through survey self-report at baseline. We follow offspring prospectively for nine years in the Norwegian Prescription Database , capturing dispensed prescription drugs for sleep problems and anxiety/depression during the study period. Prescriptions are issued by medical doctors after a clinical assessment of the patients' symptoms and are used as proxies for receiving treatment for sleep problems and/or anxiety/depression. The specific research objectives were to examine whether different constellations of parental risk, characterized by drinking quantity and frequency, mental health, and education, were associated with offspring's subsequent treatment with prescription drugs during the 9-year study period for: only sleep problems, both sleep problems and anxiety/depression, and only anxiety/depression. --- Methods --- Design, data sources and sample We combined self-reports obtained from offspring and their parents who participated in the adolescent and adult version of the Nord-Trøndelag Health Studies [44,45] in Norway in 2006-2008 , with offspring registry data obtained from NorPD from 2008 to 2016. HUNT and Young-HUNT surveys are general population health surveys carried out in Nord-Trøndelag County in Norway, in which adults 20 and older, and all adolescents between 13 and 19 were invited to participate. The response rates for the surveys ranged from 54.1-82.7% [44][45][46]. For further information about response rates, handling of nonparticipation, and reasons for nonparticipation, please see [44][45][46][47]. Our sample included 8,774 adolescents from 6,696 2-parent families, with mean age 16.05 years at young-HUNT participation. The HUNT surveys were conducted in an area that is mostly rural, with a lack of large cities, but the area is still considered to be fairly representative of Norway as a whole regarding geography, economy, industry, sources of income, age distribution, morbidity and mortality [45]. The HUNT and Young-HUNT health surveys constituted the study baseline and included information about exposures and covariates, while the 9-year longitudinal follow-up on outcomes of interest --i.e., dispensation of any prescription drugs for sleep problems, and anxiety/ depression in offspring --was done through NorPD. Statistics Norway provided information on educational attainment and family identifier numbers for linkage on the family level. We only included families where adolescent offspring and both parents had complete HUNT reports. We used a two-parent sample in order to isolate / identify the associations between exposure and outcomes in a sample not associated with multiple additional risk factors, including single-parent families. All study participants provided written informed consent . The study was approved by the Norwegian Data Protection Authority and the Regional Committees for Medical and Health Research Ethics . --- Measures Exposures The primary exposures were based on previously identified constellations of maternal and paternal risk factors based on parental education, alcohol consumption frequency and amount, and mental health [17]. The HUNT survey items included drinking frequencies "How many times a month do you normally drink alcohol?". Drinking quantity was phrased as "How many servings of beer, wine or spirits do you usually drink in the course of two weeks?". Parents reported the actual number of consumed drinks . Frequency responses were recoded to reflect mid-points of the original categories and quantity responses were summed to obtain total alcohol intake. To aid interpretation, estimates were rescaled to average weekly drinking quantities and frequencies. Parental mental health was measured using the Hospital Anxiety and Depression Scale . The sum scores translate to 0-7, normal; 8-10, mild symptoms; 11-14, moderate symptoms; and 15-21, severe symptoms. The HADS scale is considered a reasonably valid screening instrument in Norwegian samples [48]. The number of years of completed education for both parents were obtained from Statistics Norway. In a previous report we used these three parental risk factors to identify mutually exclusive parental risk constellations with latent profile analysis approach [17]. The latent profile analysis was conducted using Mplus with a default MLR estimator for all available data to classify family risk profiles based on indicators of parental drinking, mental health, and years of education at the time of each child's participation in the Young-HUNT [17]. Table 1 provides a conceptual overview of the five identified parental risk constellations. LP1 was characterized by low education for both parents; LP2 by multiple risks in both parents: low education, mental-health symptoms indicating mild disorder and weekly binge drinking -approximately 4 alcohol units once per week for women, and approximately 11 alcohol units twice per week for men; LP3 by low overall risk in both parents: some higher education, good mental health, and infrequent low-quantity drinking. The only potential risk factor in LP4 was weekly binge drinking in both parents -about 4 alcohol units per drinking occasion twice per week for women, and about 5 alcohol units twice per week for men. LP5 have multiple risk factors: frequent and high-quantity drinking in both parents and mental-health symptoms suggesting mild disorder in fathers. --- Outcomes We examined dispensation of prescription medication for sleep problems and anxiety/depression as annually recorded in NorPD between 2008 and 2016. NorPD covers information on prescription drugs dispensed at pharmacies in Norway . Offspring participants were categorized into four mutually exclusive groups: neither sleep nor anxiety/depression medications dispensed during the study period; sleep medications dispensed at least once during the study period; anxiety/depression medications dispensed at least once during the study period; and both sleep and anxiety/depression medications dispensed at least once during the study period. Table 2 shows an overview of ATC codes used to identify prescription drugs for sleep problems and/or anxiety/ depression. --- Covariates Offspring demographic characteristics included: age at baseline survey participation, age at first registry followup in 2008, and sex. Frequencies of offspring's current sleep problems during adolescence were assessed with the two Young-HUNT questions: "Had difficulty falling asleep in the evening" and "Woke too early and couldn't fall asleep again". Because of the low frequencies in the two most severe categories, the original response options of "never", "sometimes", "often" and "almost every night" were recoded such that "often" and "almost every night" categories were collapsed. A composite variable capturing the entirety of early sleep problems was computed as a sum of the two original items. Severity of offspring's current mental-health symptoms during adolescence were assessed with the five-item Hopkins Symptoms Checklist administered as part of the Young-HUNT survey [50]. SCL-5 scores were categorized to reflect the top 25% of the distribution versus the rest. Missing responses were retained as a separate category to prevent loss of data. Sensitivity and specificity for SCL-5 have been estimated at 82% and 96% [50]. Adolescent alcohol use has also been associated with sleep problems [51]. We therefore included early indicators of alcohol consumption as a covariate. Number of alcohol units consumed during a typical two-week period were categorized to reflect typical bi-weekly alcohol consumption of no alcohol use, 1-5 units, and > 5 units. Missing responses were retained as a separate category to prevent loss of data. As in our previous studies [17,52,53], we did not use any advanced methods for handling missing data for these covariates; missing data on the two categorical variables, self-reported mental health and early indicators of alcohol consumption, were coded as separate categories of "no valid report" to prevent data loss. Therefore, our analytical n was not reduced, and all reported estimates are based on N = 8,773 offspring. --- Statistical analyses We reported basic descriptive statistics for the sample, and for exposure and outcome variables. We used multinomial logistic regression to model the odds of the outcomes --that is, offspring's use of no prescription medication, sleep medications only, anxiety/depression medications only, and both sleep and anxiety/depression medication during the follow-up period --as a function of early parental risk constellations, with "no prescription" as a base comparison group. All analyses were conducted using the STATA mlogit command. Models were estimated with clustered robust errors to account for within-family nesting -cases in which multiple children in the same family. All models adjusted for all covariates; reported were thus adjusted Relative Risk Ratios , commonly interpreted as Odds Ratios , with corresponding 95% CI. --- Results Table 3 provides and overview number and percentage of adolescent and adult offspring in each outcome group. Results from the multivariate multinomial regression model are reported in Table 4. Compared to the lowest risk constellation, no other parental constellation was significantly associated with the risk of offspring receiving prescription medication for only sleep problems during the study period. Compared to the lowest overall parental risk constellation , two LPs were significantly associated with greater risk of offspring being dispensed both sleep and anxiety/depression prescription drugs during the study follow-up. Specifically, offspring in LP2, with binge drinking, mental health symptoms and low education in both parents and offspring in LP5, with frequent drinking in both parents and mental health symptoms in fathers . Finally, compared to the lowest overall parental risk constellation, the risk constellation characterized by low education in both parents was significantly associated with greater risk of offspring receiving prescription medication for only anxiety/depression during the study period; OR = 1.25, CI 1.05;1.49. --- Discussion In this large prospective cohort study, we found that parental risk constellations were differently associated with receiving medications for sleep problems in individuals depending on whether they also received medications for anxiety/depression during the study period. Offspring in the four risky constellations were not more likely than offspring in the overall low-risk group to receive sleep medications when they did not also receive anxiety/depression medication. Two risk constellations were associated with increased risk of receiving sleep medication when the offspring also received anxiety/ depression prescription drugs: the first is families with frequent drinking in both parents and mental health symptoms in fathers , and the second is binge drinking, mental health symptoms and low education in both parents . Offspring from families with low education in both parents were more likely to receive only prescription drugs for anxiety/depression and not for sleep problems . This was the first study to use a cluster approach to study the association between parental drinking, mental health and education, and subsequent offspring prescription drug use for sleep problems, which enabled us to disentangle the role of parental risk constellations in predicting prescription drug use for sleep problems with and without preceding, co-occurring or following anxiety/depression prescription drug use. We found that parental risk constellations were not associated with the likelihood of being dispensed sleep medication when this prescription was not preceded or followed by medication for anxiety/depression. This is in contrast to findings in previous studies that showed an effect of parental drinking, parental socioeconomic status, parental mental health on other offspring sleep outcomes [18][19][20]26]. For instance, two US studies showed an association between parental drinking on preadolescents sleep problems, measured by actigraphs, and that the effect was stronger in families with low socioeconomic status [18,19]. One of these studies controlled for early indicators of anxiety and depression at baseline [18], the other did not [19], and neither of the studies addressed whether sleep problems at follow-up occurred in conjunction with anxiety/ depression. Our findings contrast those of a recent study from the US, which examined the association between parental depression and sleep problems in preadolescent offspring [26]. Offspring whose parents had depression were at increased risk of sleep problems compared to offspring of non-depressed parents [26]. Further, parentreported lower socioeconomic status was also associated with increased risk of offspring sleep problems [26]. The study controlled for offspring anxiety and depression symptoms, and to avoid confounds, sleep items were removed from the anxiety and depression measures [26]. Our findings also contrast those of a Canadian study which showed that adolescents low subjective socioeconomic position, were associated with lower self-reported sleep quality, also after controlling for adolescent anxiety and depression [20]. Our findings that two parental risk constellations were associated with increased risk of being dispensed sleep medication, when also being dispensed anxiety/depression prescription drugs, could be interpreted as supporting the abovementioned studies, which showed an association between parental drinking, mental health, and SES, on offspring sleep problems [18][19][20]26]. However, most adolescents with depression, also have sleep problems, and those who do, tend to have more severe depression [33,54]. A plausible explanation, therefore, is that since none of the parental risk constellations predicted receiving sleep medications only, what the parental risk constellations predict are the more severe cases of anxiety/depression, which are also dispensed prescription drugs for sleep problems. The finding that only one parental risk constellation was associated with receiving only anxiety/depression drugs, adds support to the interpretation that parental risk factors are primarily associated with the most severe cases of anxiety/depression, which typically occur in conjunction with sleep problems. This sheds light on our previous work, where we found an association between some parental risk constellations and subsequent treatment for anxiety/depression in offspring [17]. Seen in the light of the finding from the current report, the associations observed in our previous work were likely largely driven by more severe cases, with both sleep problems and anxiety/depression. Our study extends and adds nuance to the research on parental risk factors as predictors of offspring sleep problems. Taken together, our findings suggest that parental risk constellations of drinking patterns, mental health, and education, are not associated with offspring receiving prescription drug treatment for sleep problems, in cases where they do not also receive medications for anxiety and/or depression. The findings underscore the importance that studies primarily examining sleep problems, control for anxiety and depression to tease out the associations pertaining to sleep. As our results show, there may otherwise be a risk that associations that stem from anxiety/depression be misattributed to sleep. This problem does not extend to anxiety/depression research, where sleep symptoms are included among the symptoms of anxiety/depression. Future research should develop interventions that educate parents about the effect their alcohol use and mental health may have on their offspring , and provide support and advice on self-care and reducing alcohol use; this can alleviate the problems experienced by the parents, which in turn will likely benefit their children. Prescription drugs remain the most frequently used treatment for sleep problems in Norway. GPs, adolescents, and young adults with sleep problems, and parents of adolescents with sleep problems should consider other alternatives to prescription drug treatment for sleep problems. For instance, GPs should advise on good sleep hygiene, including information about where patients can find additional resources. GPs should also provide information about alternatives, e.g., the possibility of attending courses and individual guidance sessions at community wellness centres. Further, recent studies have tested the effect of online CBT interventions for reducing sleep problems in a Norwegian setting; results showed that this is an effective approach in reducing the severity of symptoms associated with sleep problems [55,56], suggesting that such online tools should be made widely available, and tried before prescribing prescription drugs for sleep problems. --- Methodological considerations Major strengths of the study include the large sample size, the prospective design, practically no attrition, the use of person-centered approaches that identified parental risk profiles based on information obtained from both mothers and fathers. The study has several limitations, that should be taken into consideration when interpreting the results. Our sample consisted of two-parent families where mothers, fathers and adolescents participated in HUNT. While this limits generalizability to other family constellations, an advantage with the approach is that it steers clear of the single data source limitations and biases that previous studies are fraught with, e.g. information about parental characteristics is provided by the adolescents only, or by the adolescent and just one parent [57]. We used self-report data at baseline, this may have resulted in underreporting, inaccurate recall and selective reporting [58]. In addition, even though registry linkages ensured no loss in terms of follow-up data, not all participants reported their alcohol use and/or depression/anxiety symptoms during adolescence when they completed the HUNT survey. We aimed to preserve these cases by simply treating them as a separate "no valid report" category in all analyses, but this may have somewhat biased the estimates [59]. However, it should be noted that the addition of covariates did not substantially alter the associations between primary exposures and outcomes in our model, as evident in comparable estimates obtained from the unadjusted and adjusted model. Our registry-based outcomes are conservative as they only include individuals that have self-selected into seeking help for, been diagnosed with a disorder, and received prescription drugs for treating these disorders. We used NorPD to capture the outcomes of interest instead of healthcare utilization databases. The rationale is that in consultations with general practitioners , patients often raise several health issues, and while some GPs records all the issues in the primary healthcare database, many record only the primary reason for the consultations, thus if sleep problems, or anxiety/depression were not the primary reason, these problems are not captured in the database. Thus, for looking at anything but primary diagnoses/main reason for contact, the primary healthcare database is less reliable than the NorPD, which captures all prescriptions dispensed. For our purpose, NorPD is therefore more reliable, because all who receive prescription drugs are issued prescriptions after consultation and diagnosis by a medical doctor. Consequently, this approach does not capture the population prevalence of sleep problems and/ or anxiety/depression, which is likely substantially higher, only cases that are both diagnosed and receive treatment with prescription drugs. Further, while prescription drugs are, by far, the most frequently used treatment for sleep problems in Norway, several support resources for sleep problems are not picked up in a study such as ours, e.g., online interventions to support sleep [55], and individual consultations, and courses on how to achieve better sleep at wellness centers in the municipalities. It may be that these resources are used by a different group of individuals that struggle with sleep problems than those that receive treatment with prescription drugs. Unfortunately, given the nature of our data, we cannot say whether this is the case. Sleep problems, as captured in NorPD, may include cases that receive prescription medication for sleep problems due to transient situational factors, such as stress, bereavement, relationship problems. It seems plausible that parental factors are less important for such problems. However, given the nature of the of the data, we have no way of identifying whether the prescription drug use was due to transient situational factors or not. Further, while we know that patients were dispensed the prescription medications, we do not know whether they used them. It should also be noted that some of the prescription drugs used to treat anxiety/depression are also sleep inducing; thus, some patients that experienced both depression/anxiety and sleep problems, who received these prescription drugs, may have had both of their problems solved with one medication. The study does not account for off-label use of other types of medications that may have been used to alleviate sleep problems, or use of non-prescription drugs. Finally, we use the long follow-up time as a rationale for separating between sleep problems with and without preceding, cooccurring or following anxiety/depression. However, nine years is not lifetime, and we can only generalize to the years for which we have data. It is possible that study participants received prescription drugs that contradicts this assumption after follow-up ended in 2016, and for the oldest cohort, during the years preceding registry followup start. --- Conclusion The role of different constellations of parental risk, characterized by drinking quantity and frequency, mental health, and education played in predicting offspring's subsequent sleep problems is nuanced. While no parental risk constellations were associated with increased risk of offspring receiving prescription drugs for only sleep problems, during the nine-year study period, two were associated with increased risk that offspring received prescription drugs for both sleep problems and anxiety/ depression. The findings underscore the importance that sleep studies control for anxiety/depression. --- Authors contributions Dr Lund acquired the data, contributed to the study conceptualization, study design, data analysis strategy, and analysis aspects, interpreted results, drafted the initial manuscript, and reviewed and revised the manuscript; Dr Andreas contributed to the study conceptualization and design, data analysis strategy, conducted the data analysis, interpretation of results, and critically revised the manuscript for important intellectual content; Dr Andersen assisted in the study conceptualization, interpretation of results, critically reviewed the manuscript for important intellectual content, Dr Ask assisted in analysis aspects, interpretation of results, and critically reviewed the manuscript for important intellectual content. All authors read and approved the manuscript and agree to be accountable for all aspects of the work. --- Funding --- Data Availability Norwegian legislation prohibits sharing data from this project. However, other researchers that wishes to use HUNT and Registry data used in this project can apply to the Regional Committees for Medical and Health Research Ethics . Applicants and projects must fulfill requirements in Norwegian regulations and laws concerning research and protection of personal information , and project proposals must also be approved by the data owners. Guidelines for application to REK can be found here: --- --- --- Competing interests The authors declare no competing interests. ---
Background Parental drinking, mental health and family socioeconomic status are all associated with offspring sleep problems, but there is a paucity of research that considers the effect of risk factors, as they co-occur within and across families. Also, sleep problems are closely linked with mental health problems. Disentangling the effects on one or the other are important. We examined whether parental risk constellations are differently associated with offspring's subsequent prescription drug use for sleep problems during nine years with or without prescription drug use for anxiety and/or depression.The sample included 8773 adolescent offspring of 6696 two-parent families who participated in the Nord-Trøndelag Health Study in Norway. The exposures were five parental risk constellations, previously identified via Latent Profile Analysis, characterized by drinking frequencies and quantities, mental health, and years of education. The outcomes were dispensed prescription drugs in offspring during 2008-2016 for (a) only sleep problems (b) sleep problems and anxiety/depression or (c) only anxiety/depression. We used multinomial logistic regression to model the odds of the outcomes.Compared to the overall low-risk parental constellation, none of the risky constellations were significantly associated with increased risk of being dispensed prescription drugs only for sleep problems. Offspring from two different risk profiles were at increased risk for being dispensed both sleep and anxiety/depression prescription drugs. These were parental profiles marked by (1) low education, symptoms of mental health problems and weekly binge drinking in both parents (OR 1.90, CI = 1.06;3.42); and (2) frequent heavy drinking in both parents and symptoms of mental health problems in fathers (OR 3.32, CI = 1.49;7.39). Offspring from the risk profile with lowest parental education had increased risk of only anxiety/depression prescription drugs (OR 1.25, CI = 1.05;1.49).
Introduction Cervical cancer is one of the leading causes of cancer among women worldwide, with more than 85% of cervical cancer cases occurring in developing countries . Many refugee groups in the United States emigrated from countries where the incidence of cervical cancer is high . Additionally, many refugee women come from countries where cervical cancer screening is limited and are unlikely to have been screened prior to resettlement . A study of refugee women recently resettled in Texas, found that less than 25% had received any screening for cervical cancer, in contrast to almost 90% of all U.S. women . Because cervical cancer is preventable and highly treatable upon early detection, there is a need for effective interventions to increase cervical cancer screening among refugee women in the U.S. . During the first eight months of resettlement, all refugees arriving in the U.S. receive health insurance and assistance accessing medical care . While the Affordable Care Act has increased insurance coverage in refugee communities, many refugees still become uninsured after this period and face barriers to accessing health care . Therefore, it is important that refugees receive preventive care during the early resettlement period. The Centers for Disease Control and Prevention recommend that refugee women receive cervical cancer screening soon after resettlement . Further, cervical cancer screening is the one chronic disease prevention strategy that the Canadian Collaboration for Immigrant and Refugee Health recommends prioritizing for recently resettled refugees . Despite these recommendations, few programs have been developed to promote cervical cancer screening uptake among refugee women during the initial resettlement period. Most previous studies on cervical cancer screening among refugee populations have focused on the perspectives of refugee women . However, social service organizations and healthcare facilities play an important role in providing health education and services to refugees in early resettlement. Our study sought to identify factors influencing the promotion of cervical cancer screening among refugee women from the perspective of providers. We conducted qualitative in-depth key informant interviews with providers from voluntary resettlement agencies , community based organizations , and primary care clinics serving refugee women to inform strategies for increasing cervical cancer screening in this vulnerable population. --- Methods --- --- Study Procedures Trained research staff conducted in-depth interviews between April and September of 2015. Interviews were conducted in person and in English and lasted approximately one hour. Interviewers used an interview guide with a core set of questions for all interviews, and additional questions that varied depending on the type of organization being interviewed . The guide included questions on providers' perceptions of factors influencing refugee women's decisions around cervical cancer screening, views about the need for and value of health care and health education for refugee women, recommendations for providing cervical cancer screening education to refugees, and organizational capacity to implement and provide health education . In addition, key informants were asked to complete a demographic questionnaire prior to each interview. All interviews were audio recorded and professionally transcribed for analysis. Participants provided verbal consent, and the Institutional Review Board of the Fred Hutchinson Cancer Research Center approved all study procedures. --- Data Analysis Interview transcripts were analyzed using an inductive and deductive approach. We developed a coding scheme based on the interview guide, previous literature, and an initial review of the transcripts. Examples of individual codes in the coding tree included timing of health education provision, timing of health care provision, modalities of health education provision, format of health education provision, content of cervical cancer screening education, and factors impacting quality of care. Three members of the research team directly contributed to the data analysis, and two members of the research team coded each transcript. Identified codes were then consolidated across reviewers and entered into Atlas.ti. Coders met to review and reconcile codes as needed. Finally, the research team reviewed coded quotations to identify prevalent themes across participants. --- Results --- Participant Characteristics We approached and contacted 22 social service and healthcare providers from VOLAGs, CBOs, and PCCs in the Seattle metropolitan area for participation in this study. Among those who were approached, 21 completed in-depth interviews . Table 2 shows the demographic characteristics of the participants in the study. The majority of participants were female and their ages ranged from 23 to 65 years old . Participants from VOLAGs included case workers and program coordinators; and participants from CBOs included social workers, program managers, and executive directors. While most participants from PCCs were healthcare providers , several clinic managers were also included. --- Interview Themes We identified five main themes from the in-depth key-informant interviews: 1) refugee women are unfamiliar with preventive care and cancer screening upon arrival in the U.S.; 2) providers have concerns about the timing of cervical cancer education and screening; 3) linguistic and cultural barriers impact cervical cancer screening uptake; 4) provider factors and clinic systems facilitate promotion of cervical cancer screening; and 5) strategies for educating refugee women about cervical cancer screening. Theme: Refugee women are unfamiliar with preventive care and cancer screening-Providers indicated that upon arrival in the U.S., refugees are often unfamiliar with the term or concept of preventive care. As one clinic provider stated, "They are not used to preventive medicine, and so going regularly to a primary care physician is not something that they're familiar with. And the systems they come from are quite different." Participants shared that their refugee clients often only seek healthcare when they have symptoms that need to be addressed and are unfamiliar with tests or procedures to identify disease at early stages, such as cervical cancer screening. Another clinic provider noted: "It's been difficult to explain what cervical cancer screening is... It doesn't seem routine in their country. I mean, I don't think if they've ever had it, I don't think that they know what it was for or had any education about it." Most of the providers were sympathetic to the overwhelming and competing concerns of their refugee clients during resettlement. They shared that although refugee women value their health, many are facing competing social and economic priorities, such as securing stable housing, food for their families, and employment as well as learning the English language. Therefore, preventive health care is often a low priority. As one staff member at a CBO explained: "I think one of the hard things is when people first come in, it's like drinking out of a firehose. There is a lot of knowledge that's given, and it's hard for people to... prioritize what they need to know... Prevention is such a very different model for our clients. Many of them have never been exposed to preventative care before." Theme: Providers have concerns about the timing of cervical cancer education and screening-Some participants from VOLAGs and CBOs felt that providing cervical cancer screening education was not their responsibility. When asked about the types of health education that are provided to refugee clients, one resettlement agency staff member said: "We do pretty basic -just medical care access and information." In reference to cervical cancer prevention and screening education in particular, the same staff member said: "Yes, we kind of leave it up to the primary care providers or the specialists to provide that information." A staff member from a different resettlement agency reported a lack of clinical training and expertise, which made her hesitant to discuss cervical cancer screening with her clients. She said: "The one other concern is that we don't want to confuse the role of our agency. We find that a lot of refugees understandably cannot distinguish, or it takes them a while to distinguish the different roles of all of these various institutions that are assisting them. We wouldn't want people coming to [resettlement agency] asking questions that we aren't necessarily in a position to be answering." Several PCC providers acknowledged that their staff's lack of knowledge and their own discomfort made them less likely to discuss cervical cancer screening with their refugee patients. As one clinic provider noted, "It is something that's hard to talk about... I think that our own clinical staff doesn't have strong knowledge on like why do we do these tests." Some providers were also concerned with the timing of when to schedule a pelvic exam. Another clinic provider said: "That first visit is scheduled as a physical. Usually, that's our time to do a lot of the screening, and especially a gynecological exam with women. At the same time, like it's really uncomfortable for a very first refugee appointment to do a pelvic exam. Sometimes we'll say, 'Oh, we can do that later on in the year'." Clinic providers expressed concerns about the limited amount of time allowed for initial refugee primary care clinic visits, which can cause providers to delay cervical cancer screening discussions and exams. One provider explained: "There are too many other issues that need to be dealt with first." Similarly, the same provider worried that the invasiveness of Pap smears and pelvic exams may cause some providers to delay cervical cancer screening with new refugee patients and explained: "They might worry about offering a somewhat invasive test in one of the first few times you're meeting with a patient." Theme: Linguistic and cultural barriers impact cervical cancer screening uptake-In PCCs, providers identified language barriers as a factor that makes cervical cancer screening challenging among their refugee patients. As one provider said: "Number one, if they don't have an interpreter which is very likely... they cancel the appointment, because there is no one to translate." Another clinic provider felt that language and cultural barriers between providers and patients make conversations about cervical cancer screening very challenging. She stated: "Trying to explain [cervical cancer screening] through an interpreter is a challenge... and so I would imagine that some clinicians just don't try." A CBO staff member expressed concern that cultural factors might make refugee women hesitant to discuss reproductive health topics. She explained: "Culturally, if you're talking about the private parts of the body, you know, and things like that. Especially reproductive health is something that is so secret, or it's something that people don't feel comfortable to talk." One refugee resettlement staff member described the process of making initial appointments for her refugee clients with their primary care providers and how this process is influenced by cultural factors: "When I do make an appointment... the scheduler will ask me, 'Do they want to do their Pap smear?' I won't have an answer. And then I'll say 'No maybe not at this time' because of some culture issues. I just don't want to schedule it without them knowing what they're going to be going through, and so I don't schedule a Pap smear. Maybe that's one of the shortcomings that we have, but it's just to protect them and their wishes, because I don't know what's their wish." Theme: Provider factors and clinic systems facilitate promotion of cervical cancer screening-Participants noted several factors that promote cervical cancer screening and education among refugee women, including trusted relationships with providers and female providers. One physician explained, "Another thing that happens with a lot with refugee immigrant communities is that they... appreciate [a doctor] that seems to genuinely care." A staff member from a VOLAG also noted that women who had a trusting relationship with a healthcare provider are more likely to get screened. She said: "The trust issue is important, you know, if you want to do anything." Providers noted that having female interpreters and clinicians can often help refugee women feel comfortable during cervical cancer screening exams. One staff member from a CBO said: "If you are interviewing a woman, if a male individual tries to interview them, probably they will not get any answer from them. If you're interviewing a female, probably I would suggest you to have a female interviewer and a female interpreter as well." A physician also stated the importance of having female interpreters available for clinical visits. She shared: "I think for most patients... when I say 'Let's make another appointment for this and we'll try really hard to get a female interpreter, so they do come back." Several participants also mentioned clinic systems to identify patients who are due or overdue for recommended preventive health and cancer screening exams are facilitators. In one clinic, staff members were responsible for tracking and calling patients who are overdue for cancer screening exams. The provider explained: "[Clinic name] is really big on meeting our care guidelines. Cervical cancer screening is one of our care guidelines, and so we have like an alert in the chart. If they're not up to date with any of their care guidelines, it will prompt us to ask about it." Theme: Strategies for educating refugee women about cervical cancer screening-Providers offered recommendations on how increase cervical cancer screening among their refugee clients. Many felt that it is important to repeat specific health messages throughout the resettlement process, including prior to resettlement , early in resettlement and several months to years after resettlement. One VOLAG staff member stated that refugee clients in the early resettlement period are overloaded with new information and may not be able to remember everything they learn. She said: "I feel like we give them so much information in a very short period of time and so they get a lot of challenges from that. You tell them something and you give them information, and then in a few days they say that they don't know; nobody told them." Another provider from a CBO recommended: "Education should always be ongoing, but I believe that early in the resettlement process is always good. One thing I've realized is that although refugees when they first come to the country, they're very overwhelmed and all of that, but they're also very receptive to information... I mean it's like planting a seed that's always going to be there in the back of their minds." Providers suggested that health information and educational materials for refugees should be in their native language, presented in a way that could be understood by those at various levels of literacy, and use images rather than text. One CBO staff member said: "The more graphic it is the better it is for the people, and less wordy... I think it's our job to make the materials to the level that [refugees] can understand it." Providers also noted that linguistically appropriate materials allow women to received health education without the need for an interpreter and can help staff members cover topics that are unfamiliar to them. In addition, multiple providers endorsed video as a useful format for providing health education to recently resettled refugees. When providing information on cervical cancer screening, in particular, providers suggested that educational materials cover basic information about female anatomy for their refugee clients. In addition, providers felt that for sensitive topics, such as cervical cancer screening, refugee clients' family, friends, and community members can be helpful and trusted sources of information and thus may be effective in disseminating information to new refugee arrivals. For example, one clinic provider said: "I think if the message is coming from me, I think that it would be less -the ideal person is a female of their culture. For most cultures around the world that is the case. If that can't happen, then at the second level at least a female, and then if that can't happen then maybe someone that speaks the language. I'm just trying to think of who would you like to deliver the message, because that's the key -who and then when." --- Discussion To our knowledge, this study was the first to describe providers' perspectives on promoting cervical cancer screening among recently resettled refugee women. Providers in our study identified several factors that contribute to low rates of cervical cancer screening in this population, including unfamiliarity with cervical cancer screening among refugee women and some providers. However, they also recommended specific strategies for promoting screening, including providing culturally tailored health education in multiple settings. Below, we discuss the implications of our findings for both further research and practice. Our findings were consistent with previous research suggesting that many refugee women are unfamiliar with the concept of preventive care and the importance of cervical cancer screening . Specifically, providers noted the need for materials that include basic information about female anatomy and reproductive health so women can better understand both the importance of screening and cervical cancer screening procedures. Providers also emphasized that health education materials should be in the women's native language, and appropriate for women with varying levels of health literacy. They thought videos may be particularly effective in communicating with this population about health topics. Previous studies have found that culturally tailored videos can be effective in increasing knowledge and changing screening behaviors among immigrant women . Videos have been used effectively for providing prenatal education among Somali refugee women . Further research should focus on developing and testing health education materials that increase both cervical cancer knowledge and screening behaviors among recently resettled refugee women. We found that refugee women's lack of knowledge about cervical cancer screening was compounded by the competing priorities they face during early resettlement . Providers suggested that early and frequent messaging about cervical cancer screening could help ensure that women receive screening before losing their initial health insurance benefits. Although staff members from VOLAGs and CBOs are often the first providers to come in contact with new refugee arrivals, they may have limited knowledge and training about cervical cancer screening, which impacts their ability to provide accurate and appropriate information to their refugee clients. Additionally, healthcare providers are hesitant to screen women on their initial appointment, given the need to develop rapport and address other more urgent health concerns. Having culturally tailored educational videos available in clinics, VOLAGs and CBOS could address this gap. Healthcare providers could use the video at an initial or other early visit and then encourage women to return for cervical cancer screening. Similarly, VOLAGs and CBOs could show the video to women when providing other services and then offer to help them schedule a cervical cancer screening appointment. This study also has important implications for providers and healthcare clinics serving refugee women. First, participants emphasized the importance of female clinicians and interpreters when providing cervical cancer education or screening to refugee women. This is consistent with previous studies that have found limited English proficiency and having a male provider are barriers to cervical cancer screening for other refugee and immigrant women . Organizations serving refugees should offer female providers and interpreters for cervical cancer screening appointments whenever possible. Participants noted the benefits of having reminder systems that flag both the providers and patients when they are due for screening. Such systems could be used to remind providers that a woman has not been screened for cervical cancer at each clinic visit. Healthcare systems may benefit from tracking systems in electronic medical records which also flag patients' language and gender preferences for clinicians and interpreters. --- Limitations The study findings should be interpreted within the context of limitations. While 15-20 interviews are generally agreed to be sufficient for identifying major themes about a topic, and we recruited and analyzed data until we reached saturation, our sample was relatively small and all the study participants were from one geographic area of the U.S . Additionally, the health care providers in our sample were all from primary care clinics, and the sample did not include specialty providers who may also have important roles in providing care to refugee patients. Finally, our findings suggest that interpreters could potentially provide another important perspective on the experience of refugee clients. --- Conclusions Refugee women need to receive culturally tailored health education about cervical cancer screening repeatedly during early resettlement. Health education programs for recently arrived refugees should involve repeated messaging in multiple settings during the resettlement period, and utilize linguistically appropriate audio-visual materials. Voluntary resettlement agencies, community based organizations, and healthcare clinics that serve recently resettled refugee women can all play an important role in providing health education materials to this vulnerable population. Appointments with female clinicians and interpreters, as well as clinic systems that remind clinicians to offer screening at each appointment could increase screening among refugee women. --- --- Table 1 Examples of interview guide questions for key informant interviews --- Examples of general questions for VOLAGs, CBOs, and PCCs * • What groups of people are served by [insert organization]? • Could you briefly summarize the services that [insert organization] provides for refugees? • How much training do staff members at [insert organization] receive on health topics? • Does [insert organization] provide any group/individual education programs for refugees? Do any of the programs address health issues? If so, please describe these programs. • Does [insert organization] use educational materials to provide information to refugees? If so, what kind of materials? • What do you think are the most important health issues for recently resettled refugees? • When do you think disease prevention should be discussed with refugees? • Would [insert organization] be willing to participate in a program that focused on cervical cancer screening education for recently resettled refugee women? --- Examples of specific questions for providers from PCCs • Can you briefly summarize the health care services that [insert clinic] provides for refugees? • Does [insert clinic] provide any health care services specifically for recently resettled refugees? Could you tell me about them? • What types of staff are involved in patient care for refugees at [insert clinic]? * VOLAG = volunteer resettlement agency; CBO = community based organization; PCC = primary care clinic
Objective-Many refugees in the United States emigrated from countries where the incidence of cervical cancer is high. Refugee women are unlikely to have been screened for cervical cancer prior to resettlement in the U.S. National organizations recommend cervical cancer screening for refugee women soon after resettlement. We sought to identify health and social service providers' perspectives on promoting cervical cancer screening in order to inform the development of effective programs to increase screening among recently resettled refugees. Methods-This study consisted of 21 in-depth key informant interviews with staff from voluntary refugee resettlement agencies, community based organizations, and healthcare clinics serving refugees in King County, Washington. Interview transcripts were analyzed to identify themes. Results-We identified the following themes: 1) refugee women are unfamiliar with preventive care and cancer screening; 2) providers have concerns about the timing of cervical cancer education and screening; 3) linguistic and cultural barriers impact screening uptake; 4) provider factors and clinic systems facilitate promotion of screening; and 5) strategies for educating refugee women about screening. Conclusion-Our findings suggest that refugee women are in need of health education on cervical cancer screening during early resettlement. Frequent messaging about screening could help ensure that women receive screening within the early resettlement period. Health education videos may be effective for providing simple, low literacy messages in women's native languages.
Introduction Sickle cell disease is a group of inherited blood disorders in which recurring attacks of acute painful episodes are the most common reason for hospital admissions 1 -4 and the cause of frequent hospitalizations. 5,6 SCD patients with high rates of painful episodes and frequent hospitalizations have also been found to have a higher mortality than those with low rates. 7 Hospital admissions for SCD in England have increased substantially in recent years, particularly in London. 8 Although health outcomes have improved with more patients now surviving into adult life, many patients still experience emergency admissions for complications of SCD, with many patients also experiencing readmissions. 5,6 Identifying factors that predict risk of readmission in SCD patients could help in targeting groups particularly at risk, thereby improving their health outcomes, quality of life and reducing the burden on the National Health Service from SCD. Few prior studies have examined the healthcare utilization of SCD patients in England. 9 In a recent study, we showed that admission rates for SCD in England are increasing; and wide variations in admission rates amongst primary care trusts, especially in London exist. 8 There has been limited research in England examining the influence of socio-economic characteristics on the risk of SCD admission. 10 The aim of this study was to investigate trends in the rates of emergency readmissions in England for patients with SCD, to determine inpatient mortality and to assess whether there is an association between deprivation and comorbidity with risk of readmission and inpatient mortality. --- Methods We obtained data over a period of 6 years from the national Hospital Episode Statistics database . HES is the national administrative database for hospital activity in England and contains data on all admissions and outpatient appointments in the NHS, including patients whose treatment is funded by the NHS but performed in private hospitals. 11 HES data contain details on the diagnoses of every patient admitted to an NHS hospital in England; diagnoses are coded using the International Classification of Diseases version 10 . Patients can be coded as having up to 20 different diagnoses. This analysis included patients with a primary diagnosis or secondary diagnosis of sickle cell anaemia with crisis or sickle cell anaemia without crisis. The financial year 2005/06 was taken as the index year for this analysis, and all patients admitted with a primary or a secondary diagnosis of SCD in this year were identified and classed as SCD patients in our cohort. Secondary diagnoses are only meant to be coded if they are related to the reason for admission. For patients who were admitted more than once in the index year, their first admission was used as the index admission. Pseudonymized patient identifiers were used to identify subsequent hospital admissions for the patients identified in the index year. Outcome variables used were emergency hospital admissions, in-hospital mortality and emergency readmissions to hospital. Predictor variables used in this analysis were age group, sex, national deprivation group 12 from 1 to 4 , whether the index diagnosis was a primary or secondary diagnosis for SCD, whether the index diagnosis was for an SCD crisis or not and Charlson comorbidity index score. The Charlson score classifies patients into groups depending on the number and severity of their comorbidities on admission, with higher Charlson scores reflecting patients having a higher risk of mortality within 10 years. 13 For multivariate analysis, a combination diagnosis variable was created to compare those admitted with SCD as a secondary diagnosis; those admitted with a primary diagnosis of non-crisis and those admitted with a primary diagnosis of a crisis. Descriptive statistics for the number of admissions and deaths in an index year were first produced and then summarized for study years individually. Cox proportional hazards models were used to examine the association between patient demographic variables and the likelihood of emergency admission over the time period as well as in-hospital mortality. For patients admitted more than once during the study period, only the first readmission was used. All of the variables mentioned previously were used in these models. All statistical analyses were performed using the programme STATA w version 12. Figure 1 shows the unadjusted cumulative time to readmission curves by national deprivation group among those with a primary admission for an SCD crisis . Patients in the least deprived group were less likely to be readmitted over the whole time period compared with all other levels of deprivation. For example, 39.6% of the patients in the most deprived group were admitted at least once within 2 years, compared with 20.2% for the least deprived group . Table 2 shows the annual percentages of readmissions by the demographic variables. Over the whole period, those patients aged 10-19 had the highest risk of readmission , as did those with SCD as a primary diagnosis and those with an index admission for an SCD crisis . Those in the national deprivation group 1 were more likely to have a readmission over the whole period than those in national deprivation group 4, the least deprived group . Table 3 shows the annual in-hospital mortality by the demographic variables. Patients in the national deprivation group 1 were more likely to die in hospital over the whole period than those in national deprivation group 4 . Those with an index admission not for an SCD crisis were more likely to die than those with an index admission for a crisis , and those with a Charlson score of 2 or more were most likely to die in hospital over the whole period . Results from Cox proportional hazards models are given in Table 4. These show that over the time period, those in national deprivation group 1 were more likely to be readmitted than those in national deprivation group 4 [hazard ratio 2.97, 95% CI 2.57 -3.43]. Those with a Charlson comorbidity score of two or more were more likely to be readmitted than those with a score of 0 . Those with a primary diagnosis of SCD crisis were more likely to be readmitted than those with a secondary diagnosis of SCD , as were those with a primary diagnosis of crisis . For in-hospital mortality, those in national deprivation group 1 were more likely to die in hospital than those in national deprivation --- Discussion --- Main finding of this study There is a higher frequency of SCD readmissions in areas of increased socio-economic deprivation. Some of the readmissions we observe may be due to new hospital episodes, but we still observe lower rates in less deprived places. The majority of readmissions and highest inpatient mortality occurred in patients living in the most socio-economically deprived areas, with the highest risk of admission for patients aged 10 -19 and highest risk of death in people aged .50. The highest risk age group highlights the importance of adolescent transitional care in patients with SCD 14 -16 and supports a concept analogous to the 'inverse care law' where differentials in access to care vary inversely with the population most at need. 17,18 Death rates are higher in those with Charlson of 2 or more suggesting death rates are higher in patients with increased comorbidities . Much remains unclear about the influence of socioeconomic status on SCD. However, the wider SES and chronic disease literature indicates a number of ways in which those coming from the most deprived sector may experience increased hospital readmissions, excess in-patient mortality and consequent inequalities in health care. 19 --- What is already known on this topic Within London, around 80% of all SCD admissions are from people living in the most deprived areas. 1 A study in the London Borough of Brent showed that that 74% of total bed days are associated with patients with multiple admissions. 20 Studies have found that, in general, causes of hospital readmission for patients with SCD included premature discharge, withdrawal syndrome and the occurrence of new acute [sickle cell crisis] episodes. 5 SES may also influence the way healthcare providers manage chronic disease. A study by Struthers et al. 21 showed an increased rate of hospital readmissions in those with lower SES for congestive heart failure independent of disease severity. The researchers suggest that this may be due to a number of reasons which included primary care providers in deprived areas having less time to invest in adequate disease management. Primary care providers working in deprived areas may also perceive their patients as having less capacity to understand and manage their own condition, 16 and patients living in a deprived areas may perceive that their community medical resources are insufficient to manage them and 'push' for hospital admission. 21,22 Another factor that may contribute to increased SCD readmissions, particularly amongst the most deprived patients, is patient self-discharge. A study in England found that 14% of their sample of SCD patients reported having self-discharged from hospital. The most common reasons given by the SCD patients for self-discharging were being 'tired of waiting for pain relief '; potential conflicts related to suspected analgesics abuse and because they just simply wanted to go home. 23 Ballas and Lusardi 5 also suggest that the decision by the patient to leave the hospital may be due to family pressure, childcare or fear of loss of job if the patient is employed. A similar study published in the USA found a much higher rate with 46.5% of their sample of SCD patients discharging themselves from hospital. 24 and health outcomes amongst people from this population. This continued to be true after adjustment for age and comorbidities between these populations, which might commonly be thought to contribute to these differences in readmission rates . Also, the age and comorbidity breakdowns were similar between the least and most deprived groups . Targeted intervention programs 29,30 that concentrate on a small number of 'high-risk' patients, such as improving access to appropriate care or adherence to medication protocols 31,32 provide genuine opportunities to prevent a large number of recurrent hospitalizations. Some readmissions may also be prevented through policy initiatives such as the development and implementation of local enhanced services for people with SCD. Local enhanced services are designed to meet local health needs and may therefore be particularly suitable for a condition such as SCD where the burden of disease is highest in a few urban areas such as London. --- Limitations of this study The data may be subject to missing, inaccurate or incomplete data not uncommon to the data collection process. However, the advent of diagnosis-based payment of hospitals has accelerated improvement of data quality in HES. 25 We were also unable to evaluate the impact of severity of SCD disease which may contribute to the risk of readmission and inpatient mortality, as information on this is not included in HES. Additionally, we know that the UK has a mobile population, especially in the young adult group who may be students temporarily resident in the low prevalence/least deprived areas. Their readmissions may therefore be elsewhere in the UK or beyond and could have had an impact on reported readmissions. Future papers could also focus on what the secondary diagnoses were that led to patient deaths and if they are linked to primary diagnosis of SCD or unrelated. We also did not examine post-discharge factors that could influence risk of admission. These factors include characteristics of the home environment; and the quality and continuity of health care of patients after they have been discharged from hospital including use of community/primary care facilities. Including postdischarge factors impact on readmission 26 could have provided further explanation into the pattern of SCD readmissions. --- What this study adds Hospital readmission rates in England have been used as a measure of poor healthcare performance at a local level or when making comparisons over time between hospitals. 27 However, there is a need to better understand the different factors that influence readmission rates for any disease specific category to control for extenuating factors that would impact on readmissions allowing a more thorough assessment of healthcare outcomes as well as more accurately defining potentially preventable readmissions. 28 Our study shows that SCD patients coming from the most deprived areas nationally experience higher rates of SCD hospital readmissions as well as inpatient mortality related to SCD, suggesting that there may be inequalities in access to health care --- Ethical approval Not needed as this study is based on an analysis of routinely available data. Permission to use HES data was given by the NHS Information Centre. ---
Background Sickle cell disease (SCD) is a cause of frequent emergency readmissions. We examined trends in SCD emergency readmissions and inpatient mortality in England in relation to socio-economic status. Methods Data from Hospital Episode Statistics were extracted for all SCD patients admitted in 2005/06. The financial year 2005/06 was taken as the index year for analysis. We calculated readmission rates and inpatient mortality for patients admitted with a primary or secondary diagnosis of sickle cell anaemia with crisis and without crisis in the index year during the subsequent 5 years (2006/07-2010/11). Charlson Score was used to measure comorbidity. Using Cox proportional hazards models, we also examined the relationship between patient characteristics and both emergency readmissions and inpatient mortality.In 2005/06, there were 7679 SCD index admissions. Over the subsequent 5-year period, patients living in the most socio-economically deprived areas were at highest risk of readmission (54.2% readmitted over the study period compared with 28% of the least deprived group). Inpatient mortality amongst readmissions was highest in patients living in the most deprived areas [hazard ratio (HR) 2.34, 95% CI 1.41-3.90]. Conclusion SCD patients from the most socio-economically deprived areas and with comorbidities are at highest risk of both SCD readmissions and in-hospital mortality, suggesting that there are inequalities in healthcare access and health outcomes amongst people with SCD.
Introduction The history of male nursing can be traced back to the infancy of the nursing profession. Men had already played an important functional role as nurses in military and nonmilitary activities from the 4th and 5th centuries and continued to be the leading providers of health care services into the 16th century . Until the mid-19th century, when Nightingale pioneered modern nursing, she firmly believed that nursing was a job for women, and male nurses were gradually marginalized . After that, women dominated the nursing profession, and it became more difficult for men to become nurses, influenced by gender role stereotypes . Gender role stereotypes are overt societal beliefs about the functional characteristics of men and women that inevitably influence career choices and development . As a result, men in nursing are often perceived as violating masculine norms or deviating from male gender roles and are thus labeled in negative ways, such as incapable, troublemakers, effeminate, homosexual, abnormal, and strange . Stereotypes can be a source of social prejudice and discrimination against male nursing students and male nurses . Male nurses often experience being denied care by female patients; also, some male nurses reported that they are easily watched in the hospital, making them uncomfortable . Male nursing students are prone to experiencing ridicule, isolation, and loneliness, and negative attitudes toward male nursing students are evident, especially among male non-nursing students . In addition, male nursing students often feel isolated, excluded, and treated differently in academic and clinical settings; for example, they are often singled out by female classmates or faculty for patient roles, and they learn to remain silent rather than actively and enthusiastically speak up in a predominantly female group learning environment . There is no denying the persistence of social stereotypes, prejudice, and discrimination against male nursing students and male nurses that may drive them away from the nursing profession . Prejudice is a negative evaluation of a social group or person based primarily on the individual's group membership . Perceived prejudice is an individual's perception that negative external evaluations of him or herself do not correspond to reality but are due to group membership . Prejudice is still at the level of negative attitudes. Discrimination includes negative attitudes and rises to adverse treatment such as rejection and avoidance; prejudice may be a better predictor of discrimination than stereotypes . Many qualitative studies have found male nursing students and male nurses to perceive social prejudice against them , but more quantitative research is needed ). In China, men studying nursing or working in nursing are looked down upon due to the low social status of nurses and the influence of the traditional Chinese culture of male preference and men's superiority to women. As a result, male nursing students and male nurses in China may suffer from more social prejudice. Prejudice and discrimination against a group are detrimental to the physical and mental health of members of this group, which may increase their psychological distress . Psychological distress refers to non-specific mental health problems such as anxiety and depression . Nursing students and nurses are usually under high stress, which is closely related to psychological distress , and the prevalence of psychological distress is generally not low, especially for nurses is high. The nurses' workload in China is high; in most public hospitals, nurses work 40 h a week . The prevalence of psychological distress among Chinese nurses was 83.3%, with 34 male and 428 female nurses participating in this survey . The prevalence rate of female nurses in China was 85.5% . The prevalence of psychological distress among Chinese nursing students was 55.8%, with 375 male and 1,366 female nursing students participating in this survey . However, one study showed that the prevalence of psychological distress among male nursing students in China was 82.2% . Few studies focus on the mental health of male nursing students or male nurses like this. Since the number of males in the nursing student and nurse population is too small compared to females, more studies should be conducted on male nursing students and male nurses for their psychological distress to be more clearly presented. Overall, male nursing students and male nurses are a minority compared to their female counterparts and are in a particular environment where stereotypes, prejudice, and discrimination exist. Their mental health needs more attention. The global shortage of nurses is receiving increasing attention . However, in the global shortage of nurses, the shortage of male nurses is more prominent than that of female nurses. Between 2017 and 2019, the proportion of registered male nurses was 11.1% in Australia, 10.7% in the United Kingdom, 9.1% in the United States, and only 2% in China . Attracting more men into nursing and reducing their attrition would help alleviate the nursing shortage , and gender diversity would help modern nursing evolve . However, nursing schools get very few male students, and male nursing students are likelier to leave the nursing profession than female nursing students . Moreover, male nurses have a lower professional identity than female nurses , and professional identity is essential in their intentions to leave the profession . Professional identity is how nurses or nursing students see themselves as part of the nursing profession, how they feel about it, and what it means to society . Nurses' professional identity positively impacts both subjective well-being and job performance . In addition, nurses with a high occupational identity tend to have high job satisfaction, enhancing retention intentions . However, nurses with low occupational identity and job satisfaction were likelier to leave . Nurses are often seen as subordinate to physicians, and nursing is perceived as low-skilled and bedside care . For a long time, nurses could not shake the image of low social status, and low self-esteem and low professional identity often accompany nurses . In addition, male nursing students and male nurses in China typically have a lower sense of professional identity than their female counterparts . Studies have shown that Chinese male nurses with a high sense of professional identity are willing to engage in more work and thus promote professional success . Nurses' professional identity is a dynamic developmental process, which means that the professional identity of male nursing students and male nurses can be reconstructed or strengthened . Studies have shown that nurses' self-esteem is closely related to their professional identity . Self-esteem is one's attitude toward oneself, and it plays a crucial role in personality building, psychological balance, and environmental adaptation . Self-esteem has been widely studied in the behavioral and social sciences, and the benefits of high self-esteem have been affirmed time and time again . Tajfel and Turner proposed the social identity theory, in which they considered social identity to be the self-image that individuals perceive themselves to have in the group to which they belong, as well as the emotional and value experiences they have as members of the group . Based on social identity theory, we argue that male nursing students and male nurses may harm their self-esteem and social identity through social categorization and social comparison , resulting in low professional identity and eventual departure from the nursing profession. We suggest that self-esteem and professional identity may be vital for male nursing students and male nurses and that the relationship between the two needs to be further explored in a setting where stereotypes and social prejudices exist. Additionally, this study also examined the differences of relevant variables in different sociodemographic characteristics of the research subjects. Graduates from high schools in China can apply for the university majors they wish to pursue. Still, if their grades do not meet the requirements, they might end up being placed in a major for which not many people apply. Usually, nursing is one of those majors that few people apply for. Studies have found that male nurses and male nursing students who applied for the nursing major as their first choice typically had a stronger sense of professional identity than those who did not . Another study has found that male nursing students at three-year colleges had a higher professional identity than junior male nurses . However, few studies still compare the professional identity of male nursing students and male nurses. For a long time before, a junior college or below educational level was sufficient to serve as a nurse in China . Still, as the nursing profession has grown, hospitals have begun recruiting people with higher educational levels to be nurses . In summary, this study additionally addressed the following questions: Is there a statistical difference between the professional identity of male nursing students and male nurses who applied for nursing as their first-choice major and that of those who did not?; Is there a statistical difference between the professional identity of male nursing students and that of male nurses?; and Is there a statistical difference in the professional identity of the research subjects at different levels of education? 1.1. The impact of self-esteem on professional identity Self-esteem positively predicts professional identity; individuals with high levels of self-esteem tend to have a higher professional identity . Among the many factors influencing nursing students' professional identity, self-esteem and professional values are significant predictors . Studies have shown that Chinese male nursing students' self-esteem and professional identity are positively correlated . The professional identity of male nursing students and male nurses is subject to constant change, and affirming the importance and value of male nurses themselves can help to increase self-esteem and thus enhance professional identity . There are far fewer male nursing students and male nurses in China than their female counterparts, and they are more willing to leave the profession . Therefore, improving the professional identity of male nursing students and male nurses is essential. Although there are few studies on self-esteem and professional identity, it is possible to consider self-esteem a critical and influential factor in improving the professional identity of male nursing students and male nurses. Therefore, the present study proposes hypothesis 1: self-esteem of male nursing students and male nurses can directly and positively predict professional identity. --- Mediating role of perceived prejudice Perceived prejudice and perceived discrimination both focus on subjective feelings; individuals feel that they have suffered prejudice and discrimination. Previous studies have found that self-esteem negatively predicts perceived discrimination in other groups that are discriminated against . Feng et al. found that the self-esteem of Chinese male nursing students negatively predicted perceived prejudice; they also found that the more substantial the perceived prejudice of male nursing students, the lower their professional satisfaction would be and, ultimately, the less willing they would be to become a nurse . The less willing they are to become nurses, the less they may identify with the nursing profession. However, the job satisfaction of Chinese male nurses was significantly and positively correlated with professional identity . In addition, studies have shown that some negative experiences and feelings in the clinical learning environment may harm the professional identity of Chinese nursing students . In China, some male nursing students were reluctant to admit their major was nursing in front of their new acquaintances . Some male nurses talk about the social prejudice they had experienced from their nursing student days to when they joined the workforce and how it has affected their professional identity . However, there is a lack of quantitative research on the impact of perceived prejudice on professional identity among male nursing students and male nurses. Due to the traditional Chinese culture, there is a more significant societal prejudice against men studying and working in nursing. However, high selfesteem is associated with coping with stress, adaptive adjustment, well-being, success, and satisfaction . In summary, high self-esteem may allow male nursing students and male nurses to perceive less prejudice and thus maintain a higher professional identity. Therefore, the present study proposes hypothesis 2: self-esteem negatively predicts perceived prejudice, and then perceived prejudice negatively predicts professional identity. That is, for male nurses and male nursing students, perceived prejudice is a mediating factor in the link between self-esteem and professional identity. Wu et al. 10.3389/fpsyg.2023.1176970 Frontiers in Psychology 04 frontiersin.org --- Mediating role of psychological distress Self-esteem is one of the core elements of mental health and a key element in promoting mental health . The vulnerability model suggests low self-esteem can lead to depression , while the terror management theory suggests that selfesteem can act as a buffer for anxiety . Studies have shown that nurses' self-esteem can negatively predict psychological distress . Feng et al. found that the self-esteem of Chinese male nursing students also negatively predicted psychological distress. In addition, the level of psychological well-being of college students has a positive impact on their professional identity . In a study of student teachers, anxiety was negatively associated with career identity . However, there is a lack of studies on the impact of psychological distress on occupational identity among male nursing students and male nurses. Low self-esteem is a risk factor for various mental disorders; high self-esteem is associated with mental health, well-being, success, and satisfaction . In summary, high self-esteem may promote the mental health of male nursing students and nurses, reduce their psychological distress, and thus maintain a high professional identity. Therefore, the present study proposes hypothesis 3: self-esteem negatively predicts psychological distress, and then psychological distress negatively predicts professional identity. In other words, psychological distress mediates the link between self-esteem and professional identity among male nurses and male nursing students. --- The chain mediating effect of perceived prejudice and psychological distress Based on Lazarus and Folkman's coping theory , the perceived prejudice of male nursing students and male nurses is a stressor. However, it is currently impossible to eliminate social prejudice, which will likely trigger their adverse emotions and poor coping behaviors. In China, 72% of male nursing students believe that social perceptions of the nursing profession cause significant stress . Furthermore, perceived stress among male nurses in China negatively affects professional identity . Therefore, we suggest that more perceived prejudice among male nursing students and male nurses indicates higher stress, which may cause them psychological distress and low professional identity. Numerous studies have shown that perceived discrimination negatively affects a person's physical and mental health through complex biopsychosocial interactions . The more discrimination an individual perceives, the greater the risk of psychological distress . Feng et al. found a direct positive effect of perceived prejudice on psychological distress among Chinese male nursing students, but this effect was not strong; also, those male nursing students with high self-esteem tended to perceive less prejudice and thus report lower psychological distress. Self-esteem is a practical resource for coping with stress . Studies have shown that self-esteem contributes significantly to nursing students' stress coping, influences stress coping levels , and is associated with positive coping behaviors . Lazarus and Folkman's coping theory holds that cognitive assessment plays a vital role in the occurrence and response to stress . When social prejudice cannot be temporarily eliminated, male nursing students with high selfesteem may adopt more positive cognitive appraisals and thus perceive less prejudice, thereby buffering stress. Therefore, we explored whether self-esteem indirectly affects professional identity by influencing perceived prejudice and, thus, psychological distress. The aim is to provide more informative information on reducing perceived prejudice, reducing psychological distress, and improving professional identity among male nursing students and male nurses. In addition, few studies discuss the mediating mechanisms that combine perceived prejudice and psychological distress. Therefore, the present study proposes hypothesis 4: perceived prejudice positively predicts psychological distress, and the effect of self-esteem on professional identity can arise indirectly through this chain path: Self-esteem → Perceived prejudice → Psychological distress → Professional identity. --- Materials and methods --- Design and participants This study is a cross-sectional study. The survey subjects were male nursing students studying for a full-time undergraduate degree or higher education and male nurses already working. The sample participating in this study consisted of 296 male nursing students and 168 male nurses aged 17-52 . Additional sociodemographic characteristics of the sample are shown in Table 1. --- Data collection From November 2021 to January 2022, purposive and snowball sampling surveys were conducted in China. A total of 492 online electronic and paper questionnaires were distributed and returned, of which 464 were valid . All participants gave informed consent to this study and completed the questionnaires anonymously . --- Instrument --- The basic information questionnaire We made the Basic Information Questionnaire based on the needs of this study, including age, educational level, a male nursing student or a male nurse, and whether nursing was the first-choice major. --- The male nursing students' perceived prejudice questionnaire The Male Nursing Students' Perceived Prejudice Questionnaire was developed and made public in an English version by Feng et al. to measure the perceived prejudice of male nursing students in China. The questionnaire has a total of 6 items, and each item is scored on a four-point scale ranging from 1 to 4 . The average score for all items was calculated, with a higher Frontiers in Psychology 05 frontiersin.org score indicating stronger perceived prejudice. All the items on this questionnaire are also suitable for male nurses, so we contacted Feng by e-mail and used the Chinese version of the questionnaire she provided to measure the perceived prejudice of male nurses and male nursing students. In the study, Cronbach's alpha coefficient for the questionnaire was 0.860. --- The 10-item Kessler psychological distress scale The 10-item Kessler Psychological Distress Scale has a total of 10 items, and each item is scored on a fivepoint scale ranging from 1 to 5 . The scores of the 10 items were summed up to obtain the total score, with a higher score indicating more serious psychological distress. A total score of 16 or above indicates very high psychological distress . The Chinese version of K10 has also been shown to have good reliability and validity . In the study, Cronbach's alpha coefficient for the scale was 0.937. --- The professional identity questionnaire of nursing students The Professional Identity Questionnaire of Nursing Students was developed by Hao to measure the professional identity of nursing students in China. The questionnaire includes five factors: professional self-concept; benefits of staying and risks of leaving; social comparison and self-reflection; the autonomy of career choice; and social persuasion. We used it to measure male nursing students' and male nurses' professional identities . The questionnaire has a total of 17 items, and each item is scored on a five-point scale ranging from 1 to 5 . The scores of the 17 items were summed up to obtain the total score, with a higher score indicating a higher level of professional identity. In the study, Cronbach's alpha coefficient for the questionnaire was 0.926. --- The Chinese version of the Rosenberg self-esteem scale Mengcheng Wang et al. revised the Rosenberg Self-Esteem Scale in Chinese to measure an individual's level of self-esteem . The scale has a total of 10 items, and each item is scored on a four-point scale ranging from 1 to 4 . The scores of the 10 items were summed up to obtain the total score, with a higher score indicating a higher level of self-esteem. In the study, Cronbach's alpha coefficient for the scale was 0.860. 2013), and the bias-corrected percentile bootstrap method was used to test the significance of the mediation effect. --- Results --- Common method biases test Harman's single-factor test was used to test for common method bias, and exploratory factor analysis was conducted on all measures' items. The results showed that there were 6 factors with eigenvalues greater than 1, and the first factor explained 31.237% of the variation , which indicated that the study had no significant common method bias . --- Self-esteem, perceived prejudice, psychological distress, and professional identity according to participant characteristics One-way ANOVA was used to first test the scores of each variable among different age groups and then to test the scores of each variable among different educational levels. The results showed that there was no statistically significant difference in the scores of each variable among different age groups, but there were statistically significant differences in the scores of perceived prejudice among different educational levels . Further post-hoc multiple comparisons showed that male nurses and male nursing students with an educational level of bachelor's degree had significantly higher perceived prejudice scores than those with an educational level of junior college or below . Then, the scores of each variable were compared between the male nurses and the male nursing students and between the participants who applied for the nursing major as their first choice and those who did not, using independent sample t-tests. The results showed that male nursing students scored significantly higher on professional identity than male nurses . Participants who applied for the nursing major as their first choice had significantly lower perceived prejudice scores and psychological distress scores than those who did not apply . Those who did apply also had significantly higher scores for professional identity than those who did not . In addition, the overall prevalence of psychological distress among male nurses and male nursing students was 81.7%. Using the chi-square test, we found no statistically significant difference in the prevalence of psychological distress between the male nurses and the male nursing students. Then the chi-square test was used again to compare the prevalence of psychological distress between the participants who applied for nursing as a first-choice major and those who did not. The results showed that the prevalence of psychological distress was significantly higher in the latter than in the former . --- Correlation analysis of all variables The results showed that self-esteem was significantly negatively correlated with perceived prejudice and psychological distress; both perceived prejudice and psychological distress were significantly negatively correlated with professional identity; perceived prejudice was significantly positively correlated with psychological distress; selfesteem was significantly positively correlated with professional identity. . --- The mediating effects of perceived prejudice and psychological distress Model 6 in PROCESS was selected to test the mediating effects of the multiple mediation model, with psychological distress and perceived prejudice as the mediating variables, professional identity as the dependent variable, self-esteem as the independent variable, and controlling for the effects of educational level, male nursing students or male nurses, and first-choice major. The multiple mediation model of this study involves the mediation of perceived prejudice, the mediation of psychological distress, and the chain mediation of perceived prejudice and psychological distress . The results of regression analysis among the variables were as follows : self-esteem significantly positively predicted professional identity ; after incorporating selfesteem, perceived prejudice, and psychological distress into the regression equation at the same time, the predictive effect of selfesteem on professional identity was still significant ; self-esteem could significantly negatively predict perceived prejudice and psychological distress ; perceived prejudice significantly positively predicted psychological distress ; and perceived prejudice and psychological distress significantly negatively predicted professional identity, respectively . The direct effect, specific mediating effect, comparative mediating effect, and total mediating effect were tested for significance using the bias-corrected nonparametric percentile bootstrap method . These effects are significant if the 95% confidence intervals do not contain 0. The results of the mediating effect analysis were as follows : the effect value of indirect path 1 consisting of Self-Esteem → Perceived Prejudice → Professional Identity was 0.062 [95% CI ]; the effect ]. All the above Bootstrap 95% confidence intervals do not contain 0, indicating that the chain mediating effect of perceived prejudice and psychological distress, the mediating effect of The multiple mediation model and each path coefficient. *p < 0.05; ***p < 0.001. psychological distress, the mediating effect of perceived prejudice, and the direct effect of self-esteem on professional identity were all significant. The total mediating effect accounted for 32.816% of the total effect, and the direct effect accounted for 67.184% of the total effect. --- Discussion This study explored the impact of male nurses' and male nursing students' self-esteem on their professional identity and its internal mechanisms. The results showed that male nurses' and male nursing students' self-esteem could not only directly affect their professional identity but also indirectly affect it through the mediating effect of perceived prejudice, the mediating effect of psychological distress, and the chain mediating effect of perceived prejudice and psychological distress. This study designed and verified this multiple mediation model based on social identity theory and coping theory . It aims to emphasize the relationship between the self-esteem and professional identity of male nursing students and male nurses in a particular environment where stereotypes and social prejudice exist and to provide diverse reference information on how to improve the professional identity of male nursing students and male nurses. Stereotypes and societal prejudice against male nursing students and nurses should be seen, acknowledged, and valued to promote an equitable, genderdiverse environment. In addition, this study found that male nurses and male nursing students with an educational level of bachelor's degree had higher perceived prejudice than those with an educational level of junior college or below. The status of nurses is relatively low-slung in China, and the public perception is that nurses are poorly educated, subordinate to doctors, and do work that is not very technical . Even though nurses with an educational level of bachelor's degree are better educated than those with an educational level of junior college or below, there is no difference in the tasks they perform in the hospital. As a result, it may lead to stronger social prejudice being perceived by those male nurses and male nursing students who with an educational level of bachelor's degree. A previous study has found that male nursing students at three-year colleges had a higher professional identity than junior male nurses ; consistent with it, this study found that male nursing students had a higher professional identity than male nurses. However, the research subjects included in this study are more representative. In China, fulltime undergraduate nursing students, that is, four-year nursing students, have become mainstream. In addition, the research objects of this study also include male nursing students with higher education and male nurses with unlimited seniority. From this point of view, the research objects of this study are more diverse and more representative, which is also one of the innovations of this study. Compared to male nursing students, male nurses may experience more and more stress in the workplace, leading to a decreased sense of professional identity . Therefore, nursing managers should take steps to reduce the stress of male nurses, which includes, but is not limited to, perceived prejudice and may include other work-related stressors. Comparing male nurses and male nursing students who applied for the nursing major as their first choice with those male nurses and male nursing students who did not apply, the following findings were found: the former felt less social prejudice and had a lower prevalence of psychological distress, which was consistent with the previous findings on male nursing students ; the former had a higher professional identity, which matched the earlier discoveries ; and the former had lower psychological distress, which was inconsistent with previous studies on male nursing students that found no statistically significant difference between the two in terms of psychological distress . The inconsistency with the previous finding may be because the subjects of this study were recruited on a larger scale rather than being limited to a particular province in China. From this point of view, nursing educators and managers cannot ignore the care, support, and guidance for male nursing students and male nurses who did not first choose a nursing major to avoid losing them. Because of the current admission system and shortage of nurses in China, nursing schools will continue to admit male students who are assigned to the nursing major because their grades do not meet the requirements of other majors. Therefore, the attitudes and practices of nursing educators and managers toward this population of male nursing students and male nurses are critical. --- Direct impact This study showed that the self-esteem of male nursing students and male nurses significantly positively predicted their professional identity, consistent with previous findings on other populations , and the research H1 was verified. Notably, the direct effect of self-esteem on professional identity among male nursing students and male nurses accounted for 67.184% of the total effect, indicating that the direct effect of self-esteem on professional identity is essential. Therefore, nursing educators and administrators should consistently strive to protect the self-esteem of male nurses and male nursing students and improve their self-esteem. For example, emphasize the importance of male nursing students and male nurses to nursing and provide them with timely and positive feedback when they achieve success; invite men who have been successful in their nursing careers to share and exchange experiences with male nursing students and male nurses so that role models can also enhance the self-esteem of male nursing students and male nurses. --- Mediating role of perceived prejudice This study showed that the self-esteem of male nurses and male nursing students affected their professional identity by affecting perceived prejudice, and the research H2 was verified. The persistence of stereotypes and social prejudice against male nursing students and male nurses is a cause for concern. Self-esteem and professional identity are important for male nursing students and male nurses, and further exploration of the relationship between the two in an environment where stereotypes and social prejudice exist is necessary. However, there is a paucity of research on male nursing students' and male nurses' self-esteem and professional identity, and in particular, no studies have yet taken the effects of social prejudice into account. Therefore, we explored the mediating role of perceived prejudice among male nursing students and male nurses in the relationship between self-esteem and professional identity. Male nurses' and male nursing students' self-esteem could significantly negatively predict their perceived prejudice, which was in line with previous findings on male nursing students and other populations . Perceived prejudice among male nursing students and male nurses significantly and negatively predicted professional identity, which is consistent with the findings of a previous qualitative study in which some male nurses said they had experienced social prejudice from their nursing student days to their working years and that it negatively affected their professional identity . This study examined how male nursing students' and male nurses' perceived prejudice affects their professional identity, filling a gap in quantitative research on this issue. Perceived prejudice among male nursing students and male nurses is a stressor. In the presence of continued societal prejudice against male nursing students and male nurses, high self-esteem may motivate them to use positive cognitive appraisals, which allow them to perceive less prejudice and thus have a higher professional identity. The higher the professional identity, the more they may want to stay in nursing . Therefore, nursing educators and administrators can reduce the perceived prejudice of male nursing students and male nurses by protecting and improving their self-esteem, thereby improving their professional identity. Actually, one of the reasons men pursue a nursing career is out of helpfulness . In addition, male nurses possess some advantages, such as good physical strength, usually calm decisionmaking in case of emergencies, and an excellent ability to operate medical equipment, which makes them more adapted to work in the intensive care unit, emergency department, psychiatric department, and operating room . The general public should recognize male nursing students and male nurses, and it is necessary to reduce the perceived prejudice of male nursing students and male nurses. Reducing the perceived prejudice of male nursing students and male nurses should be done in two ways: on the one hand, their selfesteem level should be improved; on the other hand, social awareness and understanding of male nursing students and male nurses can be popularized through the media, thus reducing the prejudice against them and recognizing their profession and work. --- Mediating role of psychological distress This study showed that the self-esteem of male nurses and male nursing students affected their professional identity by affecting psychological distress, and the research H3 was verified. First, their self-esteem could significantly negatively predict their psychological distress, which was in line with previous findings on male nursing students and nurses . Thus, the role of self-esteem in promoting mental health was reaffirmed, which supports the previous views . Then, their psychological distress significantly negatively predicted their professional identity, similar to previous studies that found that college students' levels of psychological wellbeing positively predicted professional identity . However, there is a dearth of research on the role of mental health in career development , particularly in the male nursing student and male nurse populations. Thus, the present study contributes to this. Overall, male nursing students and male nurses with higher levels of self-esteem are likely to experience lower levels of psychological distress and may have a higher sense of professional identity. By examining psychological distress as a mediating variable between self-esteem and professional identity, this study not only focused on the psychological health of male nursing students and male nurses but also linked their psychological distress to their selfesteem and professional identity. The study's results revealed that nursing educators and administrators could reduce the psychological distress of male nursing students and male nurses by protecting and enhancing their self-esteem, thereby enhancing their professional identity. In recent years, psychological distress among nurses has received increasing attention . However, in China, the number of male nursing students and male nurses is too small relative to their female counterparts. So even in studies on psychological distress among nursing students and nurses , the findings may be more in line with the situation of female nursing students and female nurses. Thus, this study was conducted on male nursing students and male nurses to present their psychological distress situations more clearly. Among the male nurses and male nursing students who took part in this study, psychological distress was present in as many as 81.7% of them, which was similar Wu et al. 10.3389/fpsyg.2023.1176970 Frontiers in Psychology 10 frontiersin.org to the results of a previous study on male nursing students . Not only does this indicate that their physical and mental health is at risk, but it has the potential to reduce their sense of professional identity. In general, it is important to pay attention to the mental health of male nurses and male nursing students and take measures to alleviate their psychological distress. Hence, hospitals and schools can hold more lectures on mental health, screen for the prevalence of psychological distress promptly, and provide psychological assistance to male nurses and male nursing students when necessary. Also, it is very crucial to protect and improve their self-esteem to ease psychological distress. --- The chain mediating effect of perceived prejudice and psychological distress This study also found that the self-esteem of male nurses and male nursing students could indirectly affect professional identity through the chain mediating effect of perceived prejudice and psychological distress, and research H4 was verified. The prejudice perceived by male nurses and male nursing students could impair their mental health and positively predict psychological distress among them, which was in line with what has been found about male nursing students and other groups . However, the effect of perceived prejudice on psychological distress was relatively small, which was consistent with previous research conclusions on male nursing students . Male nurses and male nursing students may also suffer from psychological distress due to other stressors, but those with positive coping styles, good social support, and good psychological resilience may be able to resist psychological distress . Therefore, future studies can explore factors besides self-esteem that can reduce psychological distress among male nursing students and male nurses, thus improving professional identity. Male nursing students and male nurses are in an environment where stereotypes and social prejudice exist, and for them, psychological distress caused by perceived prejudice may be a particular experience. Therefore, the impact of their perceived prejudice on psychological distress cannot be ignored, and this study explored the chain mediation role of perceived prejudice and psychological distress in the relationship between self-esteem and professional identity. The chain-mediating effect of perceived prejudice and psychological distress accounted for only 0.887% of the total effect. The chain-mediating effect was weak and significantly smaller than the independent mediating effects of perceived prejudice and psychological distress. Although it was weak, the effect value was still statistically significant. We cannot ignore the chain mediating effect of perceived prejudice and psychological distress. Social prejudices against male nursing students and male nurses still exist and are difficult to eliminate. In this context, as mentioned in coping theory , cognitive appraisal plays a critical role in the occurrence and response to stress. Therefore, male nursing students and male nurses with high self-esteem may adopt more positive cognitive appraisals and thus have lower perceived prejudice, thereby reducing stress. As a result, they may tend to suffer from lower psychological distress and have a higher professional identity. Therefore, to improve the professional identity of male nursing students and male nurses, we can still start from this path: improve self-esteem → reduce perceived prejudice → reduce psychological distress → improve professional identity. --- Limitations First, this study was cross-sectional, which could not prove the causal relationship between variables; longitudinal research or experimental research can be used to determine the causal relationship between variables. Second, the participants in this study were all from China. Due to differences in culture, education, and management, it may not be possible to generalize all results to other countries; future research should examine the significance of other samples in this model. Third, this study did not examine the differences between male nursing students in different grades and male nurses in different departments on each variable; future studies could improve on this. Fourth, because of the difficulty of obtaining a sample and the fact that male nursing students and male nurses are essentially a common group, this study put male nursing students and male nurses together for research; in the future, they can be separated for more targeted research to provide more targeted and specific reference information for nursing educators or nursing managers. --- Conclusion Male nurses' and male nursing students' self-esteem could directly and positively affect their professional identity, and this direct effect cannot be underestimated. Male nurses' and male nursing students' self-esteem could indirectly affect their professional identity through the mediating role of perceived prejudice, the mediating role of psychological distress, and the chain-mediating role of perceived prejudice and psychological distress. Male nurses and male nursing students had a high prevalence of psychological distress, and their mental health needed attention. In general, improving the professional identity of male nursing students and male nurses can start with the following aspects: protecting and improving their self-esteem; reducing prejudice against them; valuing their mental health and alleviating their psychological distress. --- Data availability statement The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- Wu et al. 10.3389/fpsyg.2023.1176970 Frontiers in Psychology 11 frontiersin.org --- Ethics statement The studies involving human participants were reviewed and approved by the study was approved by the Human Research Ethics committee of Kunming Medical University . Written informed consent to participate in this study was provided by the participants' legal guardian/next of kin. --- --- --- 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. --- Supplementary material The Supplementary material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyg.2023.1176970/ full#supplementary-material
Introduction: There are not enough nurses around the world, and there are even fewer male nurses. It has not been easy for men to become nurses because of stereotypes about the roles of men and women in the workplace, which lead to prejudice and discrimination. This study explored how the self-esteem of male nurses and male nursing students affects their professional identity in an environment where stereotypes and social prejudice exist. This study also examined the differences of relevant variables in different sociodemographic characteristics of the research subjects in a Chinese social context. Methods: By purposive and snowball sampling, 464 male nurses and male nursing students were surveyed through questionnaires from November 2021 to January 2022. Data analysis was performed using SPSS 25.0 and PROCESS Macro 3.3. Results: Self-esteem could indirectly affect professional identity through perceived prejudice and psychological distress. Nonetheless, self-esteem still had a significant direct effect on professional identity. The total mediating effect accounted for 32.816% of the total effect, and the direct effect accounted for 67.184% of the total effect. Also of note was that 81.7% of participants reported experiencing psychological distress. Discussion: To improve the professional identity of male nurses and male nursing students, nursing educators and administrators should do the following: protect and improve their self-esteem; take steps to reduce social prejudice against them; value their mental health and alleviate their psychological distress.
Methods For this cross-sectional study, self-administered questionnaires were made accessible to women in Albania in March 2015 by hard copy or online via social networks. Women were asked about lifetime use and last year's use of EMCs, and if they purchased EMCs with or without a prescription. Additionally, pharmacies were contacted and asked about EMC sales figures. --- Results Of the 205 participating women, 80.5 % knew about the availability and use of EMCs, and 15.1 % reported EMC use during the previous 12 months. The lifetime prevalence of use was 46.8 %. Although having prescription-only status in Albania, 96 % of the women bought EMCs without a physician's prescription. Knowledge was significantly lower among the lower educated women and among women residing in small cities. Use of EMCs was significantly higher in women with a weaker financial background and, compared with small cities, in those from large or mid-sized cities. The 54 participating pharmacies reported selling 11 EMCs on average per month. The use of EMCs may be estimated at 0.22 defined daily doses per 1,000 inhabitants per day. Compared to January 2015, EMC sales increased by 17 % in February 2016. Conclusions Compared to other European countries, the prevalence of EMC use seems to be higher in Albania. Use and knowledge of EMCs depend on socioeconomic characteristics. It is recommended to switch EMCs to non-prescription status in transitional Albania. --- ZuSAmmenfASSunG --- Introduction The issue of unwanted pregnancies is a relevant public health topic, as about 41 % of all pregnancies worldwide and 44 % of pregnancies in Europe have been reported by women to be unintended [1]. Especially among young adolescent women aged 15-19 years, the majority of pregnancies may be unwanted [1], which might lead to higher abortion rates in this age group. The topics of unwanted pregnancies or the use of contraceptives are also linked to socioeconomic factors [2][3][4][5][6][7][8]. Unplanned pregnancies are more likely among financially weaker women [2], younger women [2,5], or lower educated women [4,5]. In Finland, a lower use of emergency contraceptive drugs was related to living in rural areas and to higher paternal education background [9]. A French study found a higher EMC use among higher educated women and those living in large cities [10]. An EMC can prevent from unintended pregnancy if taken quickly after unprotected sexual intercourse. Two active pharmaceutical ingredients are available in Europe for this purpose, levonorgestrel with a single dose of 1.5 mg and ulipristal acetate . To speed up access to EMCs, the European Medicines Agency recommended switching UPA to non-prescription status in November 2014 [11]. As of February 2017, LNG and/or UPA are freely available in many European countries [12,13]. Before 1990, contraceptives were generally banned in Albania. After the breakdown of the communist regime, Albania experienced a major political, social, and economic turmoil. In the past two decades, tremendous changes in lifestyle have taken place, which include also the attitudes towards and the use of pharmaceutical products. Two LNG-containing EMCs are currently available in Albania, Norlevo ® and Postinor-2 ® . Both LNG-based EMCs haves still prescription-only status. UPA has been registered in May 2016 as a freely available EMC, but it is not marketed in Albania yet. Data on EMC use in Albania is rather scarce. In this context, this study had two objectives: i) to assess the knowledge about EMCs and the prevalence and the socioeconomic correlates of EMC use in Albania. ii) to provide figures for EMC sales and information on the women's way of purchasing EMCs. --- Material and methods --- Study population and data collection This cross-sectional study was conducted in Albania over a period of 3 weeks in March 2015. To assess the prevalence of EMC use and the women's socioeconomic background , structured self-administered questionnaires were handed out to female students at 2 universities. Further questions such as knowledge about the possibility of emergency contraception with pharmaceuticals, way of purchase or if the women had encountered any problems when asking for an EMC prescription were also included in the questionnaire. Additionally, pharmacies were also invited to provide data using another questionnaire. They were asked to report prices for EMCs and monthly sales figures for the 2 registered EMC brands in Albania for the period January 2015 until February 2016, whether they would consider it to be common practice to sell EMCs without prescription, and if they had cases where women could not afford to buy an EMC. In addition to the paper-based questionnaires, identical online versions were designed for the women and the pharmacies using google forms . The link was shared in social networks or sent by email to randomly chosen women and pharmacies. All data were collected anonymously or anonymized, if necessary. --- Statistical analysis For the statistical analysis, the SAS software package was used. Bivariate associations were tested with Pearson Chi 2 test or, in case of too small cell values of the contingency tables, with Fisher's exact test. Odds ratios and their 95 % confidence intervals were obtained from a multivariate logistic regression model . The participants were grouped into 3 age classes . The following education levels were defined according to the participants' years they attended school: Level 1:10-12 school years Level 2:13-15 school years Level 3:16-17 school years Level 4: ≥ 18 school years The financial background was defined on the basis of self-perceived ability to meet the daily needs . The participants' place of residence was classified in 3 categories . The study was approved by the Scientific Committee of the National Institute of Public Health in Albania. All participants gave their informed consent after being explained the aim and procedures of the study. --- Results --- Sample structure and prevalence of knowledge about and use of emergency contraceptives Overall, 205 women aged 16-60 years from various Albanian regions participated in the survey . Most of the participants attended school between 16-17 years . 10 % of the women did some postgraduate studies , while 4 % went to school for 10-12 years only. Exactly 97 women said they would not be able to meet their daily needs or could only meet their vital daily needs , whereas 108 women reported that they would easily be able to meet their daily needs. The majority of the women resided in Tirana, Albania's largest city . A further 22 women lived in mid-sized cities . The remaining 12 participants came from 6 smaller or rather rural cities with a population between 6,000-20,000 inhabitants . The exact sample structure is displayed in ▶table 1. Overall, 80.5 % of the women knew about the possibility of avoiding unintended pregnancy by using an EMC. Exactly 15.1 % of the women reported having used EMCs at least once within the previous 12 months, and 46.8 % took an EMC at least once in their lifetime. However, knowledge about and use of EMCs were not homogeneous across the socioeconomic strata. Knowledge was highest among those aged 25 -34 years. Also, a significant difference was visible between the highest and lowest education level. Women from Tirana were much better informed on the issue of EMCs compared with women living in mid-sized or smaller cities . The figures for the 1-year prevalence of use and for lifetime use were higher among women with problems to meet their daily needs, compared with women who perceived their financial situation as unproblematic . Compared with urban areas, only few women living in small cities with 20,000 inhabitants or less used EMCs . Of the 96 women who used EMCs, exactly 92 said they bought it without a physician's prescription, although LNG-containing EMCs have still a prescription-only status in Albania. Some 13 women bought EMCs also or exclusively outside Albania . With regard to affordability, 8 participants stated that they had hesitated to buy an EMC because of the high price, but all 8 reported having nevertheless finally bought the EMC. A total of 5 women experienced some kind of problem with the physician in relation to the prescription of an EMC. For instance, two complained not being informed about side effects sufficiently or correctly, one got necessary information from the pharmacist instead of the physician, and one woman mentioned the physician was not available when she needed him. --- Correlates of emergency contraceptive use A logistic regression model with 4 independent variables revealed that a strong "predictor" of lifetime use of EMCs was a weaker financial background. Women who had difficulties in meeting their daily needs used almost twice as much EMCs compared with women from a stable financial background . Also, the place of residence showed an association with EMC use, as, compared with Tirana, women living in mid-sized cities and especially those living in small cities used much fewer EMCs. No logistic regression model for the 1-year prevalence of use and the knowledge about EMCs is presented at this place, as for both outcomes, the likelihood ratios of the SAS model fit statistics did not satisfy the criterion of p ≤ 0.05. --- Sales figures 54 Albanian pharmacies from 8 cities reported sales figures for the 2 currently available LNG-containing EMC brands in Albania for the period between January 2015 and February 2016 . Compared with January 2015, the number of sold packages slightly increased by 15 % for Postinor-2 ® and 18 % for Norlevo ® , respectively . In total, the 54 participating pharmacies sold 8,404 EMCs within 14 months . The price for Norlevo ® ranged between 582 and 660 lek . The price range for Postinor-2 ® was 530-649 lek, which corresponds to €3.93-4.81 . 16 out of 54 pharmacies stated having had cases, where potential customers finally did not buy the EMC because it was not afford-able. In sum, these 16 pharmacies estimated the number of respective cases at about 35 for a period of one month. Exactly 48 pharmacies reported they thought it might be quite a common practice to sell EMCs also without a physician's prescription. --- Discussion The results of this study imply that the use of EMCs might be higher in post-communist Albania compared with other European countries. A 2004 study from France [10] found a lifetime prevalence of 31.7 % . In the United Kingdom [15], 7.3 % of the women aged 16-49 years used EMCs at least once during the last year . In a Finnish study conducted in 1996, 15.1 % of 17-yearold girls reported to have used EMCs at least once during lifetime [16], which may be somewhat higher today, since in Finland, EMCs were switched to non-prescription status in 2002. The sales figures presented in this study provided by 54 Albanian pharmacies may be extrapolated to a total yearly consumption of about 240,000 defined daily doses in Albania, corresponding to 0.22 DDDs per 1,000 inhabitants per day. This would be much higher than, for instance, in Denmark, where the consumption is on an almost stable level at 0.049 DDDs per 1,000 inhabitants per day since 2008. A lower consumption has also been reported for Estonia and Montenegro . In Switzerland, the consumption of EMCs increased strongly after the switch to non-prescription status in 2002 to about 0.031 DDDs per 1,000 inhabitants per day in 2008, which is nevertheless still lower compared with Albania. In Germany, where EMCs are freely available since 2015, the consumption of EMCs seems to have reached a stable level of currently about 0.025 DDDs per 1,000 in- habitants per day [13,17]. However, the estimation for Albania is rough and needs to be investigated on a larger data basis. The use of EMCs is known to be predicted by socioeconomic factors. An Australian study [18] as well as an American one [19] showed that being not married increases the probability to use an EMC. A higher education was also linked to a higher use of EMCs in America [19]. In this Albanian study, EMC use was not associated with educational background. However, a higher use of EMCs among Albanian women correlated significantly with weaker financial background and living in an urban environment. The impact of financial background could possibly be explained by the fact that poor women may be able less to afford having children. A further explanation could be that poor women do not take normal contraceptive pills because of the price , but prefer to take a single dose of an EMC pill in case of need. According to the European consortium for emergency contraception, only 11.7 % of Albanian women use modern contraceptive methods, compared with e. g., 67-76 % in Austria, Hungary, Denmark, France, or Germany [12]. Also, the perception of having fewer side effects by using a single-dose EMC instead of regularly using normal hormonal contraception could explain the high Albanian prevalence rates of EMC use. In this context it should be mentioned, that EMCs should, however, not be used as an ongoing method of contraception. EMCs are not reimbursed in Albania and have therefore to be paid out of pocket. The hypothesis, that financial background could play a role is also strengthened by the fact that 4 % of the surveyed women said they had hesitated to buy an EMC. Additionally, 30 % of the participating pharmacies reported to recall a total of about 35 cases within a period of one month, where women could not afford to buy the EMC needed because of the high price. With concern to the knowledge about EMCs, there seems to be a need to improve health literacy especially in rural Albania. This could be done, e. g. with TV commercials or by sending small groups of health professionals by state authorities, who could organize respective meetings with women living in rural areas. This study has strengths and limitations. To our knowledge, this is the very first study presenting figures on the relevant topic of EMC use in Albania. Furthermore, it provides an updated view on EMC sales figures over a period of 14 months provided by a relatively large number of pharmacies. However, one important limitation is the comparatively small number of participating women in this study. Also, the composition of the study cohort is not exactly representative for Albania, as e. g. the lower-educated strata and those living in more rural areas are underrepresented in this study. Moreover, the study included mainly students from urban areas, who may have a more stable financial background, compared with women residing in a rural environment. Furthermore, with respect to e. g. educational background or place of residence, the strata differ in size considerably, which may have reduced the significance of the results. In sum, the representativeness of the sample is limited and therefore, the findings should be interpreted with some reticence. For the future, more data from e. g. population based studies would be helpful. --- Conclusions It may finally be concluded that EMC-related health literacy needs to be improved in Albania, especially in rural areas. Furthermore, EMCs should be switched to free availability. By doing this, dispensing over the counter in pharmacies would be put on a legal basis and potential drug tourism would be minimized. --- Conflict of Interest The authors declare that they have no competing interests.
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Physical and mental well-being among adolescent girls and young women provides the foundation for lifelong good health . In South Africa, which is categorized as a low-and middle-income country , high rates of untreated mental health problems have been noted among AGYW in secondary or tertiary education settings ; however, little is known about the mental well-being of out-of-school AGYW. Mental health research among this key population of AGYW in this country has focused principally on internalizing behaviors, such as psychological distress, or symptoms of depression and anxiety . Research has rarely examined externalizing behaviors . These behaviors include criminal behaviors such as violence, theft, and property damage , as well as status offenses such as truancy and running away from home . In addition, most research on criminal and status offenses from high-income countries has focused on adolescent boys and young men among whom these behaviors are more prevalent . However, recent evidence suggests this gender gap may be closing. Studies conducted in HICs have found a higher prevalence of these behaviors among AGYW than previously reported . Notably, research on the prevalence of externalizing behaviors and their impact on the health and well-being of AGYW remains scant in LMICs like South Africa. South Africa has a long history of economic inequality, with high levels of interpersonal and community violence and school absenteeism and grade repetition , which are more prevalent in communities characterized by high levels of poverty. These are well-known risk factors for engaging in criminal and status offenses and other challenging behaviors such as substance use and sexual risk taking . In addition, AGYW from historically underserved communities may be at high risk for engaging in these behaviors given their social and educational circumstances. In the Western Cape, AGYW comprise less than half the learners who are still at school by Grade 9, indicating greater risk of dropping out of school early . This is cause for concern, given evidence from HICs that these criminal and status offenses often co-occur with other behavioral concerns that impact adversely on the health and well-being of AGYW. These behavioral concerns include early pregnancy and sexual risk for HIV with the incidence of HIV for AGYW aged 15-24 being three times higher among AGYW than their male counterparts in this setting , substance use such as heavy episodic drinking and cannabis use , and mental health issues . Limited information is available on the prevalence of criminal and status offenses among AGYW in South Africa who have left school early and how these may be related to other behaviors that increase risk of adverse physical and mental health outcomes. A better understanding of the relationship between criminal and status offenses, substance use, and sexual risk behaviors is needed to inform the design of interventions to reduce South African AGYW's behavioral risks for HIV. South Africa has long been the global epicenter of HIV, with incidence highest among AGYW who are up to five times more likely to be diagnosed with HIV than their male peers . Despite recent decreases in HIV incidence in the country , AGYW remain a key population at risk because of intersecting factors, including gender inequity, sexual risk behavior , and substance use . The impact of these externalizing behaviors may have especially deleterious effects on AGYW whose risk of adverse health outcomes is exacerbated by structural factors, including high levels of poverty, substance use availability, and exposure to violence in their neighborhoods . This study addresses some of the gap in the literature by exploring associations between criminal and status offenses, substance use, and sexual risk behavior in a sample of AGYW in Cape Town, South Africa, who have left school early. More specifically, the study aims to describe the prevalence of these externalizing behaviors in a cohort study and examine associations between these externalizing behaviors, substance use, and sexual risks for HIV in this vulnerable population. --- Method Baseline data were drawn from a two-arm cluster-randomized trial, which recruited young women from 24 economically disadvantaged communities in Cape Town randomly allocated to an HIV prevention intervention or HIV testing and counseling-only. Clusters were selected from two large geographic areas that varied in the predominant ethnicity. To be included as a cluster, communities had to meet the following eligibility criteria: natural buffers between clusters of at least two streets; cluster consisting of at least 90% of residents with the same ethnicity; and cluster sizes needed to be larger than four streets. Detailed study processes are described elsewhere . --- Study Sample From November 2016 to November 2018, 500 eligible young women were recruited by female peer outreach staff. The study sample size was determined by a power analysis based on assumptions based on past studies in South Africa and the USA, as well as assumptions that the primary outcomes are related to risk behaviors . For all power analysis, we assumed a two-sided test with α = 0.05, a power of 0.8. We also assumed an intracluster correlation coefficient estimate of 0.01 to allow for a minimal detectable difference of 0.15 . Eligibility criteria included being a woman aged 16 to 19 years old; living in one of the study communities; self-reporting drinking two to three drinks or using any other drug at least once per week over the past 90 days; not attending school, had not attended school for a period of at least 6 months, and had not finished their schooling; and self-reporting condomless sex with a male partner in the past 90 days. --- Procedure Outreach staff screened young women for eligibility within the study communities. If they were eligible and interested, they were transported to a field site where they were asked to provide written informed consent or assent for study participation. Eligible adolescent girls younger than 18 were accompanied by a trusted woman 25 years old and older who provided informed consent and a confidentiality agreement in loco parentis . Following the consent process, participants completed the baseline questionnaire that included questions on sociodemographic characteristics, alcohol and other drug use, mental health, and HIV risk behavior. Rapid biological screening for drug use was conducted. The questionnaire was administered in English, Afrikaans, or isiXhosa via computerassisted personal interviewing ; more sensitive questions were administered through audio computer-assisted self-interviewing . The baseline appointment lasted up to two hours and participants were provided an incentive of a grocery voucher worth R150 for their time. This was in line with South African guidelines for participant reimbursement for health research. Ethics approval was obtained from the relevant ethics committees in South Africa and the USA. There was a study protocol that guided referrals for health and social services and how to manage and support distressed participants at risk of harm. --- Study Measures --- Engagement in Criminal and Status Offenses Questions assessed engagement in disruptive, aggressive, and rule-breaking behaviors in the past 6 months, with responses being yes or no. These items were adapted from established self-report delinquency measures . The original self-reported delinquency measures examined engagement in general theft and property damage; crimes against persons, such as aggravated assault, fighting, and robbery; drug use sales; and status offenses related to age, such as truancy and running away from home. Categories of behaviors for this study were engagement in the following dichotomous variables: status offenses ; crimes or injury against persons, such as robbery, physical fights, or physical harm to others; theft and property-related activity, such as trespassing or breaking into property; and drug-related illegal activity, such as drug possession or selling of drugs. --- Substance Use and Sexual Risk Measures Recent sexual risk was determined by a dichotomous measure of condom use during last sexual episode. Heavy episodic drinking was defined as four or more alcoholic drinks consumed in a single day during the past 30 days, with response options being yes or no. This measure is based on the National Institute on Alcohol Abuse and Alcoholism's guidance on measuring heavy alcohol use in women, which has been widely utilized in previous studies with women in South Africa ). Polydrug use, defined as a positive drug screen for two or more illicit drugs ; cocaine; and opiates) was included as an indicator of drug problem severity. --- Data Analysis Descriptive statistics were conducted on all variables. Tetrachoric correlations revealed that the criminal and status offense items were significantly related. Separate bivariate analyses were conducted to examine baseline associations between categories of these behaviors and sexual risk , heavy episodic alcohol use, and polydrug use. A complete case analysis was conducted because less than 1% of the data were missing on any of the measures. The sample included in the analyses comprised 498 young women. Chi-square tests of association were performed for categorical data and t-tests were conducted for continuous data. Multiple logistic regression analyses were conducted to examine the relationship between categories of criminal offense types and status offenses, and sexual risk and substance use outcomes, while controlling for community cluster with the use of Stata's survey analysis platform. Sociodemographic variables that were associated with the outcomes at the p ≤ 0.10 level were adjusted for in the final regression model. For this model, associations at the p ≤ 0.05 level were considered statistically significant. All analyses were conducted in Stata Version 16 . --- Results Table 1 presents the sociodemographic characteristics of participants. Their mean age was 17.76 years . Similar proportions of the participants selfidentified as Coloured and Black African. More than three-quarters of the AGYW reported that they had a main partner and just less than half of the participants reported their household ran out of necessities monthly or more often . Biological testing confirmed that 6.22% of the participants were living with HIV and almost all participants reported lifetime alcohol use. Overall, 80.40% of participants reported engaging in some form of criminal or status offense behavior in the previous 6 months, with an average of 2.53 behaviors . In terms of the different behavior categories, 73.60% of the participants reported engagement in status offenses, 47.20% reported crimes or injury against another person, 49.60% ; p = 0.02), crimes against other people , p = 0.04), theft and property damage , p = 0.04), and drug-related sales or possession , p = 0.05) being significantly younger than participants who had not engaged in these types of behaviors. Leaving school in Grade 9 or earlier was significantly associated with drug-related illegal behaviors only = 5.68, p = 0.02) in comparison to leaving school after Grade 9. Participants who reported having a current relationship/sexual partner were significantly more likely than those who reported not having a partner to engage in status offenses = 6.37, p = 0.01), but not in other types of criminal behaviors. Household hunger was not significantly associated with any of the four behavior categories. Table 3 presents associations between engagement in criminal offense behavior and substance use and sexual risk outcomes. Heavy episodic drinking in the past 30 days was significantly associated with status offenses , p < 0.01), committing crimes against or injuring people , p < 0.01) and theft or damaging property , p = 0.03). Crimes against people , p < 0.01), property damage , p = 0.03), and drug-related illegal behaviors , p < 0.0) were significantly associated with polydrug use. Engaging in drug-related illegal behavior was associated with condom use during last sex , p < 0.01). The results from multiple logistic regressions indicate that participants who engaged in status offenses had more than three times greater odds of reporting recent heavy episodic drinking than participants who did not, after adjusting for age . The status offenses category was not a significant predictor of the other outcomes . Engaging in recent crimes against others was significantly associated with polydrug use . Participants who engaged in drug-related illegal activity had significantly greater odds of testing positive for more than one drug compared with participants who did not engage in this illegal activity . Drug-related illegal activity also was significantly associated with decreased odds of condom use at last sex , even after adjusting for drug use. --- Discussion Although associations between criminal and other externalizing behaviors, substance use, and sexual risk have been found among adolescents and young people in high-income countries , limited research exists on how these externalizing behaviors are associated with heavy episodic drinking, polydrug use, and sexual risk among AGYW in LMICs. This study contributes to emerging knowledge on the relationship between types of criminal and status offenses and substance use and sexual risks for HIV within a sample of AGYW who have left school early and live in economically disadvantaged communities in Cape Town, South Africa. Study findings indicate high rates of criminal and status offenses in our cohort of outof-school AGYW. Approximately 80% of AGYW in this study reported engagement in at least one of the externalizing behaviors of interest. Even the least prevalent category of criminal and underage challenging behavior was reported by just under half of participants. With most mental health research among out-of-school AGYW focusing on the prevalence of internalizing behaviors associated with substance use and sexual risks for HIV, our study is among the first to highlight the importance of also addressing externalizing behaviors among outof-school AGYW in this setting. More specifically, study findings suggest associations between certain criminal and status offenses and likelihood of polydrug use and heavy episodic drinking, which are both widely recognized as risk factors for HIV among AGYW in South Africa . In this cohort, even the less severe types of criminal and status offenses were associated with greater likelihood of heavy episodic drinking. Because heavy episodic drinking is characteristic of alcohol use among AGYW in South Africa-with an estimated 40% of young women who drink reporting this pattern of consumption -and given that this pattern of drinking increases risk of adverse mental and physical health outcomes , identifying and reducing risks for this pattern of drinking is critical for the prevention of adverse health outcomes among AGYW who use alcohol. The finding of a significant relationship between condom use at last sex episode and illegal drug-related activities provides additional evidence that AGYW who engage in certain criminal and status offenses may be at increased risk for HIV. An interesting study finding was that risk for involvement in status offences was higher among participants who reported being in a romantic relationship. While these kinds of offences are generally viewed as less serious than criminal offences, they still reflect behavior that is concerning for their developmental age. It is, however, possible that having one main partner therefore may be a protective factor among AGYW for engaging in criminal activities if this partner is a form of social support. This is agreement with previous studies that found that adolescent girls who reported having significant adults in their lives who cared about them were less likely to report committing these kinds of offenses, although the kind of relationship with this adult was not specified . However, future research should be conducted to explore the role of significant others as protective factors for engagement in risk behavior, including these externalizing behaviors. Findings also point to associations between engaging in violent crimes against other people-such as fighting or hurting others with objects such as knives and guns-and polydrug use. Previous research also has shown that substance use is linked to aggression among adolescent girls and, later on, physical, verbal, and weapon-carrying aggression among adult women . Addressing involvement criminal and age inappropriate behavior in adolescence may prevent progression to more aggressive and violent behaviors that have more serious consequences for women . The associations found between engagement in crime and status offense, substance use, and sexual risk behavior have been documented in justice-involved populations from HICs . Our findings confirm that these behaviors generally do not occur in isolation from each other, and that this extends to AGYW who are not yet justice involved. Future research should explore the extent to which these different types of challenging behaviors can be explained by shared risk factors, such as poverty or other forms of early life adversity including exposure to violence and maltreatment. A better understanding of common risk and protective factors is needed to design interventions that target these behaviors ) Some limitations need to be considered when interpreting these findings. First, a dichotomous, self-report measure of criminal and status offenses was used. We did not assess frequency of engagement in these externalizing behaviors as this was not a primary focus of the parent study. Future studies that focus on externalizing behaviors among AGYW could include more detail on the frequency of engaging in criminal and status offenses and the age at which involvement in these activities began to further investigate this phenomenon . This could assist in establishing degree of involvement and temporality between these and other challenging behaviors. However, a strength of the measures used in the current study was that self-report criminal offenses can identify AGYW who have not yet necessarily engaged with the criminal justice system and therefore may be an opportunity for preventative interventions for AGYW who are often discounted from these types of interventions. Second, while symptoms of mental health difficulties were examined and the results published elsewhere , we did not assess executive dysfunction or gather information on history of neurodevelopmental disorders, such as attention deficit hyperactivity disorder or other forms of neurodiversity . This is of particular importance in South Africa which has the highest prevalence of fetal alcohol spectrum disorders globally . FASD is associated with other neurodevelopment and behavioral challenges such as impulse control and ADHD and challenging behaviors during adolescence among boys and girls . Untreated ADHD and other learning difficulties are likely to have been high in this cohort of AGYW who had left school prematurely and used substances. Given the characteristics of this cohort, the high prevalence of criminal or status offenses in this group may not be generalizable to other groups of AGYW in Cape Town or South Africa more broadly. It must also be noted that this study is cross-sectional, so it was not possible to investigate whether criminal or status offenses preceded substance use or condomless sex. Despite these limitations, study findings highlight high levels of engagement in criminal and status offenses in this cohort of AGYW who use substances and have left school prematurely. Early identification and intervention delivered in a non-stigmatizing manner, when AGYW first begin to experience problems with school attendance, may help prevent progression to more challenging behaviors and keep AGYW retained in school. AGYW who have already disengaged from education may benefit from community-based interventions to reduce involvement in these externalizing behaviors and prevent the progression to criminal behaviors and more adverse consequences. A brief intervention that targets substance use and involvement in externalizing behaviors has been found to be feasible with younger adolescents in this setting , but is not tailored to the needs of AGYW. This could be adapted to ensure that it addresses the gender-specific needs that AGYW in this setting may have. In summary, early intervention to reduce AGYW's involvement in externalizing behaviors is critical to prevent progression to more serious offenses that may have violent and legal consequences and impact adversely on AGYW's physical and mental well-being. --- Data Availability The data that support the findings of this study are available from Norwegian Social Research , but restrictions apply to the availability of these data, which were used under licence for the current study and so are not publicly available. The data are, however, available from the authors upon reasonable request and with the permission of Norwegian Social Research . --- --- Conflict of Interest The authors declare no competing interests. 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This study aimed to examine the relationship between externalizing behaviors, substance use, and sexual risk among adolescent girls and young women (AGYW) in Cape Town, South Africa, who experience social disadvantage characterized by poverty and school dropout. We analyzed baseline data from 500 AGYW in a cluster-randomized trial who had dropped out of school. Multivariate logistic regression models explored associations between self-reported criminal behaviors and other status offenses, heavy episodic drinking, polydrug use, and condomless sex. Engagement in status offenses was associated with heavy episodic drinking (OR = 3.56, 95% CI: 2.05-6.20), while crimes against other people were associated with polydrug use (OR = 1.65, 95% CI: 1.03-2.63). Drug-related illegal behavior was associated with polydrug use (OR = 7.78, 95% CI: 3.53-8.69) and reduced odds of condom use during last sexual episode, after adjusting for drug use (OR = 0.56, 95% CI: 4.00-5.15). As externalizing behaviors are prevalent among this sample of AGYW and associated with greater likelihood of problem substance use and condomless sex, interventions to improve the physical and mental well-being of AGYW should assess for and address engagement in criminal and status offenses.
List of Tables Table 1. Pooled Means, Standard Deviations, and Correlations…………………………………………………32 --- Introduction The risks and resiliencies associated with young people's environmental conditions and life experiences are a prominent theme in understanding youth development . Stressful life events at individual and family levels during youth and adolescence have enormous effects on development and long-term health outcomes . Conceptualized within a stressor model of development, stressful life experiences lead to negative mental health outcomes for youth . Given the disproportionately higher levels of adverse childhood experiences faced by youth of color relative to other youth , it is crucial to understand the unique threats faced by minority youth as well as the characteristics that may protect them from potentially harmful outcomes. Understanding these experiences within the context of a resilience theory may facilitate identifying and understanding protective characteristics. Adolescent self-perception influences many aspects of development and long-term well-being . Youth self-perception refers to a collection of attitudes that youth have about themselves in relation to a variety of life domains, including a general judgement about one's selfworth, also known as self-esteem . Stressful experiences early in life can threaten selfworth , and low self-worth is subsequently associated with mental health symptomatology . Identifying factors that can protect children from the effects of early threatening life experiences is crucial for developing positive youth self-perceptions. --- Resilience Theory and The Stressor Model of Adolescent Development A common approach to understanding the effects of stressful experiences on youth is through resilience theory . Resilience is a dynamic process of positive adaptation in the face of stress and adversity . This strengths-based approach seeks to understand healthy adolescent development despite exposure to environmental risks by identifying protective factors that promote positive outcomes. These factors are typically individual, family, or community characteristics that can mitigate the effects of certain stressors on adolescent outcomes. Although youth stressors have often been identified as a significant precursor to negative psychological outcomes , much of this literature lacks a consistent theoretical basis . To unify this body of literature, Grant and colleagues propose the stressor model of adolescent development comprising reciprocal, dynamic, and specific relationships between youth stressors and psychopathology. According to this model, stressful experiences, including chronic conditions and life events, can powerfully affect adolescent development. However, because stressful experiences do not invariably lead to negative outcomes for youth, it is important to identify factors that may explain why certain youth fare better under stressful circumstances . Therefore, models designed to understand the influence of stressors on youth outcomes should consider mediating variables, such as biological, psychological, and social processes as well as moderating influences of child characteristics and environmental contexts that will provide insight into whether and how specific stressors uniquely impact specific psychological outcomes . Despite these theoretical improvements, current literature lacks a nuanced understanding of the role of individual youth characteristics in the face of stress . The integration of the stressor model of adolescent development with resilience theory will provide researchers the tools necessary to deepen our understanding of the effects of adverse youth conditions. Stressful life events in childhood are common and harmful experiences that can impact a wide array of important psychological outcomes , including self-esteem . One factor that may serve to protect against the negative self-perception outcomes of these experiences is youth ethnic identity, which refers to a spectrum of attitudes and behaviors associated with the self-identification of an individual within a group membership . Ethnic identity is a central factor in youth identity development and psychological adjustment , and has been linked with youth self-esteem outcomes . Given the racial and ethnic disparities that exist regarding exposure to certain stressful life experiences , it is critical to examine the role ethnic identity plays in relation to these conditions. --- Self-Perception and Stressful Life Events Youth self-perception constitutes a collection of domain-specific evaluations that originate during middle childhood and comprise judgements about one's behavioral conduct, physical appearance, and scholastic, social, and athletic competence. Respectively, these self-perceptions reflect a child's evaluation of their satisfaction with the way they behave, how they look, their performance in school, their confidence in social groups, and their athletic abilities. Self-perception also includes a distinct value judgement of a child's overall worth as a person, which is referred to as global self-worth or self-esteem . Historically, self-esteem, self-concept, or self-image was conceptualized as a general, unidimensional construct that reflected an overall assessment of a person's self-attitudes . More recently, there has been a shift in the understanding and measurement of self-perception toward a multidimensional framework . Despite the benefits of focusing on unique domains of self-perception, most research continues to represent self-esteem as a general, unidimensional construct, or to focus on self-worth as the primary variable of interest while neglecting the influence of other domains of self-perception. Distinctions in self-competence are important to assess, because although general self-esteem consistently predicts positive relationship, health, and work-related outcomes , the effects of self-esteem are not always straightforward. The relationship between self-esteem and various positive outcomes is often modest and indirect, suggesting other factors may be at play. Further, important details emerge when we examine different domains of self-perception rather than focusing solely on general self-concept. While self-competence generally becomes more stable throughout development, toward the end of elementary school, academic, social, and athletic competence increase while perceptions of behavioral conduct decrease. Middle schoolers experience declines in every domain of self-perception except for behavioral conduct while high schoolers report increases in academic competence and physical attractiveness self-concept but declines in behavioral conduct and athletic self-concept. . Further, certain self-perception domains are uniquely related to important life outcomes. Academic self-concept, for example, is the strongest self-perception predictor of educational attainment, and domain-specific self-evaluations predict long-term socioeconomic status more accurately than general self-concept . Investigating various domains of self-perception and understanding the factors that contribute to the development of these domains will yield important implications for youth development. There is a lack of research dedicated to understanding the development of various forms of self-perception, and Black youth are particularly underrepresented in this literature. Stressful life events during youth and adolescence are important contributors to developmental outcomes. These types of experiences are broad, but often involve life transitions or acute traumatic events, such as parental divorce or separation, school transition, sickness or loss of a family member, family drug use, or crime . Stressful life events during youth are consistently linked with increased risk for internalizing and externalizing symptoms for adolescents and have long-term impacts on psychological well-being of adults . These risks are reciprocal and multiplicative in nature, such that those who experience negative outcomes due to stressful life events are more at risk for experiencing additional trauma and risk levels increase exponentially when youth are exposed to multiple stressful events . Among the variety of negative outcomes associated with stressful life experiences, Black adolescents who experience a higher number of stressful life events report lower levels of self-esteem . Most research into the connection between stressful life experiences and self-perception has focused on the effects of adverse childhood experiences. As opposed to more broad stressful life events, adverse childhood experiences refer to objectively traumatizing experiences such as incarceration, mental illness, substance use, and exposure to violence . While not identical, the similarity of these constructs means that understanding the implications of adverse childhood experiences may reveal important information about broader stressful youth experiences as well. Another challenge within this body of literature is that studies often focus on a specific type of adverse childhood experience within specific populations, which makes it difficult to understand how these experiences might manifest in a broader sense. This connection between stressful life events and self-perception may be explained in part by the reciprocal association between stressful experiences and internalizing and externalizing adolescent maladjustment. When adolescents experience stressful life events, such as parental divorce, loss of a family member, breaking up with a romantic partner, and physical illness, they demonstrate an increased risk for mood problems, which can be associated with low self-perception . Low self-perception subsequently increases the risk of stressful life events for adolescents . A complete understanding of the effects of stressful life events on specific types of youth self-perceptions is lacking, but overall, existing research suggests a strong relationship between stress and self-perception. The detrimental outcomes of stressful life events have been well-established, but their effects on self-perception have rarely been studied, especially when self-perception is conceptualized as a multifaceted construct. Further, children's unique risks and resiliencies are not often incorporated into this literature. Although racial and ethnic minority children have a disproportionately high risk of stressful life experiences , youth belonging to minority groups also demonstrate unique strengths during adolescence that are beneficial for positive development. For example, during adolescence, Black youth report higher levels of self-esteem compared to Caucasian and Hispanic youth . To improve our understanding of the risks faced by diverse adolescents, we must develop our knowledge of the protective factors, such as self-perception and ethnic identity, that may buffer against the detrimental impact of stressful life experiences. --- The Role of Ethnic Identity Ethnic identity is an integral aspect of youth identity development. Higher levels of ethnic identity are characterized by dedication to ethnic behaviors and practices within a group, degree of pride toward a group, and sense of belonging and achievement associated with a group . Attitudes toward other ethnic groups are also inextricably related to ethnic identity. In general, ethnic identity describes an individual's connection to a larger ethnic group. The role of ethnic identity for adolescents exposed to stressful experiences lacks thorough investigation, and most of this research focuses on specific strengths and stressors that are related to ethnicity itself, such as cultural support and experiences of discrimination and racism . Higher ethnic identity is associated with a variety of positive characteristics, including improved adolescent academic outcomes , decreased aggression and reduced symptoms of anxiety and depression . Ethnic identity and self-esteem have a positive relationship for a variety of ethnic groups . Although ethnic identity is considered beneficial for multiple ethnic groups, it may be particularly important to consider as a protective factor for Black youth, who typically have stronger ethnic identities but more life stressors compared to Latinx, White, and Asian American youth . For Black adolescents, ethnic identity is correlated with higher selfesteem and decreased dysfunctional behaviors . Ethnic identity can also buffer against the negative consequences of discrimination, a prevalent experience for Black adolescents that can have a deleterious effect on self-esteem . Although recent research has demonstrated the importance of ethnic identity and self-perception for youth, further investigation is necessary to understand how ethnic identity may influence the effects of environmental and personal stressors on youth self-perception, especially for low-income Black adolescents. --- Rationale The current study seeks to understand the role of ethnic identity in adolescent self-perception in the context of stressful life experiences. The goal of this study is to uncover strengths that may help explain childhood resilience in spite of adversity. Most literature in this line of research focuses on mental illnesses as outcomes of youth experiences. While these perspectives are important, characteristics such as self-perception and ethnic identity represent positive adolescent qualities and studying them may inform a strengths-based viewpoint of adolescent development. Existing research suggests ethnic identity and self-perception serve as strengths for Black adolescents and are positively and reciprocally related to one another . This study will improve our understanding of ethnic identity and self-perception as strengths for Black adolescents by investigating them in the context of prevalent life stressors. We hypothesize a negative main effect of stressful life events on each type of self-perception, taking into account self-perception at time one and relevant control variables. We hypothesize a positive main effect of ethnic identity and each of its components on each type of self-perception, taking into account self-perception at time one and relevant control variables. We also expect ethnic identity and its components to moderate the relationship between stressful life events and each of the selfperception outcomes. Specifically, ethnic identity and its components will protect against the negative effects of stressful life events. --- Method --- --- Measures Stressful Life Events. This 13-item scale measures whether respondents have experienced certain individual, family, and peer-level life transitions and stressful experiences within the past year. The scale is a compilation of items taken from other scales that have been used to measure stressful experiences for urban minority youth . Sample items include "In the past year, has your family had a new baby come in the family?" and "In the past year, has a close family member been arrested or in jail?". Participants responded yes or no to each question for a total possible score of 13. Because this scale assesses discrete stressful events that are not theoretically related to each other, measuring internal consistency is not as appropriate as in other measures. Multi-Group Ethnic Identity. The Multi-Group Ethnic Identity Measurement is a 20-item assessment of ethnic identity that includes four subscales: ethnic behaviors and practices, ethnic identity achievement, affirmation and belonging, and attitudes towards other groups . For adolescents, overall reliability for this scale is good ). Five items were used to measure affirmation/belonging, including "I feel a strong attachment towards my own racial group" . The subscale for ethnic identity behaviors/practices was measured using two items, including "I participate in cultural practices of my own group, such as special food, music, or customs" = .13, p = .15). Since the subscale for ethnic behaviors includes two items, it is more appropriate to measure reliability using a Spearman correlation statistic rather than Cronbach's alpha . In this study, ethnic identity achievement was measured using five items, including "I have a clear sense of my racial background and what it means for me" . Finally, four items were used to measure other group orientation, including "I enjoy being around people from racial groups other than my own" . The original subscales by Phinney included seven items for ethnic identity achievement and six items for other group orientation. However, item-level analyses revealed optimal reliability for these subscales when two of the items from each of these scales were removed. Youth responded to each item using a four-point scale ranging from strongly disagree to strongly agree. A mean total score was produced for each participant as well as mean scores for each of the four subscales, accounting for reverse-scored items. The total score was derived from the average of the 12 items items measuring ethnic behaviors, ethnic identity achievement, and affirmation and belonging . Based on previous factor analyses, other group orientation is a distinct factor of ethnic identity and was thus not included in the total score . Self-Perception. The 18-item self-perception scale used for this study is based on the original 36-item Self Perception Scale for Children , which measures six domains of youth selfperception. The abbreviated version used in this study focuses on three of the six original domains: social competence, behavioral conduct, and global self-worth, and the full six-item subscales were used to assess each of these domains. Participants indicated which of two statements they most related to, and then chose whether the statement was 'sort of' or 'really' true of them. An example item from the social competence subscale is "some kids would like to have a lot more friends BUT other kids have as many friends as they want." From the behavioral conduct subscale, an example is "some kids behave themselves very well BUT other kids find it hard to behave themselves." Finally, an example item from the global self-worth subscale is "some kids like the kind of person they are BUT other kids often wish they were someone else". Each question had a maximum score of four, indicating most positive selfjudgement. Average scores for each subscale were calculated. Reliabilities for these subscales were calculated using Cronbach's alpha scores and range between .71 and .87 . For this study, Cronbach's alpha coefficients for the social competence, behavioral conduct, and global self-worth scales are .74, .71, and .78 respectively. --- Procedure This study's protocol was approved by DePaul IRB as part of a larger violence prevention project. Students from four classes in each school were invited to complete surveys during school hours. Student agreement to participate was obtained prior to survey administration. Students were notified that they were free to decline participation, skip items, or withdraw during the survey. Parents of students were provided information and a chance to decline participation on behalf of their students through newsletters, permission forms sent home with students, and report card pickup. Data collection occurred under the supervision of trained graduate students on two days during fall and two days during spring of one academic year. Surveys were administered aloud to account for differences in student reading abilities. --- Results --- Preliminary Analyses In order to determine the minimum sample size for the proposed analyses, an a priori power analysis was conducted using G*Power3 . Results indicated that for main effect models, which include one predictor variable and one control variable, a minimum sample size of 55 is necessary to detect a medium effect size of f 2 = .15 using an alpha level of .05 and to reach a power of .80. For moderation models, to detect a medium effect size of f 2 = .15 using an alpha level of .05, a minimum sample of 68 participants is required to reach a power of .80 in a model that includes one independent variable, one control variables, and one moderator variable. All analyses were conducted using RStudio statistical software . Means, standard deviations, and bivariate correlations among all variables are presented in Table 1. Descriptive statistics and histograms revealed that the distributions of social competence, behavioral conduct, and global self-worth at time two were negatively skewed. Based upon recommendations by Wicklin , all variables were reverse-coded to address non-normality and create positively skewed variables that are consistent with gamma distributions. Regression diagnostics using these reverse-coded variables were performed to assess for linear regression assumptions. All other assumptions for linear regressions were met . Examination of plots indicated a linear relationship between each of the independent variables and the self-perception variables. Plots of residuals and analysis of variance ratios confirmed assumptions of homoscedasticity . Finally, plots indicated residuals were normally distributed. Gender and age are important variables to consider when studying self-perception, as they have both been found to explain differences in self-esteem in a variety of cultures . However, preliminary regression analyses indicated neither gender nor age were associated with social competence self-perception , behavioral conduct self-perception , or global self-worth . These demographic variables were thus excluded from further analyses. --- Missing Data An initial review of the data revealed that more than 10% of data were missing for each variable within the study. When missing data rates exceed this threshold, multiple imputation using auxiliary variables is recommended . Multiple imputation is suggested as an alternative to listwise deletion and single imputation methods due to its ability to reduce bias and maximize the validity of statistical estimates . Compared to complete case analysis and single imputation methods, this strategy has been shown to achieve smaller mean square error and thus better precision because it allows for each imputation to depend on the most recently imputed values . To perform multiple imputation, the MICE package in R was utilized . MICE implements multiple imputation by chained equations using type one predictive mean matching , which involves specifying the imputation model based on each individual variable . Prior to imputation, a predictor matrix in conjunction with passive imputation was specified . The predictor matrix was designed so that each variable was predicted only by other variables of the same wave and scale and passive imputation codes were included to ensure scales were properly calculated. To optimize statistical power, 40 imputations were performed with 10 iterations each . All analyses were performed on each of these 40 datasets, and results reflect the pooled findings across all imputed datasets. --- Multiple Linear Regressions Six generalized linear models were performed to assess the effects of ethnic identity and stressful life events at time 1 on the three components of self-perception at time 2 . Time one ethnic identity was positively associated with time two global self-worth but not social competence or behavioral conduct self-perception. In main effect models, stressful life events was not a significant predictor of any of the three types of self-perception. 12 multiple linear regressions were conducted to examine the four components that comprise ethnic identity at time one as predictors of the three types of self-perception. Both other group orientation and ethnic identity behavior were significant predictors of behavioral conduct selfperception and global self-worth . The significant relationships found in the main effect models are depicted in Figure 1. An additional 15 moderated GLMs were conducted to analyze the hypothesized moderation effects of ethnic identity and the four components of ethnic identity at time one on the relationship between stressful life events and the three components of self-perception at time 2 . Ethnic identity was a significant moderator in the relationship between stressful life events at time one and behavioral conduct self-perception at time two . By analyzing relevant plots, it was determined that as ethnic identity increased, the relationship between stressful life events and behavioral conduct self-perception weakened. Specifically, for low levels of ethnic identity, behavioral conduct self-perception at time two decreased as time one stressful life events increased. However, for higher levels of ethnic identity, time one behavioral conduct self-perception remained more stable for all levels of stressful life events. In this model, stressful life events was a significant predictor of behavioral conduct self-perception, such that higher levels of stressful life events predicted lower levels of behavioral conduct self-perception . In addition, ethnic identity behavior was a significant moderator in the relationship between stressful life events and behavioral conduct self-perception . The relationship between stressful life events and behavioral conduct self-perception was dependent upon level of ethnic identity. For low levels of ethnic identity, behavioral conduct self-perception at time two decreased as time one stressful life events increased. However, for high levels of ethnic identity, behavioral conduct self-perception at time two increased as time one stressful life events decreased. In this model, stressful life events was a significant predictor of behavioral conduct self-perception, such that higher levels of stressful life events predicted lower levels of behavioral conduct self-perception . Neither ethnic identity affirmation and belonging nor ethnic identity achievement were associated with self-perception. The significant moderation effects are depicted in Figure 2. --- Discussion The goal of this study was to understand the relationship between stressful life events, selfperception, and ethnic identity for adolescents. Consistent with the hypotheses, ethnic identity predicted global self-worth for Black adolescents at the end of the academic year. In addition, individual components of ethnic identity predicted aspects of self-competence, highlighting the utility of measuring these facets individually. Ethnic identity as a whole and ethnic identity behaviors emerged as significant moderaters in the relationship between stressful life events and behavioral conduct selfperception. The current findings provide partial support for the consensus in the literature that higher levels of ethnic identity are associated with more positive self-esteem . Ethnic identity was associated with greater adolescent global self-worth but not with social competence or behavioral conduct self-perception, challenging the assumption that ethnic identity has a uniform promotive impact on all types of self-perception. This provides credence to previous recommendations that youth stress studies should incorporate specificity in their methodology . Research that examines complex concecpts such as ethnic identity and self-perception at a broad level may overlook nuanced relationships. This study contributes to a mixed body of literature, in which ethnic identity has differential effects on self-perception across various studies. This study found that ethnic identity was not associated with all types of self-worth, which is consistent with other research of ethnic minority undergraduates that found a relationship between ethnic identity and self-worth but not scholastic or social competence . On the other hand, in a sample of predominantly Latinx adolescents, ethnic identity was related to global self-worth and indicators of social competence as measured at the beginning and end of high school, indicating the relationship between ethnic identity and self-perception may be different for youth of various cultural identities . Further, longitudinal research with young Black children has found that ethnic identity is associated with nearly all domains of self-perception , indicating the effects of ethnic identity on selfperception may be narrower for adolescents compared to younger children. While these few studies do not provide a sufficient basis to draw firm conclusions, these discrepancies indicate that other factors are at play. The current study bolsters this body of research by seeking to understand this relationship for impoverished Black adolescents and examining specific types of ethnic identify and specific types of self-efficacy. Differential findings associated with various components of ethnic identity suggest distinguishing between aspects of ethnic identity is essential for fully understanding its relationship with self-perception. Other group orientation was a predictor of behavioral conduct self-perception but not social competence self-perception or global self-worth. Given the results of the present study, it seems that stronger other group orientation, which in some cases means more positive attitudes about the mainstream ethnic group, facilitates greater behavioral conduct self-perception across settings. It is conceivable that adolescents derive stronger perceptions of their behavioral conduct by associating positively with dominant group norms or expectations in schools or other diverse settings. Indeed, Bennett Jr. found that bicultural competence, or the ability to effectively navigate multicultural settings protected Black adolescents from problem behaviors resulting from stress. Lee similarly described other group orientation as a "behavioral coping strategy" for adapting in a diverse society. In this study, ethnic identity behaviors significantly and positively predicted behavioral conduct self-perception and global self-worth. According to these results, it seems that Black adolescents who are more involved in cultural practices, customs, and organizations report stronger behavioral conduct self-perception and general self-perception. While the definition of cultural involvement is broad, certain types of involvement have been shown to be beneficial for Black youth. For example, involvement in community extracurricular activities and availability of religious-based support are associated with positive mental health . Further, participation in church is longitudinally related to higher self-esteem for low-income Black adolescents . The current study contributes to a limited body of research that lacks investigation into nonreligious cultural activites that are beneficial for Black adolescents. In addition, the results of this study suggest that the benefits adolescents acquire from cultural involvement are specifically associated with their perceptions of their behavior and their general self-worth. In this study, ethnic identity behaviors also had a positive predictive effect on global self-worth. In early investigations of the construct, ethnic identity as a whole was identified as a predictor of selfesteem across ethnic groups . However, Phinney and colleagues found that ethnic identity accounted for only a small proportion of variance in self-esteem, indicating many additional factors contribute to the development of self-esteem. In recent decades, research has pointed to an even more complex relationship between ethnic identity and self-perception. For example, while ethnic identity was related to self-worth for White and Latinx adolescents, this relationship is not significant for Black adolescents . For Black youth, ethnic identity may have other important benefits besides self-esteem. After controlling for self-worth, McMahon and Watts found that ethnic identity was associated with more active coping strategies and more prosocial beliefs and behaviors. Given societal shifts relating to race, ethnicity, and culture in the United States over the past several decades, it is important to ensure research reflects these shifting perspectives and experiences. It seems that for Black adolescents, ethnic identity behaviors are the most salient predictor of self-worth relative to other aspects of ethnic identity. These positive effects fit with the importance of cultural practices and activities for some Black communities . The current findings indicate that the impact of stressful life events on self-perception for Black adolescents is also best understood in the context of specific aspects of ethnic identity. On the surface, the finding that stressful life events do not predict any of the self-perception outcomes in main effect models seems surprising. After all, researchers have consistently found that more stressful life events are associated with less self-esteem ; however, stressful life events may not contribute to self-worth across time. In fact, other longitudinal studies have found the opposite relationship; self-perception predicts and protects against stressful experiences. For young adults, selfesteem was found to contribute to stressful life events, which subsequently decreased self-esteem . Both ethnic identity as a whole and ethnic identity behaviors emerged as significant moderators of the relationship between stressful life events and behavioral conduct self-perception. Lower levels of ethnic identity predicted a stronger negative relationship between stressful life events and behavioral conduct self-perception. In addition, lower levels of ethnic identity behaviors were associated with a negative relationship between stressful life events and behavioral conduct self-perception while a positive relationship emerged for higher levels of ethnic identity behaviors. It seems that for Black adolescents, general ethnic identity, and especially ethnic identity behaviors mitigate the negative impact of stressful life events on youth perceptions of their behavioral conduct. For adolescents with strong endorsement of ethnic identity behaviors, more stressful life events were actually associated with higher behavioral conduct self-perception. Among other benefits, it is likely that the social support derived from engaging in ethnic-related behaviors protects adolescents from poor self-competence outcomes. For example, McMahon and colleagues found that support from parents and peers protects adolescents from the effects of neighborhood stressors on their self-worth. Findings from the current study indicate ethnic identity behaviors serve a similar function, and that the protective effects can extend to many types of stressors. Stressful life events was a predictor of behavioral conduct selfperception when ethnic identity was included as a moderator. This study is among the first to identify a connection between stressful life events and adolescent perceptions of their behavioral conduct. It is understandable that adolescents would struggle with their perceptions of their behavior given previous research that has found a positive relationship between stressful life events and externalizing behaviors . It may be that adolescent perceptions of their behavioral conduct are sometimes a reflection of externalizing psychological symptomatology. --- Limitations The findings from this study should be understood within the context of a few important limitations. Although compiled from previously established surveys, our assessment of stressful life events was restricted to the specific types of events identified by our measurement tool . The 13 types of stressful life events included in this measure do not encompass the entire range of stressful experiences reported by youth, nor does the assessment take into account the potential unique impacts of each type of stressful event . In addition, despite the strengths associated with the longitudinal nature of the study design and the advanced statistical approach, analyses and interpretations could have been strengthened by measuring across more than two timepoints. Finally, although this study focuses on an underrepresented group of impoverished Black youth, the sample size is small, limiting the statistical power of the results. --- Implications Research Findings from this study reveal important connections between adolescent stress, ethnic identity, and self-perception that highlight potentially fruitful research directions for improving our understanding of adolescent experiences. Stressful life events and ethnic identity differentially impacted various components of self-perception, providing support for Harter's well-established recommendation that self-perception is most appropriately researched as a multidimensional construct. This study's findings also provide compelling evidence for similarly studying components of ethnic identity individually rather than as a composite construct. Although researchers have found evidence to support the internal consistency of ethnic identity and moderate goodness of fit for the construct , the unique results observed in this study suggest true relationships between variables can be obscured if aspects of ethnic identity are solely measured as an average score. In addition to these measurement considerations, the field would benefit from a deeper investigation into the mechanisms that explain how stressful life events impact adolescent behavioral perceptions, including potential mediators such as externalizing psychological disorders. --- Policy These findings speak to best practices for school discipline and behavioral support policies. School policies must prioritize culturally responsive training programs that prepare educators to recognize differences between expected behaviors across cultural groups and patterns indicative of student externalizing symptomatology. Such policies will simultaneously prevent implementation of discipline for non-harmful and culturally normative behavior and encourage referrals for mental health or other student support services when appropriate. In addition, local, statewide, and federal education policies should promote multicultural education that emphasizes learning about various cultures, traditions, and religions. Further, national holidays should be celebrated to appropriately honor cultural events and traditions. When holidays are not federally mandated, policies should protect individual and community rights to celebrate without negative professional or educational consequences. --- Practice Findings from this study can be used to design evidence-based school and community programs for supporting Black adolescents through stressful life experiences. Given the role of ethnic identity as a contributor to self-worth, classrooms and programs should support ethnic identity development starting from a young age. While it is important to continue developing ethnic identity throughout the lifespan, findings from the current study indicate that during adolescence, aspects of ethnic identity specifically impact global self-worth and behavioral conduct self-perception but not other types of self-perception. Programs aimed at improving Black adolescent self-perception broadly should not rely solely on bolstering ethnic identity, as there may be more salient factors for protecting against stressors. However, these programs would benefit from fostering ethnic identity behaviors, such as celebrating cultural holidays and traditions, engaging in religious events, or cooking foods associated with specific ethnic backgrounds. Results of this study simultaneously underscore the importance of ethnic identity development for adolescents while urging additional investigation into the complexity of the impacts of stress on youth. In addition to its important standalone effects, ethnic identity has an important influence on adolescent global self-worth, and ethnic identity behaviors and other group orientation have previously unidentified impacts on adolescent perceptions of their behavioral conduct. These findings illuminate the nuanced interactions between youth stress, ethnic identity, and self-perception that impact the lives of Black adolescents. , and low self-esteem is subsequently associated with a variety of internalizing and externalizing symptoms . Identifying factors that can protect children from the effects of early threatening life experiences is crucial to maximizing positive self-perceptions for youth from both a practical and theoretical standpoint. --- Resilience Theory and The Stressor Model of Adolescent Development A common approach to understanding the effects of stressful experiences on youth is through resilience theory . Resilience frameworks seek to understand healthy adolescent development despite exposure to environmental risks. Models guided by this theory generally attempt to identify risk and protective factors that promote positive outcomes, resulting in a strengths-based approach to conceptualizing adolescent adjustment. Risk and protective factors are typically individual, family, or community characteristics that can threaten or mitigate the effects of certain stressors on adolescent outcomes. Resilience can be conceptualized as a dynamic process of positive adaptation in the face of stress and adversity and is differentiated from resiliency, which is a personality trait . Notably, resiliency as a personality trait does not necessitate the experience of significant life challenges, while resilience as a process develops only as a result of exposure to stressful circumstances . When described as a personality trait, resiliency refers to a characteristic that contributes to adaptive functioning regardless of environmental surroundings . This construct is aligned with a fixed mindset of personal attributes and implies that resiliency is an innate ability that some people have while others do not. In contrast, a malleable mindset of personality reflects a belief in the capability to develop and improve individual human potential . Along these lines, studying resilience as a dynamic process provides a basis for developing interventions to promote resilience . It is important to consider multidimensionality and potential specificity in resilience research, as well as the underlying mechanisms that explain the influence of risk and protective factors . Although youth stressors have often been identified as a significant precursor to negative psychological outcomes , much of this literature lacks a consistent theoretical basis . In order to unify this body of literature, Grant and colleagues propose the stressor model of adolescent development comprising reciprocal, dynamic, and specific relationships between youth stressors and psychopathology. According to this model, stressful experiences, including chronic conditions and life events, have the potential to powerfully affect adolescent development. In this model stressors are considered environmental situations or ongoing conditions that are objectively threatening to the health or well-being of youth. However, because stressful experiences do not invariably lead to negative outcomes for youth, it is important to identify factors that may explain why certain youth fare better under stressful circumstances . Therefore, models designed to understand the influence of stressors on youth outcomes should consider mediating variables, such as biological, psychological, and social processes as well as moderating influences of child characteristics and environmental contexts . Considering mediating and moderating factors will also provide insight into whether and how specific stressors uniquely impact specific psychological outcomes . Despite these theoretical improvements, current literature remains focused on the direct effects of stressors on psychological outcomes and lacks a nuanced understanding of the role of youth individual variables . The integration of the stressor model of adolescent development with resilience theory will provide researchers the tools necessary to deepen our understanding of the effects of adverse youth conditions. Neighborhood disadvantage and stressful life events represent two prevalent youth experiences that can impact a wide array of important psychological outcomes , including self-esteem . One factor that may serve to protect against the negative self-perception outcomes of these experiences is youth ethnic identity . Ethnic identity is a central factor in youth identity development and psychological adjustment , and has been linked with youth self-esteem outcomes . Given the racial and ethnic disparities that exist regarding exposure to certain stressful life experiences , it is critical to examine the role ethnic identity plays in relation to these conditions. --- Self-Perception, Neighborhood Conditions, and Stressful Life Events Youth self-perception constitutes a collection of domain-specific evaluations that originate during middle childhood and comprise judgements about one's behavioral conduct, physical appearance, and scholastic, social, and athletic competence. Respectively, these self-perceptions reflect a child's evaluation of their satisfaction with the way they behave, how they look, their performance in school, their confidence in social groups, and their sport-related abilities. Self-perception also includes a distinct value judgement of a child's overall worth as a person, which is referred to as global self-worth or self-esteem . Historically, self-esteem, self-concept, or self-image was conceptualized as a general, unidimensional construct that reflected an overall assessment of a person's self-attitudes . More recently, there has been a shift in the understanding and measurement of self-perception toward a multidimensional framework . Subsequent analyses have confirmed the validity of multidimensional self-perception measurements . This more complex definition allows researchers to focus on domains within self-perception, each with unique self-evaluations that may be missed by a single-score approach. Nevertheless, most research continues to represent selfesteem as a general, unidimensional construct, or to focus on self-worth as the primary variable of interest while neglecting the influence of other domains of self-perception. These distinctions are important to assess, because although general self-esteem consistently predicts positive relationship, health, and work-related outcomes , the effects of self-esteem are not always straightforward. For example, the relationship between self-esteem and various positive outcomes is often modest and indirect, suggesting other factors may be at play. In addition, self-esteem is sometimes associated with counterintuitive or negative outcomes, such as increased experimentation with high-risk behaviors . Further, important details emerge when we examine different domains of self-perception rather than focusing solely on general self-concept. In a large-scale longitudinal design, Cole and colleagues found that self-concept generally becomes more stable throughout development, but various domains of self-concept demonstrate distinct patterns. Toward the end of elementary school, academic, social, and athletic competence increase while perceptions of behavioral conduct decrease. Gender differences in self-perception exist even at this early age, with females experiencing a decrease in perceptions of physical appearance. When compared to each other, females report higher behavioral conduct self-concept, while males express higher athletic competence. At about age 12, when students transition to middle school and experience biological changes, youth experience declines in every domain of self-perception except for behavioral conduct. The transition to high school is accompanied with increases in academic competence across genders and increases in physical attractiveness selfconcept but declines in behavioral conduct and athletic self-concept for females. Gender differences in self-perception remain relevant into adulthood, when males report higher self-concept in all domains except social competence . Further, certain self-perception domains are uniquely related to important life outcomes. Academic self-concept, for example, is the strongest self-perception predictor of educational attainment, and domain-specific selfevaluations predict long-term socioeconomic status more accurately than general self-concept . Investigating various domains of self-perception, as well as understanding factors that contribute to the development of these domains will yield important implications for youth development. There is a general lack of research dedicated to understanding the development of various forms of self-perception, and African American youth are particularly underrepresented in this literature. One factor that may contribute to the development of various domains of youth self-perception is the quality of a child's neighborhood. Neighborhoods are considered advantaged or disadvantaged based upon a complex array of factors such as crime, poverty and unemployment rates, drug and gang activity, availability of resources, housing quality, and perceived safety , and are subject to various civic, economic, and cultural changes . Issues of structural racism and discrimination are also inextricably linked with neighborhood quality and are often underlying factors that contribute to these indicators of neighborhood conditions . It is difficult to overstate the influence of neighborhood conditions on a child's life trajectory. A child's zip code is associated with well-being, school dropout, teenage drug use and even life expectancy . Residing in a disadvantaged neighborhood is related to poor physical health , lower cognitive and socioemotional outcomes , depression, substance use, and schizophrenia , independent of individual characteristics. Further, a child's neighborhood has substantial causal effects on long-term outcomes, including salary and likelihood of incarceration . In addition to these outcomes, children and adolescents residing in under-resourced communities may experience threats to their self-perception because of their surroundings. Given the link between neighborhood disadvantage and anxiety and depressive symptoms , along with the strong relationship between self-worth and internalizing symptoms , self-worth may also be intricately related to neighborhood factors. This connection has been investigated in other studies, although most of this research assesses self-esteem as a univariate construct and neighborhoods are often narrowly measured. For example, neighborhood poverty level, a commonly used, although arguably too restrictive, indicator of neighborhood disadvantage, is negatively associated with the self-esteem of residents . However, Haney argues that in order to deeply understand the nuance between neighborhood conditions and something as individualized as self-perception, it is important to consider subjective understandings of neighborhoods above and beyond objective neighborhood measurements, which are less likely to reflect resident perceptions of their neighborhood and may be influenced by bias . One explanation for the development of self-perception is the process of reflected appraisals, which happens when self-evaluation is established based on how one believes they are viewed by others . According to this theory, an individual's perception of a neighborhood as disordered may translate into the belief that others do not place worth on the quality of their neighborhood, which may be internalized and manifest as low self-esteem . Haney found that this perception of neighborhood disorder predicted self-esteem more strongly than age, sex, civic engagement, and neighborhood poverty, further emphasizing the importance of subjective interpretations of neighborhoods. For urban African American youth specifically, McMahon, Felix, and Nagarajan found an association between neighborhood disadvantage and global self-worth using a cross-sectional design but did not find evidence for a longitudinal relationship. In contrast, Paschall and Hubbard found that for African American males, exposure to neighborhood stressors had a detrimental effect on youth self-esteem, which can subsequently increase likelihood of antisocial behavior, indicating possible longterm outcomes. Further, youth exposed to neighborhood stressors over a five-year period demonstrate increased vulnerability to the risks of decreased self-worth, indicating this risk may exacerbate over time . These threats pose constant risks for an estimated 22% of our nation's children who grow up in impoverished communities and 37% of children whose parents described their neighborhoods as unsafe or expressed uncertainty regarding the safety of their neighborhoods . Overall, evidence points to negative self-esteem outcomes for adolescents in disadvantaged neighborhoods, but existing literature has yet to investigate potential unique effects of neighborhood conditions on different types of self-perception. Theoretically, there are reasons to suspect these differences might occur. For example, adolescents living in more disadvantaged neighborhoods exhibit more aggressive behavior compared to those living in more affluent neighborhoods . Haynie, Silver, & Teasdale found that among a variety of neighborhood characteristics, including residential stability and population size, neighborhood disadvantage emerged as the strongest correlate of adolescent violence. Even after accounting for individual factors such as age, gender, race, family SES, family structure, and parent-child relationships, neighborhood disadvantage was a significant predictor of serious violent behavior. This study also found evidence that exposure to peers partially mediates this relationship, such that adolescents living in more disadvantaged neighborhoods associate more with violent or less academically-oriented peers, which is subsequently associated with engaging in more violent behaviors. Neighborhood quality is also negatively associated with general externalizing symptoms, including hyperactivity, aggression, noncompliance, and lack of control over behaviors . Although there may certainly be discrepancies between adolescent behaviors and self-perceptions of those behaviors, it seems likely that neighborhood quality may have a similar negative effect on adolescent self-perception related to behavioral conduct. Adolescent social competence may be another domain of self-perception that is affected by neighborhood characteristics. Although research has yet to investigate this connection, there is evidence that observed social competence is to some extent dependent on environmental conditions. In a large, ethnically diverse sample of elementary students, neighborhood conditions such as physical and social disorder, economic disadvantage, and social capital were linked with teacher-reported social outcomes, such that teachers reported increased social aggression and poorer social competence for students living in more disadvantaged neighborhoods . After controlling for family demographic variables, reported social competence remained a significant outcome of neighborhood physical disorder but not of neighborhood economic disadvantage. These findings demonstrate there are multiple factors at play to explain youth social outcomes, and further investigation is necessary to understand the role of neighborhood factors. Similar to neighborhood conditions, stressful life events during youth and adolescence are also important contributors to developmental outcomes. These types of experiences are broad, but often involve life transitions or acute traumatic events, such as parental divorce or separation, school transition, sickness or loss of a family member, family drug use, or crime . A recent meta-analysis found that controllable and uncontrollable stressful life events are consistently linked with increased risk for internalizing and externalizing symptoms for adolescents . Stressful life experiences have a negative impact on the long-term psychological well-being of adolescents and their ability to function in daily life independent of adult experiences and social disadvantage . These risks are thought to be reciprocal in nature, meaning adolescents who experience negative outcomes due to stressful life events are more at risk for experiencing additional trauma . The effects of stressful life events are multiplicative rather than additive in nature, such that risk levels increase exponentially when youth are exposed to multiple stressful life events . The effects of stressful events tend to be non-specific, meaning they often lead to similar psychological issues regardless of the type of event a young person experiences . Compared to neighborhood stressors, there has been less investigation into the connection between stressful life events and self-perception. The research that does exist often looks at selfesteem as an outcome of adverse childhood experiences, which is a similar but sufficiently distinct form of stress. While stressful life events can refer to a broad array of experiences, adverse childhood experiences more specifically refer to objectively traumatizing experiences such as incarceration, mental illness, substance use, and exposure to violence . Adverse childhood experiences can be thought of as a type of stressful life experience. Nevertheless, the similarity of these constructs means that understanding the implications of adverse childhood experiences may reveal important information about broader stressful youth experiences as well. Another challenge within this body of literature is that studies often focus on a specific type of adverse childhood experience within specific populations, which makes it difficult to understand how these experiences might manifest in a broader sense. For example, experiencing physical maltreatment and witnessing domestic violence as a child has detrimental long-term implications for self-esteem . In addition to focusing on particular types of stressful experiences, researchers should seek to understand the general effects of these experiences on youth developmental outcomes. In one example of this general approach, McCreary, Slavin, and Berry found that for African American adolescents, experiencing a higher number of recent stressful life events was linked with lower levels of self-esteem for adolescents. Although research on the connection between stressful life events and self-perception is limited, extant literature indicates stressful life experiences during young adulthood contribute to lower selfesteem, especially for up to a year after the event . Further, there is a theoretical basis for the assumption that stressful life experiences may have unique effects on various types of self-perception. Stressful life events are reciprocally associated with internalizing and externalizing adolescent maladjustment. When adolescents experience stressful life events, such as parental divorce, loss of a family member, breaking up with a romantic partner, and physical illness, they demonstrate an increased risk for both mood problems and behavioral misconduct. These internalizing and externalizing behaviors are subsequently associated with experiencing more stressful events, resulting in a cyclical progression . There is evidence to suggest this increase in internalizing and externalizing behavior associated with stressful life events may diminish youth selfperceptions. A study of Swedish first grade children found that internalizing behaviors are associated with poorer youth self-perception. Youth externalizing behaviors were related to diminished student social competence as reported by teachers . Another study found a negative relationship between preschool students' social competence and cumulative risk, as measured by a variety of indicators including poverty level, parental depression, and negative life events . For adolescents, experiencing stressful life events are associated with increased verbal and physical aggression from peers . A complete understanding of the effects of stressful life events on specific youth self-perceptions is lacking, but overall, existing research suggests internalizing and externalizing behavior associated with stressful life events may negatively affect youth self-perception. The detrimental outcomes of neighborhood disadvantage and stressful life events have been well-established, but their combined effects on self-esteem have rarely been studied. It is important to consider these constructs together because they often have similar effects and may work in tandem. Understanding the influence of stressful life events in addition to neighborhood disadvantage can partly explain the differential outcomes observed for youth living in similar neighborhoods . Further, risks for children living in disadvantaged neighborhoods are often compounded by stressful life events. Although these types of experiences can be detrimental for a variety of populations, children in underserved neighborhoods are more likely to experience stressful events in addition to the chronic stressors associated with living in their neighborhood . In addition, there is evidence that the relationship between neighborhood disadvantage and poorer childhood mental health outcomes is mediated by stressful life experiences . Further, stressful life events predict aggressive behavior, but only in highly under-resourced neighborhoods, indicating stressful life events and neighborhood conditions interact in their effect on aggressive behavior . These findings underscore the importance of understanding how these experiences jointly contribute to youth development and adjustment. It is important to consider that racial and ethnic minority children are often overrepresented in disadvantaged neighborhoods and therefore more likely to be exposed to the risks associated with these environments . However, children belonging to minority groups also demonstrate unique strengths during adolescence that are beneficial for positive development. For example, during adolescence, Caucasian youth exhibit a steep drop in self-esteem and Hispanic youth report consistently low self-esteem. Both groups also report poorer self-esteem for females compared to males at these ages. In contrast, African American youth display consistently high levels of selfesteem during middle school, and these levels do not vary by gender . In order to improve our understanding of the risks faced by diverse adolescents, it is important to consider the role that group strengths, such as self-perception, can play in these experiences. Further, we must develop our knowledge of the protective factors that may buffer against the detrimental impact of stressful life experiences. --- The Role of Ethnic Identity Ethnic identity is an integral aspect of youth identity development and comprises a spectrum of attitudes and behaviors related to the self-identification of an individual within a group membership. Higher levels of ethnic identity are characterized by dedication to ethnic behaviors and practices within a group, degree of pride toward a group, and sense of belonging and achievement associated with a group . Attitudes toward other ethnic groups are also inextricably related to ethnic identity. In general, ethnic identity describes an individual's connection to a larger ethnic group. Traditionally, ethnic identity was related to culture and distinguished from racial identity, which is considered a socially-constructed phenomenon. Recent literature suggests that researchers not differentiate between these constructs, as they tend to overlap conceptually and practically . The influence of neighborhood factors on ethnic identity formation has yet to be fully understood, but an important connection between these variables does seem to exist. For Latinx adolescents, neighborhood risk and neighborhood poverty are respectively associated with diminished ethnic identity affirmation and exploration . For young African American children, positive perceptions of their neighborhood are related to stronger ethnic affirmation and belonging . Further, ethnic identity may play a different role depending on neighborhood context. For example, high racial pride is associated with higher GPA for African American youth living in more disadvantaged neighborhoods, but the opposite relationship is found for African American youth living in more affluent neighborhoods . This finding highlights the need to further investigate the relationship between neighborhoods and ethnic identity as well as the potential different functions of ethnic identity in varying contexts. The role of ethnic identity for adolescents exposed to stressful experiences also lacks thorough investigation, and most of this research focuses on specific stressors that are related to ethnicity itself. For instance, Dubow, Pargament, Boxer, & Tarakeshwar found that ethnic identity may serve as a source of stress as well as of strength for Jewish youth. In a sample of 75 adolescents, Jewish ethnic identity was related to ethnic-related stressors as well as coping strategies . Another study found that for African, Latinx, and Asian American youth and adults, ethnic identity was positively associated with individual, institutional, and cultural racism, but also with physical, psychological, relationship, environmental, and global quality of life . For African American college students, ethnic identity can buffer the effects of stress related to racism on career aspirations . These studies demonstrate the benefits ethnic identity provides in stressful circumstances, but future research is necessary to understand how ethnic identity may function as protection against a variety of stressors. Higher ethnic identity is associated with a variety of positive characteristics, including improved adolescent academic outcomes , empowerment , career selfefficacy, prosocial methods of attaining goals , decreased aggression and reduced symptoms of anxiety and depression . Ethnic identity and self-esteem influence each other bidirectionally , and the association between ethnic identity and self-esteem has been established for a variety of ethnic groups . All aspects of ethnic identity are positively associated with high self-esteem, and developments in ethnic identity exploration are longitudinally predictive of increases in self-esteem, at least for Latinx adolescents . Although ethnic identity is considered beneficial for multiple ethnic groups, it may be particularly important to consider as a protective factor for African American youth, who typically have stronger ethnic identities but more life stressors when compared to Latinx, White, and Asian American youth . For African American adolescents, ethnic identity is associated with higher self-esteem . Further, McCreary and colleagues found that when African American adolescents hold positive attitudes toward their own ethnic group, their likelihood of dysfunctional behaviors decreases. Perceived racial discrimination is a prevalent experience for African American adolescents and can have a deleterious effect on self-esteem . Further, there is evidence that ethnic identity may buffer against the negative consequences of discrimination. For example, youth who report higher racial pride experience better self-esteem in spite of discrimination compared to youth who report lower reported racial pride . There remains an incomplete understanding of how and whether ethnic identity can function as a protective factor for African American adolescents exposed to disadvantaged neighborhoods and stressful life experiences. Ethnic identity is a central factor in youth identity development and psychological adjustment . Among minority youth, ethnic identity can predict self-esteem and can protect against harmful experiences such as discrimination . Although recent research has demonstrated the importance of ethnic identity and self-perception for youth, further investigation is necessary to understand how ethnic identity may influence the effects of environmental and personal stressors on youth self-perception, especially for low-income African American adolescents. --- Rationale The current study seeks to understand the role that ethnic identity might play in self-perception outcomes of adolescents living in underserved neighborhoods and exposed to stressful life experiences. This is the only known study to date to measure the combined effects of neighborhood disadvantage and stressful life events on various types of self-perception while assessing the role of ethnic identity as a protective factor in this relationship. Many youth facing neighborhood and life stressors develop into well-adjusted and successful adolescents and adults. The goal of this study is to uncover potential strengths that may help explain the resilience of children who overcome these adversities. Most literature in this line of research focuses on mental illnesses as outcomes of youth experiences. While these perspectives are important, characteristics such as self-perception and ethnic identity represent positive adolescent qualities and studying them may inform a strengths-based viewpoint of adolescent development. Existing research suggests ethnic identity and self-perception serve as strengths for African American adolescents and are positively and reciprocally related to one another . This study will improve our understanding of ethnic identity and self-perception as strengths for African American adolescents by investigating them in the context of prevalent life stressors. --- Statement of Hypotheses Hypothesis 1. There will be negative main effects of neighborhood disadvantage, stressful life events, and ethnic identity measured at time 1 on each type of self-perception at time 2, taking into account time 1 self-perception and relevant control variables . More specifically, neighborhood disadvantage and stressful life events will have negative main effects and ethnic identity will have a positive main effect on three specific types of self-perception: a) social competence, b) behavioral conduct, and c) global self-worth. Hypothesis 2. Moderation effects will emerge, such that ethnic identity will protect against the negative effects of neighborhood disadvantage, taking into account stressful life events, self-perception at time 1, and relevant control variables on three domains of self-perception at time 2. At lower levels of neighborhood disadvantage, adolescent ethnic identity will not have a strong effect on self-perceptions, but for adolescents with higher levels of neighborhood disadvantage, higher levels of ethnic identity will be associated with higher self-perception . More specifically, ethnic identity will moderate the relation between neighborhood disadvantage and a) social competence, b) behavioral conduct, and c) global self-worth. Hypothesis 3. Moderation effects will emerge, such that ethnic identity will protect against the negative effects of stressful life events on three domains of self-perception at time 2. At lower levels of stressful life events, adolescent ethnic identity will not have a strong effect on self-perceptions, but for adolescents with higher levels of stressful life events, higher levels of ethnic identity will be associated with higher self-perception . More specifically, ethnic identity will moderate the relation between stressful life events and a) social competence, b) behavioral conduct, and c) global self-worth. my neighborhood" and "I have been afraid to go outside or my parents have made me stay inside because of gangs and/or drugs in my neighborhood". Stressful Life Events. This 13-item scale measures whether respondents have experienced certain individual, family, and peer-level life transitions and stressful experiences within the past year. The scale is a compilation of items taken from other scales that have been used to measure stressful experiences for urban minority youth . Sample items include "In the past year, has your family had a new baby come in the family?" and "In the past year, has a close family member been arrested or in jail?". Participants responded yes or no to each question for a total possible score of 13. Because this scale assesses discrete stressful events that are not theoretically related to each other, measuring internal consistency is not as appropriate as in other measures. Multi-Group Ethnic Identity. The Multi-Group Ethnic Identity Measurement is a 20-item assessment of ethnic identity that includes four subscales: ethnic behaviors and practices, ethnic identity achievement, affirmation and belonging, and attitudes towards other groups . For adolescents, overall reliability for this scale is good ). Youth responded to each item using a four-point scale ranging from strongly disagree to strongly agree. A mean total score was produced for each participant, accounting for reverse-scored items. The total score was derived from the average of the 12 items items measuring ethnic behaviors, ethnic identity achievement, and affirmation and belonging . Based on previous factor analyses, other group orientation is a distinct factor of ethnic identity and was thus not included in the total score . Self-Perception. The 18-item self-perception scale used for this study is based on the original 36-item Self Perception Scale for Children , which measures six domains of youth selfperception. The abbreviated version used in this study focuses on three of the six original domains: social competence, behavioral conduct, and global self-worth, and the full six-item subscales were used to assess each of these domains. Participants indicated which of two statements they most related to, and then chose whether the statement was 'sort of' or 'really' true of them. For example, "some kids like the kind of person they are BUT other kids often wish they were someone else". Each question had a maximum score of four, indicating most positive self-judgement. Average scores for each subscale were calculated. Reliabilities for these subscales were calculated using Cronbach's alpha scores and range between .71 and .87 . For this study, Cronbach's alpha coefficients for the social competence, behavioral conduct, and global self-worth scales are .74, .71, and .78 respectively. --- Procedure This study's protocol was approved by DePaul IRB as part of a larger violence prevention project. Students from four classes in each school were invited to complete surveys during school hours. Student agreement to participate was obtained prior to survey administration. Students were notified that they were free to decline participation, skip items, or withdraw during the survey. Parents of students were provided information and a chance to decline participation on behalf of their students through newsletters, permission forms sent home with students, and report card pickup. Data collection occurred under the supervision of trained graduate students on two days during fall and two days during spring of one academic year. Surveys were administered aloud to account for differences in student reading abilities. --- Results and Analysis --- Proposed Analyses Analyses will be conducted using RStudio statistical software. First, descriptive statistics will be conducted and reviewed to assess for central tendency and variability of all relevant variables. Means and standard deviations for all variables and correlations between all pairs of variables will be presented in a table. Skewness, kurtosis, and normality will be assessed to ensure the data is acceptable for 4. Interaction term: ethnic identity x neighborhood disadvantage OR ethnic identity x stressful life events This process will be repeated for each self-perception outcome , resulting in three regressions for hypothesis 2 and three regressions for hypothesis 3 to assess for moderation. The difference in R 2 will be analyzed using ANOVA to examine whether the addition of each interaction term significantly contributes to the variance explained in selfperception outcomes. --- Anticipated Results The execution of this research will provide valuable insight into experiences of African American youth exposed to stressful circumstances. Regarding hypothesis 1, this study will contribute to the already robust body of literature regarding the psychological effects of neighborhood disadvantage and other stressful experiences for adolescents. Self-esteem as an aggregate construct has been identified as an important correlate of adolescent stress , and this study will contribute to our field's understanding of this complex process by providing evidence either in favor of or against the proposition that neighborhood stressors and general life stressors impact self-perceptions of social competence, behavioral conduct, and global self-worth. The author anticipates that longitudinal analysis will reveal a significant negative relationship between neighborhood disadvantage and life stressors at time 1 and all three domains of self-perception at time 2. Further, by examining both of these stressors together, the author will be able to examine the amount of unique variance accounted for by each, taking into account the other. This research will have important implications for adolescents, families, schools, and researchers regarding designing appropriate interventions and understanding the multi-faceted nature of self-perception. Regarding hypotheses 2 and 3, results of this study will contribute to our understanding of ethnic identity as a source of strength for adolescents exposed to stress. Ethnic identity can function as protection from discrimination , and contributes to positive self-esteem . This study will improve our knowledge by assessing its role as a protective factor for African American adolescents exposed to neighborhood disadvantage and stressful life events in relation to their self-perceptions of social competence, behavioral conduct, and global self-worth. The author expects that hierarchical multiple regressions will reveal significant interaction effects between ethnic identity and both neighborhood disadvantage and stressful life events. Results will provide insight into the relevance of ethnic identity as an asset for adolescents exposed to environmental and life stress and may offer evidence that supports promoting and engaging ethnic identity in order to buffer adolescent stress among African American youth. --- Results The original analysis plan was modified based on research of best methodological practices by the student and expertise from the primary advisor. When data analyses begun, it was revealed that each variable of interest had missing data at a rate of at least 10%. When this level of missing data is observed, multiple imputation is an appropriate technique for optimizing the validity of results . Thus, the researcher used this method using the MICE package in R , which resulted in a sample of 140 participants. Data was organized, cleaned, and variables were recoded to be consistent with a Gamma distribution . Regression diagnostics were conducted to confirm that the data met the assumptions for regression, including investigating potential outliers, influential data points, distribution of residuals, multicollinearity, and homoscedasticity. All assumptions were met . The proposed research questions were analyzed using all 40 multiply imputed datasets, and results were pooled to obtain individual statistics. Based on theoretical background , gender and age were assessed as predictors of each type of self-perception, and neither were found to be significant predictors. To test hypothesis 1, three multiple regressions were conducted. These regressions revealed that neighborhood disadvantage was not a significant predictor of social competence self-perception, behavioral conduct self-perception, nor global self-worth. Higher levels of stressful life events at time 1 were associated with lower behavioral conduct self-perception at time 2 . Stressful life events was not a significant predictor of social competence self-perception nor of global self-worth. Higher levels of ethnic identity were associated with higher global self-worth at time 2 . Ethnic identity was not a significant predictor of social competence self-perception nor of behavioral conduct self-perception. With regard to hypotheses 2 and 3, it was determined by additional research that the hierarchical linear regression models that were proposed were not the most appropriate method of analyses. Instead, moderated generalized linear regression models were conducted. Six regressions were used to assess the moderation effects of ethnic identity on the relationship between either neighborhood disadvantage or stressful life events on each of the three self-perception outcomes. Ethnic identity did not significantly moderate the relationship between neighborhood disadvantage and any of the self-perception outcomes. Ethnic identity approached significance as a moderator of the relationship between stressful life events and behavioral conduct self-perception , and in this model, higher levels of stressful life events predicted lower levels of behavioral conduct self-perception . For low levels of ethnic identity, behavioral conduct self-perception at time two decreased as wave one stressful life events increased. However, for higher levels of ethnic identity, time one behavioral conduct self-perception remained more stable for all levels of stressful life events. Ethnic identity did not significantly moderate the relationship between stressful life events and social competence self-perception nor global self-worth. Based on these results, additional analyses were conducted to measure the impact of each of the components of ethnic identity on self-perception. Each of these four components were measured as predictors of each type of self-perception and moderators of the relationship between stressful life events and each type of self-perception, leading to modified version of the study that is presented above. In addition, we decided to remove the concept of neighborhood disadvantage from the study to streamline the project given the added complexity of incorporating specific components of ethnic identity. --- Discussion Results of the original research proposal demonstrated specific relationships between stressful life events and self-perception and between ethnic identity and self-perception. Stressful life events was negatively associated with behavioral conduct self-perception while ethnic identity was associated with global self-worth, providing support for the recommendation to analyze specifity of relationships in investigations of child stress exposure . While ethnic identity approached significance as a protective factor against the impact of stressful life events on behavioral conduct selfperception, no significant moderators were found. Neighborhood disadvantage did not emerge as a predictor of self-perception nor as a protective factor. According to results from this study, when adolescents experience higher levels of stressful life events such as loss of a family member, family member loss of employment, exposure to drug use, and transferring schools, they have poorer perceptions of their behavioral abilities. While certain items in this scale appear more obviously related to behavioral conduct than others, the linear nature of stressful life events as a predictor variable indicates that the number and variety of events experienced in a short period of time can significantly impact adolescent views of their behavior. It is likely that when adolescents experience difficult events or transitions in home, academic, and/or peer-related spheres of their lives, their energy and motivation for managing their behavior diminishes. When adolescents reported greater ethnic identity as an average score , they experienced higher levels of global self-worth. While endorsement of ethnic identity was not related to social competence nor behavioral conduct, it had a strong impact on adolescents' general self-concept. The global self-worth subscale assesses an adolescent's general happiness and contentedness with themselves and their lives. It seems that while strong ethnic identity is not a panacea for building and sustaining self-competence, it directly and positively influence adolescent overall perceptions of their self-worth. It is possible that adolescents with higher ethnic identity have more exposure to role models of their own race/ethnicity, a better understanding of their culture's history and accomplishments, and a stronger connection to their cultural strengths. These experiences may support the development of general self-concept as opposed to behavioral conduct or social competence self-perception, which are more skills-based competencies. Ethnic identity trended toward significance as a moderator in the relationship between stressful life events and behavioral conduct self-perception . While not at the level of statistical significance, tentative exploration of this finding was integral in the decision to further analyze components of ethnic identity as potential protective factors. With regard to this finding, higher levels of ethnic identity weakened the negative relationship between stressful life events behavioral conduct selfperception. It is possible that stronger ethnic identity provides adolescents with additional coping skills that mitigate the impact of stressful life events. CITE. In addition, it may be that social engagement and obligations to attend cultural events or be accountable to groups increases motivation for prosocial behavior and decreases opportunities for risky behaviors. --- Appendix A --- Original Thesis Proposal Including Results --- Introduction The risks and resiliencies associated with young people's environmental conditions and life experiences are a prominent theme in understanding youth development . Neighborhood conditions of youth have been consistently associated with adjustment and linked with health outcomes throughout adulthood . Stressful life events at individual or family levels during youth and adolescence are also important for understanding development and have enduring negative effects . Conceptualized within a stressor model of development, these stressful life events and chronic experiences can lead to negative mental health outcomes for youth . Given the disproportionately higher levels of neighborhood and personal life stressors faced by low-income youth of color relative to other youth , it is crucial to understand the unique threats faced by minority youth as well as the characteristics that may protect them from potentially harmful outcomes. Understanding these experiences within the context of a resilience theory is one way of identifying and understanding these protective characteristics. Adolescent self-perception has often been studied as influential in relation to many aspects of development and long-term well-being . Youth self-perception refers to a collection of attitudes that youth have about themselves in relation to a variety of life domains, including a general judgement about one's self-worth . Relative to other aspects, self-worth, also referred to as self-esteem, is the most commonly studied facet of selfperception. Self-worth is a critical factor affecting a variety of life outcomes including mental and physical health, relationships, and job satisfaction . Even under ideal --- Method --- --- Measures Neighborhood Disadvantage. The 11-item Neighborhood Disadvantage Scale assesses environmental conditions at the neighborhood level, including safety, orderliness, and poverty. Original reliability and validity are adequate , and Cronbach's alpha for the current study is .73. Participants answered either yes or no to indicate whether a statement was true or false, resulting in a range of scores between zero and 11. Sample items include "There are plenty of safe places to walk or play outdoors in further analyses, and transformations will be conducted as needed. Preliminary regression analysis will be utilized to investigate the potential effects of gender and age on all three self-perception outcomes, which will determine the necessity of their inclusion as covariates. Gender and age are important variables to consider when studying self-perception, as they have both been found to explain important differences in self-esteem in a variety of cultures . Following the data analytic system presented by Cohen and Cohen , multiple and hierarchical multiple regressions will be used in all subsequent analyses to test whether hypotheses 1, 2, and 3 are supported. The multiple regression/correlation method is appropriate for understanding relationships between complex behavioral phenomena. To test hypothesis 1, regressions will assess the main effects of the predictors on: a) social competence self-perception, b) behavioral conduct self-perception, and c) global self-worth. One regression will be conducted for each of the models . Neighborhood disadvantage, stressful life events, selfperception at time 1, and relevant control variables will be examined to predict each of the three types of self-perception at time 2. To test hypotheses 2 and 3, hierarchical multiple regressions will be used to examine the protective effects of ethnic identity. This statistical method uses a step-by-step approach to understand the contribution of different groups of variables on a particular outcome and has successfully been used to study moderation effects related to adolescent self-esteem . The variables will be entered into the models in the following order. 1. Control variables: time 1 self-perception and demographic variables 2. Predictor variables: neighborhood disadvantage and stressful life events 3. Protective variable: ethnic identity
The effects of stressors during youth and adolescence have long been investigated as powerful experiences affecting adjustment and well-being. Stressful life events predict a range of psychological and physical outcomes, but their impact on adolescent self-perception has yet to be studied thoroughly. Adolescent strengths, such as ethnic identity, may serve as protection from threats and warrant exploration. Using resilience theory (Fergus & Zimmerman, 2005) and a stressor model of adolescent development (Grant et al., 2003), this study examines the influence of ethnic identity in the relationship between youth stressful experiences and different types of self-perception (social competence, behavioral conduct, and global self-worth). Using multiple imputation and multiple linear regressions, this study examines longitudinal data from 140 Black, low-income youth ages 11-14. Results of this study indicate stressful life events are associated with behavioral conduct self-perception and ethnic identity is associated with global self-worth. In addition, individual aspects of ethnic identity, including ethnic identity behavior and other group orientation have unique impacts on self-perception outcomes. Ethnic identity and ethnic identity behavior were protective against the impact of stressful life events on behavioral conduct self-perception. Understanding the specific connections between youth stressors, ethnic identity, and self-perception for Black adolescents can provide insight into research, practice, and policy directions that rely on youth strengths to promote healthy outcomes.
INTRODUCTION Cervical cancer is the most common cancer in women under the age of 35 in the UK with persistent high-risk human papillomavirus infection being the principle risk factor. [1,2] HPV immunisation has been offered to all 12 to 13 year old girls in Scotland since September 2008 with uptake of all three doses of vaccine exceeding 90% each year within this routine cohort. [3] In addition, a catch-up programme was conducted simultaneously from September 2008 to August 2011 targeting girls aged 13-17. Overall uptake of three doses in this catch-up cohort was lower at 65% and varied by whether the individual was still at school at the time of vaccination and age. [3] The bivalent vaccine was used for the programme from 2008 to 2012; at which time it was changed to the quadrivalent vaccine. To assess the impact of the bivalent HPV vaccine on virological, cytological and histological outcomes, a national HPV surveillance system was created in tandem with the vaccination programme and all data collected to date are from girls who received the bivalent vaccine. Utilising data from the surveillance system we have shown a significant reduction in prevalence of HPV 16 and 18 and evidence of cross protection for HPV types 31, 33 and 45 associated with the bivalent HPV vaccine in 20 year old women attending for their first cervical screen. [4] In terms of disease outcomes, the bivalent vaccine has also been associated with a 55% reduction in high grade cervical intraepithelial neoplasia in women vaccinated as part of the catch-up programme [5] consistent with evidence from meta-analysis of data from nine countries. [6,7] Furthermore in addition to the observed impacts on vaccinated women, early evidence of herd protection for HR-HPV infection in unvaccinated women has emerged in Scotland which is consistent with data from Australia. [8,9] Deprivation, as measured by the Scottish Index of Multiple Deprivation , is associated with increased cervical cancer incidence and mortality -both more than two-fold higher in women residing in the most deprived areas compared to the least deprived areas in Scotland. [10] This disparity can also be observed at the global level with low-income countries having significantly higher rates of cervical cancer, four fold in some cases, when compared to high income countries. [11] These differences are likely to be multifactorial and include lower level of engagement with cervical screening, earlier age of sexual debut and increased likelihood of smoking in those from more deprived backgrounds. [12][13][14][15] Although uptake of HPV vaccine in Scotland is generally high across all SIMD quintiles there is a lower likelihood of receiving all doses in the most deprived. In the first three years of the Scottish HPV immunisation programme, uptake of the first dose in the routine schools based cohort was high across all deprivation categories but decreased linearly with increasing deprivation for doses two and three. [3] A similar pattern was seen in the catch-up programme where three dose uptake was 84.3-89.9% in those at school compared to ~30% in those who had left. [3] As school leavers are more likely to be from more deprived backgrounds, the substantially lower uptake in the out of school catch-up cohort coupled with the higher rates of cervical cancer in this group has the potential to widen the inequality gap between the least and most deprived women in Scotland with regards to incidence of cervical disease. The objective of the present work was to determine the effect that the introduction of the bivalent HPV vaccine has had on the inequality gap by measuring the incidence rates of CIN1, CIN2 and CIN3 at first cervical screen stratified by deprivation category and vaccination status. --- METHODS --- OVERVIEW OF THE SCOTTISH HPV SURVEILLANCE SYSTEM The methodology and processes involved in HPV surveillance in Scotland has been described previously. [4,5] In summary, HPV surveillance is longitudinal and is facilitated by the use of an unique patient identifier, the community health index number which allows for linkage of vaccination status to viral and disease outcomes. Since 2008, the Information Services Division of the Scottish National Health Service provides Health Protection Scotland with an annual update of the HPV surveillance cohort which contains anonymised data on all medically registered women born in Scotland between 1988 and, as of the end of 2015, 1994. These data are linked by ISD to HPV vaccination data from the Scottish Immunisation Call-Recall System , the Child Health Schools Programme-System and the Scottish Index of Multiple Deprivation using the CHI number. The linked records are anonymised and assigned a unique reference number before HPS review. SIMD is an index of multiple deprivation in Scotland which takes into account employment, income, health, crime, housing, education and access to services in small areas termed datazones. This deprivation index is then mapped to individuals based on their postcode of residence and quintiles of the score calculated overall. Individuals scoring SIMD 1 represent those that reside in the 20% most deprived areas while SIMD 5 represents those that reside in the 20% least deprived areas. --- LINKAGE The national Scottish Cervical Screening Call and Recall System is an information technology system used by the Scottish cervical screening programme. It contains longitudinal cervical screening records for all eligible women in Scotland and incorporates pathology, virology, recall and management information for all eligible women in Scotland. ISD send records of all 20 and 21 year olds attending for their first cervical screen to HPS on an annual basis covering the birth cohorts from 1988 to 1994. If a woman is referred to colposcopy, her results are captured in the National Colposcopy Clinical Information and Audit System . HPS receives NCCIAS data for those in the monitored HPV surveillance cohorts on a quarterly basis and up to 12 to 18 months of follow is available for each woman. --- ANALYSIS OF CIN IN WOMEN ATTENDING FOR FIRST SMEAR ACCORDING TO DEPRIVATION AND VACCNATION STATUS Incident abnormal histological episodes occurring within the first year following the first cervical screen in women aged 20 or 21 years born between 1988 to 1994 were considered for each woman. The incidence rates of CIN 1, CIN 2 and CIN 3 per 1000 person-years were calculated by comparing the numbers of each diagnosis to the person-time contribution of each screened women. Incidence rates and associated 95% confidence intervals were stratified by SIMD quintile and the number of doses received. The relative risk of each grade of CIN in vaccinated women compared to unvaccinated women was calculated using Poisson regression, adjusting for birth cohort to model potential sociological differences between cohorts with person-time contribution used as an offset. As the relative risks of each grade of CIN were calculated with reference to those with no disease, the person-time contribution of women with a different disease outcome to the one being assessed was not included in the calculation of the rates. Adjusted relative risks were calculated using a similar approach but with the inclusion of an interaction term between SIMD quintile and the number of doses received to consider potential differences on the impact of the vaccination on disease by deprivation quintile. All statistical analyses were performed in R version 3.2.0. Sensitivity analyses were performed for each grade of CIN; one model including only unvaccinated women, one including only those born from 1988 to August 1990 who would be unvaccinated as they were ineligible for vaccine and one including only those women born from 1991 to 1994 who were mostly vaccinated. These analyses were undertaken to remove potential sociological and temporal differences which may exist between those women who are vaccinated and unvaccinated which may confound vaccine effect. --- RESULTS Table 1 presents the characteristics of the women included in the study. Almost all women born in 1988 and 1989 were unvaccinated as they were not eligible to receive vaccine and therefore represent a baseline of CIN incidence in women attending for first screen in Scotland. As expected, the proportion of women receiving three doses of HPV vaccine increased with each new birth cohort from 1988 to 1994 . Additionally, the numbers of each grade of CIN have decreased from 1988 to 1994. The proportion of unvaccinated women was higher in the most deprived quintile compared to the least deprived quintile with vaccine uptake increasing with increased affluence. The proportion of partially vaccinated women is also higher in the high deprivation categories. Figure 1 shows the proportion of screened women who are fully vaccinated increases with decreasing deprivation for each birth cohort. The number of women with CIN1, CIN 2 and CIN 3 generally decreases with decreasing deprivation. S1) presents the incidence rates of CIN 1, CIN 2 and CIN 3 per 1000 person-years. Across all SIMD quintiles, the rate of cervical lesions is lower in fully vaccinated women compared to unvaccinated women. The difference in incidence rate between unvaccinated and fully vaccinated women is greater in those women diagnosed with more severe disease . The decrease in incidence is more profound in the most deprived; for CIN 3 the rate in the unvaccinated and most deprived individuals is 14.5 per 1000 person-years compared to 3.3 per 1000 person-years in those vaccinated . The corresponding results in the most affluent group is a shift from 5.1 per 1000 person-years in the unvaccinated to 2.5 per 1000 person-years in the vaccinated. The pattern of impact is similar for CIN 2 . For CIN 1, there was no significant evidence of a differential vaccine impact on incidence between SIMD quintile therefore only a main effects model was considered . Calculation of adjusted relative risks showed a significant effect of 3 doses of vaccine associated with a reduction of CIN 1 burden . After adjustment for vaccine status and cohort year, the effect of deprivation remains, with those in the least deprived cohort less likely to have CIN 1 . Sensitivity analyses did not significantly alter the relative risk estimates . women in SIMD 5. For CIN 2, the significance of the interaction between SIMD and vaccine 243 impact is likely driven by the low incidence in the unvaccinated women from the SIMD 3 group , which then affects the vaccine impact in this group . --- *The relative risk for each birth cohort is adjusted for the interaction of Scottish Index of Multiple Deprivation quintile and number of doses of vaccine received. For CIN 3, the differential impact of the vaccine by deprivation quintile is clear . Compared to the most deprived and unvaccinated group, those vaccinated in the same deprivation quintile have a significantly reduced risk . The impact for those vaccinated in the least deprived group is less evident when compared to unvaccinated, least deprived group illustrated by Figure 2C and reflective of the lower incidence rate in the unvaccinated individuals in SIMD 5. Sensitivity analyses of the models for CIN 2 and CIN 3 showed small differences to the relative risk estimates compared to the full model but did not change the overall conclusions . --- DISCUSSION The uptake of cervical screening in Scotland in women aged 20-60 has gradually decreased over the last 10 years and dropped below 70% for the time since 2007. [16] Therefore, HPV vaccination is increasingly important in the primary prevention of cervical cancer. We have shown that the bivalent vaccine is significantly associated with reductions of CIN 1, CIN 2 and CIN 3, with vaccine effectiveness against CIN 2 and CIN 3 greater in those women from the most deprived categories. These findings are welcome due to the higher rates of cervical cancer and poorer outcomes in women in SIMD 1. Our findings also allay the concern that HPV immunisation would further widen the inequality gap between the least and most deprived women with regards to rates of cervical disease. [2] Paired with evidence of herd immunity against HPV 16 and 18 in the unvaccinated population from those born 1993 onwards, [8] those most at risk are benefitting from protection against cervical disease. Nevertheless, there remains a cohort of unvaccinated women in SIMD 1 in which there are higher rates of cervical disease compared to the unvaccinated least deprived women, albeit a small number, and therefore the benefits of regular screening must be reiterated. We have previously shown that bivalent HPV vaccine is associated with reductions in low and high grade cervical abnormalities. [5] Evidence of reductions in cervical abnormalities is also being demonstrated elsewhere. An Australian study presented quadrivalent vaccine effectiveness of 46% against high grade cervical abnormalities and a study in the United States reported vaccine effectiveness estimates against HPV 16/18-attributable CIN 2+ of between 21% to 72%, depending on time between vaccination and diagnosis of CIN 2+. [17,18] We observed no significant reduction in CIN 1, 2 or 3 in women who were partially vaccinated despite a reduction in HPV prevalence in those women in a study of Scottish data. This may be confounded by differences in sociological factors which may exist between those who received only a partial number of doses compared to those who receive the full regimen and the fact only a small number women are partially vaccinated in Scotland. [19] As further data accrue, we aim to investigate the impact of partial vaccination on disease outcomes. Inequalities in cervical screening uptake in the UK and in other developed countries are well documented with women from deprived backgrounds less likely to attend. [20][21][22][23][24] Several factors have been identified which contribute to non-attendance of women at cervical screening including perception of risk of developing cervical cancer being low, the potential for embarrassment and pain, a lack of knowledge about the purposes of cervical screening and anxiety about the results. [23,24] These factors may disproportionately affect more deprived women due to lower educational attainment which has been shown to be associated with non-attendance at cervical screening. [25] Notably, a recent analysis of Scottish data showed that screening uptake, in vaccine eligible women, is higher in the most deprived women. [26] This contrast with previous research may be related to differences in the usage of health services or increased movement of the least deprived women. [26] It is welcoming that the Scottish data so far indicate that inequitable uptake of vaccine in the catch-up cohort and cervical screening has not led to a widening of the difference in rates of CIN between the most and least deprived. A major strength of our study is that we utilised data from large national databases which were linked to immunisation status via a unique patient identifier, allowing the impact of the HPV vaccine to be assessed directly. There are, however, some limitations associated with the study. The lack of sexual history data and the fact that all women included in the study received vaccine as part of the catch-up campaign may lead to lower estimates of vaccine effect than is likely to be observed in those routinely vaccinated at age 12. Another limitation is that the majority of unvaccinated women are from the 1988 and 1989 cohort; comparisons of rates between unvaccinated and vaccinated women is partly a temporal comparison, therefore, the differences may be confounded by changes in behaviours and sexual practices over time. This is partly adjusted for in the Poisson regression analysis by including birth cohort but cannot fully account for sexual history and practices. However, results of the National Survey of Sexual Attitudes and Lifestyles study have actually shown an increase in the number of sexual partners in women over time, which is known to increase the risk of HR-HPV infection. Thus the decrease is unlikely to be due to changes in sexual practices alone. [27] Results from sensitivity analyses show that temporal changes and/or sociological differences are unlikely to have had a substantial effect on our conclusions. While SIMD is an effective method of estimating deprivation it does have limitations. A SIMD score is assigned based on postcode of residence and therefore shows an individual is from a deprived area but it may not accurately represent an individual's true deprivation status. [28] Also, as seven different aspects of deprivation are considered, an individual may be categorised as being deprived based on aspects which are not as relevant to the likelihood of receiving HPV immunisation and attending for cervical screening. For example, an individual may be from an area which scores low on crime and housing conditions but scores more highly on geographical access and education which may be more influential on individual's health seeking behaviour. Our results are derived from those who have attended for their first screen at age 20-21 and are thus not wholly representative of the Scottish population where around half of all cancers are detected in those who have never attended for screening. Excluding women who attend their first cervical screen later in life will also underestimate the true burden of cervical disease and may bias our sample towards less deprived, vaccinated women. Studies in Scotland and the US have shown that screening uptake is higher in vaccinated women and therefore vaccine effect may be overestimated in our study. [26,29] It should be noted that deprived women who engage with cervical screening may be socially and culturally different to those that do not, potentially confounding the vaccine effect in the most deprived but this is tempered by the inclusion of the 1988 and 1989 birth cohorts who were ineligible to receive vaccine. The bivalent HPV vaccine in Scotland is associated with a reduction in the inequality in cervical disease between deprivation groups by decreasing the incidence of high grade cervical lesions in the most deprived women who attend screening to rates comparable to a level in the least deprived category. Our results are encouraging for other countries, including those with inequitable uptake.
 Cervical cancer disproportionately affects women from high deprivation backgrounds  Uptake of the HPV vaccine in the catch-up programme was lower and not equitable compared to the routine programme in Scotland  The HPV vaccine has previously been shown to be associated with significant reductions in HPV prevalence and cervical abnormalities in Scotland What this study adds?  We show a continued significant reduction in all grades of cervical intraepithelial neoplasia in vaccinated women with vaccine effect against CIN 3 greater in those from high deprivation backgrounds.  The HPV vaccine has reduced health inequalities in cervical cancer despite inequitable uptake in the catch-up programme.
IntrODuCtIOn Women with cerebral palsy are increasingly living into older adulthood. As they grow older, they experience specific bodily changes and related health issues, but are at risk of unmet needs due to structural barriers to healthcare. The study on which this paper is based provided an accessible forum for women with CP to discuss how ageing with CP effects their body and impacts their lifestyle, and their encounters with sexual and reproductive health services . bACkgrOunD Globally, 2 in 1000 live births result in CP. 1 2 In 2019, England alone had a prevalence of 25 273. 2 Population data from CP registers in Europe for births between 1980 and 2003 showed a significant decline in CP, suggesting it has been stable in recent years. 1 Influencing factors include advancements in neonatal and childhood healthcare treatments and technologies. 3 Recent unpublished data collated by Scope UK suggest that the population living with CP in England and Wales is 141 750 273. 4 In general, the prevalence of impairment is higher for women than men-19.2% strengths and limitations of this study ► The study used creative methodologies that allowed the inclusion of social stories from otherwise marginalised participants. ► The use of digital ethnography allowed us to draw on traditional ethnographic approaches and combine them with technology. ► A closed Facebook group was used to further ensure the involvement of women with cerebral palsy. ► The study is limited in that it focused on a selfselected group of women with a specific impairment, although many of their issues are likely to apply to women with other impairments. ► The participants were from the USA and UK which may limit the transferability of findings. Open access and 12%, respectively, 5 indicating that women with CP are a growing patient group. Research has tended to focus on CP in childhood rather than its lifelong effects. A plethora of international studies demonstrate the unmet health needs of adults with CP, 6 7 but there is little that focuses on how it affects women. Thus, the perspectives of women with CP are under-represented in contemporary understandings. As women grow older, CP impairment manifests in different ways, leading to early onset of age-related health issues across biomedical, psychosocial and functional domains, 6 8 including specific issues related to their reproductive health including early and severe menopausal symptoms. 6 8-10 Although motor function changes for all during the maturation process, in persons with CP, musculoskeletal problems may become more pervasive, often with an earlier onset than in nondisabled persons. 11 This process is sometimes referred to as accelerated ageing. A causal factor of this could be overuse syndrome, described as 'forcing my body over the physical limits'. 6 Pain may be due to how adults with CP perform routine movements, and is often related to softtissue injuries in muscles, tendons, ligaments or nerves. 11 Disabled women in general, and women with CP in particular, are likely to encounter physical and structural barriers to SRH facilities, medical equipment and procedures, such as breast scanners and cervical smears, and a lack of appropriate information about areas of reproductive health including menopause, pregnancy and contraception. 12 13 Cancer Research UK 14 reported that disabled women are a third less likely to participate in breast screening, and a quarter less likely to be screened for bowel diseases than non-disabled women. The picture is similar in the USA, as research indicates that disabled women, particularly those with physical impairments such as CP, underuse these preventative medical facilities. 15 16 Another factor often cited as a barrier to healthcare for women with CP is the pervasive misconception that disabled women are asexual beings and unable to pursue successful reproductive journeys. 13 17 They have been discouraged and sometimes physically prevented from exercising their reproductive capacities and becoming parents. [18][19][20] This has created a healthcare culture that may impact negatively on disabled women's reproductive health, putting them at risk of developing preventable chronic secondary conditions. Another problem is the transition from child-centred to adult-centred healthcare, and lack of specialist multidisciplinary teams and expertise specific to women with CP. 21 22 Knowledge, policy and practice systems in the UK tend not to take a life course approach to health, but instead view children, youth, young adults and older adults as distinct populations with separate service systems. 23 Rehabilitation services and other assistive interventions have been based on the 'once and for all character' of childhood impairments, 24 thus taking the view that once individuals with childhood impairments reach maximum functional capability there is little need to worry about functional decline relating to secondary impairments. Through the interdisciplinary lens of feminist disability studies, sociology and health, this article reports on the digital ethnographies of a global community of women with CP, who are members of the closed international Facebook group, Women Ageing with Cerebral Palsy . It focuses on the bodily and lifestyle effects of ageing with CP and women's experiences of SRH. The study addresses gaps in existing discourses on ageing, disability and women's health, highlighting the health and healthcare experiences of disabled women in general, and women with CP in particular. --- MethODs theoretical underpinning We draw on feminist disability theory, 25 established to address the research limitations of feminist materialism and disability theory which exclude the experiences of disabled women and the specific issues they experience that are not experienced by disabled men or non-disabled women 26 27 It recognises the value of the macro and the micro, of both social structure and individual biography. Feminist disability theory views the personal as political, using experiences of disabled women as drivers of social change. Further, it is concerned with non-normative female bodies and their interaction with the social, cultural and political environment. 28 29 Context Social media platforms are likely to be particularly beneficial for disabled people who may experience greater isolation and exclusion from traditional networks due to various barriers restricting access to social participation and engagement. 30 Facebook provides a channel of communication, collective action and awareness raising. 31 32 It provides people who are otherwise marginalised, with opportunities to debate, discuss and communicate with people who share similar interests and concerns. They can become research participants, 33 become demarginalised 34 and become part of a community that supports and empowers people with similar identities. 21 Moreover, as effects of CP include speech impediments and impaired mobility, online groups provide an accessible forum in comparison to traditional networking and support groups. WACP was set up in January 2018 as an international online information, support and discussion forum for women with CP, age 21+, and as a possible research resource. The purpose and origins of the group were made clear in the guidelines that new members were asked to read prior to contributing to or initiating discussions. Since inception, WACP has hosted discussions related to a plethora of embodied and relational impacts of being a woman with CP. The idea of WACP stemmed from the first author and her colleague -two women with CP who were themselves experiencing new effects of age-related CP, Open access but a dearth of specialist support and resources. Bringing together an international community of women with similar identities to share their stories 'can turn personal chaos into order. They can help us to make sense of our lives and the world around us; and in times of crisis, they can help repair damaged lives'. 35 To date, WACP has 140 members. --- Methodology The study adhered to the Consolidated Criteria for Reporting Qualitative Research. 36 Ethnography is instrumental to social research, as it is the art of telling the social stories of diverse populations. Therefore, when an ethnographer returns from the field, they always have social stories to tell. 34 However, with the increasing popularity of social media platforms in different areas of social, cultural and professional life, the way stories are communicated has changed. This study is described as a digital ethnography in that it is concerned with culture and social practices, but examined through the context of social media. This is recognised as a powerful research tool to capture the rich social stories of diverse subpopulations in contemporary society and those perceived as 'hard to reach'. 37 Three research questions were posted on WACP, by the first author, from January 2018 to March 2019. These related to bodily effects of ageing , lifestyle effects of ageing and experiences of SRH across life. Responses were posted by members of WACP. Forty-five members consented to include their posts in the study via a consent letter, sent to them individually via Facebook Messenger. --- Patient and public involvement The study engaged with women with CP throughout. It was designed by the first author who has CP and informed by the experiences of the forty-five members of WACP participants lived in the UK and USA and were aged between 21 and 75, with various classifications of CP which they were not required to disclose because effects of CP cannot be divided into neat classifications. Study results were shared with women via WACP. --- Data analysis We collated the participants' posts and content, analysed them to identify themes relating to accelerated ageing and experiences of SRH for women at different points over their lives. Posts discussing ideas for improvements in healthcare were also inductively analysed. 38 Posts with specific words and phrases were extracted and organised into individual categories. These categories were grouped to form distinct themes. To ensure rigour in our analytic process, the first author undertook the initial analysis of all data and then emerging themes were discussed and debated with the two coauthors until consensus was achieved. After several iterations, the themes were agreed as reported. --- FInDIngs Findings are presented under three themes: bodily effects of ageing; lifestyle effects of ageing and experiences of reproductive and sexual healthcare. Pseudonyms have been used instead of real names to protect identities of participants. theme 1: bodily effects of ageing There was much discussion about how women's bodies changed between the ages of 30 and 50, resulting in pain, deterioration of balance, fatigue and health decline expected in old age for individuals seen as 'able bodied'. The women seemed unaware of the concept of accelerated ageing and how their impairment would change as they got older: Since I have gotten older my condition has gotten more pronounced. More pain, more stiff, just more of everything. And I have to do the things I usually do differently now…I want to do it for myself. But sometimes I just can't. It is just frustrating. I just wish my body was like it was in my 20's!! I have always been prone to falling but it has increased over the years… It started for me in my 40s, usually when tired which is most of the time. My mobility had decreased along with my energy levels. It took me a while to accept these changes . …Aches and pains started showing up when I hit 40. Started with lower back pain, they named 'spondylolisthesis', can't walk more than a block nowadays, then OAB [over-active-bladder], need to go every 5 min, or not able to pee at all I got Cath'd [catheterised] twice, was hell. . A few women talked about experiencing what they termed as 'brain fog'. This meant: 'I go to move and I can't, it feels like I'm stuck. As if I'm literally unable to move. It's so frustrating'. Joan reflects on how the interplay of ageing and CP manifests in her body and what works to ease negative effects: My observations on aging with hemi CP with a combination of spasticity and athetoid are: My athetoid symptoms have decreased my spasticity has increased. After using muscle relaxers I've realized spasticity stops information from getting through to the muscles. Spasticity in the back really impedes walking. The younger members of the group realised that they are experiencing bodily changes as they grow older, and were curious about what this would mean for them, especially their functionality. For example, Hex was in her mid 20s and experiencing new pains and a loss of mobility: I have mixed CP: spastic and ataxic hemiplegic…I'm mobile. However I'm finding as I'm getting older that my mobility is decreasing and the pain from my CP is increasing. --- Open access Rachel was in her early 20s, when she joined the online community as the youngest member of the group, for support after she was no longer eligible to access physiotherapy, 'I feel alone, I no longer have a therapist'. theme 2: lifestyle effects of ageing Women spoke about how the bodily effects of accelerated ageing impacted on their quality of life, triggering a change in terms of how much they worked or engaged in other physical and social activities: One of my lifestyle changes is around work. For reasons to do with fatigue and the time I take to do things, I work part time and mainly from home. Although I used to go out to work don't think I could do so now. Fortunately…I have contact with people in the virtual world. That helps to reduce isolation and stay motivated . Like Rebecca, other women in WACP had to change working patterns as a consequence of the new effects of CP which caused fatigue and pain: I'm in my 50s…small business owner… I've recently had to cut back work partly because I'm now going at a snail's pace due to the effects of aging on my CP . Alison-a wife, a writer and mother in her early 50s, reflects how the expectations to perform life roles and compete with non-disabled women in contemporary society, while simultaneously negotiating encounters with associated disabling barriers, influenced her decision to change her working pattern: I crashed and burned out. No regrets though, I really enjoyed work, while I could do it. I think the hardest thing was trying to manage everyone's expectations, including my own…it was hard being a mum and working but the rewards, when they came, were worth it. Sadly it was unsustainable but I did it for 27 years which isn't bad. Deterioration in mobility and functionality caused some women to experience difficulties in performing daily personal care and domestic duties. They recognised they needed to make appropriate changes to accommodate this: I have someone to help me get dressed now. I'm still able to do it on my own , but my attendant can do it faster and I look much nicer than when I did it myself… By the time I finally admitted I needed help, I'd been struggling to do it all, so it came as a relief to have help . Thus, the ageing CP body can cause disruption to 'the expectations and plans that individuals hold for the future'. 39 Further, it can trigger a 'loss of self', 40 proposed to describe the negative change in identity, self-worth and social relationships instigated by trauma or illness. For instance Dolly, who was early 50s, reflects on how the bodily changes experienced from ageing have influenced a change in her personal identity, generating a feeling of loss: I am ambulatory but a recent worry rearing its head is: if I need to use a wheelchair because walking is becoming more and more unsafe for me, what will my family and friends think? This and other things trigger core values that were laid in childhood whether I want to admit it…. like fear of judgment and "letting people down"… Growing up, what I took in was that I will walk, will get good grades, and will have a career…So I'd liken it to the grieving process and its stages…I noticed I tend to grieve the loss before I'm able to accept/embrace. Alison, from the UK, identifies with Dolly's experience. She recalls how, growing up in an ableist society, the aspiration of 'being able to walk' was instilled into her from childhood, but was being contradicted by the premature ageing process which was gradually eroding the mobility she worked for: Walking was such a big issue at my special school and it is hard for me to let it go; even though I know my feelings are irrational and created by non-disabled people…I have always used a walking frame and will continue to do so for short distances as long as possible. There's a voice inside me that says if I stop moving, I'll stop living. Amber has not lost her mobility. However, as her embodied presence is counter to societal expectations of womanhood, she has found that her way of being provokes 'sticky encounters' 41 in certain situations. She recalls how recent sticky encounters with her work colleagues dampened her psychosocial well-being: I work for a well-known organisation and in the last two years I've had two experiences of disablism that have really knocked my confidence. The first was a man working for my dept saying he wouldn't work with people with speech impairments. I raised this as an issue and the dept told me there was no malicious intent so no action would be taken. The second is a boss who makes a string of inappropriate comments, to everyone not just to me. But, unfortunately, with me it centres around the CP; she's disciplined me for being absent for disability related reasons…I used to be happy go lucky and friendly to everyone. But these incidents have massively affected my confidence and I feel diminished by them. theme 3: experiences of sexual and reproductive healthcare On a macrolevel, there have been significant developments in SRH, in terms of rights, policy and practice. However, these have been largely based on the experiences Open access of non-disabled women. 42 Several of the women in WACP are mothers and discussed temporal experiences of pregnancy and maternity care, prompted by an article shared on the forum, reporting access and quality of maternity care for disabled women. 43 For instance, Candy reflected on her experience of the maternity care in 2016: …The midwives were not very clued up on anything and were unable to answer any questions I had about how to do things one handed… It was trial and error I guess. I bought a changing mat with a harness to strap the baby in to stop him from rolling…I bought a snuggle bundle to lift him from the changing mat to other rooms and a pair of little wings harness with straps when he was learning to walk…I was really saddened by the lack of info full stop. Rana, mother of two, commented: So sad that nothing seems to have changed since I had my first daughter in 1996. I was one of the founders of [a disabled parents' organisation] and was a full-time volunteer for 10 years. We offered a wealth of information and support on all aspects of parenting. Sadly, it is no more but the issues are still very much there. --- Janet reflects on her experience, in the late 1970s: There was no special or extra care when I had my daughter. It was 1979. The extent of special care was to hold my legs as I couldn't use the stirrup. I definitely think I should have had a caesarean as it would have helped. My pelvic floor, bladder and bowel were never the same. I only had the one child as it took a lot out of me to manage to do it. The stories reveal how, despite changes in policy and practice over 50 years, the reproductive trajectories of women with CP continue to be interlaced with varying degrees of disablism. The gynaecological health of women with CP was a salient topic, with women expressing concern about limited access to preventative healthcare treatment and equipment: Time to discuss everyone's favourite topic: the gynaecologist! As I've gotten older, my legs have gotten more spastic. My legs like to stay together. To prepare for my last visit, I took extra baclofen and some Ativan, so that they could hold my legs apart without me panicking. Despite this, the gyne couldn't get a view of my cervix and had to do a Pap smear by waving the scraper around and hoping she got some cervical cells…If they can't even get a look at my cervix, how am I going to figure out what's wrong ? I have had regular gynaecologist appointments since my mid 30s. It's annoying to me to have to explain to people that are helping me what I need, but most offices have accessible exam rooms these days . Some of the women admitted that they have stopped having smear tests as the methods used, coupled with their impairment effects, make it too uncomfortable: In Scotland, it's offered from the age of 20. I don't have them, partly because I spasm too much and meds don't help. Older members shared experiences of having mammograms, where services were ill equipped to meet the needs of women with CP. My first mammogram was a disaster, mainly due to the attitude of one of the professionals involved… The radiologist was just obnoxious in many ways but the final straw was when she shouted that my PA must remain in the waiting room. I tried to explain and she shouted again. I became tearful so left. When calm, I talked to a receptionist in a different part of the building who offered to go back with me to ask they talk with me respectfully. Mrs Obnoxious announced she had already written to her boss in case I complained! --- DIsCussIOn The prevalence of CP in the UK and USA is 2 and 3 per 1000 live births, respectively. 44 In both continents, the stable prevalence rate of CP in live births coupled with the increased life expectancy of adults living with the impairment means that the number of women with CP in adulthood and older life is increasing. The participants of this study were members of a closed international Facebook group only open to women with CP. The 45 participants were based in the UK and North America. To our knowledge, no other studies have directly explored how women with CP experience ageing and SRH. The findings shed light on unique experiences associated with women with CP. While a few previous studies have concluded that preventive screening interventions may be difficult for some women with CP, 7 13 16 44 putting them at additional risk of fatal disease, 15 our study is unique in illuminating the lifestyle and psychosocial impacts of ageing from a feminist disability studies lens. Thus, it considers disability as a cultural issue as opposed to an individual or medical one, and emphasises the value of 'what it feels like' accounts to understand the gendered nature of disability, impairment and impairment effects. 28 29 The digital ethnographies reported here inform an understanding of how disabled women's experiences intersect with systems and structures of healthcare and also with the ageing CP body. They reveal the hidden, often contested, histories of disability and sexual health that may collide with medical and ablist discourses which have traditionally pathologised and desexualised the lives of disabled women. 45 They allow for the focus to move beyond the 'life experiences of disabled people' and towards the 'experiences of disability in people's lives', 46 Open access but that their experiences can provide unique evidence of the ways disability manifests itself. Using the closed Facebook group as a research resource enabled us to capture the experiences of a 'hard to reach' population from two continents who traditionally have been excluded from speaking for themselves, in relation to their own health and healthcare. However, the study may have been affected by self-selection bias, as is often the case with offline research, where only certain kinds of people may respond to the research questions. Another limitation could be that participants' posts could be seen by each other, potentially influencing other participants' responses and potentially compromising anonymity. However, participants were made aware of this before they became members of the closed Facebook group and consented to be part of the study. Moreover, the influence on responses would be no more so than in some form of group discussion, such as a focus group. As this study was concerned with the experience of ageing and SRH healthcare experiences of girls and women with CP, which are not applicable to men with CP or non-disabled women, feminist disability theory was deemed appropriate to underpin the study. Unlike disabled men and non-disabled women, disabled women can experience both disablism and sexism by systems and structures at microlevel, mesolevel, and macrolevel. As systematic norms are created by those in positions of power, the more marginal characteristics an individual has, the greater the gap between their own social position and those considered more socially acceptable. 45 The organisation of social structures, processes and systems means that disabled women, compared with non-disabled women, are particularly susceptible to inequalities across different spheres of public and private life, including healthcare. Sexual health is not covered in the current National Institute for Health and Care Excellence guidelines on provision of services for adults with CP 47 nor previous NICE guidelines that focused on the transition from child to adult health services. 48 49 This indicates an important policy gap in relation to the care of women with CP. --- COnClusIOn Giving women with CP a platform to 'speak for themselves', in relation to health and healthcare, provides health professionals with effective resources to improve treatment for this growing adult patient community whose experiences have not received attention in health discourse or services. Listening to their voices and including them in public, medical and social discourse can bring a new knowledge to young women with CP about what ageing could mean for them so plans can be put in place for their future.
Objective To enhance understanding of the bodily and lifestyle effects of ageing with cerebral palsy (CP) for women, with a particular focus on experiences with sexual and reproductive healthcare (SRH) services in the UK and North America. Design A qualitative study underpinned by feminist disability theory and drawing on digital ethnographies to capture health and healthcare experiences for women with CP. setting A global community of 140 women with CP, who are members of the closed international Facebook group, Women Ageing with Cerebral Palsy (WACP). Participants Forty-five members of WACP who were based in the UK and North America. The women were aged between 21 and 75. Methods Messages posted on WACP between January 2018 and October 2018 were collated and underwent thematic analysis to identify themes relating to effects of ageing and experiences of SRH for women with CP at different points over the female life course. results The breadth of experiences in relation to the effects of ageing and access to reproductive and sexual healthcare for women with CP can be divided into three themes: (1) bodily effects of ageing; (2) lifestyle effects of ageing; (3) experiences of reproductive and sexual healthcare. Conclusions Giving women with CP a platform to 'speak for themselves' in relation to effects of ageing and SRH provides health professionals with an informed knowledge base on which to draw. This might improve treatment for this growing adult patient community whose experiences have not received attention in health discourse or services. Including these experiences in public medical and social discourse can also bring a new knowledge to girls with CP about what ageing could mean for them so plans can be put in place for their future.
INTRODUCTION Mobile phones have become an almost essential part of daily life since their rapid growth in popularity in the late 1990s, [1]. Globalization has changed our lives and one of the ways in which it is changing our lives, every day, is how we communicate; thanks to advancements in Information and Communication Technologies . One of the ICT's which is seeing rapid advancement is Mobile Phone. Using mobile phones for more than 10 years could double up one's risk of having brain tumor [2]. Nowadays technology is advancing and widening rapidly as per the needs of the generation that helps the people of the current world to perform each and every task at a fast pace.. Over last few years 61% of global population now using cell phones i.e., around the world, there are more than 2.4 billion cell phone users and more than 1000 new customers are added every minute [3]. Mobile phone is very popular nowadays, with 7 billion mobile connections worldwide and unique mobile subscriptions of over 3.5 billion they are very popular with young people and are commonplace in our educational institutions. [4,5]. A study conducted in Spain, discovered that a cell phone call lasting just two minutes can alter the natural electrical activity of a child's brain for up to an hour afterwards. The alteration in brain waves could lead to things like a lack of concentration, memory loss, inability to learn and aggressive behavior. The study suggests that this kind of damage in humans could trigger the early onset of Alzheimer's disease [6]. People who chatted on their cells for more than an hour, on a daily basis for four plus years, had greater auditory damage than those who used landlines [7]. The use of mobile phone among secondary school students had the significant relationship with their academic performance [8]. A Previous study conducted in Nepal among medical students at a medical academy revealed the phone usage signal the evolution of mobile phone use from a habit to an addiction [9]. Mobile phone has gained immeasurable ground in the lives of students all over the world. Mobile phone is a common sight today. In schools students going to school/class with some of the most expensive and sophisticated mobile phones, tablets and ipads that has all the applications, facilities and software that can connect them to the internet and all forms of social media platforms, other web sites and so on, where they chat, access, stream, download, upload, exchange and play different kinds of media contents, which most often, are pornographic in nature [10]. Researchers have discovered that the use of mobile phone in schools is problematic. [11,12,13]. There is the conflicting priority of young people, parents and teachers in relation to the mobile phone device, with teachers more concerned about issues such as discipline in the classroom and parents worried about means of contacting their children at every point in time. But, surprisingly, research on the influence of mobile phone on schools today has not been given much attention. Therefore, the objective of the study was to The objective was to assess how cell phone use affects secondary school students among secondary level school students in a selected school of Kathmandu Valley, Nepal. --- MATERIAL AND METHODS A descriptive cross-sectional study was done on 100 samples of secondary school students at Fluorescent Higher Secondary School in Gairigaun, Kathmandu. The reliability of the instrument was maintained by split half method and it was r= 0.86. Informed consent was taken from the school authority. --- Probability Stratified Random Sampling Technique was used for selecting the sample. The pre tested self-administered questionnaire with structured and semi structured questions was used to collect information through online survey in Fluorescent School app. The questionnaire has two parts with Socio-demographic information of the respondents and knowledge regarding the effects of mobile phones respectively. The level of knowledge score was categorized on the basis of three sections which include good level of knowledge , average level of knowledge and poor level of knowledge (<50% --- RESULTS The mean age and SD of respondents was distribution of respondents was 15.06±1.062 years. The majority of respondents belonged to the upper caste. Hinduism was practiced by the majority of respondents as shown in Table 1. The total mean score of the general The total mean score of the general DISCUSSION Auditory development in humans was closely related to the brain development [6]. Neurons Table 3 shows that more than half of the respondents have average knowledge, 32% of the respondents have good level of knowledge and 8% have poor knowledge on the effect of cell phone use. In Table 4, Independent sample t test was done in which the p-value obtained in association between knowledge regarding mobile phone and socio-demographic variable was greater than 0.05. Hence, it showed that there was no significant difference between knowledge regarding effect of cell phone use and sociodemographic variable. Table 5 shows that the mean and standard deviation of total knowledge score of Hindu respondents is 25.93±5.04, Buddhist respondents is 25.80±5.167, Christian is 24.33±4.98, Islam respondents is 29.0±4.98. ANOVA test was done for the variable at 95% level of confidence in which the p-value obtained in the overall knowledge score is 0.880 which was greater than 0.05. Hence, there was no significant difference the knowledge regarding the effects of cell phone and religion. --- DISCUSSION The study revealed that more than half of the respondents have average knowledge regarding effect of cell phone use. This study showed that 60% of the respondents had average level of knowledge, 32% had good level of knowledge and 8% had poor level of knowledge which is consistent to the study done Al Samadani et al., in which 8% had poor knowledge, 56% had average knowledge and 36% had good knowledge [14]. In present study majority of the respondent are using mobile phone for 2 to 3hours, for 3 to 4hours, for 4 to 5 hours whereas only for more than 5hours which is consistent with the finding of the study done Dhaka, Bangladesh i.e. Majority are using mobile phone for 2 to 3hours,for 3 to 4hours, for 4 to 5 hours whereas only for more than 5 hours [ 15]. In the current study, majority of the respondent answered that the positive effects of cell phone use are entertainment purposes, to pass leisure time, to keep connected with friends and family, for gaming purpose which is inconsistent with the finding of the study done in Malaysia i.e More than half of the respondent answered that the positive effects of cell phone use are entertainment purposes, to pass leisure time, to keep connected with friends and family, for gaming purpose [16 ]. In present study, majority of the respondent answered that the reason that mobile phone help with academic performance is online course material, more than half answered lecture videos, answered self-learning, and answered online games. It indicates that most of the respondent thinks the positive effect of the mobile phone is to reduce stress and anxiety which is consistent with the finding of the study done in Combodia where majority of the respondent answered that the reason that mobile phone help with academic performance is online course material, more than half answered lecture videos, answered self-learning, and answered online games [17]. In this study, majority of the respondent answered the effects of mobile phone use on social life is social anxiety, answered it as isolation, answered depression, and answered phobias which is inconsistent with the finding of the study on India i.e. less than half of the respondent answered the effects of mobile phone use on social life is social anxiety, answered it as isolation, answered depression, and answered phobias [18]. In our study, less than half of the respondents answered common cancer due to excessive use of the mobile phone is brain cancer, answered eye cancer, answered skin cancer and answered ear cancer which is consistent with the finding of the study in Karnataka, India i.e. Less than half of the respondents answered common cancer due to excessive use of the mobile phone is brain cancer, answered eye cancer, answered skin cancer and answered ear cancer [19]. Our findings depicted that majority of the respondent answered the main problem faced by a person due to excessive use of the mobile phone is headache, answered lethargy,answered body pain and answered fainting which is consistent with the finding of study on Bangladesh which is consistent with the finding of the study on Pakistan i.e. Majority of the respondent answered the main problem faced by a person due to excessive use of the mobile phone is headache, answered lethargy, answered body pain and answered fainting [20]. The study includes some limitations due to time limitation. This study was conducted among students in a single secondary school in Kathmandu valley. So, it cannot be generalized to all the secondary level students of Nepal. --- CONCLUSION The study concluded that majority of the respondents had average level of knowledge, few had good level of knowledge and less had poor level of knowledge regarding effect of cell phone use. Therefore the study highlights school based cell phone health awareness and education programs are necessity to improve the overall health of students. --- --- None
Background & Objective: All age groups use cell phones as a common form of communication, although adolescents use them especially frequently. Students' daily lives with mobile devices are getting more and more dependent on them, which has led to reliance. Its usage has climbed 67% globally and 44.89% in Nepal. The scale of potential health concerns among mobile phone users has increased due to the rising use of these devices. The objective was to assess how cell phone use affects secondary school students among secondary level school students in a selected school of Kathmandu Valley, Nepal.A descriptive cross sectional study was conducted among 100 samples by using Probability Stratified Random Sampling Technique. The pre tested selfadministered questionnaire with structured and semi structured questions was used to collect information through online survey by Fluroscent School App from Grade 9 and Grade 10 respondents. The collected data was analyzed by using Statistical Package for Social Science (SPSS) 16 version using descriptive and inferential statistics. Results: Majority of the respondents (38%) were of age 15 years. The respondents of Grade 9 and Grade 10 were equal. The overall mean knowledge score was 26.870 ± 4.978 regarding the use of mobile. The minimum score obtained is 15 and the maximum score obtained is 37 out of 40 possible correct answers .It showed that 60% of the respondents had average level of knowledge, 32% had adequate level of knowledge and 8% had poor level of knowledge. There was no significant association between knowledge regarding mobile phone use with other selected socio-demographic variables.The study concluded that there was average level of knowledge regarding impact of cell phone use. Thus, school based cell phone health awareness and education programs are
Introduction Globally, the disproportionate impacts of flood-induced displacement, predominantly on low-income and low-lying households, are raising pressing concerns for resettling internally displaced communities . 'Resettlement'-a complex and multi-faceted phenomenon frequently used by governments to permanently move communities from perceived dangerous situations to new locations -has recently resurged to prominence as a point of debate , particularly where government infrastructure and development projects led to diverse social, economic and political inequities . In response to observations that forced resettlement is still understudied empirically and undertheorised , we draw on resettlement studies and critical political ecology fields, to explore resettlement challenges in Zimbabwe, where disasters such as cyclones and floods have, in recent years, layered onto ongoing politicaleconomic instability. In this study we focus on the 2014 Tokwe-Mukosi flood disaster which displaced close to 50,000 villagers . Tokwe-Mukosi is Zimbabwe's first major post-independence dam-induced displacement in which climate stresses contributed significantly to both the immediate time of the disaster and the subsequent struggles. While not ignoring the struggles of communities resettled before the Tokwe-Mukosi flood disaster, we focus more on the population affected by the 2014 floods. As the first major disaster to displace such a significant number of people in Zimbabwe, it set a precedent for future resettlements and remains a contentious reference point for discussing a broader constellation of disasters in Zimbabwe. Building on insights from the first author's visit to the Tokwe-Mukosi area in 2014 and ethnographic research with flood disaster survivors in other regions of Zimbabwe over the last several years by the second author, we critically analyse literature from 2010 to 2021 to probe evolving themes on flood and dam-induced resettlement and power dynamics centred on the struggles that occurred in Tokwe-Mukosi. Studies on the Tokwe-Mukosi disaster have focused on human rights , policy , vulnerability , livelihoods , stakeholder coordination , and traditional leadership perspectives. Yet, few scholarly sources have explored how state power influenced vulnerabilities and undermined resilience building in the Tokwe-Mukosi flood-disaster resettlement processes. We therefore examine how the state-using the Ministry of Finance and Economic Development , Ministry of Local Government and Public Works , the Zimbabwe Republic Policy and the Zimbabwe National Army to control the compensation processes-encamped internally displaced persons in a transit camp, and eventually forced them to settle in a disputed Chingwizi site, thereby exacerbating their vulnerability. The overall aim of the study is to explore the impact of the hegemonic uses of state power in pre-and post-flood induced resettlement processes, using the 2014 Tokwe-Mukosi flood disaster as a case study. We draw on discussions in political ecology scholarship which offers analytical tools for moving beyond simplifying institutional rhetoric about resilience to explore how various faces of state power can serve capitalist interests that increase environmental vulnerability . The following research questions drive this study: What processes characterised the Tokwe-Mukosi pre-and post-flood induced resettlement period? How did state power contribute to the vulnerability of the Tokwe-Mukosi communities' forced resettlement? And Which lessons from the Tokwe-Mukosi resettlement process have been or have not been acted upon? We introduce our political ecology analysis in the next section, identifying gaps in flood-induced resettlement literature that beckon this analytic turn. The third section then introduces the Tokwe-Mukosi resettlement context along with our methodological approach. The fourth section discusses the results of our analysis before moving to the fifth and final section, where we draw out some critical implications, integrating our observations from Cyclone Idai in 2019 and Chilonga displacements in 2021. --- Contextualising ''resettlement'': experiences, institutional shortcomings and political ecology Literature on resettlement has embraced various, at times countervailing, tendencies. John et al. and Correa argue that preventive resettlement should be carried out as a last resort when flood hazards are uncontrollable and of high risk. Such preemptive measures reduce the exposure of vulnerable groups and their assets to flood risk by physically removing them from the threatened location to a safer location . McMichael et al. , for example, describe how villages in Fiji were assisted by the government to resettle when risks of flooding reached intolerable levels. However, resettlement can also be tied to other non-lifesaving priorities such as political legitimacy and identity. In India, Ghoramara and Lohachara, where scientists expect climate change to intensify land losses due to sea-level rise , resettlement coincided with the ruling party's desire to demonstrate a commitment to social welfare and resettlement in a habitable location . On the other hand, in the Pacific Islands, Farbotko et al. observed that some Tuvaluans challenged forced resettlement, risking drowning in order to preserve their identities and homes. Conversely, Albert et al. noted that in Alaska, indigenous communities in Shishmaref are yet to be relocated since 2002 due to limited government commitment to fund essential services, infrastructure, and housing in the new site. The point here is that the literature is replete with stories illustrating mismatches of the priorities of local communities and those of state actors. International frameworks, such as the Sendai Framework for Disaster Risk Reduction 2015-2020 , are meant to encourage the development of public policies from the national down to the local level to address relocations of communities in disaster-prone areas . Countries such as Fiji and Kiribati , for example, have developed guidelines to support proactive resettlement, and John et al. argue for the strengthening of governing institutions responsible for implementing such plans. However, as noted by others implementing policies with targets measured against international frameworks such as the SFDRR require understanding the contextual historical and socioeconomic environment that influences the outcomes. Critiques of camps used to accommodate victims of forced displacements have been ongoing for at least close to half a century . While governments still use camps as the central point for offering emergency aid services and security, these complex spaces are also hubs of increased vulnerability due to inadequate access to food, water, shelter, health care and other non-food items by IDPs as well as restricted livelihood opportunities particularly when state institutions curtail movements, access to resources, ownership of assets, and employment options for displaced communities . Additionally, these communities are sometimes relocated far away from their original location, which affects their ability to immediately embark on productive livelihoods . As it is the responsibility of the affected nation's government to sustain its citizens , humanitarian assistance to IDPs by international organisations is less established compared to refugee settings , and governments in Tanzania, Zambia, Sudan, and Uganda seem to have provided displaced communities with land without encamping them . Nonetheless, site selection is a critical aspect of the resettlement process, ideally achieved through giving communities the right to choose where they want to resettle equipped with knowledge on the level of hazard exposure which they perceive to be manageable. Reckless and haphazard resettlement of communities places them in the same or more dangerous conditions than they were before. John et al. observed that in Tanzania, the Mabwepande community resettled by the government due to floods, found themselves in an area with massive soil erosion actually increasing the risk of the floods inundating some of the houses. Governments have also used diverse strategies of compensating resettled IDPs, most commonly cash payments and land . Some governments prefer cash compensation as it is logistically more straightforward and faster to allocate than land . Also, Mariotti observes that IDPs often prefer cash compensation because it is immediate, which reduces the risks of governments failing to fulfil their promised follow-up support; the Gbagye tribe, which was displaced by the Nigerian government in the late 1970s to allow the construction of Abuja, the federal capital, has yet to be compensated . Nonetheless, the value of the cash compensation is not able to compensate for intangible losses such as social networks, income and culture . To optimise cultural preservation and social networks, Lo ´pez-Carr and Marter-Kenyon suggest the relocation of an entire village together; the Vunidogoloa villages in Fiji maintained the same spatial configuration when they resettled . However, agricultural livelihoods might be under threat in the new location , such that some scholars suggest the need for developing new industries apart from agriculture and complemented by both new and old skills training with a longterm focus . The point here is that displacement experiences and needs after disasters are varied. Miller defines just resilience 'as the conditions that enable people to cope with, recover and restore their livelihoods in fair, equitable and inclusive ways following shocks and disturbances, such as displacement, while also maintaining essential and valued connections to place, community and economy.' We argue that in studying resettlement, it is essential to dissect how power dynamics associated with state institutions influence resilience post disaster and that integrating concepts of power allows for a clearer understanding of divergent choices and inequalities. Exploring various injustices in the resettlement planning processes, while highlighting power imbalances that scholars and practitioners need to address, this study thus aims to apply a political ecology analysis to understand forced resettlement following a dam failure in a context of climate change exacerbations. Political ecology offers avenues for destabilising homogenising assumptions about policy discourses and marginalisation, giving attention to diverse histories, changing discourses and different social circumstances, raising questions about whose 'context' matters and how particular forms of hegemony and power are experienced at given points in time . With a political ecology analysis of what has been termed a society-nature interface , we aim to add to the emerging body of literature in this regard . Our case study focuses on how state actors in Zimbabwe's Ministry of Finance and Economic Development, Ministry of Local Government and Public Works, courts, police, and army influenced the resettlement processes in Tokwe-Mukosi. --- Context and methodological approach The SFDRR supposedly informs the approach to disaster management in Zimbabwe . However, the archaic Civil Protection Act of 1989, which is still the chief law governing disaster risk reduction in the country, does not reflect elements of the SFDRR or its predecessor, the Hyogo Framework for Action 2005-2015, especially regarding substantially reducing risks for losses in lives, livelihood opportunities, and property . As Belle et al. , Bongo et al. , andMhlanga et al. note, the legislation is more reactive than proactive. Our study is conducted in this context, to critically explore how the reactive policy stance affects resettlement during disaster-induced resettlement, focusing on the unprecedented disaster in Tokwe-Mukosi. The Tokwe-Mukosi dam is in the Masvingo Province, south of Zimbabwe. Chivi District, the origin of the Tokwe-Mukosi communities, receives an average annual rainfall of 400 mm typically, but between January and March 2014, received 850 mm of rainfall . While some resettlement efforts were underway, the incessant rainfall breached the dam walls of the Tokwe-Mukosi dam inundating 5,793 families upstream and downstream . The government evacuated the households to the Chingwizi Transit Camp and then to a subsequent resettlement area in Mwenezi District , 170 km from the Tokwe-Mukosi dam site . We used an inductive approach to understand how the Tokwe-Mukosi community was displaced and resettled in Chingwizi, employing document reviews and narrative analysis to appreciate different ontologies for making sense of the disaster's fallout. Focusing on how state actors assign particular notions of disaster risk reduction to the resettlement process, we recognise meaning-making as a product of c Fig. 1 Tokwe-Mukosi Dam, Chingwizi transit camp and resettlement site different subject positionalities and experiences . Here we seek to build a politically sensitive narrative surrounding the resettlement processes. The first author conducted a field visit to the Tokwe-Mukosi and CTC in 2014, providing an opportunity to put questions to government authorities. The second author has been conducting in-depth ethnographic research in communities impacted by Cyclone Idai in 2019 in areas near the Zimbabwe-Mozambique border to understand their perspectives and experiences of displacement and resettlement, where references to the Tokwe-Mukosi resettlement were, due to its prominence, repeatedly invoked, alongside wider policy concerns and fears. We collected data between May 2020 and March 2021, through a document analysis method, focusing on literature concerning the Tokwe-Mukosi resettlement process and its representation, using multiple data sources comprising scholarly sources, non-governmental organisation and government reports, conference proceedings, and newspaper articles to fill gaps and identify biases and inconsistencies within the data , enabling verification. Focusing on the 2010 to 2021 period allowed for understanding the historical roots and injustices embedded in the resettlement processes. We first conducted a systematic literature search on Web of Science and Scopus to obtain articles on Tokwe-Mukosi, refining the search terms using various combinations of: Tokwe-Mukosi, flood, disaster, dam, displacement, transit-camp, holding camp, Nuanetsi, Chingwizi, ranch, resettlement and relocation. After manually removing all duplicated articles, the process yielded only 15 articles. We then used snowball sampling to expand the literature search, searching for both academic and grey literature within the references of the identified articles. We selected articles which included the pre-and post-resettlement process of the Tokwe-Mukosi disaster, including the movement to CTC and the final resettlement in Chingwizi within the Nuanetsi Ranch, as well as the Tokwe-Mukosi dam construction period. Since we needed current information on actions that the government has taken based on the resettlement process, we included newspaper articles obtained from The Herald and The Standard from 2018-2020, using the same combination of search terms as used in the systematic search. The final data set consisted of 5 government reports, 7 NGO reports, 18 journal articles or book chapters and 25 newspaper articles. We used thematic analysis employing NVivo 12. To maintain a systematic analysis, we followed Creswell's six-step procedure to reiterate and reflect between the different stages and organise and describe the vast amounts of unstructured qualitative data in rich detail , while considering all aspects of and potential biases in the data. Keenly aware that documents cannot be treated as objective reflections of reality as they represent the views of those who write them, and are produced for diverse purposes, complementary analyses were derived from our research with disaster survivors in other locations-particularly in areas heavily impacted by Cyclone Idai, where discussion of what occurred in Tokwe-Mukosi was a frequent point of conversation. We also conducted an interview with personnel from the MLGPW, as well as a constitutional law expert, in addition to deriving insights from participating in webinar sessions together with displaced community members, civil society organisations and members of parliament with experiences of displacement in their constituencies. --- Tokwe-Mukosi's resettlement processes --- Compensation and its failings Between 2012 and December 2013, MLGPW resettled 600 of the 896 compensated households to Chisase and Masangula areas . Initially, MLGPW planned to resettle the affected 6393 Tokwe-Mukosi households in three phases by October 2015, before the anticipated filling of the dam in December 2015 . This figure was 48% lower than the 1,247 households that were actually targeted for resettlement in that same period. Most of the resettlement processes were also reactive, as MLGPW only resettled the remaining 5793 households in the aftermath of the flood disaster , such that the delayed relocation and subsequent flooding resulted in the death of six people from drowning, loss of crops, livestock and property . Reasons for stalled proactive resettlement processes included the central government's lack of financial resources to compensate and transport the remaining households and refusal by the households to be relocated without full compensation from MFED to enable the IDPs to re-establish their homes, initiate incomegenerating activities, restock livestock, and fulfil food, health and education needs . While the MLGPW compensated the Tokwe-Mukosi IDPs using cash payments and land-for-land strategies, only the 896 households valuated before the flood disaster received a lump sum payment ; the others only received funds in instalments, not fully paid until five years after the displacement. This left flood survivors unable to purchase suitable building material, replace lost assets or meet basic needs in the period between eviction and rebuilding. As a result, IDPs slept in the open and later in tents before they managed to build any housing infrastructure . In contrast to the more durable brick houses with zinc roofs built by those compensated early, households resettled after the flood received much less to cover immediate needs such as transport, food, education and health, among other unforeseeable costs, leaving little or no allocation for rebuilding houses. ZHRC and Mukwashi observed that households which received staggered compensation mostly built their houses from poles and mud, structurally vulnerable to windstorms. In 2019 windstorms destroyed more than 100 houses, condemning them back to tents provided by NGOs and the government . The 600 households resettled in Chisase and Masangula received the planned land-for-land compensation . In contrast, households in Chingwizi only received half a hectare-designated by the government for sugarcane production under irrigation, and another half for constructing a homestead . Since the size of the land was smaller than what the families previously owned in Tokwe-Mukosi, the smallholder farmers lost land for growing subsistence maize crops and small grains , individual and community gardening and livestock production . The HRW recorded an interview where one former village leader expressed discontent with the unilateral decision, saying: ''…we are now being forced to be sugarcane farmers. We have no previous experience in sugarcane farming; neither do we have an interest in it.'' In Chingwizi, privately owned land surrounded the households, leaving IDPs with no land for livestock production. While households claimed that their livestock died due to lack of pastures , compensation for these losses was denied, with the government stating that the law explicitly restricts compensation to improvements and crops made at the place of origin . Since the MLGPW resettled the communities in new village patterns, social networks were upset, with losses in Chingwizi including disrupting extended family members, church members, friends and village neighbours . These social networks carried with them intangible opportunities such as microfinance investment, locally known as mukando, based on longstanding relationships of mutual trust . Previous state-orchestrated, postmillennium displacements demonstrate that the Zimbabwean government has no history of preserving social networks when resettling IDPs. Potts notes that during the 2005 Operation Murambatsvina government evictions, the MLGPW trucks offloaded some families near their communal areas, while it randomly resettled others in former farmlands without any spatial configuration considered. Income losses included the loss of trade opportunities. More than 24 informal traders from 12 affected villages lost all their stock during the floods, as well as loss of customers . The informal traders had mostly sold clothing, foodstuffs, and electrical goods obtained from South Africa ; others locally traded in fish, fruits and vegetables grown in the nearby Runde catchment area river sources . After the disaster, the majority of traders in Chingwizi had to survive by selling cheap products made from natural resources such as reed mats, baskets and grass brooms . However, the ZHRC noted that the business was unlucrative because similar products flooded the market, and the clients, usually fellow IDPs, could not purchase the products as they lacked stable income sources. Additionally, the lack of property and business insurance , compounded by a lack of collateral assets to secure financial loans, reduced IDPs' access to the financial opportunities required for them to recover. Without security against income shortfalls and alternative profitable livelihood opportunities, displaced communities remained perpetually deprived . Importantly, the government only compensated immovable property while overlooking essential social infrastructure in the camp and new site. Displaced households still live in areas with inadequate health, water and sanitation, education, community centres, transport and other essential infrastructure . In Chingwizi, the MLGPW built five schools, two clinics and 63 boreholes only after the arrival of the IDPs to the resettlement sites , leaving a considerable shortfall from the initially planned development. Previous dam related displacements in the country show that once the state relocates IDPs, its support dwindles, as documented by Makururu et al. with respect to the state's withdrawal from displaced communities in Eastern Zimbabwe after the Osborne dam construction. Almost 30 years after the dam's completion, the resettlement area still lacks physical infrastructure like irrigation pipes, canals, schools and clinics . In addition to boosting the incomegenerating activities of the IDPs, Kalin notes that upgrading infrastructure is also essential to reduce tensions between IDPs and host communities. Critical narratives also point to how the government ignored compensation of cultural and spiritual losses such as religious sites and gravesites . Mwandayi observed that graves are an integral part of the traditional rituals of rural households in Chivi district, which include rain making ceremonies at the community level and protection at an individual level. The compensation process fractured the unacknowledged spiritual connection to religious sites that provide meaning to the daily lives of ordinary people. Hollenbach underscores the value of religion and spirituality in helping people to cope with trauma, reduce anxiety, gain social support and commune with the sacred. While MLGPW has previously assisted in relocation of the graves , the speed with which the Tokwe-Mukosi disaster occurred provided no time for exhumations to take place. Even though alternative remedies could have been sought, such as providing space for religious sites in the resettlement area, an interviewee from the MLGPW noted that the ministry could not provide alternative remedies due to lack of funds. Lo ´pez-Carr and Marter-Kenyon also suggest the relocation of an entire village together to preserve cultural and social network bonds, which MLGPW overlooked in Chingwizi. The compensation method used by MLGPW, which focuses on immovable assets and any other damages the affected households incur during the relocation process also ignores individuallevel losses, such as place-based knowledge from longstanding relationship with animals, land, forests, rivers, air and the sky, which takes years to establish. In Chivi, this knowledge contributes to decision-making on animal and human health, natural resource management and agriculture . Another type of uncompensated individual level loss includes significant leadership roles which vanished after the displacement. Thirteen village leaders from Chekai, Jahwa, Zifunzi, Mharadzano, Chikandigwa, Nemauzhe, Tagwirei, Ndove, Matandandizvo, Mashenjere, Nongera, Chikosi, and Neruvanga , and two chiefs lost their leadership roles . These losses, while occurring at individual-level, transcend individual boundaries by becoming intergenerational losses of identity and knowledge. While skills development and training plays a vital role in long-term resettlement planning by allowing IDPs to diversify their livelihoods , livelihood opportunities in most rural-to-rural resettlement tend to focus only on the agricultural sector despite the fact that agricultural livelihoods might be under threat in the new location . This observation resonated with the Chingwizi agricultural focus, with the assumption that the Ministry of Agriculture, Water, and Rural Resettlement would train the community in sugarcane production. Moreover, without irrigation, Chingwizi faced more severe water shortages compared to Tokwe-Mukosi, which existed near water sources . Usamah and Haynes underscore the importance for governments to consider community preferences complemented with both new and old skills training and long-term viability. Based on the activities that the Chingwizi IDPs carried out before and after the resettlement, alternative skills to agriculture that could have been strengthened by the government before resettlement include, but are not limited to, construction, selling in markets and microfinance skills. The pre-and post-flood resettlement processes, which we outline in Table 1, illustrate key developments in the construction of the Tokwe-Mukosi dam and related plans regarding the sugar plantation, electricity supply, fisheries, and recreation and tourism facilities aimed at growing the provincial economy. Embedded in this timeline are also the advocacies by IDPs and political elites dissatisfied by the government resettlement processes. In 2014, then Masvingo Provincial Affairs Minister Kudakwashe Bhasikiti declared that IDPs had adequate relief supplies , despite widespread shortages . However, after dismissal from his ministerial post, Bhasikiti, moved a motion in parliament calling on the government to complete the resettlement and irrigation scheme immediately and provide full compensation to the IDPs . In 2015, Bhasikiti's successor, Masvingo Provincial Affairs Minister, Shuvai Mahofa vowed to resettle the IDPs in a better place as they were currently 'living in a place fit for animals' . Regardless of the politicians' admission that conditions in the resettlement site were unsuitable, in 2014, the police arrested the Chingwizi camp committee leadership, including the chairperson, Mike Mudyanembwa, for protesting the conditions , with the courts sentencing him to a five-year jail term in 2015. Subsequently, Minister Bhasikiti accused the Chingwizi camp committee leaders of influencing the flood survivors to reject resettlement without compensation, which he claimed, the majority of flood survivors wanted . --- State power and the resettlement processes --- Diverse forms of exercising power in the resettlement processes The nexus between state power and the Tokwe-Mukosi resettlement processes started from the conception of the dam project and has no end in sight as the IDPs still live in limbo. Our analysis shows that the construction of the dam and the subsequent resettlement objectives depict clear state-driven capitalist values. The intended 25,000-hectare sugarcane irrigation project in the province involving the IDPs alters the agricultural livelihoods of the households from being subsistence farmers to commercial farmers, constituting a cultivation of powerless and exploitable neoliberal subjects who neither have control over what to grow nor market forces. Additionally, the dam-related recreation and tourism facilities meant to grow the provincial economy benefit only the few elites with sufficient capital to invest in the hospitality industry , with little benefit to the IDPs' quality of life. Central government, through MFED, demonstrated its priorities after the disaster when it focused on completion of the dam while neglecting IDPs' compensation . The processes of reducing disaster risk for the Tokwe-Mukosi community created new patterns of winners and losers reflected in the resettlement of the IDPs with capitalist motives of enriching the state's elite and forcing IDPs into a market economy. IDPs rather than benefitting from development now endure hegemonic ideals of disconnection to place, destruction of social networks and a drive towards commercial-oriented agricultural production. The state used its monopoly of power, exercised through MFED, MLGPW, ZRP, and ZNA to decide what was desirable to reduce disaster risk. The purpose and siting of the dam project was the state's conception . MFED controlled the value of compensation and payment terms, while MLGPW advanced a narrative that perceived IDPs' demands for compensation as improper . ZRP and ZNA controlled access to humanitarian resources in the camp and were instrumental in forcefully evicting IDPs from the camp . MLGPW determined the location of the new settlement, including the settlement patterns and land use in the new site . MLGPW excluded traditional authorities from the resettlement processes and abolished their authority in the new site . Since the dam completion in 2017, IDPs are yet to benefit from the promised dam projects. As argued by Ingalls and Stedman , hegemonic application of social power results in privileging the interests of some actors over others, which creates distributional inequalities. We contend that the inequality and accumulation of power in the state's elite is increasing rather than reducing vulnerability. As such, we argue that it is essential for scholars to focus clearly on power relations, avoiding presumptions about homogeneity or equal ability of --- 123 individuals, communities and nations to coping with challenges of displacement. There were three main ways in which the IDPs were resettled, attributable to different circumstances and preferences. The first resettlement way was without direct physical force. MLGPW resettled households either directly to their permanent sites from Tokwe-Mukosi or after briefly staying in the camp before 'volunteering' to move to the permanent site. However, Oxfam observed that: '…some households had to carry their belongings from the road to their plots walking approximately 4 km into the bush looking for their pegs. The plots were not cleared, neither were they habitable. Each family was allocated tarpaulin plastic sheeting without timber…' . Voluntary resettlement of encamped IDPs continued until the forced closure of the camp. During the first author's visit in April 2014, the Mwenezi District Administrator explained that the government was offering free transport to families who volunteered to resettle to permanent sites. That same month, the then-MLGPW minister, Ignatius Chombo, threatened to stop providing relief to the IDPs, if they declined to move out of the camp to the one-hectare plots without compensation; only 400 out of over 18,000 yielded to the pressure . Here the state apparatus used economic force to enforce the will of elites. The second method of resettlement involved the police and army's use of outright physical force. After the majority of the IDPs refused to move out of the camp without compensation, the government relocated the clinic to the final resettlement site in early August . The IDPs protested violently, disarming anti-riot police and burning two ZRP vehicles in the process . In mid-August, ZRP and armed ZNA soldiers arrested over 300 IDPs, destroyed the temporary shelters, and ordered everyone to the new resettlement site . Violence was further augmented by the fact that the Nuanetsi ranch where Chingwizi is situated had disputed ownership, claimed by Development Trust of Zimbabwe , a company aligned to the ruling Zimbabwe African National Union-Patriotic Front party . Reviewed literature shows conflicts even before the 2014 resettlement. Mujere and Dombo report that in 2010, DTZ obtained a court order to evict twenty-five households and their 12,000 cattle from the ranch during the country 's 2000-2003 Fast Track Land Reform . The third type of resettlement was self-settlement outside Chingwizi after the violence. The IDPs either moved to other places of choice within Chivi or back to the original resettlement site . Zikhali notes that IDPs who moved to various parts of Chivi District were in search of autonomy from government control, agricultural land for livestock and crop farming. IDPs who moved back to Tokwe-Mukosi still had habitable homesteads, unaffected by the floods , despite the risk of future flooding. Since most households remained in Chingwizi, the returnees also risked limited physical connection to families and neighbours in Tokwe-Mukosi. The government, however, vowed to evict those who had resettled in the dam basin . The self-settlement reflects the preference by many IDPs to pursue self-defined vulnerability reduction characterised by autonomy and preference for settlement and livelihood opportunities outside the limits of state-defined vulnerability reduction. Unsuitable settlement at Chingwizi: a centre of state-perpetuated violence One of the government's justifications for setting up the camp was creating a central logistical coordination for meeting IDPs' humanitarian needs . However, Samu and Kentel point out that the government met the humanitarian needs of IDPs in the country's previous emergencies without encamping the victims, noting that in 2000, aid agencies provided humanitarian aid to more than 500,000 Cyclone Eline survivors in the Limpopo and the Save River basin, without encamping them. Therefore, using this argument for encampment seems disingenuous. Moreover, World Food Programme and other humanitarian agencies barely met the critical food and non-food requirements in the Chingwizi camp. One flood survivor interviewed by the CCJPZ summed up the challenges in the camp by saying: We have inadequate food and shelter. Sanitary, ablution and healthcare facilities are scarce. We do not have boreholes or any reliable clean source of water. The tents that were donated as a form of shelter are few and therefore crow-ded…We do not have schools and our children have been out of school for long…We are not sure when the situation will improve . Even though the central government set up the camp supposedly to provide physical security to the large number of IDPs, it became a centre of state perpetrated violence and abuse . Madzokere notes that the police failed to adequately prevent the host community from stealing donated goods as the outsiders masqueraded as IDPs. Betera also reports that ZRP officers and state officials stole the supplies the community expected them to protect and equitably distribute. While the MLGPW assumed greater control of aid distribution by directing that all aid pass through the Minister of State for Masvingo Provincial Affairs, Hove argues that authorities diverted donated goods to sell these in the surrounding towns of Triangle and Chiredzi leading to significant losses of aid meant for IDPs. Typical of camps, the police enforced restricted movement in and out of the camp , restricting livelihood opportunities for IDPs in employment, pastures and firewood . Towards the closure of the camp, the police and army, through the MLGPW directive, denied and limited food and water, blocked toilets and closed the school and the clinic to force the IDPs out of the camp . The camp was, therefore, a centre of wielding power and control instead of being a haven for providing much-needed protection and personal security so that IDPs could swiftly revert to normal life. Moreover, there was an increase in transactional sex in exchange for humanitarian aid controlled by male police officers. One survivor interviewed by the CCJPZ confirmed this view saying: ''… vulnerable groups such as women and children have sacrificed themselves to access the few donations. Prostitution in exchange for humanitarian aid has become common.'' Sexually transmitted diseases increased, and about 100 teenage girls between the ages of ten and twelve fell pregnant and dropped out of school . The camps, instead of being sanctuaries of safety, increased the risk of exploitation and abuse. While the clinic in the camp facilitated access to health services, the conditions at the camp exacerbated the vulnerability of the IDPs to various diseases. Sanitation coverage was inadequate and on arrival at the camp, IDPs had no access to safe drinking water. With the nearest safe water source, a borehole, 30 km away, the IDPs relied on uncovered stagnant water pools for domestic water use . The inadequate water and sanitation conditions increased diarrhoeal disease, with 60 cases recorded in the health camp facility in March 2014 alone . In total, seven fatalities occurred in the camp, compared to the six who drowned during the flood . The camp registered increased malaria and tuberculosis cases, there was no ambulance to transport the sick, and the clinic structure, a makeshift tent, was inadequate for the provision of quality care . Results from a March 2014 Ministry of Health and Child Care survey in Mwenezi district on the nutritional status of children under the age of five revealed that 2% of children in Chingwizi received a minimum acceptable diet compared to 68% of children living outside the camp . The health and nutrition situation in the camp was inconsistent with assisting the IDPs towards recovery. An estimated 800 primary and 500 secondary school pupils missed school in the early days at the camp . During the first author's visit to the camp in April of 2014, it was learned that only one teacher was available to teach all the primary and secondary pupils under one makeshift tent. Vulnerable to various weather elements such as rain and cold, pupils sat on the ground due to furniture shortages, in addition to lack of toys, books, water and sanitation facilities for the school . Some 400 pupils dropped out of school to fend either for themselves or their families , further exacerbating future opportunities. Mujere and Dombo highlight that cattle production is a significant enterprise in the Chingwizi area. Apart from their consumption, cattle are an essential facet of Zimbabwe's rural economy-used for transportation of inputs and produce, firewood and water; capital growth and storage, through herd growth; tillage; and cultural ceremonies such as paying bride prices . Despite the importance of livestock production in Chingwizi, there is no record of training the community on animal husbandry to reconnect the IDPs to their farming activities; many cattle acquired diseases , and, as noted above, there was no compensation for those who lost livestock during the flood or transportation. Tarisayi established that the IDPs lost goats, sheep and cattle during the floods, and Mutangi and Mutari noted that others died on their way to the transit camp. The MAWRR thus missed critical livestock support opportunities that could have improved the lives of the IDPs in Chingwizi. --- Unfulfilled promises Three main policy reforms were flagged for action but remain unfulfilled, related, respectively to legislative reform, compensation guidance and management of camps. In a 2014 report produced by the Directorate of Civil Protection assessing the management of the Tokwe-Mukosi disaster , a review was recommended of the Civil Protection Act of 1989, the principal law governing disaster risk reduction in the country. Mavhura notes that the Act uses 'a command-and-control model derived from a militaristic system.' Moreover, Sect. 29 to 37 of the Act establishes funding at a national level through the National Civil Protection Fund , without establishing such funding at the local level where the disasters occur. The local authorities barely receive funding from the central government before disasters occur , such that the central government only avails resources after a disaster, tightly controlling the funds needed for community disaster risk reduction. Parliament failed to amend the legislative framework several times since 2003 , despite the view by Capacity for Disaster Reduction Initiative that the proposed 2011 bill was antagonistic to the SFDRR by ignoring long-term needs. While an interviewed legal expert argued that such laws were unjust and hence unconstitutional and undemocratic, two interviewed members of parliament blamed the affected communities themselves for not challenging the injustices. Our analysis conforms with that of Cretney , namely that the promotion of neoliberal policies to boost economic growth and enforce political legitimacy undermine resilience to forced displacement related to climate-induced and other disasters. We contend that the state's resistance to amending the legislative framework, based on this desire to maintain hegemonic opportunities for control and authority, is counterproductive to social equity. Revised compensation guidelines, also recommended by the report, are yet to be developed or made public and the complex interplay of state institutions, politicians, and non-state actors regarding responsibility for forced displacements remains unaddressed. Notably, in this regard, the district council officers with whom the second author met in other parts of the country in 2019, acknowledge that political considerations were behind their reluctance to endorse the recommendations in a NGO report that called for fundamental changes in resettlement and compensation policy. Deeyah and Akujuru conceptualise compensation as fault finding, where the guilty party recompenses the victim. If state institutions adopt this same conceptualisation of compensation, then victims of disaster-induced displacement might stand to lose amidst blame shifting on responsibility to act before, during and after a disaster. For instance, in the Muzarabani and Mbire floods, survivors blamed their Rural District Council for neglecting them during the disaster and the district councillors blamed the survivors for settling in flood-prone areas . While compensation guidelines might be a lifeline for affected rural households known to live without insurance schemes , the state's reluctance to engage in developing new guidelines cannot be seen as mere oversight. Such an effort would raise the question of whose knowledge and values matter when considering what to compensate and how much it is worth. In this vein, it is telling that various interviewees in Chimanimani District in early 2020 articulated diverse views on why a private company-Econet-ultimately did not follow through with its publicly-announced commitment in 2019 to fund a resettlement housing programme for Cyclone Idai IDPs. Some narratives indicated that it was powerful national government elites who rejected the proposal fearing that the model might be ''too good.'' One critique was that political elites did not want to create a scenario where Econet might claim too much of the credit. Another narrative was that officials feared creating a precedent that housing structure programs for resettlement communities would be better than for others; yet another narrative was that ''Econet was lying and did not have a budget committed with the promises. In a more recent 2021 case, the Chilonga community in Chiredzi district, south east of Chivi district, is on the verge of being evicted from their communal lands without compensation. An interviewee from Zimbabwe Coalition on Debt and Development decried the combined business community and state collusion in oppressing rural communities, noting that the land in Chilonga was earmarked for lucerne grass production for Dendairy, a private dairy company in Zimbabwe. The grass will be irrigated using water from the Tokwe-Mukosi dam, despite Chilonga being further downstream. One interviewee from the Masvingo Centre for Research and Advocacy highlighted that MLGPW took advantage of the absence of a compensation framework to publish Statutory Instrument 50 of 2021 followed by Statutory instrument 63A of 2021 to evict at least 12, 500 indigenous Shangani households from their Chilonga communal land. The legal expert interviewee emphasised that even though the MLGPW evoked the Communal Land Act and crafted the statutory instruments, the move was unconstitutional because Sect. 74 of the constitution guarantees every Zimbabwean the right to a home-the Chilonga community were being displaced from a place they call home. In addition, the eviction lacked authorisation from a court of law and failed to consider alternative remedies before the ensuing eviction. The Chilonga case points to the dam's far reaching effects in adding to the constellation of already existing injustices. The arbitrary eviction for capitalist gains and lack of compensation without alternative land and infrastructure provision emphasize the unrelenting use of state power under the guise of disaster risk reduction. Additionally, the Chilonga case echoes the Tokwe-Mukosi displacement saga, underscoring how the failure to meaningfully apply the lessons from Tokwe-Mukosi are resulting in repetitions of resettlement injustices. Regarding encampment practices, despite the myriad of challenges observed in CTC, the central government still adopted encampment in response to the Cyclone Dineo and Idai disasters, the two significant disasters after the Tokwe-Mukosi. Similar to CTC, in Tsholotsho, during Cyclone Dineo, IDPs experienced inadequate food security, water and sanitation, slept communally due to shortage of tents in the camp which deprived the IDPs of privacy and increased the risk of communicable diseases . Significantly, 953 of Cyclone Idai IDPs in Chimanimani are encamped and experiencing these similar challenges, almost 17 months after the disaster . Given the drawbacks of large encamped vulnerable populations and the ongoing COVID-19 pandemic , the camp setup is widely seen as a health timebomb. However, since camps are spaces for consolidation of power through securitisation and resource control , other alternatives can be a threat to the established power in camps. The choice by 97% of the Cyclone Idai IDPs to stay with the host community consisting of relatives and friends , highlights a form of resistance to widespread control and underlying injustices in camp setups. Indeed, the second author of this study found multiple people affected by Cyclone Idai, in Chimanimani, who referenced the Tokwe-Mukosi saga when discussing their own fears of being ''forgotten'' and ''ignored'' if they just waited in tents in camps. That camps are also places where neoliberal corporate and economic elites manipulate shocked populations was not lost on the Chimanimani flood survivors. Our observation concurs with that of Bhagat who also notes that protracted encampment supports neoliberal tendencies through increased authoritarian surveillance and institution-led survival strategies of self-reliance such as microfinance and entrepreneurship. While some literature frames IDPs as passive victims , the challenge to encampment in Chimanimani illustrates resistance to power inequalities tied to superficial efforts of poverty alleviation and a potential opportunity for alternatives to encampment. Unfortunately, the host communities in Chimanimani now bear the burden of food and shelter provision for the IDPs without external support. Many of the NGOs that were ready to provide resettlement support in the year and half after Cyclone Idai were constricted in their efforts, at times because they were told that Econet was going to do it , resulting in opportunities lost. Similarly, IDPs in Tsholotsho returned to unrepaired dilapidated homes devoid of food and other welfare needs , while those in Chingwizi settled on bare ground without assistance. This practice is, however, consistent with neoliberal norms and values of dismantling state welfare for IDPs , demonstrating an unrestrained application of power against the values of disaster risk reduction. --- Conclusion The pre-and post-flood induced resettlement processes in the Tokwe-Mukosi disaster illustrated how state power shaped the form of community vulnerability during forced resettlement processes. Our research draws attention to how broader systems of injustices increase vulnerability, with Zimbabwe's case study showing how capitalist motives and values impoverished its powerless subjects rather than building their resilience. As Newman argues, the state can act as a tool to perpetuate capitalism as well as a locus of power to protect its interests. Here the Zimbabwean state, through its institutions , used the disaster to promote a new vision of security in an uncertain future , while expanding capitalist accumulation processes at the expense of communities in need of its protection. By mapping the Tokwe-Mukosi pre-and post-flood period, we illustrated the complexity of resettlement processes, showing how the flood disaster catalysed and threw the planned processes into disarray when unanticipated torrential rainfall unexpectedly filled the dam. IDPs' vulnerability increased throughout the resettlement processes, with the MLGPW, MFED, ZRP and ZNA using their power to create losses in land sizes, compensation, social networks, livelihood opportunities, social infrastructure, cultural and religious sites, place-based knowledge, and individuallevel losses and reducing the ability of the IDPs to restore their livelihoods in what, for them would be fair, equitable and inclusive ways. Regarding how state power contributes to the vulnerability of the Tokwe-Mukosi communities' forced resettlement, our findings revealed multifaceted state power relationships during forced resettlement processes. First, the central government conceived the dam project and unilaterally decided how the displaced communities would return to normal functioning by dictating where the IDPs would resettle, the livelihood opportunities on which they would embark, and the resettlement pattern, which affected the IDPs' connection to livelihoods, people and the new place. During the flood disaster, the state decided the resettlement trajectory of the IDPs, which began by MLGPW randomly resettling them in the CTC, tearing connections between people. In the camp, the state controlled access to food, water, sanitation, shelter, health and education needs for the IDPs. Instead of meeting the physical security needs of the community, the courts convicted camp committee leaders while the MLGPW, police and army ended up violently evicting the IDPs from the camp without compensation, thereby affecting the IDPs' ability to revert to normal life. Shaping the level of vulnerability reduction by controlling IDPs' connections to place, people and livelihoods, state institution actions promoted conditions that reproduced and increased poverty. Ignoring the main lessons that could have been acted upon in the aftermath of the Tokwe-Mukosi resettlement process, the parliament, first, failed to review the militarised Civil Protection Act, which we interpret as a way of maintaining grip on a status quo that provides hegemonic opportunities for control and authority. Second, the central government is yet to craft the guidelines for compensating IDPs, raising questions about whose knowledge and values are being used to decide what to compensate and to what value. Third, the central government is yet to review its encampment practices, which may be maintained to retain neoliberal norms and values of authoritarian surveillance and consolidation of power. Ultimately, the resettlement processes point to the critical need for theorising varied displacement types and experiences, linking protracted struggles with power dynamics that span multiple scales. --- --- Consent to participate The authors asked participants for verbal consent before involving them in this research. The authors also informed participants of their right to withdraw during any part of the interviews.
Forced displacement and resettlement is a pervasive challenge being contemplated across the social sciences. Scholarly literature, however, often fails to engage complexities of power in understanding socio-environmental interactions in resettlement processes. Addressing Zimbabwe's Tokwe-Mukosi flood disaster resettlement, we explore hegemonic uses of state power during the pre-and post-flood induced resettlement processes. We examine how state power exercised through local government, financial, and security institutions impacts community vulnerabilities during forced resettlement processes, while furthering capitalist agendas, drawing insights from analysing narratives between 2010 and 2021. Concerns abound that multiple ministries, the police, and the army undermined displaced people's resilience, including through inadequate compensation, with state institutions neglecting displaced communities during encampment by inadequately meeting physical security, health, educational, and livestock production needs. We explore how forcibly resettling encamped households to a disputed location is not only an ongoing perceived injustice regionally but also a continuing reference point in resettlement discussions countrywide, reflecting concerns that land use and economic reconfigurations in resettlement can undermine subsistence livelihoods while privileging certain values and interests over others. Policy lessons highlight the need for reviewing disaster management legislation, developing compensation guidelines and reviewing encampment practices. Analytically, lessons point to how state power may be studied in relation to perspectives on the destruction of flood survivors' connections to place, people and livelihoods, underscoring the critical need for theorising the relationships between power dynamics and diverse experiences around displacement.
Soon after securing their independence from Spain during the first quarter of the nineteenth century, most Hispanic American republics, after promulgating new constitutions, turned to drafting new civil codes and these included inheritance norms. In 1836, in his draft code for Peru, jurist Manuel Lorenzo de Vidaurre broke with colonial legal tradition in the case the deceased did not leave a will proposing that in the order of succession the widow or widower be placed ahead of all collateral relatives. Under colonial law, spouses inherited each other's estate only if there were no blood relatives up to the 10th degree of kinship. Vidaurre justified this improvement in the spouse's position by reasoning that "marriage generates an affection that is even greater than towards one's children." 1 Nonetheless, in his draft code he still privileged the deceased's children or, if there were none, the parents, over the surviving spouse. His comments suggest that he would have liked to place the spouse on at least the same footing as children, but in the 1830s this may have been too radical a break with tradition; by the 1860s, in a few countries, it was not. In this article, I analyze the intestate provisions of the new nineteenth civil codes to determine the extent to which spousal inheritance rights improved after independence compared to colonial norms, and how the circulation of ideas-both between Europe and the Americas and within Hispanic America -influenced such improvements. I find that spouses came to be favored over the extended family in the order of succession in all but one of the sixteen newly independent countries. Two countries, Venezuela and Argentina, went even further in their initial codes by giving spouses an unconditional share of the deceased's estate equal to that of a child, taking the sentiment expressed by Peruvian jurist Vidaurre to its logical conclusion. I argue that these changes in the ordering of intestate took place in concert with the rise of the centrality of the conjugal unit as the focus of an individual's primary affection, loyalty, and responsibilities. Scholarship on Western Europe and the United States has established that significant improvements in the intestate position of spouses did not take place until after profound changes had already occurred in marriage, the family, and the economy. 2 The switch in loyalties and obligations from the extended to the nuclear family is generally associated with a combination of factors: the ideas of the Enlightenment and its emphasis on individual rights; industrialization, urbanization, and the loss of economic importance of the extended family; and the rise of romantic love and individual choice, rather than strategic interests, as the basis for marriage. 3 It may seem surprising that the improvement in the intestate position of spouses occurred earlier in Hispanic America than in Western Europe. In the latter, this betterment began with the civil code reforms adopted in Italy in 1865, Spain in 1889, and Germany in 1899, and became more generalized in the first quarter of the twentieth century. 4 In Hispanic America, this improvement began in the 1830s and deepened in the Venezuelan and Argentinian codes of the 1860s when spouses were given an unconditional share in the 1st order of succession. This elevation in the position of spouses occurred in Hispanic America prior to major structural changes in the economy, but in a context in which notions about individual freedom, marriage, and familial obligations were changing rapidly in tandem with the spread of liberal ideas and policies. The pursuit of individual freedom, for instance, tipped the balance in marital partner choice from parents toward children, as romantic love became more important as a motivation for marriage than strategic family alliances. The adoption of free trade policies and the development of land, labor, and capital markets precipitated a decline in the practice of dowry, changes in the relative importance of inheritance versus individual effort in the accumulation of wealth, and a loss in the economic importance of the extended family as a unit of production, among other consequences. The pace of change, however, differed across the region, as did the factors motivating specific improvements in the intestate position of spouses. While there is an ample literature focusing on the comparative study of the Latin American civil codes and those of Europe and elsewhere, 5 less attention has been paid to inheritance or succession law, and especially its intestate provisions. 6 Argentine legal scholar Victor Tau Anzoátegui was likely the first to emphasize how the intestate position of spouses improved considerably in the nineteenth century although his comparative focus is limited to the Southern Cone. 7 Jan Peter Schmidt provides a critical, in-depth comparative analysis of intestate law in Latin America in the twentieth century, drawing attention to how these improvements in the position of spouses took place earlier than in Europe. 8 His brief analysis of nineteenth century trends, nonetheless, gives far too much credit to codifier Andrés Bello for enhancing their position in his 1855 civil code for Chile. While Bello's code was undoubtedly the most influential of the Hispanic American codes on codification efforts in other countries of the region, I show that its intestate provisions were in fact among the least, not the most, favorable to the surviving spouse. I contribute to the history of law by providing a detailed comparative analysis of the intestate provisions of the sixteen nineteenth-century Hispanic American civil codes, going beyond the scope of Tau's and Schmidt's analyses. My most original finding is that two different approaches developed with respect to the inclusion of the spouse in the 1st order of intestate: in the most favorable, the spouse was entitled to an unconditional share, alongside the children for a country-by-country summary of analyses of the influence of European codes on these new civil codes. 6 For comparative analyses of nineteenth-century succession law, see Michael C. Mirow, Latin American Law: A History of Private Law and Institutions in Spanish America , ch. 17, and Alejandro Guzmán Brito, "La pervivencia de instituciones sucesorias castellano-indianas en las codificaciones hispanoamericanas del siglo XIX," in Derecho, instituciones y procesos históricos, eds. José de la Puente Brunke and Jorge Armando Guevara Gil, vol. 3 , 31-88. Both focus almost exclusively on the rules governing wills. 7 Victor Tau Anzoátegui, Esquema histórico del derecho sucesorio del medievo castellano al siglo XIX . 8 Jan Peter Schmidt, "Intestate Succession in Latin America," in Comparative Succession Law, eds. Kenneth Reid, Marius J. de Waal, and Reinhard Zimmermann, vol. 2 , 119-59. Argentina); in the least favorable, the possibility of their inheriting depended upon their relative poverty or need . This finding conforms to the commonly held view of Venezuela and Argentina as the new republics most influenced by liberalism. 9 I contribute to the history of thought by showing how the ideas on intestate held by liberal legal scholars such as English utilitarian Jeremy Bentham and Spanish jurist Florencio García Goyena were received in the region. Bentham was widely read by revolutionary leaders in the Americas, and his ideas provoked the earliest debate over the order of intestate succession, leading to the first specific legislation on the matter. 10 García Goyena was the primary author of the 1851 draft civil code for Spain and the first codifier to propose giving spouses an unconditional inheritance share in the 1st order. 11 I argue that he had the most influence in Venezuela and Argentina because social sensibilities in these countries had changed sufficiently by the 1860s so it could be assumed that an individual's primary loyalty was to their spouse and children. Moreover, the decline of the practice of dowry and the adoption of the Victorian ideal of the wife as the "queen of home," required new social provisions for widows. My analysis thus contributes to the history of the family and of gender relations by focusing on an area of family law that has not received sufficient scholarly attention. Besides the civil codes and other relevant legislation and the commentary provided by their authors, the other primary materials upon which I draw for this analysis include the draft codes of these influential codifiers, the commentary of the commissions often set up to review these drafts, and the treatises of other nineteenth-century legal scholars. 12 For information on marriage and the family, I rely on secondary sources, which for this period are uneven across countries. The analysis focuses only on the provisions governing intestate because, as these countries became more secularized, the writing of wills became less important than in the colonial period. 13 Also, the rules of intestate tended 9 David Bushnell and Neill Macaulay, The Emergence of Latin America in the Nineteenth Century ; Tulio Halperin Donghi, "Argentina: Liberalism in a Country Born Liberal," in Guiding the Invisible Hand. Economic Liberalism and the State in Latin American History, eds. Joseph L. Love and Nils Jacobsen , 99-116; Reuben Zahler, Ambitious Rebels. Remaking Honor, Law and Liberalism in Venezuela, 1780-1850 , 22-40. 10 Bentham's student, Etienne Dumont, synthesized his writings as The Principles of Morals and Legislation and translated and published this collection in Paris in 1802; a Spanish translation of this French tome was published in Madrid in 1822. Bentham's work also reached Latin America through the monthly periodical, El Español, published between 1810 and 1814, which was funded by the British Foreign Office. Moreover, Bentham corresponded with many of the independence leaders. See Pedro Schwartz, "La correspondencia ibérica de Jeremy Bentham," in Bello y Londres. Segundo Congreso del Bicentenario, eds. Fundación La Casa de Bello and Comisión Nacional para la Celebración del Bicentenario , 225-64. 11 Florencio García Goyena, Concordancias, motivos y comentarios del Código Civil Español , 188-90. 12 The records on congressional debates, when available, were less useful. The congress often ceded responsibility to the executive branch for commissioning, reviewing, and promulgating these codes, usually approving the civil code without much discussion of its content. 13 Tau Anzoátegui, Esquema histórico, 116. --- 622 Carmen Diana Deere to be less controversial than the issue of testamentary freedom, the ability of an individual to freely bequest their full estate. 14 Moreover, intestate rules potentially affected all individuals irrespective of class, gender, or race since, in the absence of a will, these determined the disposition of a deceased person's property no matter how meager. These rules were thus quite relevant to the large segment of the population who were artisans or peasant landowners. Nonetheless, throughout the nineteenth century an important share of the adult population did not marry and lived in consensual unions, with a sizable proportion of children being illegitimate. 15 The debate over whether recognized natural children 16 should have automatic inheritance rights was intertwined with that over how much to improve the position of spouses; due to space limitations, this aspect is not developed in detail. The next two sections set the stage by considering the position of spouses in intestate under colonial norms, followed by a discussion of the main models and thinking on intestate emerging in Europe in the first half of the nineteenth century that influenced codifiers in Hispanic America. The subsequent section presents an overview of when the initial civil codes were adopted in the region and of their intestate provisions for spouses. This is followed by a deeper analysis of how surviving spouses came to be positioned so favorably in Argentina and Venezuela, and of why these codes differed in their approach. I conclude by summarizing the findings and suggesting topics that merit further research. --- The Colonial Legacy on Widowhood Colonial Hispanic America was governed by the legal norms of Castille, the region of Spain that had the least generous inheritance norms with respect to spouses. 17 According to the thirteenth-century legal code, the Siete Partidas, if the deceased had not made out a will, the deceased's children inherited the estate. 18 In their absence, 14 Under colonial law, the share of an estate that an individual could bequest to whomever they chose was one-fifth; four-fifths was restricted to the forced heirs . On the debate over increasing this "free" share or doing away with such restrictions, see Guzmán Brito, "La pervivencia de instituciones"; Silvia Arrom, "Changes in Mexican Family Law in the Nineteenth Century: The Civil Codes of 1870 and 1884," Journal of Family History 10, no. 3 : 305-17; and Carmen Diana Deere and Magdalena León, "Liberalism and Married Women's Property Rights in Nineteenth Century Latin America," Hispanic American Historical Review 85, no. 4 : 627-78. 15 Elizabeth Kuznesof and Robert Oppenheimer, "The Family and Society in Nineteenth-century Latin America: An Historiographical Introduction," Journal of Family History 10, no. 3 : 215-34. 16 Natural children are those born of unmarried parents who under the rules of the Catholic church faced no impediments to marry. 17 García Goyena, Concordancias, Appendix 10, and Tau Anzoátegui, Esquema histórico. 18 Sixth Partida, Title 13, Law 6, in Gregorio López, Las Siete Partidas del Rey Don Alfonso El Sabio cotejadas con varios códices antiguos por la Real Academia de la Historia y Glosadas por el Lic. Gregorio López . This section also draws on Joaquin Escriche, trans. Bethel Coopwood, Elements of the Spanish Law, 3rd ed. , and José María Ots y Capdequí, "Bosquejo histórico de los derechos de la mujer en la legislación de Indias," Revista General de Legislación y Jurisprudencia 138 : 161-82. in the 2nd order, parents inherited . Siblings were in the 3rd order, aunts and uncles in the 4th order, and so on. Since the surviving spouse did not inherit the deceased's estate unless there were no living blood relatives up to the 10th degree of kinship, it was extremely unlikely that spouses inherited from each other. Weak inheritance rights for spouses did not mean that widows were unprotected. If a woman married without a dowry and was poor, she could claim what was known as the cuarta viudal. 19 This special inheritance provision entitled them to up to one-quarter of their husband's estate up to a maximum of 100 pounds of gold, whether he had died intestate or left a will excluding her. The dowry that parents of means were required to provide a daughter also served a two-fold purpose: it was a contribution by her family to the expenses of the new household and was designed to support her in case of widowhood. Although the husband managed the dowry, it was the wife's property and reverted to her control once widowed. From the parents' perspective, the dowry was an advance on a daughter's inheritance; in addition, by law, sons and daughters inherited equally. 20 Women also had relatively strong property rights in marriage. Under the colonial marital regime of partial community property , a person's individual property consisted of what they owned prior to or brought to marriage and what they later inherited. The community property of the couple, known as the gananciales, consisted of the value of the gains on such assets plus any assets purchased during the marriage irrespective of the source of income. Upon dissolution of the marriage due to death or permanent separation , the gananciales were divided equally between them. 21 The widow or widower thus automatically received one-half, while the estate of the deceased consisted of their half of the gananciales plus their individual property. Legal practice in the Spanish colonies generally conformed to these norms. 22 If gananciales resulted from the marriage, it would be difficult for a woman to prove that she was poor to claim the cuarta viudal, even if she married without a dowry. This is among the reasons why legal scholars in both Spain and Hispanic America observed that the cuarta viudal was rarely practiced. 23 In contrast, there is compelling evidence that during the colonial period the practice of dowry was widespread. Nonetheless, its practice began to decline in the late-eighteenth century in Mexico, 24 and it virtually disappeared in countries as diverse as Argentina, Peru, and Costa Rica over the course of the nineteenth century. 25 The decline of the dowry is largely attributed to the expansion of the market economy and its resulting investment opportunities, and the increasing reluctance of parents to part with much needed capital by giving daughters this advance on their inheritance. Thus, among the reasons that nineteenthcentury codifiers may have improved the position of widows in intestate was to compensate for the demise of the dowry. 26 At the same time, its disappearance led to less parental control over the marriage of children which fostered individual choice of a partner. 27 Near the end of the colonial period there was a change in intestate succession law in Spain that likely was not implemented uniformly in the American colonies, if at all. 28 A law in the Novísima Recopilación of 1805 reversed course from the Siete Partidas by limiting the range of collateral heirs who could inherit to the 4th degree; if there were no heirs in this range, the estate passed to the Royal Treasury. 29 Surviving spouses were not mentioned in this law, so presumably the only way a widow might then inherit would be by claiming the cuarta viudal. 30 While this law, coming so close to the struggles for independence, may not have influenced the practice of intestate in Hispanic America, it contributed to a rethinking of the position of the spouse in the line of succession. --- European Ideas on Intestate in the First Half of the Nineteenth Century The codification commissions appointed to develop new civil codes after independence in Hispanic America usually turned to the Napoleonic Code of 1804 in France and, later, the 1851 draft civil code for Spain as models of modern civil codes. 31 These jurists also studied Jeremy Bentham's work on the ideal civil code based on utilitarian principles and John Stuart Mill's ideas on testamentary freedom and followed the debates over codification in Europe. 32 In his general law of succession, Bentham reasoned that inheritance rules must accomplish three objectives: provide for the subsistence of future generations; prevent the pain of disappointment ; and promote the equalization of fortunes. 33 He proposed that the main principle guiding the order of intestate succession should be the presumed degree of affection, and that such could be inferred from the proximity of the kinship relationship to the deceased. Invoking the principle of utility, Bentham prioritized the objective of providing for the needs of future generations. He thus proposed that, without distinction by age or sex, the 1st order of intestate include only the descending line; the 2nd order, the parents; and the 3rd order, siblings and their descendants, after which the estate would pass to the state. He excluded spouses from the order of intestate succession altogether, since in the community property marital regime that he also championed, the surviving spouse received half, with the deceased's half to be distributed among the heirs. John Stuart Mill's main contribution to succession law was the defense of testamentary freedom, which became the emblematic liberal principle. 34 He viewed the right to bequeath one's assets to whomever one chose as intrinsic to the right to private property. On intestate, he concurred with Bentham that the law must presume what the average deceased person would have wanted, given affection and obligations. Mill favored ending the line of succession at the 2nd order, excluding all collaterals. 35 Like Bentham, he was not concerned with the inheritance rights of spouses, also assuming that they were taken care of through the community property marital regime. The appeal of the two European codes that had the most influence on nineteenth-century codifiers, the French code of 1804 and Florencio García Goyena's 1851 draft civil code for Spain, was that they stated legal rules succinctly and systematically and, given their common roots in Roman law, shared many features with the Hispanic colonial legal tradition. 36 With respect to intestate succession, however, the position of the surviving spouse in the Napoleonic code was even more unfavorable than the Hispanic colonial 32 On legal education, the use of Bentham in law school curriculums after independence and the controversies over his work, see Mirow --- 626 Carmen Diana Deere norm. Spouses inherited the deceased's estate only in the absence of legitimate descendants, ascendants, and collateral relatives to the 12th degree and if there were no recognized natural children. 37 Thus, for those looking to improve the intestate position of spouses, the Napoleonic code did not serve as a model. Spanish Supreme Court judge Florencio García Goyena, the chair of its civil code commission, was the principal author of its 1851 draft code and the subsequent glossed edition, Concordancias, motivos y comentarios del Código Civil Español, which circulated widely in Latin America. 38 With respect to intestate succession, García Goyena's influence may not have been so much in terms of the specific rules proposed for Spain, but rather, because his treatise considered alternative treatments of the position of the surviving spouse. He showed the broad variation which existed in the inheritance rights of widows in different regions of Spain 39 as well as in other countries, which encouraged Hispanic American codifiers to improve their position with respect to the restrictive norms inherited from Castille. García Goyena's intestate proposal reflected modern assumptions about marriage and the position of spouses-that most marriages were based on love and affection and that a person who died intestate would have wanted to care for their spouse before distant kin. In his words: "The legislator should and must assume compassionately in favor of the widow or the widower, that they lived and loved each other as good spouses, and that the deceased would have provided for the surviving spouse had they left a testament." 40 According to García Goyena, when the drafting commission began its work in 1841, there was already consensus on three principles related to the position of spouses: widows and widowers should be treated equally; they should not have to prove poverty to inherit; and their position should be improved over that in Castilian law. The commission considered it "shameful" that under the Siete Partidas a widow must prove poverty before a judge to inherit; moreover, for this reason, the cuarta viudal was not utilized frequently. 41 Further, as the commission's work evolved, it concluded that, 37 Barrister of the Inner Temple, Code Napoleon or the French Civil Code, of 1804 , arts. 745-68. France did not improve the position of spouses until 1891, when they were given a usufruct right to one-quarter of the deceased's estate. Nicolas Boring, "France," in Inheritance Laws in the Nineteenth and Twentieth Centuries, ed. Law Library , 1-5. 38 Guzmán Brito, La codificación civil, 283-92; Luis Rodríguez Ennes, "Florencio García Goyena y la codificación iberoamericana," Anuario de Historia del Derecho Español, 87 : 703-26. 39 For example, under the twelfth century Fuero Juzgo, the widow was in a better position than under the inheritance law which later evolved in Castile, since she was entitled to a usufruct share equal to that of a child if she did not remarry. Moreover, she stood to inherit her husband's full estate in the absence of descendants, ascendants, or collaterals to the 7th degree. Under the fueros of Navarra and Aragón she received far superior treatment, being entitled to the usufruct of all her deceased husband's assets. García Goyena considered it an error, nonetheless, to separate the usufruct and property of assets since it restricted the circulation of property. He was also concerned about children having to wait until a widow's death for them to inherit since this delayed their being able to establish themselves; García Goyena, Concordancias, 359-61. 40 Ibid., 189. 41 Ibid., 360. It was politic and humane to interpret the intention of the deceased in favor of the partner in that lifetime bond which cannot be dissolved. This presumption is politic since it enhances the honor and sanctity of marriage. It is humane because it prevents the widower or widow from abruptly passing from a state of well-being to misery. It is also rational, because it would be hard to imagine that the deceased would have wanted their assets to pass to other hands, leaving the person in indigency with whom they had formed one flesh and shared joys and comforts. 42 The innovation in the 1851 draft code was thus to include surviving spouses in the 1st order of intestate, giving them a share irrespective of whether they were poor or wealthy, and for the spouse to hold full property rights over this share. The shares assigned to the spouse, nonetheless, reflected a compromise on the commission. If there were legitimate children from the marriage, the spouse automatically received one-fifth of the estate. In the absence of descendants, the estate was divided between the deceased's ascendants and the spouse, with the latter's share being one-fourth. In the absence of both these categories, the estate fell to natural children, collateral relatives to the 10th degree, and/or the surviving spouse, with the latter in all cases receiving a one-third share. These inheritance rights depended on the surviving spouse not being the guilty party to a permanent separation . 43 García Goyena had wanted to be even more generous to the surviving spouse, reasoning that the spouse's share would eventually pass to the children. He had proposed assigning them one-third of the estate if they inherited along with ascendants or one-half of the estate if shared only with siblings and lobbied for spouses to be given preference over recognized natural children. 44 He did not mention why he lost these debates but rather stressed how the compromise reached was more generous to spouses than the codes of other countries. 45 By giving spouses an unconditional share in the 1st order, alongside the children, the draft code ensured that under the most common scenario widows and widowers inherited from the deceased's estate. García Goyena's draft code was never adopted in Spain; among the reasons, was that it was considered too liberal, since it included civil marriage which was strongly opposed by the Catholic church. 46 Although almost two-thirds of its articles were incorporated into the 1888 Spanish code, the version adopted was much less generous to spouses than García Goyena's intestate proposal. 47 42 Ibid. 43 Ibid., 188-90. 44 Ibid., 374. 45 Ibid., 372-73. 46 Ennes, "Florencio García Goyena." 47 In the 1888 Spanish code, in intestate the surviving spouse only inherited if there were no legitimate or natural children or ascendants, and they shared the estate with the deceased's siblings, being entitled to one-half, but only in usufruct; in the absence of siblings, the spouse received the property rights to the full estate. Spain, Código Civil , arts. 946-53. --- 628 Carmen Diana Deere The historic role of this draft code, as I will show, was in its indirect influence on improving the intestate position of spouses in much of Hispanic America. --- Intestate Succession in the Republican Civil Codes The chronology of when the sixteen newly independent countries of Hispanic America enacted their first civil code and/or specialized legislation governing succession is presented in the Appendix, which allows comparison along four dimensions: whether the spouse was included in the 1st order of intestate, along with the legitimate children; if so, if there were conditions attached; the order in which the spouse stood to inherit the full estate; and how far down the line of succession extended among collateral relatives before the estate passed to the state. Each column of the table provides different information about the position of spouses relative to the conjugal and extended family: the second and third columns, on whether love and affection for the spouse was considered equal to that for children; the fourth, on loyalties to the conjugal versus extended family; and the fifth, on the range of those perceived loyalties to kin. --- The spouse versus the extended family Consider first the position of the spouse relative to extended kin . Every country except for the Dominican Republic improved the position of surviving spouses over the colonial norm as to when they could inherit the deceased's full estate. In 1845 the Dominican Republic adopted the Napoleonic code as its own, including its unfavorable rules for spouses in intestate succession. 48 The very first code promulgated after independence, the Santa Cruz code of 1830 in Bolivia, was modeled on the Napoleonic code, but it departed from it on the rules of intestate: the spouse inherited the deceased's full estate in the absence of legitimate or natural descendants and ascendants or collaterals to the 4th degree. 49 By reducing the range of collateral relatives who could inherit from the 10th to the 4th degree, the Santa Cruz code may have taken the Novíssima Recopilación of 1805 as precedent. What was novel in the Bolivian code was its explicit provision, in the absence of heirs to the 4th degree, for spouses to inherit each other's full estate prior to the state-recall that the Novíssima Recopilación made no mention of the surviving spouse-and its timing. This improvement took place before the Spanish Cortés in 1835 adopted a similar provision for spouses. 50 Dissatisfaction with the colonial legacy on the position of the spouse in intestate is further shown by Uruguay's 1837 Law on Succession and in Vidaurre's 1836 draft civil code for Peru. Uruguay's law placed the surviving spouse ahead of all collateral relatives, including siblings. 51 Similarly, in Peru, Supreme Court justice Vidaurre proposed that in the absence of legitimate children or ascendants, the surviving spouse inherit prior to any collaterals. 52 Nonetheless, he gave spouses only usufruct rights over this inheritance, so that upon their death, these assets passed to the collateral heirs, beginning with the deceased's siblings or their issue. Discussion of Vidaurre's draft code was cut short by the Bolivian invasion of Peru in 1836, and the brief adoption by Northern and Southern Peru of the Santa Cruz code. In its final 1851 civil code, Peru ended up following the Bolivian precedent of ceding the surviving spouse the full estate in the absence of collaterals to the 4th degree. Costa Rica in 1841 adopted as its first civil code the 1836 Northern Peruvian code almost entirely. 53 The only notable departure with respect to spouses was that rather than inheriting the full estate in the absence of collaterals to the 4th degree, as in the Santa Cruz code, 54 in Costa Rica the spouse was only entitled to one-third, with two-thirds going to the state, presumably, due to fiscal concerns. No other code in the region was to be as stingy to the surviving spouse, making them share the deceased's estate with the state. The innovative legislation adopted to this point positioned the spouse either ahead of all collateral relatives or after collateral relatives to the 4th degree . Andrés Bello, the Venezuelanborn author of Chile's 1855 code, drew the line after siblings on when spouses stood to inherit the full estate. All the countries whose first codes were adaptations of the Chilean code adopted this same provision 55 : El Salvador in 1859, Ecuador in 1860, Nicaragua in 1867, Uruguay in 1868, 56 55 See Guzmán Brito, La codificación civil, on the circumstances that led each of these countries to take Bello's code as its model, facilitated by the Chilean Foreign Ministry having distributed copies through its embassies. In Ecuador, for example, after many failed attempts, the legislature in 1855 charged the Supreme Court with drafting the civil code. They had already completed over 800 articles when they decided that the Bello code, which they had just accessed, was far superior in structure and content to their own effort and recommended that Ecuador adopt it with minor modifications . In his tome, Guzmán Brito does not discuss the provisions on succession norms. That the listed codes copied the Chilean code with respect to intestate is based on my analysis of the respective articles listed in the references in the Appendix. 56 Note that Uruguay's 1868 code reversed its earlier legislation which had treated spouses more favorably in the line of succession than Bello's code, suggesting that there was not yet total consensus on these issues. 57 Several of these codes differed from Bello's code on other aspects, for example, in the absence of a spouse, on how far down the line of succession extended before the estate passed to the state, 630 Carmen Diana Deere Law of Succession, which was part of the package of liberal reforms known as La Reforma, along with its 1870 code, also placed the surviving spouse after siblings in the line of succession, as did Venezuela's 1862 code. Venezuela's 1867 and Argentina's 1869 civil codes swung the balance in a more favorable direction than the Bello code, since spouses were placed ahead of siblings in the line of succession, inheriting the full estate in the absence of descendants or ascendants. This precedent was followed by Paraguay in 1876, which adopted the Argentine code as its own; Guatemala in its 1877 code ; the Costa Rican Law of Succession of 1881 ; Bolivia in its 1882 reform law; and by El Salvador in its reformed 1902 code. The elevation of the position of the surviving spouse in intestate in the reforms of Guatemala, Costa Rica, and El Salvador all took place during their late-nineteenth-century liberal revolutions, the period when they also instituted testamentary freedom, the ultimate liberal principle. 58 Nonetheless, not all the countries adopting testamentary freedom at this time changed their intestate provisions. Honduras, Mexico, and Nicaragua, in their respective reforms of 1880, 1884, and 1903 which instituted testamentary freedom, maintained siblings ahead of spouses in the order of intestate succession, attesting to the weight of tradition and the non-linear pattern of these reforms. --- The spouse versus children Since most couples have children, what matters most in practice is whether the surviving spouse is included in the 1st order of intestate succession, alongside the descendants . Two patterns emerged over the nineteenth century: countries which followed or improved upon the colonial tradition whereby the possibility of spouses inheriting depended upon their relative poverty or need; and those that gave spouses an unconditional right to inherit along with descendants. In the former group are the first codes of Bolivia, Costa Rica, and Peru; the Bello code of Chile and countries which adapted it; and the Mexican legislation of 1857 and 1870. In the latter group, are all except one of Venezuela's nineteenth-century codes along with Argentina's 1869 civil code and those adopted by some of the later reformers. The 1830 Santa Cruz and 1841 Costa Rican codes maintained the cuarta viudal, the provision of the Siete Partidas for poor widows. For example, the Santa Cruz code established that "if she did not have her own assets, and her husband did not leave her with the means to live well and honestly, she will inherit onefourth of his inheritance, even when in intestate he has left legitimate descendants." 59 The Peruvian civil code of 1851 innovated by treating poor widows with this ranging from Chile's 6th degree to the colonial tenth in Ecuador and Uruguay . 58 See Deere and León, "Liberalism," 661-73, on the package of reforms of family law undertaken by Mexico and the Central American countries in this period. 59 Zamorano, Código civil boliviano, art. 620. Guzmán Brito, "La pervivencia," 74-75, errs in his interpretation of the cuarta marital-that it disappeared-in the original 1830 Bolivian code likely by using an edition of the civil code published after and widowers similarly, although not equally. Additional conditions, besides poverty, were required for widowers to receive what was termed the cuarta conyugal: "…in addition to lacking what is necessary to live, he must be an invalid or habitually sick, or over 60 years of age." 60 If there were legitimate children, several additional criteria determined whether the spouse received the maximum share of one-quarter of the estate: the amount could not be greater than what each child received, and the spouse's share was capped at 8000 pesos. Moreover, if there were gananciales from the marriage, this sum was deducted so that spouse received only the difference between this amount and the 8000 pesos or each child's share. 61 The Peruvian code was also the first Republican code that, in the absence of legitimate children, included the surviving spouse in the 2nd order of succession, along with the ascendants. In this position, there were no restrictions; the spouse no longer had to plead relative poverty and, moreover, received a onequarter share of the estate irrespective of whether there were gananciales from the marriage. Further, they received this share even if they could support themselves through their labor or later acquired assets, but they lost this right if they engaged in scandalous behavior. In the 1855 Chilean code, Bello explicitly expanded the Hispanic colonial norm of gender equality in inheritance beyond descendants, with neither sex nor primogeniture to be considered in any order of intestate succession. 62 It thus differed from Peru's 1851 code by treating widows and widowers equally in all orders of succession. Moreover, rather than requiring the spouse to plead poverty, Bello's porción conyugal was conditioned on their relative need, defined as "what is necessary for their appropriate support." 63 In the 1st order, if surviving spouses had no assets of their own, they received a share equal to that of one child. But if they owned assets or were due gananciales, these values were deducted from that share. Since any assets belonging to the surviving spouse were deducted, it was more restrictive than the Peruvian code which was only concerned with the gananciales. The spouse, nonetheless, had the 1882. In 1882 Bolivia adopted Argentina's 1869 intestate rules; in the civil code commentaries published after that date, art. 513 stipulates the content that he cites . Previously, as Rafael Canedo, Código civil boliviano, comentado, concordado y anotado, 2nd ed. , 242, confirms, the 1830 code maintained the cuarta marital in its art. 620. Guzmán Brito does not mention which edition he used. 60 Manuel Afanacio Fuentes and Miguel Antonio de la Lama, Código Civil de 1852, arts. 918, 926. 61 Guatemala's 1877 code adopted Peru's formulation of the cuarta conyugal, however, it was more generous since it did not cap the amount that the spouse could receive, nor did it require that gananciales be deducted from the spouse's share. 62 Chile, Código civil, art. 982. This was also a principle of the French civil code and one recommended by Bentham, with whose works Bello was familiar, having worked on his papers during his time in London; Schwartz, "La correspondencia." 63 Chile, Código civil, art. 1172. Bello developed this concept in his first draft of 1841 and maintained it in subsequent drafts, up through approval of the 1855 code. Andrés Bello, "De la sucesión por causa de muerte," of 1841-1842, in Obras Completas, ed. Consejo de Instrucción Pública, vol. 11a , 96-99. --- 632 Carmen Diana Deere option of renouncing their share of the gananciales if this proved to be in their interest. 64 The Chilean code, as the Peruvian, included the spouse in the 2nd order of succession; in the absence of legitimate children, the inheritance was divided in five shares, with three-fifths going to the ascendants and one-fifth each to the natural children and the spouse. The rules were ambiguous regarding whether in the 2nd order, the spouse received one-fifth of the estate irrespective of need, or if need could be proved, up to one-quarter of the estate as the porción conyugal, but this is what is implied. Also, any spousal inheritance depended on the spouse not being the guilty party to a permanent separation. The initial codes of El Salvador, Ecuador, Nicaragua, Uruguay, Colombia, and Honduras replicated Bello's definition of the porción conyugal and its rules word for word. The treatment of the spouse in the 1st order of intestate in Mexico's 1857 Law of Succession was similar to that in Bello's code: spouses received a share equal to that of a child if they did not own any assets, or up to this amount if they did not have sufficient assets to live "appropriate to their status." 65 It was not just poverty that was considered, but the standard of living to which the spouse was accustomed. It was also similar in that if the spouse brought a dowry to marriage, received any donation from the deceased or gananciales from the dissolution of the conjugal society, the spouse was entitled only to the difference between the value of these assets and a child's share; these could be renounced, however, if it were to their benefit. This conditionality was maintained in the other orders of succession, whether the spouse inherited alongside natural children, ascendants, and/or siblings; hence, in this aspect it was less generous than Bello's code. The 1870 Mexican civil code is often called "the Sierra code" after Justo Sierra, the primary author of its first draft. However, the commission that finalized this code after his death rejected his recommendation on intestate succession. Sierra had followed García Goyena's draft code for Spain, giving spouses an unconditional inheritance share alongside children and including the identical spousal inheritances shares in the various orders of succession. 66 The final 1870 code reverted to the rules of Mexico's 1857 law, maintaining its same conditionality if the spouse inherited alongside descendants or ascendants, but it improved on it if the spouse inherited alongside siblings, dropping the conditionality so that the spouse's share only depended on their number. Turning to the codes that most significantly improved the position of spouses, Venezuela's 1862 civil code, authored by legal scholar Julián Viso, was the first code to be promulgated which gave the surviving spouse an unconditional share in the 1st order of succession . The 64 It would be in the interest of the spouse to renounce their share of the gananciales if the deceased's individual property considerably exceeded that half, or if the estate were heavily indebted. 65 legitimate children and the spouse divided the full estate by head. In the absence of descendants, half the estate went to the ascendants, while the recognized natural children and the spouse each received one-quarter; if there were no natural children, the ascendants received three-quarters and the spouse, one-quarter. This code was short-lived, being abrogated that same year, but its spousal intestate rules, while not followed in the 1867 civil code , reappeared in the country's 1873, 1880, and 1896 codes. Also, this code's precedent of giving spouses an unconditional share of the deceased's full estate , was later followed in the liberal reforms in Honduras and El Salvador. Dalmacio Vélez Sársfield, author of Argentina's 1869 code, also included surviving spouses in the 1st order of intestate with a share equal to that of a legitimate child, but only of the individual patrimony of the deceased, not of the full estate. In this way, he side-stepped the issue of needing to make deductions for the gananciales. In the 2nd order, the spouse and recognized natural children were each entitled to one-quarter of the deceased's individual patrimony, while one-half went to the ascendants; in the absence of natural children, the spouse and ascendants divided the individual patrimony by head. While only legitimate or natural children or ascendants inherited the gananciales, in their absence, the spouse inherited the full estate, including the gananciales. 67 The only restriction was that they could not be the guilty party in a permanent separation or a party to a death-bed marriage. The influence of Vélez's intestate rules outside of Argentina is evident in Paraguay, which adopted this code en toto in 1876, 68 and in Bolivia's reform of succession law in 1882. 69 In both countries thereafter the surviving spouse automatically inherited a share of the deceased's individual property equal to that of a legitimate child. In sum, except for the Dominican Republic, all the nineteenth-century civil codes improved the position of spouses in the order of intestate succession compared to the colonial norm demonstrating a preference for the spouse over the extended blood lineage. By the turn of the century, most either ceded the full estate to the spouse either in the absence of descendants and ascendants, or after siblings and their issue, Peru and the Dominican Republic being the two exceptions. Those countries that gave preference to the spouse over siblings-Argentina, Paraguay, Guatemala, Bolivia, Costa Rica, and El Salvador-provide the strongest evidence that social sensibilities had changed sufficiently to assume that a married person's primary loyalty and 67 This point had not been clear in Vélez's original 1869 draft nor in the official civil code published in 1874, Código civil, Book 4, Title IX, arts. 6-8, 12. For internal consistency, the congressional committee appointed to clean up errors for the 1883 official edition added that it was only if spouses concurred with descendants or ascendants that they did not inherit from the deceased's gananciales; Lisandro Segovia, El código civil argentino anotado , 655. 68 According to Helen I. Clagett, A Guide to the Law and Legal Literature of Paraguay , 7-8, a copy of the Argentine code was not even published in Paraguay in this period. Later, a July 1889 decree declared the fourth edition of the Argentine code to be the official Paraguayan version. 69 "Filiación y reconocimiento de hijos naturales, Ley de 27 de diciembre de 1882," in Salinas Mariacas, Códigos Bolivianos, 460-63; and Canedo, Código civil boliviano, 241. responsibility was to the conjugal unit rather than to the extended family. The most favorable treatment of spouses, nonetheless, was in those countries where in the 1st order they had an unconditional right to a share of the full estate-in Venezuela, Honduras, and El Salvador-or of the deceased's individual property-in Argentina, Paraguay, and Bolivia. The most unfavorable treatment was in Peru, Chile, Mexico, and the other countries that replicated Bello's porción conyugal. --- How and Why Argentina and Venezuela Went Further Historians concur that colonial Argentina and Venezuela shared several features that led to their greater receptivity to new ideas regarding liberty and individual freedom than other parts of the Spanish empire and which explain why the struggle for independence began in these two poles as well as these republics' adherence to the principles of liberalism. 70 Both were late bloomers under colonial rule, without a sizable wealthy elite vested in the structures of colonial rule. They only achieved a greater degree of local autonomy and more open ports to trade under the Bourbon reforms of the 1770s when Buenos Aires and Caracas grew rapidly, partly through immigration. The wars of independence lasted longer and caused more devastation in Venezuela than Argentina. Although both republics then experienced recurrent civil wars, often over the balance between centralism and federalism, their elites tended to be unified around their commitment to most of the principles of liberalism. Moreover, by the time each country developed their national civil codes, freer trade and of the circulation of ideas had brought about considerable change in social conventions regarding marriage and the family, including on the position of women. Notably, ideas on improving the position of spouses in intestate were discussed in both countries even before the circulation of García Goyena's tome. Next, I trace the trajectory of ideas on intestate that informed their respective codes and compare their solutions. --- Argentina The dissemination of the ideas of Jeremy Bentham prompted the initial discussions around the need to change the rules of intestate succession in Argentina. By the time that Vélez began drafting his civil code, there was consensus on the need to favor the spouse over all collateral relatives. Surely inspired by his study of García Goyena's tome, he took the next step, giving spouses an unconditional share of the deceased's individual patrimony in the 1st order of succession. In 1824, Argentine jurist Pedro Somellera, an early advocate of Bentham's civil code principles, published his lectures on Bentham's work. 71 Somellera 70 Bushnell and Macaulay, The Emergence; John Lynch, The Spanish American Revolutions 1808-1826, 2nd ed. ; Victor Tau Anzoátegui, La codificación en la Argentina . Mentalidad social e ideas jurídicas ; Zahler, Ambitious Rebels, 28-29. 71 Tau Anzoátegui, Esquema histórico, 105-10. considered that Bentham's reasoning provided a theoretical justification for the Hispanic colonial legacy on intestate. 72 But he took issue with the position of widows in Bentham's proposal , arguing that it did not conform to the presumption of greatest affection: "Who would presume that the deceased would love a relative more, in whatever degree and whom he might not even know, than the woman with whom he has lived? …There is no aspect of marital life that does not lead one to assume that spouses have a mutual and greater affection towards each other than towards most relatives." 73 Somellera also thought Bentham contradicted himself with respect to one of the objectives of his rules-to prevent the pain of disappointment. Given that spouses shared their assets during the union, excluding the widow from inheriting from her husband's estate "would make a mockery of her expectations." 74 He concluded that "both the widow and widower deserve a better place in the order of succession," although he did not propose a specific alternative at that time; he only recommended that the colonial cuarta viudal be applied to poor widowers as well. Some of Somellera's students at the law faculty of the University of Buenos Aires then took up the issue, arguing in their doctoral theses that in intestate the wife should be preferred over other relatives. 75 Among them was an 1830 thesis written by José María Costa, who made the case for why widows should inherit their husbands' estate prior to siblings or other collaterals. 76 Somellera subsequently went into exile in Uruguay, and while teaching law in Montevideo, authored the 1837 Uruguayan Law of Succession. 77 Recall that this law elevated the position of the surviving spouse in the order of succession ahead of all collateral relatives, being the first piece of legislation to do so in Hispanic America. Feminist scholar Blanca Zeberio carefully analyzes the themes of the doctoral theses in law at the University of Buenos Aires in this period and shows how their focus changed over time. 78 In the 1830s, a main topic of concern was the dowry, a practice that protected women from the vagaries of marriage, but which was already becoming less common in the context of an expanding commercial economy. The dowry, an advance on a daughter's inheritance, was considered an impediment to economic progress, particularly by the merchants and ranchers of Buenos Aires since it tied up much needed capital. By the 1840s the focus turned toward protecting women in inheritance, such as by giving preference to the wife over other relatives, as well as on the rights of children born outside of marriage. Historian María Selva Senor, who studies these same 1840 theses, also notes how they uniformly questioned why, if intestate was premised on the principle of greatest affection, wives should be excluded from inheriting from their husbands. 79 The 1849 thesis by Juan Francisco Seguí went furthest in this regard, proposing that in the line of succession, a wife take precedence over parents: "If the woman is the pillar of support of the other sex, and with her characteristic sweetness and kindness she increases her husband's happiness and neutralizes or mitigates his sorrows…what is more natural at his death, if he leaves assets, and in the absence of legitimate descendants, that these belong to his wife, before ascendants and with much more reason, before collateral relatives?" 80 An author of one of these law theses, Federico Pinedo, went on to become a deputy in the legislature of the state of Buenos Aires, and in 1855 introduced the first bill to improve the position of spouses in intestate. 81 However, his bill only went as far as including the spouse in the 3rd order, whereby if there were no descendants or ascendants, they were entitled to one-half the estate, with the remainder going to the deceased's siblings. The senate improved the position of spouses still further by excluding siblings. The 1857 Buenos Aires law 82 thus provided for spouses to inherit the full estate if there were no legitimate descendants or ascendants, which was like Uruguay's 1837 law. In 1862, the provinces of Entre Rios and Santa Fe passed similar laws. 83 According to legal historian Abel Cháneton, these provincial laws reflected local practice whereby in testaments husbands tended to prefer wives over other relatives with the one-fifth share of their estate which they were free to will to whomever they chose. 84 Moreover, he noted how in this period "wives were gaining in respect and consideration," 85 an indication of the growing centrality of the conjugal unit. Ample scholarship on Argentina has documented how by mid-century a shift had occurred in the choice of a marriage partner from parents to children and of acceptance of the idea that marriage should be based on romantic love rather than material considerations. 86 These 79 María Selva Senor, "La institución de herederos en la sucesión ab-intestato: Transformaciones en la concepción de familia y herencia. Buenos Aires durante la primera mitad del Siglo XIX." Quinto Sol 8 : 73-87. 80 Juan Francisco Seguí, "La sucesión ab-intestato excluyendo a la mujer legítima," 1849 thesis presented to the Faculty of Law, University of Buenos Aires, quoted in Selva Senor, "La institución de herederos," 80, note 18. 81 trends were nourished by the romantic movement, 87 and were accompanied by a rise in the perceived status of wives, where they were valued for their domesticity and maternalism, and heralded as the "queen" or "angel" of the home, as was becoming the norm in Victorian England and parts of Europe. 88 Dalmacio Vélez Sársfield, who was commissioned in 1864 by president Bartolomé Mitre to draft Argentina's first national civil code, was familiar with the debates over intestate in the Buenos Aires legislature, since between 1856 and 1858 he had served as minister of government for that state. 89 While in his proposal, in the absence of descendants or ascendants, he granted the full estate to the surviving spouse, he did not mention the provincial-level legislation as precedent. In the notes accompanying his 1869 draft, 90 he referred to these laws only in passing, as justification for his adding a restriction prohibiting a spouse from inheriting if the couple had married while the deceased was sick and had died within thirty days of the marriage; these laws apparently had led to this type of abuse. 91 Vélez referenced the cuarta viudal of the Siete Partidas as the basis for including spouses in the 1st order, although he noted that "the observance of this law has always been very doubtful." 92 This cuarta viudal, of course, could not be more different from what he was proposinggranting spouses an automatic share of the deceased's individual property alongside children. Vélez, who was the youngest son of a relatively poor widow and a widower himself, 93 never published a full explanation of the rationale behind his intestate rules. In his cover note transmitting his draft code to the president, he acknowledged his intellectual debt to García Goyena and Bello as well as to Brazilian jurist Augusto Teixeira de Freitas. 94 The closest that he came to an explanation was in his reply to a critic of his draft code who asserted that, Histories of Love, Gender and Nation in Buenos Aires, 1776-1870 . 87 This is known as the "Generation of 1837," which mirrored trends in Europe. See Mayo, Porqué la quiero, 63. 88 Shumway, The Case of the Ugly Suitor, 139; see Szuchman, Order, Family, 146, on how European social trends tended to be adopted earlier in Argentina than in other parts of Hispanic America due to its greater commercial and cultural contacts. 89 Cháneton, Historia de Vélez, vol. 1, 285-87, 387-88. Besides being a professor of civil law, Vélez established his credentials as a codifier by being the co-author of the 1859 commercial code for the state of Buenos Aires. He later served as senator and, when asked to draft the civil code, was serving as president Mitre's minister of finance. 90 As he completed each of the code's four books, these were published in draft form between 1865 and 1869. Since his draft book 4 on succession law was the last to be published and the complete draft was then immediately presented to and approved by the congress, the official 1874 version and his 1869 draft on intestate are identical; Tau Anzoátegui, La codificación. 91 Ibid., 1078. 92 Sársfield, Proyecto de Código Civil. 93 His father had been a widower with ten children when he married his mother, with whom he had an additional six children; he died shortly after Vélez's birth. Cháneton, Historia de Vélez, vol. 1, ch. 1. 94 Argentina, Código civil, i-ii. 638 Carmen Diana Deere among other points, he drew too much on the work of Freitas. 95 In this essay, Vélez emphasized how his code was much more favorable to women than other codes, and, specifically, how "in the conjugal society we have departed absolutely from Brazilian legislation or the civil code draft of Sr. Freitas and from all existing codes." 96 He offered his treatment of the dowry as an example. Vélez considered the inalienability of the dowry under colonial law to be a constraint on economic growth. While in his code it lost its special privileges, being treated just like any other donation, 97 he stressed how in his formulation the dowry was considered a woman's own property which she could alienate, albeit, with her husband's permission. Vélez also highlighted how he had improved the position of widows and widowers in intestate: "We give the right of succession to husband and wife in the absence of ascendants or descendants, and even in their presence, we give each a legitimate part of the inheritance." In taking this step, he surely was inspired by García Goyena's proposal on intestate; legal scholars consider 300 articles in Vélez's code to be drawn from García Goyena's tome. 98 Of the published comments on Vélez's draft code by contemporaries, José Francisco López was the main legal scholar to address his volume on succession. 99 He praised Vélez for "interpreting well the laws of equity and the affections of the heart," and considered his innovations to be in the interest of the family. 100 Nonetheless, later several of the jurists who wrote treatises on Argentina's 1869 code took issue with Vélez's order of intestate succession. Baltomero Llerena and José Olegario Machado both questioned why he had excluded the parents of the deceased from the 1st order. 101 They disagreed with each other on whether individuals loved children and parents equally, the basis for Llerena's critique of Vélez. For Machado, the ordering of intestate should be based on a person's obligations and social utility, rather than love and affection. He took issue with Vélez's intestate rules for being too favorable to spouses: "Argentine legislators have not been just when they have been so solicitous to the spouse, forgetting the ascendants." 102 Neither Vélez nor his contemporaries explicitly referred to the improvement in the intestate position of spouses in the 1869 code as a form of compensation to women for the loss of the special privileges and practice of the dowry. This insight has been a contribution of more recent scholarship. 103 Other scholars have attributed this improvement to the mid-nineteenthcentury expansion of the export-oriented economy and/or immigration which resulted in household wealth being more likely to result from the collective effort of husbands and wives, rather than from the inheritance of landed estates. 104 Undoubtedly, these factors contributed to the rise of the centrality of the conjugal unit and the shift in loyalties from the extended to the nuclear family that shaped the context in which Vélez was writing. --- Venezuela In Venezuela, there is little evidence that a change in succession law was on the mind of legal scholars or legislators prior to the 1850s although views of marriage and the family had begun to change. The depopulation caused by the wars of independence may have motivated an 1826 law, during the period of Gran Colombia, to encourage marriage. 105 It lowered the age at which a person could marry without parental consent ,106 in effect, strengthening individual over parental rights in the choice of a spouse. Social historians Arlene Díaz and Reuben Zahler also show how, beginning in the 1830s, the language and concepts of liberalism began to change views of marriage. 107 In court cases on divorce and alimony, women began to stress its contractual aspects, such as equality before the law and the mutual obligations it implied, rather than its religious dimension. Historian Mirla Alcibíades provides a compelling analysis of the rise of centrality of the conjugal unit in the 1850-1870 period and how it was accompanied by the elevation of the status of the wife to the position of "guardian angel" of the home. 108 Among the factors she associates with this trend was the rising literacy of elite women and the growing popularity of the romantic-sentimental novel as well as of manuals on good domestic management; initially these were imported from Europe or the United States but were produced in Venezuela from the 1840s on. Recurrent economic crises also contributed to social recognition of how a wife's good domestic management was linked to capital accumulation, just as elevation of her maternal role was crucial to recovery from the depopulation caused by the recurring civil wars. Moreover, by the 1870s there were concerns that efforts toward nationbuilding had failed. If a lasting peace and modernity were to be achieved, the nation needed to be built upon a new morality, centered on domestic tranquility and feminine sensibilities in the socialization of children. Thus, consolidation of the nation, in Alcibíades's analysis, came to fall on the primacy of conjugal unit and separate spheres in which women were the guardian angels of the home, or what Zahler terms "Republican motherhood." 109 In a pattern not unlike that of Victorian England or Europe, the construction of wives as "angels" or "queens" of the home and the emphasis on the conjugal unit were accompanied by the normalization of the view that an individual's affection for and obligation to a spouse were at least equal to that for their children. When Julián Viso produced his first draft of a civil code in 1854, his idea to elevate the position of the spouse in intestate may have been ahead of his time, but his most novel idea, to give the spouse an unconditional share in the 1st order, which appeared in his approved 1862 code, was maintained in most of the country's subsequent codes. Shortly after completing his doctorate in law, Viso was appointed in 1853, during the presidency of José Gregorio Monagas, to draft all of Venezuela's codes. 110 He delivered his draft civil code the next year, and in his cover letter, he explained the sources upon which he drew. 111 While he principally followed the French civil code and French commentators, he also mentioned Vidaurre's draft code for Peru, but not García Goyena or Bello's drafts to which he likely had not yet had access. 112 In his 1854 draft on intestate succession, Viso did not propose including the surviving spouse in the 1st order if the deceased left legitimate children. However, if the deceased left only recognized natural children, these substituted for the legitimate children and in this case the spouse inherited a share equal to a child, irrespective of poverty or need. 113 Placing natural children and the spouse ahead of the deceased's parents in the line of succession was a very original idea at the time. Recall that Vidaurre's draft upon which he drew went only as far as placing the surviving spouse prior to siblings. That Viso was predisposed to favoring the spouse and children born outside of marriage may be related to the fact that his own mother was a relatively poor widow with children when she married his father, that his father had several recognized natural children born prior to this marriage, and that he was quite close to his half-and stepbrothers. 114 While the Monagas administration recommended Viso's draft code favorably to the congress, the bill was never brought up for discussion since a bill on ending slavery took precedence. 115 Several years later, General José Antonio Páez appointed Viso to chair a new codification commission and he was the main author behind Venezuela's 1862 code, the first in Hispanic America to give surviving spouses an unconditional inheritance share in the 1st order. While much of this code is based on Bello's Chilean code, 116 the influence of García Goyena's tome on Viso's intestate rules is evident in the report of the revisory commission appointed to review his draft, a commission which he chaired. This report critiqued the position of the spouse under colonial norms on similar terms to García Goyena: The cuarta marital that the law of the Partidas cedes the poor widow cannot meet the needs of justice and, moreover, it is inconvenient. Experience has shown that it only leads to scandalous lawsuits where the mother is diminished in the eyes of her children. Its rare use is the best proof of its inconvenience. The proposed code establishes a rational base: it equals the position of the surviving spouse and legitimate children… 117 The commission also drew on García Goyena's justification for elevating the position of the surviving spouse almost word for word, arguing that it was politic, humane, and rational to do so. Moreover, "should the poor mother or father be placed in the sad position where they must depend upon their children for sustenance? And what is given to the widow or widower will it not in most cases…soon be returned to these same children?" 118 No country had as many nineteenth-century civil codes as Venezuela, five in all. 119 The 1862 code was in force for less than a year before it was abrogated, at the conclusion of a civil war, by president General Juan Crisóstomo Falcón. In 1867 he appointed a new codification commission which once again included Julián Viso, but not as chair. This commission had only forty days to produce a new code which is among the reasons it adopted García Goyena's draft code for Spain with only some modifications. The congress approved the new code without much discussion, which went into effect that year. 120 Although the 1867 code was based on García Goyena's draft, somewhat surprisingly, its intestate provisions more closely resembled those of Bello's code. While spouses were placed in the 1st order of succession and received a share equal to that of a legitimate child if they had no assets, if they owned assets, or received gananciales they were entitled only to the difference in these values, echoing the conditions of Bello's porción conyugal. Similar conditions applied in the 2nd order, when the spouse inherited along with the ascendants; however, in the latter's absence, the spouse inherited the full estate, an innovative provision. Thus, compared to Viso's 1862 code, the spouse lost the unconditional right to inherit in the 1st order, but gained in the order of succession at the expense of both siblings and recognized natural children; the latter were excluded from inheriting altogether. This trade-off in the position of the spouse was perhaps part of a bargain on the commission, which suggests that there was not yet total consensus on these issues. The 1867 code was also short-lived, since, after another period of political instability, provisional president General Antonio Guzmán Blanco of the Liberal party rescinded it and in 1872 appointed a new codification commission. The code promulgated in 1873 was modeled on the Italian civil code of 1865, considered the most modern code of the time. 121 Nonetheless, with respect to intestate, it did not replicate the Italian code but, rather, re-incorporated important principles from Viso's 1862 civil code. 122 As in that earlier code, surviving spouses were in the 1st order, receiving an unconditional share equal to that of a child. Their position in the 2nd order was slightly improved over the 1862 code, with the spouse, ascendants, and natural children each receiving one-third of the estate, by category. In the absence of descendants and ascendants, the 1873 code reverted to that of 1862, with the spouse, natural children, and siblings sharing the estate. The country's fourth civil code, promulgated in 1880 , contained no changes to succession law; a fifth civil code, adopted in 1896, maintained almost the same intestate provisions, only expanding the list of collateral relatives who might benefit before the estate passed to the state. Hence, legal scholar Anibal Dominici, writing at the turn of the century, credited Julián Viso for giving spouses as well as 120 Amenodoro Rangel Lamus, "El Código Civil de 1873 y sus antecedentes legales," in Conmemoración del Centenario del Código Civil decretado en Febrero de 1873, ed. Congreso de la República , xiv. 121 Ibid. Viso did not participate in this commission. 122 In the Italian code, the spouse was in the 1st order, receiving a share equal to that of a child but only in usufruct. Only in the 3rd order, when they concurred with siblings and natural children, did they received an inheritance share as property; if there were no collateral heirs to the 6th degree, they inherited the full estate. Alberto Aguilera y Velasco, El Código Civil Italiano comentado, concordado y comparado , arts. 736-818. recognized natural children inheritance rights in most of the country's nineteenth-century civil codes. 123 As he explained, this "is a particularity of the Venezuelan civil code which perfectly corresponds to reason, equity and natural sentiments." 124 The gananciales: a property right or an inheritance? Why Argentina limited spousal inheritance to the individual property of the deceased rather than a share of their full estate, as in Venezuela, is related to different interpretations of what the gananciales constitute in the marital regime of partial community property. The Venezuelan approach recognized the gananciales as a property right thus acknowledging that these are generated through the effort and capital of both spouses in the partnership. In this view, they are irrelevant to the issue of inheritance and, hence, there is no reason to take them into account when placing the surviving spouse in the 1st order of succession since sufficient justification is provided by the love and consideration that spouses have for each other. For this reason, Venezuelan jurist Dominici criticized those codes which reduced the share that the spouse might inherit by deducting their portion of the gananciales. 125 Most late-nineteenth-century Argentine jurists distinguished between the half of the gananciales that was due a surviving spouse as a "partner" in the conjugal society and the share they might receive from the individual property of the deceased as an "heir." According to Lisandro Segovia, the reason spouses should not inherit from the deceased's share of the gananciales was that these constituted "a form of inheritance." 126 He praised Vélez's approach, for if spouses shared in both the deceased's individual property and the gananciales they would take a major share of the estate to the detriment of the descendants. Implicit in Segovia's analysis was that wives widowed more frequently than husbands, 127 and a biased view of the gender division of labor that attributed the generation of gananciales only to the husband's efforts. That is, it ignores the wife's contribution to the generation of gananciales through her domestic labor and savings. From this perspective, in which no monetary value is assigned to domestic labor, then it follows that at the dissolution of the marriage, the wife's share of the gananciales is an "inheritance" from him. This perspective also ignores that after the decline of the practice of dowry, 123 Dominici, Comentarios, vol. 1, xiv. 124 Ibid., vol. 2 , 42. 125 Dominici, Comentarios, vol. 1, xiv. In determining inheritance shares, he considered it appropriate only to deduct any assets donated in life by the deceased to the spouse or a child, a rule common to most of these codes. 126 Segovia, El código civil, vol. 2, 542. 127 While the difference in male and female life expectancies was relatively small in the nineteenth century compared with the gap that would develop in the next, the age gap at marriage was large , so that it was more likely that wives would outlive their husbands. For example, in 1855 the age gap at marriage in Buenos Aires was 7.5 years, having fallen from 11.4 daughters continued to inherit from their parents at their death, thus their capital-although under the husband's management-also generated gains, and moreover, that non-elite women not infrequently earned income which contributed to the gananciales. Segovia did not feel the need to explain why the spouse should be given an automatic right to inherit a share of the deceased's individual property, suggesting that this practice was widely accepted in legal circles. The main critic, alluded to earlier, was José Olegario Machado who, while accepting Segovia's reasoning that the spouse held a double role in inheritance-as a partner and an heir-considered that as a result, too much of the deceased's patrimony went to the spouse. He argued that "it would have been convenient and just to reduce the share of the surviving spouse, giving them a choice on whether to participate as a partner or as an heir, but not as both."128 Machado would have also preferred including siblings among the forced heirs. As other traditionalists across the region, he was concerned that if a man died without leaving children or parents and his estate went to his wife, it would eventually be divided among her family rather than the deceased's family of origin. Those codifiers who imposed conditions for spouses to inherit in the 1st order, such as Bello or Mexico's 1870 codification commission, followed similar reasoning regarding how much a spouse might inherit when children were involved. Only if they owned no assets and there were no gananciales from the marriage might they inherit a share equal to a legitimate child. In Mexico, if the spouse owned assets or claimed gananciales, the commission wanted to assure that their share be only sufficient "to equalize the inheritance shares."129 By requiring that this calculation include the gananciales, the commission was ignoring that the gains from marriage were due to the efforts of both husband and wife. Moreover, the inclusion in this calculation of the dowry and any other assets of the spouse, rather than equalizing inheritance shares, resulted in an equalization of the relative wealth of each child and the surviving spouse, much to the latter's detriment. Perhaps for this reason, a few countries departed from the Mexican or Bello's model in calculating the porción conyugal, for example, Costa Rica only deducting the spouses' share of gananciales or Guatemala only deducting their individual assets, rather than both. This underscores why Viso's and Vélez's innovation of giving surviving spouses an unconditional inheritance right in the 1st order was pathbreaking. Viso's code clearly established that the gananciales were a property right and should not be confused with inheritance rights. Vélez's code partially sidestepped this issue by limiting the spouse's inheritance right to the deceased's individual property; nonetheless, by not conditioning this part of the inheritance on the surviving spouse's ownership of other property, he confirmed the principle that the spouse carried equal weight to the children in a person's presumed loyalties and obligations. Nonetheless, Venezuela's provisions were not only more generous, but also increased the bargaining power of the surviving spouse over children by giving them a greater degree of control over the future of the family home, farm, and/or business. --- Conclusion In this analysis of the Hispanic American civil codes, I have shown that the position of the surviving spouse in intestate succession improved notably over the course of the nineteenth century; that what most differentiated these codes is whether in the 1st order the spouse was entitled to a conditional or unconditional inheritance share; and, in the latter case, whether the unconditional share was of the full estate or only of the deceased's individual property. In most countries, the codes reveal a shift in the perceived loyalties and obligations of individuals from the extended to the immediate family. By the end of the century, the surviving spouse inherited the full estate either in the absence of descendants and ascendants, or if the deceased also left no siblings or their issue, as in Chile and the countries that replicated Bello's rules. In most, in the 2nd order , spouses gained an unconditional right to a share of the estate along with ascendants and recognized natural children. Those codes that gave primacy to the conjugal unit, assuming that a person's love and affection for a spouse was at least equal to that for their children, gave the surviving spouse an absolute inheritance right in the 1st order, whether poor or wealthy. The unconditional inheritance provisions in the codes of Argentina and Venezuela made it more likely that widows and widowers could support themselves after the death of a spouse. While the spouse's share of the estate would eventually go to the children, it also strengthened their bargaining power over them, particularly, Venezuela's more generous provisions. Bello's Chilean code improved upon colonial norms by moving away from the poverty required by the cuarta viudal or Peru's cuarta conyugal, to the porción conyugal, available on the same terms to both widows and widowers depending on their relative need. However, by including both a person's individual assets and the gananciales in determining whether and how much the spouse received, Bello reduced the possibility of their inheriting anything at all. Bello's civil code for Chile was adopted by more countries in the region than any other code. As a result, those who replicated his porción conyugal ended up placing spouses in a much inferior position compared to other countries, a feature which still differentiates some of them-such as Colombia and Ecuador-today. 130 The differences between Viso's more generous code in Venezuela and Vélez's in Argentina is based on different interpretations of what the gananciales represent, a property right or an inheritance. I have argued that jurists who considered these as an inheritance ignored the wife's contribution to the generation of gananciales by assuming that these are due solely to the efforts and capital of the husband. In this regard, Vélez's solution-excluding spouses from inheriting a share of the deceased's gananciales-did not stray too far from the rationale embodied in the codes which adopted the porción conyugal and conditioned the amount by the spouse's relative wealth. Reviewing the circulation of ideas on intestate, I have shown that discussions in Hispanic America around improving the position of spouses began early in the Republican period, prior to the publication of García Goyena's draft code for Spain. Bentham's principle that the presumed degree of affection should guide the ordering of intestate succession certainly influenced these discussions, but in ways he did not foresee, since he ignored spouses in devising his ideal line of intestate succession. The new idea promoted by Somellera and his students in Argentina was that if the affection that existed between spouses was equal to or greater than that felt toward one's children , this should be reflected in the order of intestate succession, placing the surviving spouse ahead of collateral kin. García Goyena's tome took this idea to its logical conclusion, that if the conjugal bond was primary, why should the spouse not inherit an unconditional share of the deceased's estate in the 1st order and that it be at least equal to that of a child? The early attention to improving the position of spouses in the region was likely precipitated by a combination of factors that differed in importance by country: the plight of the large number of widows left by the wars of independence and recurrent civil wars; concern over the decline in the practice of dowry; and growing acceptance of the idea that marriage should be based on romantic love. I have argued that Viso and Vélez were predisposed to García Goyena's reasoning both because of their own personal histories and because their countries were more open to liberal ideas and experienced earlier some of the impacts of liberal policies. Freer trade led to the deepening of markets which disincentivized the dowry and fostered individual initiative and greater reliance on the conyugal unit over extended families. By the 1860s social sensibilities in both Argentina and Venezuela had changed sufficiently to assume the primacy of the conjugal unit, particularly, once the Victorian ideal became embedded of the wife as the queen of the home. The impact of the decline in the practice of the dowry requires further research since over the course of the nineteenth century it disappeared throughout the region; nonetheless, only in Argentina is there evidence that it was invoked as a reason to improve the intestate position of widows. One would assume that with its demise, the support of widows became a potential problem everywhere, particularly as the rise of the cult of domesticity and motherhood meant that relatively few women of the middle and upper classes were employed outside the home and so had no independent source of income. Yet, by 1902, it was only in the six countries where spouses were unconditionally in the 1st order that women, once widowed, were potentially compensated for its disappearance. But perhaps the other more modest improvements in the position of spouses in other countries were motivated, in part, by such considerations. Overall, the idea of improving the intestate position of spouses in Hispanic America does not appear to have been too controversial, perhaps because this change was gender neutral, applying to both widows and widowers. The issue was by how much that position should be improved, and at whose expense. The inheritance rights of recognized natural children, not to mention other illegitimate children, were more contested. Moreover, sometimes it appears as if there was a trade-off in these codes between improving the rights of the spouse and those of natural children, a topic which merits further comparative research. Finally, it would also be useful if historians of both Europe and Latin America prioritized the study of nineteenth-century wills to examine to whom the share that individuals were free to allocate was assigned. This might confirm if the various approaches to intestate adopted by the different countries conformed to local social norms and explain why Hispanic American countries improved the position of spouses earlier than those of Europe. --- Competing interest. None. Carmen Diana Deere is distinguished professor emerita of Latin American studies and food & resource economics at the University of Florida <[email protected]>. Notes: When two dates are shown, the first refers to the year the code was promulgated; the second, in parentheses, the date it went into effect, if differs. BELLO indicates that intestate generally followed the 1855 Chilean civil code. NA = not applicable. --- Cite
In colonial Hispanic America, widows and widowers were in an unfavorable position if their spouse died without a will, only inheriting from them if the deceased left no blood relatives to the 10th degree of kinship. This article examines the extent to which the intestate position of the surviving spouse improved in the new civil codes of the sixteen republics, and how their approaches were influenced by the circulation of ideas. It finds that in all except one the spouse came to be favored over the extended family. If the deceased left children, two approaches developed with respect to the inclusion of spouses: where they obtained an unconditional right to an inheritance share equal to a child, and where their inheriting depended on their relative poverty or need. These reforms took place in concert with the rise of the centrality of the conjugal unit as the focus of affection, loyalty, and responsibilities, and prior to such reforms in Europe. The countries that went furthest in elevating the position of spouses, Venezuela and Argentina, were those most deeply influenced by the ideas and changes fostered by liberalism.
INTRODUCTION The US foreign-born population continues to grow and is becoming increasingly diverse . When most immigrants enter the US, their risk of alcohol abuse is lower than the native population, even among those of the same race-ethnicity . However, the longer immigrants are in the US, the greater are their risks for alcohol abuse. Most research on immigrant alcohol abuse has focused the Hispanic/Latino ethnicity. US-born non-Hispanic whites appear to be more likely to abuse or be dependent on alcohol compared to US-born or foreign-born Mexican Americans , even after controlling for sociodemographic variables . However, nativity was found not to be a factor when comparing US-born and island-born Puerto Ricans and "other Hispanics/ Latinos" . Other studies show that foreign-born Latinos, Asians, and Africans are less likely to experience substance use disorders ) than are their US-born counterparts , but the patterns of alcohol use/abuse can vary by other factors, including country of origin, gender, or generation since immigration . In terms of alcohol treatment utilization, US-born adults are more likely to display helpseeking behavior and participate in treatment than adults who are foreign-born , 2005;Fiscella, Franks, Doescher, & Saver, 2002), with lack of fluency in English and lack of health insurance being two major barriers to care. Few studies have addressed differences in alcohol treatment between immigrants compared to US-born. Cultural differences in defining alcohol abuse as a problem may also play a role in treatment gaps. One study of homeless people found immigrant substance users to be less likely than non-immigrants to perceive a need for treatment, though the two groups were similar in frequency and quantity of alcohol use . Although many studies emphasize the need for culturally sensitive treatment programs , there is some evidence that cultural differences or acculturation may not be related to the success or lack of substance treatment among immigrant groups . Additional research is needed to determine immigrant treatment utilization for risky or abusive drinking. There is a limited understanding of how foreign-and US-born groups differ in alcohol abuse in part because many studies have relied on small or regionally specific samples, focused on a single racial-ethnic group, or have not provided appropriate comparisons to a US-born group. Also, many past studies have been unable to sufficiently account for factors known to be associated with alcohol use/abuse and treatment-seeking such as acculturation, discrimination, or social ties, when addressing the impact of immigrant characteristics on alcohol use/abuse and treatment-seeking. This study closes some of these gaps and extends the past literature by: examining several alcohol use/abuse and help-seeking outcomes by race-ethnicity, nativity, and gender while accounting for other explanatory factors; relying on nationally representative longitudinal data for US adults that measure the timing of the outcomes; and, using detailed measures of acculturation, racial-ethnic orientation, stress/stressors , and social ties. --- Conceptual Framework Alcohol use is a worldwide phenomenon, but its patterns vary by region and culture. Alcohol consumption tends to be higher in Europe and North America than in Africa and Asia. Per this multiculturalism perspective , when people migrate, they take their drinking habits with them, adding to the mosaic of drinking cultures within host societies. Also, treatment-seeking for alcohol problems can vary across societies and cultures because of varying levels of stigma towards substance use and treatment options available in different social settings. Stigmatizing attitudes can be particularly strong and alcohol rehabilitation options limited in developing societies . To what extent stigma and help-seeking behaviors derived from the original culture are preserved or change after migration depends on the interaction of original and host society elements. The past literature underscores the need for a further understanding of how membership in cross-cutting racial, ethnic, and nativity groups affects mental and behavioral health . In a diverse society like the US, individuals of various backgrounds must often reconcile multiple cultural influences and multiple racial, ethnic, or nativity-based identities. Patterns of alcohol use/abuse and treatment-seeking may reflect the interplay of these multiple identities. Furthermore, the migration experience to the US , preimmigration experience , and acculturation modes and outcomes vary among foreign-born and in ways that may relate to differences in alcohol use/abuse. Acculturation is a multidimensional concept that broadly refers to changes that occur due to contact with culturally dissimilar groups and social influences . Originally, acculturation was defined as a unidimensional process of retention of the heritage culture while assimilating to the receiving culture. Later, Berry developed a bi-dimensional model of acculturation in which receiving-culture acquisition and heritage-culture retention were independent dimensions. Berry further proposed four intersecting acculturation categories: assimilation, separation, integration, and marginalization. However, research has shown that not all of these categories may exist across samples and populations . The category of integration, or adoption of the receiving culture while retaining elements of the heritage culture, has been referred to as biculturalism and has been shown to be often associated with favorable psychosocial outcomes, including lower rates of substance use . More recently, the concept of acculturation has been extended to include the heritage and the receiving practices , values , and identifications . Within this extended concept of acculturation, additional dimensions of acculturation are considered, in particular, the context of reception and its effects on acculturation. An unfavorable context may result in the so-called acculturative stress, which refers to adverse effects of acculturation such as anxiety, depression, and other types of maladaption. Research has documented correlations between substance abuse and measures of acculturative stress and assimilation . Furthermore, immigrants may face discrimination and hostility from US-born individuals that may be greater due to the immigrants' race/ ethnicity. Discrimination means differential treatment based on membership in a minority or lower-status group. Examples of discrimination include overt harassment as well as subtle micro-aggressions, such as assuming immigrants' low levels of intelligence . Perceived discrimination has been shown to be associated with alcohol and substance use problems among immigrants in multiple studies . Furthermore, discrimination may be a barrier to seeking and accessing treatment for alcohol problems . In addition to acculturative stress and discrimination, the patterns of alcohol use among immigrants may be shaped by other types of stress and stressors, which occur across populations. Stress is a complex, multidimensional concept that has been described elsewhere . In a nutshell, social environments expose people to different sources and types of stress which are intertwined. Stressful life events were recognized early on as a key source of social stress . Recent research indicates that stressful life events may promote either healthy or unhealthy alcohol consumption . Other aspects of social stress include chronic, contextual, and traumatic stressors. Perceived overall stress has been linked with a greater risk of alcohol use disorder in men, but it has been associated with lower alcohol consumption among women . While negative stress and stressors are risk factors for alcohol problems, social integration and ethnic identity can be protective. For example, having a perception of high social support reduces psychological distress and buffers the impact of stressful events and can reduce the nativity effect on substance use disorders , but immigrants may have less social support than US-born individuals. Other research shows that immigrants tend to have better psychosocial outcomes when they receive help, encouragement, and tangible support resources in the host society . Furthermore, ethnic identity, which includes knowledge about one's ethnic group, emotional significance of group membership, and commitment to the ethnic group , has been positively correlated with lower rates of substance use in some studies . Researchers argue that ethnic identity extends the concepts of race and ethnicity, which are often static, assigned categories . In addition to the mechanisms noted above, alcohol use and treatment patterns are shaped by sociodemographic and economic factors. Alcohol use and dependency are highest among young adults, with declining rates of abuse and dependence at older ages, and men are consistently more likely than women to use, abuse, and be dependent on alcohol . Furthermore, the patterns of drinking and alcohol treatment have been linked with education, income, and employment as well as religiosity . Alcohol consumption also varies by geographic location . These different social correlates of drinking and alcohol treatment-seeking should be taken into consideration when studying immigrants because the distribution of these factors varies across US immigrant and racial-ethnic groups . --- Study Aim and Hypotheses Past research shows that the patterns of alcohol use/abuse and treatment-seeking vary by nativity and racial-ethnic background. However, many past studies have not been able to account for the many potential explanatory factors such as acculturation, stress/stressors, and social ties. The aim of this study was to describe variations in alcohol use/abuse and treatment-seeking among immigrants based on racial-ethnic background while accounting for the known explanatory factors. In pursuing this aim, several key hypotheses were derived from the conceptual framework and posited as follows. Based on the past theory and research, we expected the foreign-born population to have lower rates of alcohol use/abuse and treatment-seeking than the US-born population, but some racial-ethnic variations were also expected. Specifically, immigrants from Westernized regions were expected to have similar rates of alcohol use/ abuse and help-seeking as US-natives because of similar drinking and help-seeking cultures and similar access and barriers to treatment. On the other hand, immigrants from more traditional cultures and developing societies were expected to have lower rates of alcohol use/abuse and help-seeking because of more prohibitive drinking cultures vis-à-vis the West and more structural and cultural barriers to treatment. In addition to racial-ethnic variations among immigrants, we hypothesized that length of time in the US would be associated with the likelihood of immigrants using alcohol, using alcohol in a risky manner, and having an alcohol use disorder. At the same time, length of time was expected to be positively associated with seeking treatment by immigrants because of their increased knowledge of the US health care system and treatment options. Furthermore, we hypothesized, based on past theory and research, that acculturation, racial-ethnic identity, social ties, and stress factors would explain some of the race-ethnicity and nativity-based variations in the patterns of alcohol use/abuse outcomes and treatment-seeking, even after adjusting for the known sociodemographic correlates of alcohol use/abuse and treatment-seeking. --- METHODS --- Data The National Epidemiological Survey on Alcohol and Related Conditions is the primary source of recent longitudinal data on alcohol use, alcohol disorders, and treatmentseeking for alcohol problems among US adults . Wave 1 of the NESARC was conducted with one randomly selected person from each household/group quarter in a faceto-face, computer-assisted personal interview . A total of 34,653 cases were re-interviewed at Wave 2 . NESARC sampling procedures included oversampling of non-Hispanic Black and Hispanic households, and within households it oversampled 18 to 24 year olds. The NESARC provides sample weights to adjust for its complex sampling design and non-response at the household-and person-level. We used the published sampling weights and sampling design information to adjust the estimation results for these issues using STATA svy procedures. --- Measures Most of the measures described below were measured at Waves 1 and 2. The exceptions are social network size, level of social support, acculturation, perceived discrimination, and perceived stress, which were only measured at Wave 2. Dependent variables-The NESARC includes an extensive set of questions about the use of alcohol during the last 12 months. These include whether respondents used alcohol, number of days they drank, number of drinks they usually had when they drank, and how often they binge-drank . We used these data to create binary measures of alcohol use and risky alcohol use in the last 12 months. Risky alcohol use was defined as: for men, binge drank, or drank 14+ drinks in a week , or drank 4+ drinks on days they drank; and for women, binge drank, or drank 7+ drinks in a week , or drank 3+ drinks on days they drank . The NESARC also includes questions that can be used to construct clinical DSM-IV diagnoses for alcohol use disorders. We combined three categories of disorders occurring during the last 12 months identified in the NESARC -alcohol abuse only, alcohol dependence only, and alcohol abuse and dependence -to create a binary indicator for any alcohol use disorder. The diagnoses of abuse and dependence had to be combined due to a limited number of cases in each of these categories. To assess treatment-seeking for alcohol use problems , respondents were asked one item -whether they sought treatment for alcohol use problems such as seeing a physician, counselor, Alcoholics Anonymous, or any community agency or professional in the last 12 months. Independent variables-Nativity or foreign-born status is an indicator of whether the respondent was born in or outside the US. We also measured two immigrant characteristics: number of years lived in the US and refugee status. For US-born respondents, years in in the US are coded equal to their age, and refugee status is coded zero . Race-ethnicity was measured based on self-reported information of the respondents' race and ethnicity . NESARC respondents reported 59 different racial-ethnic origins. Given that some groups have small cell sizes, we used six racial-ethnic origin categories: African, European, Asian/Pacific Islander, Mexican, Puerto Rican, and other Hispanic/Latino. We excluded other or unknown race-ethnicities due to too few observations. Social network size was assessed by using the Social Network Index . The measure is the summed total number of the following people respondents see or talk to on the phone or via internet at least once every two weeks: grown children 18 or over; respondent's living parents; respondent's spouse or partner's living parents; other relatives the respondent feels close to; close friends; fellow students or teachers that they see socially ; co-workers that they see socially ; neighbors; people at organizations that respondent volunteers at; and, people at any other volunteer groups. Social support was measured with the Interpersonal Support Evaluation List . The scale has twelve questions on how true it is respondents could find someone to help them or join them in a variety of situations, including such things as: go on a day trip with them; share their private worries and fears; help with daily chores if sick; go to a movie; look after house when away on trip; get advice from in case of family crisis; and, help in moving into new house or apartment. Applying factor analysis, we created a scale of level of social support . We constructed two measures of acculturation: the language and social preference scale and the race-ethnic orientation scale, which were based on two existing scales: the Brief Acculturation Rating Scale II , developed and validated for Mexican Americans and the East Asian Acculturation Measure , developed for and evaluated among East Asian Americans . In the NESARC, questions for the eleven-item scale were asked separately of Hispanics, Asian and Pacific Islanders, and those of another ethnicity. Seven questions on language preference asked respondents about which language they: generally read and speak; spoke as a child; usually speak at home; usually think in; usually speak with friends; of TV and radio programs they usually listen to; and, of movies, TV, and radio programs they prefer to watch/ listen to. Response categories for the seven questions use a five-point scale: only non-English language; more non-English language than English; both equally; more English than non-English language; and, only English. The four questions on social preferences asked respondents about the race-ethnicity of their close friends, people at the social gatherings and parties they prefer to attend, the people they visit with, and their children's friends if they could choose. The response categories to these questions for Hispanic, Asian, or Pacific Islander respondents were tailored to their specific race-ethnicity. The pattern of possible responses was the same for all respondents and coded as: all from my racial-ethnic group, more from my racial-ethnic group than other racial-ethnic groups, about half and half, more from other racial-ethnic groups than from my racial-ethnic group, and all from other racial-ethnic groups. We used factor analysis to generate the language and social preference scales . The measure of race-ethnic orientation drew on eight questions adopted from past scales . The questions asked how strongly the respondents agree or disagree that: they have a strong sense of self as a member of their racial-ethnic group; they identify with other people from their racial-ethnic group; most of their close friends are from their racial-ethnic group; racial-ethnic heritage is important in their life; they are more comfortable in social situations where others are present from their racial-ethnic group; they are proud of their racial-ethnic heritage; their racial-ethnic background plays a big part in how they interact with others; and, their values, attitudes, and behaviors are shared by most members of their racial-ethnic group. The scale's Cronbach's alpha was .79. Higher values on the measure indicated less identification with one's own racial-ethnic group, reflecting greater acculturation and assimilation. Perceived racial-ethnic discrimination was based on the Experiences with Discrimination scales . The six questions on racialethnic discrimination ask about how often respondents experienced discrimination related to their race or ethnicity in a variety of situations during the last 12 months. These include experiencing discrimination in: their ability to obtain health care or health insurance; in how they are treated when they got health care; in public ; in any other situation ; and, being called a racist name and being made fun of, picked on, pushed, shoved, hit or threatened with harm because of their race-ethnicity. All NESARC respondents were asked these questions, though the question phrasing was more specific to type of race or ethnicity for respondents who were Hispanic/Latino or Asian/Pacific Islander. We used factor analysis to construct a measure of perceived racial-ethnic discrimination . Stressful life events was measured based on the number of the following events respondents reported experiencing in the last 12 months: moving/having someone new join household; being fired/laid off; being unemployed/looking for a job; trouble with boss/coworker; changes in job/job responsibilities; marital separation/divorce/breakup; serious problems with neighbor/friend/relative; financial crisis; serious trouble with police/law; victim of theft; intentional damage to their property; death of family member/close friend; victim of assault/attack/mugging; and, family members/close friends having serious trouble with police/law. Included in the NESARC is a set of four questions that provide a measure of perceived stress in the last 12 months . The four-item perceived stress scale is intended to assess the cognitively mediated emotional response to objective stressful events and not the objective life events themselves. The questions asked how often in the last 12 months the respondents felt: they were not able to control important things in life; they were confident about ability to handle personal problems; things were going their way; and, difficulties were piling up so high that they could not overcome them. We factor-analyzed the scores and constructed a continuous measure of perceived stress . The analysis also included other sociodemographic and health-related variables known to be associated with alcohol use/abuse and help-seeking including age, gender, marital status, number of children, education, employment status, household income, health insurance, religious activity, physical limitations, region, and community type. --- ANALYTIC APPROACH To address the issue non-response to the second wave survey, we employed the weighting procedure and reweight the data as suggested by Moffitt and colleagues and Wooldridge . The test they propose shows that failing to reweight the data would lead to bias due attrition . Furthermore, analyses included largely questions restricted to those who have used alcohol in the last year. We attempted to control for this additional selection issue by estimating bivariate probit models with sample selection. Also, we conducted separate analyses for men and women because prior research has shown that men and women have very different drinking patterns, with men drinking considerably more than women. The exception is treatment-seeking, where we combined men and women because there were few people who actually sought treatment. Per conceptual framework and past literature, our analysis focused on describing variations in alcohol use/abuse and treatment-seeking outcomes by nativity and racial-ethnic origin while accounting for acculturation, stress/stressors, and social ties , as well as sociodemographic correlates previously linked to these behaviors. To that end, the analysis proceeded in several steps. First, we examined the distribution of the outcome variables according to nativity, racial-ethnic origin, and gender. Next we estimated unadjusted and adjusted bivariate probit models predicting the alcohol use/abuse and treatment-seeking outcomes. The baseline model included three key predictors --origin, foreign-born status, and years in the US. The initial adjustment included sociodemographic factors; the final adjustment included sociodemographic and substantive factors. --- FINDINGS The means for the outcome variables by nativity, refugee status, and origin for men and women indicated that men were more likely to drink, use alcohol in a risky manner, have an alcohol use disorder, and seek treatment . For both men and women, immigrants were less likely to drink, drink in a risky manner, have an alcohol disorder, or seek treatment than non-immigrants. Refugee status was not particularly important for women, but male refugees tended to drink less and were less likely to seek treatment than non-refugee immigrants. Origin was an important determinant of drinking, risky drinking, and alcohol use disorder for both men and women. Origin was also statistically significant for treatment-seeking for women but not for men. Below we describe the bivariate and multivariable results regarding the associations between nativity, racial-ethnic origin, and the alcohol use/abuse and treatment-seeking outcomes. --- Any Alcohol Use Table 1 shows results by nativity and origin for both men and women. For women, except for women of African descent, immigrants were less likely to drink, drink in a risky manner, or have an alcohol use disorder than non-immigrants, although sample size issues might have affected the level of significance for alcohol use disorder. However, immigrant women from Western Europe were more likely to drink than West European non-immigrants. Immigrant status was somewhat less important for men; there were fewer instances where immigrant status was statistically significant. The main exception was that immigrant status among men of African descent was more strongly associated with drinking than it was for women, and less strongly associated for men of Puerto Rican and other Hispanic/Latino origins. Table 2 shows results of a probit model of alcohol use for women and men, respectively. For both men and women, origin and foreign-born status were statistically significant, regardless of what control variables were included in the model, although adding more controls reduced the estimated point estimates. Women of East-European descent had the highest rates of drinking, while women of Asian/Pacific-Islander and African origin had the lowest rates. Men of East-European and Mexican origin had the highest rates of drinking. The coefficients for foreign-born status show how much more/less a person was likely to have used alcohol relative to a non-immigrant of the same nativity. Except for West Europeans and other Hispanic , the signs of the immigrant coefficients were consistently negative and usually statistically significant. The estimated effects were especially large for Asian and Mexican female immigrants and for African, Asian/Pacific-Islander, and East European male immigrants. The effects of years in the US were positive, indicating that immigrants become more like the natives the longer they are in the US. The effects were significant for West European male and female immigrants, Mexican and other Hispanic female immigrants, and African and Asian/Pacific-Islander male immigrants. For women, the significance of level for years in the US tended to improve as more controls were added to the models. --- Risky Alcohol Use Table 3 displays results for models of risky drinking and are restricted to women and men who drank in the past year. The models were estimated as bivariate probit selection models which incorporate the decision to drink when estimating the coefficients for the risking drinking portion of the model. Note that the estimated values of rho were usually statistically significant, indicating that estimation of the risky drinking portion of the model as a single equation model would have led to biased estimates of the coefficients in the model of risky drinking. As expected, the estimates of rho tended to decline as more control terms are added. Although the joint test for the significance of origin and foreign-born status were generally statistically significant for both men and women, and were largely unaffected by the addition of more control variables, the effects were concentrated among a few coefficients. For women, the effects were dominated by being of African descent and Asian/Pacific-Islander immigrants . For men, the effects were dominated by being of African descent and Asian/Pacific-Islander and African immigrants . None of the other terms were statically significant. --- Alcohol Use Disorder Table 4 displays results for models of having an alcohol use disorder. For this outcome, the joint significance of origin tended to decline as more control variables were added. With the addition of the substantive controls origin was no longer significant for men or women. For both men and women, the effect of immigrant status was negative. The likelihood of having an alcohol use disorder was higher for women of Mexican descent. Note that the estimate of rho was non-significant in the final models. --- Treatment-Seeking Table 5 displays results for a model of treatment-seeking. As more control variables were added to the model, the significance of the origin terms became non-significant. The significance of the immigrant coefficient and of rho increased .10 . Thus, these results are only suggestive of a negative impact of immigration on seeking treatment for alcohol problems, and indicate that there are no effects of origin on treatment seeking. Table 6 expands on the results shown in Table 5 for treatment-seeking by including indicators of whether a respondent was a risky alcohol user and whether they have an alcohol use disorder as predictors of treatment-seeking, and interactions of these terms with immigrant status. In general, we expected those with alcohol problems to be more likely to seek treatment. The estimation problem is that these alcohol behaviors are endogenous with respect to treatment-seeking. Because the results in Table 5 indicated that estimation of treatment-seeking on the subsample of respondents who used alcohol in the last 12 months did not introduce significant sample selection bias, if the full set of control variables were employed, we could estimate a bivariate model that included the decision to use alcohol in a risky way or having an alcohol use disorder as part of the model. 6 displays a model that includes risky alcohol use and the interaction of risky use with immigrant status. These results indicate that risky alcohol use was not related to seeking treatment. The second column displays a model that includes alcohol use disorder diagnosis and its interaction with immigrant status. These results indicate that having an alcohol use disorder was positively and strongly associated with seeking treatment. They also indicate that immigrants were less likely to seek treatment, but that immigrants with an alcohol use disorder were no less likely to seek treatment than nonimmigrants since the combined effect of immigrant status with the immigrant alcohol use disorder interaction is essentially zero. In none of the models was origin statistically significant. --- The first column of Table --- Effects of Sociodemographic and Substantive Factors We also examined the effects of the other variables included in the models . For alcohol use, age, not working, greater religious activity, and personal life social stress were negatively associated for both men and women, while education, physical disability, income, stressful life events, and race-ethnic orientation were positively associated for both men and women. For men only, alcohol use was negatively associated with never being married, having more children, perceived discrimination associated with health, and control over social stress. It was positively associated with perceived discrimination over other issues. For women only, alcohol use was negatively associated with the number of close ties, and positively associated with never married, cohabiting, English language preference, and preferring one's own racial or ethnic group socially. For risky alcohol use, age, greater education, and greater religious activity were negatively associated, and cohabiting, never married, and stressful life events were positively associated for both men and women. For men only, preferring one's own racial-ethnic group socially and having an own race/ethnic group orientation were negatively associated with risky alcohol use, while having more close ties was positively associated. For women only, having more children was negatively associated with risky alcohol use, while having a physical disability was positively associated. For the alcohol use disorder diagnosis, age, having health insurance, having a mental disability, and greater religious activity were negatively associated, and cohabiting, never married, stressful life events, English preference, and social stress over control over life were positively associated. For men only, having more children and social support were negatively associated with having an alcohol use disorder, while living in the West was positively associated. For women only, college degree, not working, preferring one's own racial-ethnic social group, and having an own race/ethnic group orientation was negatively associated with having an alcohol use disorder, while number of instrumental ties was positively associated. For seeking treatment, being female, college degree, and having a mental disability were negatively associated with seeking treatment. In contrast, cohabiting, stressful life events, and perceived social stress over control were positively associated with seeking treatment. As mentioned earlier, having an alcohol use disorder was also positively associated with seeking treatment. --- DISCUSSION Our findings paint a complex picture of relationships between racial-ethnic origin, nativity, and alcohol use/abuse and treatment-seeking outcomes. We found that the effects of origin, foreign-born status, and years living in the US were statistically significant for both men and women, for drinking and risky alcohol use, but that the effects were somewhat stronger for women than men. Although the point estimates and levels of significance declined as we added control variables, the effects remained significant for both men and women. People of European origin were the most likely to drink, as were males of Mexican origin, while females of African, Asian, and Puerto Rican origins were less likely to drink. Immigrants of Asian and African origins were less likely to drink compared to the same native-born groups, as were females of Mexican origin and males of European origin. For all groups, additional years in the US were associated with a higher risk of drinking. These results indicate that the effects of origin and foreign-born status were strong and largely unaffected even when we controlled for a large number of demographic and substantive variables thought to be related to both alcohol use and origin and immigration status. The findings for years in the US support the notion that immigrants become more like the native-born, or become more acculturated, the longer they are in the US. The major strength of the study is its reliance on nationally representative longitudinal data to be able to measure the timing of the outcomes. In addition, the study examines several alcohol use/abuse and help-seeking outcomes by race-ethnicity, nativity, and gender while accounting for a set of explanatory factors which have not been investigated simultaneously in previous studies. Furthermore, we were able to assess several complex concepts, such as acculturation, race and ethnicity, stress/stressors , and social ties, in a more detailed and comprehensive manner than done in many past studies. However, our study also had some limitations. For example, we could not address other potential correlates of origin, nativity, and alcohol use/abuse patterns, such as age at immigration or historical cohort . In addition, past studies have raised the issue of the potential for misdiagnosis of mental and behavioral disorders among minorities . In the NESARC, where data on alcohol use/abuse were obtained for all respondents in a standardized manner, it seems unlikely that the degree of misdiagnosis would differ based on origin or immigrant status. Nevertheless, due to cultural/language misunderstandings, this study may have underestimated alcohol use/abuse among ethnic/immigrant groups. Another limitation of this study was the definition of race-ethnicity. As noted above, broad racial-ethnic categories tend to mask cultural heterogeneity of individuals from different countries and cultures. It is also unclear to what extent members of the same ethnic group are similar and different in terms of acculturation modes. Acculturation modes may follow varying patterns . For example, seemingly negative ones may be protective against alcohol abuse and alcohol use disorders , while seemingly positive ones may not protect against prejudice and discrimination . In addition, race and ethnicity are intertwined with the cultural context in which people reside . Although this study assessed both racial-ethnic origin and racial-ethnic identity, other dimensions -such as feelings of belonging, cultural pride, or family-or community-based norms and valueswould provide more insights into the meaning of race and ethnicity and their associations with alcohol use and help-seeking behaviors . Furthermore, this study assessed only some types of social stress. In particular, the study did not address stress and trauma experienced before and during migration. Research has shown that adverse childhood experiences are associated with multiple substance use behaviors among emerging adult Hispanics in the US . Also, traumatic experiences, which are prevalent among refugees and other involuntary migrants, can predispose individuals to substance misuse and alcohol use disorders . These other types of stress may further explain variations in alcohol use/abuse and help-seeking based on nativity and racial-ethnic origin. Our analytic approach was also only one of potential strategies that one could take to understand the research problem at hand and the data. Specifically, our examination focused on estimating the patterns of alcohol use/abuse and treatment-seeking while accounting for multiple theoretical explanations, based on past theory and research. Our aim was to close a research gap, as earlier studies have typically been unable to address a fuller range of explanatory factors. However, including a large number of independent variables in regression modeling can be problematic and sometimes lead to model overfitting . The strength of our analysis was that it was theoretically-driven and that we employed strategies to guard against overfitting . Although we did what we could to minimize a risk of spurious findings, future studies should take alternative approaches and consider further means of guarding against overfitting . These limitations notwithstanding, the study results confirm and extend the past literature. Many studies have already examined alcohol use/abuse by Hispanic/Latino ethnicity and found both similarities and differences -depending on the alcohol-related outcome -by place of origin, acculturation as measured by nativity and years in the US, gender, and age . For example, among Mexican Americans, Puerto Ricans, and "other Hispanics" in one study, women were more likely to abstain from alcohol while men were more likely to report frequent heavy drinking . Gender roles are likely to contribute to differences in alcohol use patterns between women and men, with traditional norms softening over time, as immigrant men and women accept the more permissible and gender-equal drinking culture of the US society . Furthermore, past research has specifically examined nativity as a factor in alcohol use/ abuse and alcohol use disorders using the first wave of the NESARC data . The prevalence of clinical alcohol abuse/ dependence, excessive drinking, and incidence of intoxication were found to be significantly lower among US-natives compared to the foreign-born population. Other studies have also reported that US-born non-Hispanic whites were more likely to abuse or be dependent on alcohol compared to US-born or foreign-born Mexican Americans , but nativity was found not to be a factor when comparing US-born and island-born Puerto Ricans and US-born and "other Hispanics/Latinos" . The current study adds to the existing knowledge by drawing on longitudinal data, a larger number of racial-ethnic categories, and a wide range of social correlates. In terms of ethnic groups for which data have so far been limited, we found that people of African origin were less likely to display risky drinking and that immigrants of Asian origin were less likely to display risky drinking than native-born of Asian origin, as were males of African origin. Earlier studies reported lower alcohol use among African and Asian immigrants compared with their native counterparts . In our study, we were able to further confirm that the effects of origin and foreign-born status on problem drinking in these groups were strong and largely unaffected even when we controlled for a large number of demographic and substantive variables thought to be related to both alcohol use and origin and immigration status. However, it should be noted that Asians are a heterogeneous group and their alcohol use patterns vary by country of origin , something that we were unable to investigate in more detail. Our study also revealed more information in regard to alcohol use/abuse and treatmentseeking outcomes. Specifically, for these outcomes, the statistical significance of origin became non-significant as more control variables were added, but foreign-born status remained significant and negative. These results suggest that foreign-born status remained an important predictor of both alcohol use disorder and treatment-seeking, independent of origin. Importantly, we found that the effects of alcohol use disorder were significant and positive for seeking treatment and for the interaction of seeking treatment and foreign-born status. Specifically, our study indicates that while immigrants are less likely to seek treatment than natives, they are no less likely to seek treatment if they are abusing or are dependent on alcohol. The challenge for alcohol treatment services for minorities and immigrants then lays in the need for culturally-sensitive approaches that include an understanding of specific ethnic contexts . In addition to origin and foreign-born status, we found that a number of important substantive controls were also associated with patterns of alcohol use/abuse outcomes. Especially notable is that stressful life events was significant and positive for both men and women for all four outcomes. The association between stressful life events and substance use/abuse is well established . Our study confirms this relationship for nativity and racial-ethnic groupings by gender and while controlling for other potential correlates. In addition, in our study, acculturation, social network, stress, and discrimination factors were also associated with alcohol use/abuse outcomes, but the associations varied by gender. Furthermore, the two dimensions of discrimination -in health care and in other domains -had inconsistent associations. Specifically, for men, perceived discrimination in other domains was positively associated with alcohol use/abuse, while discrimination in health care was negatively associated. These findings are not a total surprise. Earlier research has examined the relationship between discrimination and alcohol and drug use disorders among Latinos and found a positive association, but, as in our study, the relationship varied by gender, nativity, and ethnicity. More research is needed to disentangle all these complex patterns. Despite the many unanswered questions, our study helps to build further knowledge about alcohol use/abuse and treatment-seeking in racial-ethnic minority and immigrant populations. This information can guide prevention and treatment strategies for minorities and immigrants. For example, intervention programs focusing on cultural competence among service providers and programs/policies addressing stress affecting immigrants at the individual and social levels could help immigrants to cope with stressors and prevent unhealthy alcohol use . More research is also needed to guide health services and policy interventions. In particular, there have been calls -per socio-ecological framework -for integrating micro-level , meso-level , and macro-level cultural factors via multilevel analyses to better understand the complex influences of race, ethnicity, nativity, and culture on behaviors including substance use . Assessing the cultural context should go beyond individual perceptions and include census data on neighborhood composition, analyses of local policies and the history of intergroup relations, as well as data on education, employment, and housing opportunities available to various groups . Future research should also investigate the mediating mechanisms underlying the relationship between origin, nativity, and alcohol use/abuse and treatment-seeking, as well social norms and attitudes among specific racial-ethnic groups. The former may be accomplished by examining the available secondary data with advanced mediation procedures . The latter could be addressed through in-depth, context-specific explorations of ethnic drinking and help-seeking cultures. --- Supplementary Material Refer to Web version on PubMed Central for supplementary material. ---
We used data from Wave 1 and Wave 2 of the National Epidemiological Survey on Alcohol and Related Conditions to examine racial-ethnic and nativity-based variations in alcohol use/abuse and treatment-seeking while accounting for acculturation, stress, and social integration factors. The dependent variables included alcohol use, risky drinking, DSM-IV alcohol use disorder, and treatment-seeking in the last 12 months. Racial-ethnic categories included: African, European, Asian/Pacific Islander, Mexican, Puerto Rican, and other Hispanic/Latino. Acculturation, social stress, and social integration were assessed with previously validated, detailed measures. Bivariate probit models with sample selection were estimated for women and men. Immigrant status and origin associations with alcohol use/abuse and treatment-seeking were strong and largely unaffected by other social factors. Europeans and men of Mexican origin had the highest while women of African, Asian/Pacific-Islander, and Puerto Rican origins had the lowest rates of alcohol use/abuse. Years in the US were associated with a higher risk of alcohol use/abuse for all immigrant groups. Foreign-born were no less likely than US-natives to seek treatment if they were abusing or were dependent on alcohol. Further modeling of these relationships among specific immigrant groups is warranted. These findings inform alcohol rehabilitation and mental health services for racial-ethnic minorities and immigrants.
Introduction Evidence from low and middle income countries worldwide shows that health outcomes and access to key services are unevenly distributed across different subgroups of the population. Children from socioeconomically disadvantaged households have higher mortality rates and lower coverage of key services than children from more affluent households [1][2][3][4]. Geographic factors such as region of residence and distance to health facilities also influence mortality rates and coverage of health services [5][6][7][8]. The majority of child deaths occur from causes that are easily prevented or treated; they are therefore unnecessary and may be considered unfair [9]. Inequalities across socioeconomic groups are generally considered to be unfair, but the standardly reported measures of mean levels of health and health service coverage in the population do not tell us enough to assess the overall distribution. There is therefore a need to go beyond averages measures [10,11]. An increase of the mean level of health and coverage may be accompanied by decreasing inequalities across the population [12], but an improvement of the mean level may also be associated with increasing inequalities [13,14]. Policy makers may be willing to trade off equality against improvements of the mean level; a small increase of inequality may be acceptable if the mean increases, while a small increase of the mean and a large increase in inequality is not acceptable. It is therefore important to monitor health and access to key services, as well as the distribution of these in the population in order to develop and evaluate policies aimed at health and reducing inequities in health. The per capita health expenditure in Ethiopia has increased substantially since 2000. The World Health Statistics published by the World Health Organization estimates that the total per capita health expenditure in 2000 was 20 $ int. PPP, of which 11 were government expenditures [15]. In 2010 the total health expenditure per capita has increased to50 $ int. PPP, of which 26 were paid by the government. In 2003 the Ethiopian government started the implementation of the Health Extension Programme to increase primary health care coverage on the community level. This is the basic level of health care in Ethiopia, consisting of one health post and two associated health extension workers. On average, one health post serves a Kebele of 5000 inhabitants. The goals of this programme include improving access to key preventive and curative health services for everyone, with a special focus on maternal and child health [16]. According to the WHO's African Health Observatory, the under-five mortality rate in Ethiopia decreased from 198 to 77 deaths per 1000 live births from 1990 to 2011, corresponding to an annual rate of reduction of 4.5 per cent [17]. Over the same period improvements are also seen for key services such as coverage of measles vaccinations for one-year-olds, increasing from 38 per cent to 57 per cent. However, coverage of key services in Ethiopia remains among the lowest in Africa, as seen in skilled birth attendance, where Ethiopia has the lowest coverage of all the countries included in the African Health Observatory. Child health outcomes and access to essential maternal and child health services are not equally distributed across all parts of the Ethiopian population. Studies have shown regional differences in coverage for maternal and child health services, and the services are more likely to be used by mothers with formal education, those living in urban areas and the richer parts of the population [18][19][20][21]. Hosseinpoor et al. found substantial wealth-related inequalities in coverage for several maternal and child health services in Ethiopia [22], and a study on the trends and determinants of neonatal mortality in Ethiopia finds, among other factors, the mother's level of education and region of residence to be associated with the probability of survival [23]. To develop policies aiming at reducing inequality in health outcomes and access to key services, it is important for policy makers to better understand the existing inequalities. There is limited evidence on the combined trends in level and distribution of child health and the underlying factors, that is, information that is necessary to address these challenges in a national context. The objective of this study is to describe the combined level and distribution of coverage for key child health services and outcomes in Ethiopia, and to analyse their association with socioeconomic and geographic determinants. --- Methods --- Data and variables Data were obtained from the Ethiopian Demographic and Health Surveys conducted in 2000, 2005 and 2011 [24][25][26]. These surveys are nationally representative, with sample sizes of 14072, 13721 and 16702 households respectively. For the respective surveys, information was collected on 10873, 9861 and 11654 children. Six different indicators capturing health outcomes and preventive and curative key services were selected for the analysis: Under-five deaths, neonatal deaths, coverage of skilled birth attendance, coverage of basic vaccinations, coverage of oral rehydration therapy for diarrhoea and coverage of antibiotics for suspected pneumonia. Under-five and neonatal deaths are defined as the proportion of live born children who die before the age of five years and four weeks respectively. Skilled birth attendance is defined as the proportion of women reporting that they were assisted by a doctor or a nurse during delivery. Vaccination coverage is defined as the proportion of children aged 12 to 23 months who, at the time of the survey, had received the following vaccines: three doses of DPT, three doses of polio, BCG and measles. Treatment for diarrhoea and suspected pneumonia is defined as the proportion of those reporting symptoms in the past two weeks who have been given oral rehydration therapy and antibiotics respectively. The data from the DHS are complimented by the 2007 Population and Housing Census of Ethiopia to obtain population data [27]. --- Geographic inequality The degree of geographic inequality was measured for each of the health indicators in 2011 by what we call the geographic Gini index. The Gini index is closely related to the Lorenz curve, which plots the cumulative proportion of the outcome variable against the cumulative proportion of people ranked by the outcome. The Gini index is defined as twice the area between the Lorenz curve and the diagonal line, called the ''line of equality''. The geographic Gini index was calculated for each of the indicators in 2011 based on each region ranked from worst to best achievement of the indicator, and weighed by population size, using the following formula [28]: G~2 m X T t~1 m t |f t |R t {1ð1Þ Where m is the mean of the health variable in the entire population, T the number of groups, m t the mean of the health variable in the t th region ant f t its population share. R t is the relative rank of the t th region ranked by the health variable. --- Socioeconomic inequality The degree of socioeconomic inequality for each of the indicators in 2011 was quantified by the concentration index. The concentration index is analogous to the Gini index, but uses a measure of socioeconomic status for ranking the observations. The concentration index is related to the concentration curve, which plots the cumulative proportion of the outcome variable against the cumulative proportion of the population ranked by a measure of socioeconomic status [28,29]. The DHS does not contain data on household income or consumption, but the dataset contains a wealth index which was used as a measure of socioeconomic position. This index is calculated by principal component analysis, based on information on household assets and household characteristics [30]. The concentration index equals twice the area between the concentration curve and the line of equality, and for a health variable y it can be expressed as follows [28]: C~2 n|m X n i~1 y i |R i {1ð2Þ Where C denotes the concentration index, n is the number of observations, m is the mean of the health variable y, and R is the fractional rank of the individuals by the household's socioeconomic status. The concentration index takes a value between 21 and 1. By convention, the concentration index will take a positive value if the variable in question is more prevalent among the rich, and conversely, a negative value if the variable is more prevalent among the poor. If there is no socioeconomic inequality, the concentration index will take the value 0. --- Decomposition of the concentration index The concentration indices of the health indicators in 2011 were decomposed in order to determine the contribution of different factors to the overall socioeconomic inequality. The factors included in the decomposition analysis were: mother's education, region of residence, and household's wealth. The factors were chosen on the basis of the conceptual framework used by the WHO and the Commission on Social Determinants of Health [31]. Education was included as a continuous variable, corresponding to the numbers of years of schooling the respondent reported having completed, ranging from zero to eight years. The household's wealth was included as a continuous variable, using the wealth index estimated by the DHS. The 11 regions were included as binary variables in the analysis, with one region chosen as reference on the basis of progress towards the United Nations fourth Millennium Development Goal. The United Nation's fourth Millennium Development Goal calls for a reduction of the under-five mortality by two thirds from 1990 to 2015, which for Ethiopia signifies a reduction from 204 to 68 deaths per 1000 live births over this period. The capital region, Addis Ababa, had already reached this goal in 2011 with 53 deaths per 1000 live births according to the estimates done by the DHS [26], but as this region is not representative for the country, it was not chosen as reference region. The region, apart from Addis Ababa, that is closest to achieving the Millennium Goal is Tigray, with an underfive mortality rate of 85 per 1000 live births. The Tigray region was therefore selected as a reference region for the analysis. The decomposition of the concentration index has been explained in detail elsewhere [29,32]. In summary, a decomposition of the concentration index links the different indicators of child health to a set of K determinants, x 1 , …, x k , by linear regression: y~az X K k~1 b k x k z"ð3Þ Where y is the indicator in question and e is an error term. Given the relationship between y i and x ki in equation , we get: C~X K k~1 b k x k m C k z GC e mð4Þ Where C is the concentration index, b k is the regression coefficient in equation , is the mean of the determinant k, m is the mean of the outcome variable y and C k is the concentration index of the determinant k. The last term is the unexplained part calculated as a residual, where GCe is the cumulative concentration index of the error term. Equation is basically made up of two components, the explained component giving the contribution of each determinant, and an unexplained component or residual. However, this method is developed for continuous outcomes where linear regression is appropriate, and does not allow for binary outcome variables that require non-linear regression models. Van Doorslaer et al. proposed a modification of the standard decomposition method for use in non-linear situations [33]. They propose a probit regression followed by estimation of the marginal effects for each of the explanatory variables evaluated at the sample's mean. The marginal effects go into equation ( 4 --- The health achievement index The mean level of the indicator and the distributional pattern of the indicator, as estimated by either the concentration index or the geographic Gini index, can be combined into an index of health achievement. The health achievement index was calculated for the socioeconomic distribution of all indicators in 2000, 2005 and 2011, using the following formula [34]: I~mð5Þ Where I is the health achievement, m is the mean of the health variable and C it's concentration index. --- Time trends The mean level, concentration index and health achievement index were estimated for all indicators in 2000, 2005 and 2011. The change in the mean level was assessed by logistic regression, with the indicator in question as dependent variable and the time of the surveys as independent variable. All statistical analysis was performed using STATA IC version 12.0, taking the sample design into account. --- Results --- Descriptive statistics Summary statistics of the 2011 indicators as well as a breakdown by maternal and household characteristics is provided in Table 1. The neonatal and under-five mortality, as reported by the DHS, was 37 and 88 per 1000 live born children respectively [26]. The proportion of women giving birth assisted by a skilled birth attendant was 10 per cent. 24 per cent of the children aged 12-23 months at the time of the survey had received all basic vaccinations. 30 per cent of the children who reported cases of diarrhoea in the two weeks preceding the survey had been given oral rehydration therapy, and 11 per cent of the children with suspected pneumonia in the two weeks preceding the survey had received antibiotics. The level of coverage and mortality differed according to wealth quintile, level of mother's education and region of residence. --- Geographic inequality The geographic Gini indices estimating the inequality between the regions can be found in Table 1. The geographic Gini indices ranged from 0.047 2 0.10) for under-five deaths to 0.33 20.70) for skilled birth attendance. Figure 1 displays the geographic Lorenz curve for under-five deaths and skilled birth attendance. --- Socioeconomic inequality The concentration indices for each of the indicators in 2011 can be found in Table 1. For all indicators except treatment for suspected pneumonia, the concentration indices were significantly different from zero at a 95 per cent significance level. The absolute values of the concentration indices were above or equal to 0.10 for all indicators. The lowest degree of socioeconomic inequality was respectively. The indicator revealing the largest degree of socioeconomic inequality was skilled birth attendance, with a concentration index of 0.65 . For under-five and neonatal deaths, the concentration indices were negative, indicating that a disproportionate fraction of these deaths occurs in children of poor families. The concentration indices for coverage of skilled birth attendance, vaccinations, oral rehydration therapy for diarrhoea and antibiotics for suspected pneumonia were positive; these services were therefore more prevalent among the wealthier part of the population. Figure 1 displays the concentration curve for under-five deaths and skilled birth attendance. --- Decomposition analysis The results of the decomposition of the indicators' concentration indices in 2011 are presented in Table 2 and graphically in Figure 2. The wealth factor alone accounts for the majority of the explained inequalities for all indicators, with a contribution ranging from 13.6 per cent of the total inequality in neonatal deaths to 84.8 per cent for coverage of basic vaccinations. The percentage contribution of wealth in the decomposition analysis is an estimate of the pure effect of wealth on the total inequality, adjusting for other relevant factors. Education accounts for a smaller proportion of the inequalities, with a contribution ranging from 5.1 per cent of the total inequality in skilled birth attendance to 24.6 per cent in treatment of suspected pneumonia. The proportion of the inequalities not explained by systematic variations in the explanatory variables is captured by the residual, the lowest is found for coverage of vaccinations where 6.4 per cent of the inequality is not explained by the model, and the highest is found for neonatal deaths with a residual of 73.8 per cent. --- Time trends The mean level, concentration indices and health achievement index for all variables in 2000, 2005 and 2011 can be found in Table 3. Since geographic inequality as measured here accounts for very little of the explained inequalities, we did not include a geographic achievement index. The mean of all indicators improved from 2000 to 2011. The concentration indices revealed increasing socioeconomic inequalities for under-five and neonatal deaths, and somewhat decreasing or unchanged inequalities for the remaining indicators. The health achievement index shows an improvement for all indicators except neonatal deaths. The change over time in mean level and health achievement is shown graphically in Figure 3. --- Discussion This study demonstrates the presence of geographic inequalities and pro-rich inequalities for all indicators in 2011. The major contributor to the observed socioeconomic inequality in access to key services and health outcomes is wealth. The mean level of all indicators improved from 2000 to 2011. Socioeconomic inequalities seem to decrease for most but not all indicators from 2000 to 2011, while the health achievement index shows improvement for all the indicators except neonatal deaths. Other studies have found mother's educational level, wealth and region of residence to be important determinants for child health and access to health services in Ethiopia [21][22][23], which is in line with this study. However, in this study a combination of different methods for assessing inequalities is used, which leads to a better and more nuanced understanding of the current situation and changes over time. Quantifying inequalities using the concentration index provides a useful tool for comparing the magnitude of the inequalities for different services, and for assessing the changes in inequality over time. The health achievement index, that incorporates socioeconomic inequality and the average level in the population into one metric, gives useful additional evidence to policymakers concerned with both of these aspects. Previous studies decomposing socioeconomic inequalities in child mortality and skilled birth attendance in low and middle income countries have found that the mother's education and wealth are the main contributors to overall socioeconomic inequalities [1,3,35]. The proportion of total inequality that is attributable to education is higher in these studies than the results of our study indicate. This may be explained by the low coverage of key services in Ethiopia. Few people have access to the services; it is therefore not unexpected that there are large disparities in access across the population and that wealth is the most important determinant for accessing key services. A review comparing inequalities in several low and middle income countries finds that the coverage in the lower wealth quintiles are subject to more variability than coverage in the richest quintile [4], suggesting that the richest part of the population have the means to receive needed services irrespective of how the country's health system is functioning. The lowest degree of socioeconomic inequality is found for neonatal deaths and treatment for suspected pneumonia. Wealth contributes to a comparatively smaller degree of the socioeconomic inequality for neonatal deaths than for the other indicator, and a large proportion of the inequalities is not explained by the decomposition. This might be due to the large impact of biological factors, health system factors and other factors that are not included in our model. Access to antibiotics for pneumonia was included as a binary variable indicating whether children presenting symptoms in the two weeks preceding the survey had received antibiotics. The weakness of this classification is that those who seek medical care, but for whom antibiotics are not needed, are classified as not having access to treatment. However, the alternative indicator measuring access to treatment of pneumonia by whether medical advice was sought, will not take account of the quality of the consultation or the availability of drugs. When decomposing inequalities in health outcomes and access to key services, the geographic determinants account for a relatively small proportion of the inequalities. The geographic determinants are included as regions, and one possible explanation of the relatively small contribution of the regions may be that the major part of the geographic inequality is due to factors on a more detailed level than the regional level that we measure, for example, walking distance to the closest health facility. A study from a rural area in north-western Ethiopia found that children who had more than one and a half hour travel time to the nearest health centre had a two-to threefold greater risk of dying before the age of five than children living within one and a half hour from the health centre [7]. A study from Burkina Faso reports similar findings [8]. Assessing whether the situation is improving for each of the indicators depends on the measure used. If one is only concerned with the mean level in the population, there has been a positive evolution for all indicators from 2000 to 2011. If one is only concerned with the distribution across socioeconomic groups, the results are more diverse, indicating increased inequality for some indicators and reduced inequality for others. This has been shown for several other countries as well [12,14]. However, we argue that it is crucial to achieve both a higher mean level and more fairly distributed health and coverage of key services. The health achievement index is a way of incorporating both of these concerns into one metric. The health achievement index improved for all indicators from 2000 to 2011, except neonatal deaths. This means that even where the concentration index is worsening, the increase in inequality is outweighed by improvement of the mean level. To date, few studies have combined the information available on coverage and on distribution into a single metric such as the health achievement index. A study from Nigeria uses the health achievement index to assess malnutrition, and emphasises the importance of including both inequality and the mean level, because subgroups of the population that do well in one dimension often do less well in the other dimension [36]. A study that uses the health achievement index to assess time trends in measles vaccination in 21 low and middle income countries finds both increasing and decreasing health achievement indices [13]. The changes in mean level, inequality and health achievement are assessed from 2000 to 2011 in our study. This corresponds to the time period when the Health Extension Programme was implemented [16]. The Health Extension Programme focuses on community based services, with the aim of improving health outcomes and coverage of key services and making key services universally accessible. Studies evaluating the impact of the Health Extension Programme in Ethiopia find that the programme has contributed to increased coverage of vaccinations, improved maternal and neonatal health care practices and improvement of health-promoting and care-seeking behaviour, but the programme does not seem to have impacted coverage of skilled birth attendance and postnatal care [37][38][39][40]. Our study has not assessed the effects of the Health Extension Programme, but the results of our study should be seen in relation to the implementation of the Health Extension Programme. This study is based on data from the Demographic and Health Surveys. These surveys are conducted in many low and middle income countries with standardised questionnaires. The surveys are nationally representative with a relatively large sample size. However, the estimates done by the Ethiopian Ministry of Health differ somewhat from the DHS' estimates for some indicators. For example, the 2011 report on health and health related indicators published by the Ethiopian Ministry of Health estimates measles coverage to be 82 per cent [41], whereas it is estimated at 56 per cent by the 2011 Ethiopian DHS [26]. There are several limitations to this study. First, the decomposition analysis is based on regression analysis with varying degree of statistical significance. The results of the decomposition analysis should therefore be interpreted with caution. Second, factors other than those incorporated into the models may exclude people from receiving health care. Supply side factors, such as the presence of health facilities, quality of care and the availability of drugs may be important reasons why people are not receiving needed health care. This is not fully accounted for in the model, although it is partly explained through the geographic inequalities. Demand side factors, such as cultural barriers, costs of receiving health care and time available to seek medical care, are not explicitly incorporated into the model due to data limitations. --- Conclusion Socioeconomic and geographic inequalities exist in the distribution of access to key services and health outcomes in Ethiopia. Wealth is the major determinant of socioeconomic inequality in child health, and there are widening inequalities for some of the indicators included in this study. However, the mean level of health outcomes and coverage of key services is improving, and the health achievement indices show improvements for all indicators with the exception of neonatal deaths.
Objective: In Ethiopia, coverage of key health services is low, and community based services have been implemented to improve access to key services. This study aims to describe and assess the level and the distribution of health outcomes and coverage for key services in Ethiopia, and their association with socioeconomic and geographic determinants. Methods: Data were obtained from the 2000, 2005 and 2011 Ethiopian Demographic and Health Surveys. As indicators of access to health care, the following variables were included: Under-five and neonatal deaths, skilled birth attendance, coverage of vaccinations, oral rehydration therapy for diarrhoea, and antibiotics for suspected pneumonia. For each of the indicators in 2011, inequality was described by estimating their concentration index and a geographic Gini index. For further assessment of the inequalities, the concentration indices were decomposed. An index of health achievement, integrating mean coverage and the distribution of coverage, was estimated. Changes from 2000 to 2011 in coverage, inequality and health achievement were assessed. Results: Significant pro-rich inequalities were found for all indicators except treatment for suspected pneumonia in 2011. The geographic Gini index showed significant regional inequality for most indicators. The decomposition of the 2011 concentration indices revealed that the factor contributing the most to the observed inequalities was different levels of wealth. The mean of all indicators improved from 2000 to 2011, and the health achievement index improved for most indicators. The socioeconomic inequalities seem to increase from 2000 to 2011 for under-five and neonatal deaths, whereas they are stable or decreasing for the other indicators.There is an unequal socioeconomic and geographic distribution of health and access to key services in Ethiopia. Although the health achievement indices improved for most indicators from 2000 to 2011, socioeconomic determinants need to be addressed in order to achieve better and more fairly distributed health.
Introduction It is widely acknowledged that the introduction of new technologies requires social learning processes, especially when this entails changes at a system level, as it is the case with new energy and transport technologies. A number of questions arise around issues such as the deployment of supporting infrastructures, the organisation of value chains, the institutional embedding and regulations concerning these new technologies or the development of new patterns of use. Relatively little attention has so far been given to the specific contexts and locations of such technology learning processes as well as to the processes of systematically identifying and selecting experiments and pilot projects at the municipal level. Hodson and Marvin have drawn attention to cities as important actors and mediators in technological transition processes. Some other authors have highlighted the specific potentials of the municipal level as a setting for early technology 730 A. Schreuer et al. learning processes. In this paper we investigate these potentials further by presenting results from a case study on the identification and assessment of municipal strategies and experiments in the area of fuel cell technology in Graz, Austria. By reporting and reflecting on a workshop series that was set up to discuss and assess potential contexts of fuel cell applications at the municipal level, we also address issues such as possible roles of the municipality in technology learning processes, tensions between differing rationales at different governance levels and a number of pragmatic issues that need to be taken into account in setting up niches for learning processes at the municipal level. The structure of the paper is as follows: The following section introduces the concept of constructive technology assessment , which was used as a reference framework for the process. Section 3 then addresses the specific potentials and challenges of the municipal level as a place for technology learning processes. The actual case study is presented in Section 4. Section 5 then both discusses the results from the workshop series and evaluates the chosen workshop format. Finally the conclusion draws together the most important points of the paper. --- Participatory technology development and assessment Transitions to more sustainable technology regimes are heavily dependent on processes of social learning. Social learning always plays a role in technological development since social players actively and sometimes unknowingly shape the design of new technologies. Moreover, new social practices around the use of new technologies have to be developed, institutional contexts have to be adjusted -in short, the development and implementation of technologies requires a co-evolution of social and technical elements. With sustainability as a somewhat vague but demanding and often controversial guiding vision, social learning processes become even more important. A number of concepts and methodologies have been developed to understand and facilitate social learning processes in ongoing technology developments. For our own work on the sustainability of fuel cell technology we have chosen the CTA approach as a methodological framework. Focusing on the potentials of fuel cells in local use contexts at the municipal level, CTA offers valuable insights on social learning processes and the importance of protected spaces for the management of sustainable transitions. The approach of CTA aims at broadening the decision-making process on technological development and considering impacts already during the development of the technology by bringing together a manageable variety of relevant parties. Designers, users, citizens as well as policy makers should be able to articulate ideas and values quite early and negotiate and renegotiate important aspects throughout the course of the technology development process . CTA seeks to open the design process at early and/or promising stages in order to learn about possible -negative as well as positive -impacts of the new technology before they become entrenched and possibly negotiate alternative development pathways. Schot has specified three general principles that define CTA activities. CTA should advance the capacity to anticipate impacts of future technology , it should improve the ability of social actors to consider technology design and social design as one integrated process , and it should enable societal learning. Designers, future users and other relevant social actors should have the opportunity to question their own presumptions and come to new specifications. While first-order learning refers to the ability to articulate user preferences Negotiating the local embedding of socio-technical experiments 731 and regulatory requirements and to connect such conclusions to design features, second-order learning means to question existing preferences and requirements in a more fundamental way, to reflect on the roles of various stakeholders and maybe to come up with quite different demands, radical design options or new application contexts . A specific approach to support technology learning processes within the framework of CTA is strategic niche management . SNM refers to the creation and nurturing of protected spaces for promising technology to facilitate ongoing interactive learning of the actors participating. A central aim of the development of niches is to learn in realistic use contexts about needs, problems and possibilities connected with the technology experimented with, and to help articulate design specifications, user-requirements or side-effects of the innovation. Managing the development of environmental technologies in niches involves organising social learning processes with actors such as producers, technology designers and users in a joint process. Niches have also been studied as local experiments at the municipal level , as examples of societal embedding or as 'bounded socio-technical experiments' . However, critical voices also emphasise that niches, such as passive houses, have rarely been set up or managed in a straightforward and planned way . Given the importance of niches for strategic learning processes about the context of application and use of new technologies such as fuel cells it is rather striking how little attention has so far been paid to the selection of such pilot applications. Not only should such niches be of long-term strategic importance for the transformation of urban infrastructures, but they should also link-up with the needs, competencies and expectations of local actors. This initial phase of identifying and selecting possible options for fuel cell pilot projects was at the centre of a project that will be presented in this paper. Informed by the basic ideas of SNM regarding the selection, preparation and set-up of niche experiments, a workshop series was organised where a variety of stakeholders first identified plausible application areas and then critically discussed requirements for pilot projects in these areas at the municipal level. Before presenting this case study the following section will briefly raise some general issues concerning the municipal level as a place for technology learning processes. --- Technology learning processes at the municipal level With respect to technology learning processes the municipal level certainly has specific potentials. Van den Bosch, Brezet, and Vergragt reporting on a case study on system innovation towards a fuel cell transport system in the city of Rotterdam underline a number of characteristics of cities as the location of technology learning processes. These include a high sense of urgency in relation to specific problem situations and a high concentration of stakeholders in government, industry and research. In addition to that they also note the advantages of initial local, small-scale experiments over the top-down global level. However, it must be taken into account that these learning processes at the municipal level can be approached from two quite different angles, involving different rationales and agendas. At the national level, technology policy goals and strategy development often dominate. From this perspective local experiments serve to contribute to momentum-building in specific technology areas by finding promising niches for technology testing, building up local actor networks, creating initial markets and learning from shared experiences. This corresponds quite closely to what 732 A. Schreuer et al. Karlström and Sandén have highlighted as the main goals of demonstration projects, namely • Learning in relation to technology performance and the contexts of use • Opening up markets, e.g. by increasing public awareness and identifying institutional barriers and • Formation of a network of actors, which can then evolve into active advocacy coalitions. This rationale is obviously also well in line with the interests of R&D actors in the technology field in focus, as such experiments provide them with an opportunity for technology probing, product visibility and initial market development. From the perspective of the municipality, however, the benefit of engaging with technology learning processes will of course be more strongly tied to local interests and needs, such as addressing prevalent problems of the municipality or strengthening the regional economy by involving regional firms in technology deployment. From this point of view it is not so much an issue of selecting appropriate application areas for a given technology but rather to consider different technical and organisational variants of addressing a particular problem situation. Nevertheless urban municipalities may in fact also strive for a profile as 'sustainable city' or technology forerunner and therefore become actively involved in the promotion of particular technology areas. Eames et al. as well as Hodson and Marvin , studying attempts to make London a forerunner of a 'hydrogen economy', find that world cities such as London do actively seek to position themselves as managers of such large-scale transition processes. However, in their attempts to become a central player in the promotion of this technology area, they also find themselves in competition with multinational companies as well as European Union level governance, framing the role of London merely as a kind of 'test-bed' for technology probing. Thus, while the potentials of municipal technology experiments are multifaceted, so are the rationales and agendas attached to them. Implementing projects thereby also becomes an issue of negotiating differing problem framings and coordinating different governance levels . The following case study describes an attempt to actively create a forum for the exchange of the perspectives of different actors, identifying potential technology deployments in the field of fuel cell technology, and for discussing the local embedding of promising options in a municipal context. --- Case study on fuel cell technology at the municipal level The case study our discussion about opportunities and challenges of municipal technology learning is drawing upon was carried out as part of a practice-oriented research project on the potentials of user and stakeholder involvement in technology development . It was funded within a national R&D programme focussing on the development and implementation of 'green' technologies. The case study consisted of some preparative interviews and, as its main part, a workshop series in Graz, Austria, that brought together R&D actors in the area of fuel cell technology with municipal actors and representatives of intermediary organisations. The workshop series thereby aimed to create a reflexive learning environment for discussing the potentials, problems, and possible impacts of fuel cell technology at the municipal level. In terms of the framings discussed in the previous section, the case study was thus tied to an overarching rationale concerning the promotion of particular technology fields, predefining Negotiating the local embedding of socio-technical experiments 733 the technology field to be explored. However, the explicit aim of the project was to contribute to a more reflexive and locally embedded process of technology development and deployment, applying the basic principles of CTA and SNM. Broadly speaking, fuel cells are seen to be of interest because they are attributed significant potentials regarding the reduction of CO 2 emissions and increased energy efficiency levels. The following subsection will briefly provide some further background on the innovation field of fuel cell technology. In a next step we will outline the conceptualisation and implementation of the workshop series and finally present some central results of the workshops. --- The innovation field of fuel cell technology Since the late 1950s fuel cells have time and again been the focal point of waves of high expectations, succeeded by phases of disappointment when high striving goals could not be met. Even though most public attention has been attracted to the use of fuel cells as a propulsion technology for vehicles, other major application areas include stationary applications and portable applications . The high expectations with regard to fuel cell technology are to a large extent related to the high ecological potentials associated with it, most notably the potential to reduce greenhouse gas emissions. The overall emissions balance, however, depends not only on emissions at the point of use of fuel cells, but also on the emissions generated during the production of the fuel. While currently by far the largest part of hydrogen produced world-wide comes from steam reforming of natural gas, the 'ecological vision' regarding fuel cells, consists of using energy from renewable sources to generate the fuel, e.g. producing hydrogen via electrolysis using electricity from wind or solar energy. Although fuel cell technology has already reached the level of concrete product developments , production costs are generally still too high for broader market introduction. While it is hard to predict any long-term developments, it seems however likely that within the next years the application of fuel cell technology will be limited to a number of niche applications. These niches can be expected to develop in areas where fuel cell technology may provide a specific advantage over existing or competing solutions. Some possible examples, referred to by R&D actors in fuel cell technology during preparatory interviews for the workshop series included fuel cell vehicles in public transport, hybrid utility vehicles , emergency power supply and off-grid gauging and transmitting stations. A number of the application areas referred to thus relate to municipal utilities such as public transport, hospitals or city cleaning and indeed, a number of municipal pilot projects in the area of fuel cell technology have already been introduced in various cities . --- Conceptualisation and implementation of workshop series The workshop series consisted of three workshops held in the time-span from mid-June to early July 2007 in Graz, a medium-sized city of approximately 250,000 inhabitants in the south of Austria. The city of Graz was chosen for the workshop series because a significant number of Austrian firms and research institutes with R&D activities in the area of fuel cell technology are located in and around Graz. Also, a hydrogen fuelling and testing station is located there, set up as a demonstration project in 2005. In addition to that, because of the geographical location of Graz, surrounded by hills, particulate matter emissions pose a serious problem and strategies for the improvement of air quality are of particular importance. The city of Graz is also well known for long standing municipal environmental protection activities. Prior to the workshops, some preparative interviews with experts in the field of fuel cell technology were conducted. They served both to obtain an overview of the innovation field of fuel cell technology and to identify promising fuel cell application areas in a municipal environment. The interviews provided the basis for a background document sent out to participants of the workshop series, introducing the innovation field of fuel cell technology as well as outlining the planned workshop format. Stakeholders invited to the workshop series included fuel cell experts from basic research and industry as well as municipal actors and representatives of intermediary organisations. The workshop series was devised as a three-step process and made use of the technique of scenario building and assessment as the basis for strategy development. Thereby the discussion of potential fuel cell applications at the municipal level was situated in a broader context concerning the long-term development of the innovation field. The workshop series followed a design successfully applied earlier by Weber et al. : • Workshop 1: Identification of framework conditions influencing the future use of fuel cells, development of basic scenarios concerning future fuel cell use • Workshop 2: Choice of sustainability assessment criteria, qualitative assessment of the strengths and weaknesses of various elements of the scenarios • Workshop 3: Strategy development at the municipal level, discussing possible pilot projects and formulating general requirements for municipal pilot projects The three workshops were attended by a total of 16 stakeholders, where participation in individual workshops fluctuated between six and ten participants. The larger part of participants consisted of experts in fuel cell technology , while only relatively few actors from the municipality and intermediary organisations took part. The workshops followed a bottom-up approach, using various interactive techniques, group work and plenary discussions for developing and assessing the scenarios and for strategy analysis. Table 1 summarises relevant details of the implementation process. --- Results of the workshop series The workshop series produced a number of interesting results on potentials and priorities for the municipal implementation of fuel cell technology, which will be described in this section. Already during the first workshop diverging interests and problem framings of different actor groups became quite clear. Participants from research, industry and the municipality alike were most strongly interested in discussing short to medium term applications, notably in the form of potential pilot or demonstration projects. Especially industry actors highlighted the potentials of pilot projects to create higher levels of awareness and acceptance of hydrogen and fuel cell technologies. They underlined the need for providing 'positive technology experiences' as well as dealing with security concerns related to hydrogen. One actor also suggested an effect of awareness rising through pilot projects on chances for accessing further venture capital. In some individual cases interests in pursuing specific kinds of pilot projects bolstered this general concern for the promotion of fuel cell technology further. Some actors had previously already been developing concrete plans for projects and thus tried to push their stakes in pursuing these particular project plans further. Nevertheless R&D actors were generally quite keen on a broad discussion of the potentials and risks of fuel cells in general, of advantages and disadvantages of particular applications and of their local embedding in the municipal context. A broad agreement could be reached that the largest sustainability gains would be achieved by an introduction of fuel cell technology to the transport system . Also backup systems, such as fuel cell use as a load balance for renewable energy sources, were seen to have a significant potential. Most workshop participants rated the use of fuel cells in stationary power supply as not particularly interesting for municipal applications, although some differences of opinion emerged on this point between different R&D actors. It was noted that stationary applications currently do not offer significant advantages over conventional systems, both in economic and environmental terms. This ranking was by and large supported from the side of the municipality and it was pointed out that more attractive alternatives to fuel cells could be found in the area of stationary energy supply. In terms of possible transport applications attention was called to the need for a differentiated judgement of individual projects, mentioning aspects such as technological alternatives and costs as well as highlighting the issue of political timeliness. Pilot projects touching upon areas of highly controversial political debate would stand low chances of being implemented. This was judged to be the case for attempting to implement an access-control system in Graz, only permitting zero-emissions vehicles, e.g. fuel cell vehicles, to enter the city free of charge. A related point was brought forward in response to a suggestion to introduce a logistics system for transporting goods to the inner city based on electric and fuel cell driven vehicles. As this would require the involvement of a large number of individual people, in particular the suppliers and merchants of inner-city shops, it would certainly entail a high degree of organisational complexity. It was generally acknowledged that for an initial pilot project organisational complexity should be kept at a lower level. Finally, the definition of the role of the municipality within a pilot project was also found to require special attention. While R&D actors certainly had some hopes that the municipality may become an important ally for technology deployment projects, it soon became clear that the municipality itself was more inclined to see its role only as provider of a potential 'test-bed' for technology deployment. Lacking the sources for financial investment and being relatively far removed from technology policy developed at the national level, the municipality appeared to be rather reserved towards taking on an active and formative role in the implementation of pilot projects in the field of fuel cells. As it turned out, none of the discussed options for pilot applications met the actual needs and expectations of the municipality at that time. The workshop therefore does not seem to have set off further niche experimentations or pilot projects as it had originally intended. Nevertheless some mention was made of the possibility of acting as an intermediator between different actor groups. All in all it became clear that multiple possible roles exist for a municipality within local deployment projects and that not all of them can be expected to be fulfilled in individual projects. --- Negotiating the local embedding of socio-technical experiments 737 Box 1. Summary of central results of workshop series. --- Basic ranking of fuel cell applications for deployment in municipal context: 1. Applications in transport, such as fuel cell vehicles in public transport, municipal utility vehicles, vehicles used for logistics system for transporting goods to the inner city, on the longer term also private cars 2. Backup systems as a load balance to renewable energy sources or as emergency power supply for hospitals or computer servers 3. Fuel cell use for stationary energy supply --- Requirements for the local embedding of pilot projects: • In each individual case, comparing the possible benefit of fuel cell technology to technological alternatives • Development of integrated concepts with regional and renewable fuel production • Involvement of regional firms • Orientation towards the needs of the municipality • Taking account of political timeliness/awareness for potentially controversial issues • Limiting organisational complexity • Defining appropriate role for the municipality based on its interests and potentials. Box 1 summarises the results arrived at during the workshop series concerning relevant application areas and requirements for the local embedding of municipal pilot projects. --- Discussion --- Technology learning at the municipal level The results from the workshop series clearly provide us with some lessons on practical issues related to the local embedding of pilot projects that need to be considered during the design and implementation phase. One of these points is the issue of political timeliness.As mentioned in Section 3, Van den Bosch, Brezet, and Vergragt have highlighted a certain 'sense of urgency', e.g. around transport related problems, as a potentially helpful characteristic of technology learning processes at the municipal level. Nevertheless, our workshop discussions also highlighted that issues standing at the centre of political debate involve the risk of polarisation. So while a pilot project should address current problems and relate to the municipality's policy strategies, a project touching upon controversially debated policies may become 'trapped' in these debates and stand low chances of being implemented. This risk of polarisation will certainly have to be assessed at the level of each individual case -possibly by conducting a careful evaluation of stakeholder positions at the outset. Another interesting aspect concerns the cautionary stance of the involved stakeholders towards the involvement of a large number of individual actors in initial pilot projects, as a result of the high complexity this may involve. This runs somewhat against the notion that pilot projects can serve to mobilise stakeholders from a variety of backgrounds and instead highlights the considerable coordination efforts this entails, such as the alignment of interests of the various actors involved. Thus, in each individual case an appropriate balance will have to be struck between mobilising a sufficient number and well-selected set of stakeholders and containing the complexity of the actor network, which is thereby constructed. Also, the actors involved in an initial dialogue process, like the workshop series reported on here, cannot necessarily already be seen as part of an emerging actor coalition. In our case, for example, while R&D actors pushed for the implementation of fuel cell deployment projects, the municipality took on a rather critical position towards the issue. Harborne, Hendry, and Brown report on similar experiences concerning only conditional support of fuel cell technology by bus manufacturers involved in the implementation of demonstration projects. However, the clarification and discussion of different interests and agendas over the course of a workshop series can serve to reflect on and possibly redefine the framing, the purpose and the actor roles associated with technology deployment projects. This became particularly clear during our workshop series when the multiplicity of possible roles the municipality may take on -or be expected to take on -with respect to pilot projects was discussed. At the most basic level, the municipality may simply take on the role of an early user of a technology, implementing certain applications in municipal utilities, while additional costs are covered by extraneous sources. However, it could also act as a promoter and funding body andin addition to that -as a policy maker, e.g. incorporating pilot projects in longer-term strategies as well as passing relevant legislation. Even more detailed questions can be expected to arise in the implementation of concrete pilot projects, such as issues around ownership and intellectual property rights. In the context of climate change mitigation activities these different roles of municipalities have also been addressed as different modes of governing in municipalities, such as self-governing , governing by authority , governing by provision and governing through enabling . Eames et al. and Hodson and Marvin have already highlighted diverging expectations concerning the role of the city of London in attempted moves towards a 'hydrogen economy'. As mentioned in Section 0, the city's efforts to position itself as an active player in this process contrasted with the perspectives of multinational companies viewing London mainly as a 'testbed' for technology probing. Nevertheless in our case study the situation appeared to be somewhat reversed. As a result of limited budgets and lacking an explicit technology strategy, the municipality appeared to be rather reserved towards taking on any role going beyond that of a simple 'user' of fuel cell technology. Participation in technology trials was seen as a possible option, but taking on the role as a funding body or even central coordinator and promoter for such a project was not regarded as feasible. These experiences may partly be specific to the situation in Graz. Furthermore, as the workshop series focussed specifically on fuel cell technology, the role of the municipality was already somewhat narrowed down to an evaluator or co-organiser of possible deployment projects in a pre-defined technology area . Nevertheless our results suggest that municipalities, especially in small to medium sized cities, may often be lacking the means to provide substantial support and leadership in technology learning processes. As noted in Section 3, municipalities are often strongly dependent on higher levels of governance, such as the financial resources allocated to them, explicit technology strategies at the national level as well as relevant policies and institutional frameworks. Yet, this is not to say that the municipal level cannot provide significant impulses concerning the application, regulation and maturation of emerging technologies. Rather, it highlights the importance of the Negotiating the local embedding of socio-technical experiments 739 coordination of various governance levels in the context of technology learning processes. Thus, while specific niches for technology learning processes can be identified and realised at the local level, these efforts may need to be coordinated with overarching technology strategies, legislation and product standards as well as funding programmes at the regional, national and possibly international level. --- Process evaluation -lessons learnt The previous subsection has discussed some of our results from the workshop series in relation to general questions concerning technology learning processes at the municipal level. In this subsection, by evaluating the process along the criteria proposed by Schot for CTA processes, some further conclusions on technology learning processes at the municipal level will be drawn, especially concerning the specific format of workshop series applied in this case study. Since CTA was chosen as a broad reference framework for the workshop series, Schot's criteria of anticipation, reflexivity, and societal learning appear to be quite suitable guidelines along which to evaluate the process. Societal learning occurred at different levels. First of all the workshop series facilitated an exchange of perspectives between municipal actors and technology developers. In particular, several R&D actors pointed out that they learned a lot about the perspective of municipalities, the specific demands and visions the city representatives articulated, the technologies they would prioritise, or the specific restrictions of municipalities . Thus, technology designers did not so much take home new user specifications but rather learned about the practicalities and also difficulties of implementing technology projects at the municipal level. To a certain extent this can be seen as an instance of second-order learning where technological options need to be rethought in a rather fundamental way in view of realistic use contexts. This process of learning about other perspectives was also true for city representatives, who usually had not been confronted with technology opportunities or the importance of local deployment projects, also for export oriented companies. Second, technology designers evidently could profit from the discussions on relevant application fields for fuel cell technology in municipal contexts. A rather broad and well-founded agreement could be achieved about worthwhile fields for further demonstration projects and strategic niche management processes, such as fuel cell applications in public transport, municipal utility vehicles or logistics systems for transporting goods to the inner city. These prioritised fields could integrate a number of perspectives: the problem situation of the municipality, the interest of technology suppliers and sustainability requirements. Third, the workshops also provided a platform where participants established new contacts and developed plans for further collaboration. While this aspect has not been evaluated systematically, there is at least anecdotal evidence of some joint project proposals and meetings between companies and representatives of the municipality and intermediary organisations resulting from the contacts made in the workshops. Nevertheless, it must be stressed again that while the time frame and limited resources of a research project were sufficient to start a process of learning and reflection, it has not been successful in kicking off new pilot projects or niche management processes. Some R&D actors participating in the workshop series did express their interest in having a more continuous platform to interact with municipalities and to develop demonstration projects in close cooperation with municipal and other demand side actors. However, it appears quite likely that these ideas will not be implemented at all or the system-oriented view will split up again into isolated technology demonstration projects without further process facilitation. In terms of anticipation the workshops also showed some interesting results. Both technology developers and municipal actors were initially rather reluctant to develop future scenarios for the use of fuel cell technology and instead pressed for a direct discussion of projects that could be realised in the short to medium term. Nevertheless the workshop series was in the end quite successful in kicking-off debate about sustainability aspects of fuel cell technologies and about different socio-technical scenarios and trajectories for future developments of the field. As a result, some well-informed and comprehensive mini-assessments were produced in a quite short period of time. For technology designers it became clear that sustainable innovation is a rather complex process taking a variety of factors into account and that the question whether fuel cell technologies are contributing to a more sustainable energy system heavily depends, e.g. on the assessment of alternative solutions, the relating infrastructure as well as specific local conditions. In this sense the process also contributed to the reflexivity of the actors participating in the workshops and was helpful to embed their short-term interests into broader perspectives. However, despite the successful anticipation and reflection of fuel cell implementation projects at the municipal level, the absence of practical implementation following up these discussions seems to be due to inherent tensions between the municipal and national problem framing, as pointed out in the introduction. While the municipality was interested in solving practical environmental or transport-related problems irrespective of the specific means to be employed, the CTA process, emerging from a national technology policy problem frame, had a strong technology bias, which appears to be inherent in any CTA-type process. These contradictory positions could not be productively overcome in the workshop process. Exploring the societal context and local embedding of a particular technology within a participatory process does indeed open up the innovation process to a broader set of stakeholders. At the same time, however, it also limits the problem horizon to the specific technology under focus, isolating it from technological or organizational alternatives. Moreover, especially in the case of a rather generic technology like fuel cells, a variety of different application areas may exist, which relate to quite different groups of demand side actors, implementation contexts and alternative solutions. Thus, while the workshop did create a forum for the exchange of perspectives of different actors, the technology bias could not be sufficiently overcome. This became apparent in a number of respects. First of all, the workshop series suffered from a relatively low participation rate of municipal actors. This may partly be attributed to the preparation phase of the workshop series, where higher efforts were put into mapping the technology and its applications than in mapping and articulating demand. Second, the emphasis on the mapping of the innovation field in the preparation of the workshop series also had implications for the focus of the workshop that turned out to be more attuned to the interests of technology developers than to the problems and needs of the municipality. Third, pre-defining the technology to be discussed to some extent also pre-defined the possible roles of different workshop participants. Thus, while R&D actors could try to use the workshop series for promoting 'their' technology, the role of municipal actors in the discussions was too often restricted to that of a commentator and potential recipient of fuel cell deployment projects. These experiences draw attention to the intricate problem of achieving a balanced framing when bringing together different interests and agendas into a joint discussion forum. As Raven et al. have noted: 'The types and methods that are mobilized, the questions asked , the timing of their mobilization, and the alignment of social interests and the concomitant resources Negotiating the local embedding of socio-technical experiments 741 that they draw on highlight the politicized extent of participatory methods that are often viewed as depoliticized and neutral' . Reversing the process and taking the problem situation of the municipality as a starting point for technology learning processes would certainly also be a promising approach and resolve some of the problems encountered in this case study. However, it is likely to open up new questions concerning the coordination with national technology policy goals or simultaneous access to a variety of different technology fields. It would not resolve the dilemma of bringing together the different agendas but also competences of local actors, national technology policy as well as researchers and industry actors. What remains is a basic 'dilemma of alignment': Regardless of the starting point that is chosen -either a technology field or a local problem situation -the problem framing this entails is likely to constrain the mobilisation and contribution of actors from 'the other side'. However, future projects with similar objectives may strive to work more symmetrically in terms of mapping the interests and perspectives of municipal actors in the preparation phase of a dialogue process and leaving more space for alternative technologies or social arrangements. If the starting point is to work from a particular technology field, greater efforts need to be put into matching technology potentials with existing problem situations and identifying interested demand side actors within municipalities before the actual meetings are organised . From a broader perspective, long-term partnerships between municipalities and intermediary organisations that provide more continuity in exploring suitable 'green' technologies may constitute an interesting possibility to be explored. --- Conclusion Technological innovation certainly plays an important role on the way towards a more sustainable society. In order to make this happen, it was often argued, a new paradigm to manage technology development is needed, a more reflexive approach based on broad and to some extent open learning processes and practical experimentation. In this paper, we have focused on some preconditions to systematically set up technology learning strategies at the municipal level. We have argued that despite the huge potential of cities for creating locally defined technology niches and stimulating social learning processes in realworld experiments, relatively little attention has so far been given to the process of setting up and locally embedding such niches and to the opportunities and specific problems this entails. In accordance with similar findings the experiences in our case highlight that the preparation of technology learning processes at the municipal level needs to take into account the limited room for manoeuvre of municipalities as well as the importance of the coordination of various governance levels. Municipalities, even if they see themselves as technology forerunner, are limited in terms of funding as well as relevant policies and institutional frameworks. Furthermore, when dealing with technology learning at the municipal level, it is important to be aware of the multiplicity of roles a municipality may take on in a technology learning process; as early user of a technology, as a promoter and funding body, as a policy maker considering longer-term strategies as well as passing relevant legislation, or eventually a combination of these different roles. However, to co-operate with municipalities in pilot projects or similar niche experiments in any case involves the risk to become part of a political debate with an uncertain outcome. Also, while municipal technology learning projects can serve to mobilise stakeholders and thus shape new actor coalitions in the respective innovation field, the effort of coordinating a possibly large number of actors also needs to be taken into account. The internal evaluation of the process indicates that the applied workshop design was capable to encourage the anticipative, reflexive and societal learning capacities of the actors involved. The workshops facilitated substantial exchange of perspectives, especially between the municipality and technology developers, and provided a platform to establish new contacts and develop plans for further collaboration. However, some structural shortcomings also constrained the process of technology learning and the wider impact of the workshop series. Two main problems emerged, namely the problem of achieving long-term continuity of such an intervention process and the problem of the technology bias that is easily inherent in CTA-type processes. In the context of municipal technology learning, the latter problem is closely related to conflicting approaches that may be taken on the subject -either starting from a particular technology area and attempting to contribute to technology learning and momentum building around the technology in focus -a problem perspective which is often adopted by national R&D programmes -or working from the needs and problem situations of the municipality and exploring different technological and organisational solutions. This results in a 'dilemma of alignment' -with the actors and agendas prevalent in this initial framing easily dominating the other side, which is merely considered as the 'context' of the process. In spite of all these challenges the municipal level clearly offers a huge potential for technology learning processes. For many reasons municipalities could be seen as 'natural' niches for exploring new technologies in realistic use contexts on a limited scale. At the same time municipalities can profit from environmental and economic benefits from experimenting with 'green' technologies. Future research in this field could deepen our understanding of the necessary conditions at the outset of technology learning experiments at the municipal level, the multiplicity of roles and competences of municipalities, the possibly unavoidable political character of technology in this context, and the way technology learning is embedded and linked to other governance levels. --- Notes on contributors
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Introduction After years of research on automated analysis of individuals, the computer vision community has transferred its attention on the new issue of modeling gatherings of people, commonly referred to as groups [1,2,3,4]. A group can be broadly understood as a social unit comprising several members who stand in status and relationships with one another [5]. However, there are many kinds of groups, that differ in dimension , durability , in/formality of organization, degree of "sense of belonging", level of physical dispersion, etc. [6] . In this article, we build from the concepts of sociological analysis and we focus on free-standing conversational groups , or small ensembles of co-present persons engaged in ad hoc focused encounters [6,7,8]. FCGs represent crucial social situations, and one of the most fundamental bases of dynamic sociality: these facts make them a crucial target for the modern automated monitoring and profiling strategies which have started to appear in the literature in the last three years [3,9,10,11,12,13,14]. In computer vision, the analysis of groups has occurred historically in two broad contexts: video-surveillance and meeting analysis. Within the scope of video-surveillance, the definition of a group is generally simplified to two or more people of similar velocity, spatially and temporally close to one another [15]. This simplified definition arises from the difficulty of inferring persistent social structure from short video clips. In this case, most of the vision-based approaches perform group tracking, i.e. capturing individuals in movement and maintaining their identity across video frames, understanding how they are partitioned in groups [4,15,16,17,18,19]. In meeting analysis, typified by classroom behavior [1], people usually sit around a table and remain near a fixed location for most of the time, predominantly interacting through speech and gesture. In such a scenario, activities can be finely monitored using a variety of audiovisual features, captured by pervasive sensors like portable devices, microphone arrays, etc. [20,21,22]. From a sociological point of view, meetings are examples of social organization that employs focused interaction, which occurs when persons openly cooperate to sustain a single focus of attention [6,7]. This broad definition covers other collaborative situated systems of activity that entail a more or less static spatial and proxemic organization-such as playing a board or sport game, having dinner, doing a puzzle together, pitching a tent, or free conversation [6], whether sitting on the couch at a friend's place, standing in the foyer and discussing the movie, or leaning on the balcony and smoking a cigarette during work-break. Free-standing conversational groups [8] are another example of focused encounters. FCGs emerge during many and diverse social occasions, such as a party, a social dinner, a coffee break, a visit in a museum, a day at the seaside, a walk in the city plaza or at the mall; more generally, when people spontaneously decide to be in each other's immediate presence to interact with one another. For these reasons, FCGs are fundamental social entities, whose automated analysis may bring to a novel level of activity and behavior analysis. In a FCG, people communicate to the other participants, among -and above all-the rest, what they think they are doing together, what they regard as the activity at hand. And they do so not only, and perhaps not so much, by talking, but also, and as much, by exploiting non-verbal modalities of expression, also called social signals [23], among which positional and orientational forms play a crucial role . In fact, the spatial position and orientation of people define one of the most important proxemic notions which describe an FCG, that is, Adam Kendon's Facing Formation, mostly known as F-formation. In Kendon's terms [8,24,25], an F-formation is a socio-spatial formation in which people have established and maintain a convex space to which everybody in the gathering has direct, easy and equal access. Typically, people arrange themselves in the form of a circle, ellipse, horseshoe, side-by-side or L-shape , so that they can have easy and preferential access to one another while excluding distractions of the outside world with their backs. Examples of F-formations are reported in Fig 1 . In computer vision, spatial position and orientational information can be automatically extracted, and these facts pave the way to the computational modeling of F-formation and, as a consequence, of the FCGs. Detecting free-standing conversational groups is useful in many contexts. In video-surveillance, automatically understanding the network of social relationships observed in an ecological scenario may result beneficial for advanced suspect profiling, improving and automatizing SPOT protocols [26], which nowadays are performed uniquely by human operators. A robust FCG detector may also impact the social robotics field, where the approaches so far implemented work on few number of people, usually focusing on a single F-formation [27,28,29]. Efficient identification of FCGs could be of use in multimedia applications like mobile visual search [30,31], and especially in semantic tagging [32,33], where groups of people are currently inferred by the proximity of their faces in the image plane. Adopting systems for 3D pose estimation from 2D images [34] plus an FCG detector could in principle lead to more robust estimations. In this scenario, the extraction of social relationships could help in inferring personality traits [35,36] and triggering friendship invitation mechanisms [37]. In computer-supported cooperative work , being capable of automatically detecting FCGs could be a step ahead in understanding how computer systems can support socialization and collaborative activities: e.g., [38,39,40,41]; in this case, FCGs are usually found by hand, or employing wearable sensors. Manual detection of FCGs occurs also in human computer interaction, for the design of devices reacting to a situational change [42,43]: here the benefit of the automation of the detection process may lead to a genuine systematic study of how proxemic factors shape the usability of the device. The last three years have seen works that automatically detect F-formations: Bazzani et al. [9] first proposed the use of positional and orientational information to capture Steady Conversational Groups ; Cristani et al. [3] designed a sampling technique to seek F-formations centres by performing a greedy maximization in a Hough voting space; Hung and Kröse [10] detected F-formations by finding distinct maximal cliques in weighted graphs via graphtheoretic clustering; both the techniques were compared by Setti et al. [12]. A multi-scale extension of the Hough-based approach [3] was proposed by Setti et al. [13]. This improved on previous works, by explicitly modeling F-formations of different cardinalities. Tran et al. [14] followed the graph based approach of [10], extending it to deal with video-sequences and recognizing five kinds of activities. Our proposed approach detects an arbitrary number of F-formations on single images using a monocular camera, by considering as input the position of people on the ground floor and their orientation, captured as the head and/or body pose. The approach is iterative, and starts by assuming an arbitrarily high number of F-formations: after that, a hill-climbing optimisation alternates between assigning individuals to F-formations using the efficient graph-cut based optimisation [44], and updating the centres of the F-formations, pruning unsupported groups in accordance with a Minimum Description Length prior. The iterations continue until convergence, which is guaranteed. As a second contribution, we present a novel set of metrics for group detection. This is not constrained to apply to FCGs, but to any set of people considered as a whole, thus embracing generic group or crowd tracking scenarios [14]. The fundamental idea is the concept of tolerance threshold, which basically regulates the tolerance on individuating groups, allowing some individual components to be missed or external people to be added in a group. Thanks to the tolerance threshold, the concepts of tolerant match, tolerant accuracy and of precision and recall can be easily derived. Such measures take inspiration from the group match definition, firstly published in a previous work [3] and adopted in many recent group detection [13,14] and group tracking methods [18] so far: in practice, it corresponds to fix the tolerance threshold to a predefined value. In this article, we show that, by letting the tolerance threshold change in a continuous way from maximum to minimum tolerance, it is possible to get an informative and compact measure that summarises the behaviour of a given detection methodology. In addition, the tolerant match can be applied specifically to groups of a given cardinality, allowing to obtain specific values of accuracy, precision and recall; this highlights the performance of a given approach in a specific scenario, that is, the ability of capturing small or large groups of people. In the experiments, we apply GCFF to all publicly available datasets , consisting of more than 2000 different F-formations over 1024 frames. Comparing against the five most accurate methods in the literature we definitely set the best score on every dataset. In addition, using our novel metrics, we show that GCFF has the best behaviour in terms of robustness to noise, and it is able to capture groups of different cardinalities without changing any threshold. Summarising, the main contributions of this article are the following: • A novel methodology to detect F-formations from single images acquired by a monocular camera, which operates on positional and orientational information of the individuals in the scene. Unlike previous approaches, our novel methodology is a direct formulation of the sociological principles concerning o-spaces. The strong conceptual simplicity and clarity of our approach is an asset in two important ways: we do not require bespoke optimisation techniques, and we make use of established methods known to work reliably and efficiently. Second, and by far more important, the high accuracy and clarity of our approach, along with its basis in sociological principles, makes it well suited for use in the social sciences as means of automatically annotating data. • A rigorous taxonomy of the group entity, which takes from sociology and illustrates all the different group manifestations, delineating their main characteristics, in order to go beyond the generic term of group, often misused in the computer vision community. • A novel set of metrics for group detection, that for the first time models the fact that a group could be partially captured, with some people missing or erroneously taken into account, through the concept of tolerant match. The metrics can be employed to whatever approach involving groups, including group tracking. All relevant data are within the paper, the code is freely available for research purposes and downloadable from http://profs.scienze.univr.it/*cristanm/ssp/. The remainder of the paper is organised as follows: the next section presents a literature review of group modeling, with particular emphasis on the terminology adopted, which will be imported from the social sciences; the proposed GCFF approach, together with its sociological grounding, is presented afterwards, followed by an extensive experimental evaluation. Finally, we will draw conclusions and envisage future perspectives. --- Literature Review Research on group modeling in computer science is highly multidisciplinary, necessarily encompassing the social and the cognitive sciences when it comes to analyse human interaction. In this multifaceted scenario, characterising the works most related to our approach requires us to distinguish between related sociological concepts; starting with the Goffmanian [6] notions of "group" vs. "gathering", "social occasion" vs. "social situation", "unfocused" vs. "focused" interaction, and Kendon's [45] specification concerning "common focused" vs. "jointly focused" encounters. As mentioned in the introduction, groups entail some durable membership and organisation, gatherings consist of any set of two or more individuals in mutual immediate presence at a given moment. When people are co-present, they tend to behave like one who participates in a social occasion, and the latter provides the structural social context, the general "scheme" or "frame" of behaviour -like a party, a conference dinner, a picnic, an evening at the theatre, a night in the club, an afternoon at the stadium, a walk together, a day at the office, etc.-within which gatherings develop, dissolve and redevelop in diverse and always different situational social contexts [7]. Unfocused interaction occurs whenever individuals find themselves by circumstance in the immediate presence of others. For instance, when forming a queue or crossing the street at a traffic light junction. On such occasions, simply by virtue of the reciprocal presence, some form of interpersonal communication must take place regardless of individual intent. Conversely, focused interaction occurs whenever two or more individuals willingly agree -although such an agreement is rarely verbalised-to sustain for a time a single focus of cognitive and visual attention [6]. Focused gatherings can be further distinguished in common focused and jointly focused ones [45]. The latter entails the sense of a mutual, instead of merely common, activity; a preferential openness to interpersonal communication, an openness one does not necessarily find among strangers at the theatre, for instance; in other words, a special communication license, like in a conversation, a board game, or a joint task carried on by a group of face-to-face interacting collaborators. Participation, in other words, is not at all peripheral but engaged; people are-and display to be-mutually involved [7]. All this can exclude from the gathering others who are present in the situation, as in any FCG at a coffee break with respect to the other ones. Finally, we should consider the static/dynamic axis concerning the degree of freedom and flexibility of the spatial, positional, and orientational organisation of gatherings. Sometimes, indeed, people maintain approximately their positions for an extended period of time within fixed physical boundaries ; sometimes they move within a delimited area ; and sometimes they do within a more or less unconstrained space . It is about a continuum, in which we can analytically identify thresholds. Table 1 lists some categorised examples of gatherings, considering the taxonomy axis "static/dynamic organisation" and the "unfocused/common-focused/ jointly-focused interaction" one. Within this taxonomy, our interest is on gatherings, formed by people jointly focused on interacting in a quasi-static fashion within a dynamic scenario. Kendon dubbed this scenario as characterising free-standing conversational groups, highlighting their spontaneous aggregation/ disgregation nature, implying that their members are engaged in jointly focused interaction, and specifying their mainly-static proxemic layout within a dynamic proxemic context. The following review centres on the case of FCGs and their formation, while for the other cases we refer: with respect to computer vision, to [46] for generic human activity analysis, including single individuals, groups and crowds, and to [47] for a specific survey on crowds; with respect to the sociological literature, to [7] as for unfocused gatherings, to [45,48] as for common focused ones, and to [49,50] as for crowds in particular. The analysis of focused gatherings in computer science made its appearance in the field of human computer interaction and robotics, especially for what concerns context-aware computing, computer-supported cooperative work and social robotics [42,43,51,52]. This happened since the detection of focused gatherings requires finer feature analysis, and in particular body posture inference other than positional cues extraction: these are difficult tasks for traditional computer vision scenarios, where people is captured at low resolution, under diverse illumination conditions, often partially or completely occluded. In human-computer interaction, F-formation analysis encompasses context-aware computing, by considering spatial relationships among people where space factors become crucial into the design of applications for devices reacting to a situational change [42,43]. In particular, Ballendat et al. [51] studied how proxemic interaction is expressive when considering cues like position, identity, movement, and orientation. They found that these cues can mediate the simultaneous interaction of multiple people as an F-formation, interpreting and exploiting people's directed attention to other people. So far, the challenge with these applications for researchers has been the hardware design, while the social dynamics are typically not explored. As notable exception, Jungman et al. [52] studied how different kinds of F-formations identify different kinds of interaction: in particular, they examined whether or not Kendon's observation according to which face-to-face configurations are preferred for competitive interactions whereas L-shaped configurations are associated with cooperative interactions holds in gaming situations. The results partially supported the thesis. In computer-supported cooperative work, Suzuki and Kato [38] described how different phases of collaborative working were locally and tacitly initiated, accomplished and closed by children by moving back and forth between standing face-to-face formations and sitting screen-facing formations. Morrison et al. [39] studied the impact of the adoption of electronic patient records on the structure of F-formations during hospital ward rounds. Marshall et al. [40] analysed through F-formations the social interactions between visitors and staff in a tourist information centre, describing how the physical structures in the space encouraged and discouraged particular kinds of interactions, and discussing how F-formations might be used to think about augmenting physical spaces. Finally, Akpan et al. [41], for the first time, explored the influence of both physical space and social context on the way people engage through F-formations with a public interactive display. The main finding is that social properties are more important than merely spatial ones: a conducive social context could overcome a poor physical space and encourage grouping for interaction; conversely, an inappropriate social context could inhibit interaction in spaces that might normally facilitate mutual involvement. So far, no automatic F-formation detection has been applied: positional and orientational information were analysed by hand, while our method is fully automated. In social robotics, Nieuwenhuisen and Behneke presented Robotinho [29], a robotic tour guide which resembles behaviour of human tour guides and leads people to exhibits in a museum, asking people to come closer and arrange themselves in an F-formation, such that it can attend the visitors adequately while explaining an exhibit. Robotinho detects people by first detecting their faces, and using laser-range measurements to detects legs and trunks. Given this, it is not clear how proper F-formations are recognised. Robotinho essentially improves what has been done by Yousuf et al. [28], that develop a robot that simply detect when an Fformation is satisfied before explaining an exhibit. In this case, F-formations were detected automatically, using advanced sensors with the possibility of checking just one formation. In our case, a single monocular camera is adopted and the number of F-formations is not bounded. In computer vision, Groh et al. [53] proposed to use the relative shoulder orientations and distances between each pair of people as a feature vector for training a binary classifier, learning the pairwise configurations of people in a FCG and not. Strangely, the authors discouraged large FCG during the data acquisition, introducing a bias on their cardinality. With our proposal, no markers or positional devices have been considered, and entire FCGs of arbitrary cardinality are found . In his previous work [9], one of the authors started to analyse F-formations by checking the intersection of the viewfrustum of neighbouring people, where the view frustum was automatically detected by inferring the head orientation of each single individual in the scene. Under a sociological perspective, the head orientation cue can be exploited as an approximation of a person's focus of visual and cognitive attention, which in turn acts as an indication of the body orientation and the foot position, the last one considered as the most proper way to detect F-formations. Hung and Kröse [10] proposed to consider an F-formation as a dominant-set cluster [54] of an edgeweighted graph, where each node in the graph is a person, and the edges between them measure the affinity between pairs. Such maximal cliques has been defined by Pavan and Pelillo as dominant sets [54], for which a game theoretic approach has been designed to solve the clustering problem under these constraints, leading to a mixed game-theoretic and probabilistic approach [11]. More recently, Tran et al. [14] applied a similar graph-based approach for finding groups, which were subsequently analysed by a specific descriptor that encodes people's mutual poses and their movements within the group gathering for activity recognition. In all these three approaches, the common underlying idea is to find set of pairs of individuals with similar mutual pose and orientation, thus considering pairwise proxemics relations as basic elements. This is weak, since in practice it tends to find circular formations , while FCGs have other common layouts . In our case, all kinds of F-formations can be found. In addition, the definition of F-formation requires that no obstacles must invade the o-space : whereas in the above-mentioned approaches such a condition is not explicitly taken into account, it is a key element in GCFF. In this sense, GCFF shares more similarities with the work of Cristani et al. [3], where F-formations were found by considering as atomic entity the state of a single person: each individual projects a set of samples in the floor space, that vote for different o-space centres, depending on his or her position and orientation. Votes are then accumulated in a proper Hough space, where a greedy minimization finds the subset of people voting for the same o-space centre, which in turns is free of obstacles. Setti et al. [12] compared the Hough-based approach with the graph-based strategy of Hung and Kröse [10], finding that the former performs better, especially when in presence of high noise. The study was also aimed at analysing how important positional and orientational information are: it turned out that, when in presence of positional information only, the performances of the Hough-based approach decrease strongly, while graph-based approaches are more robust. Another voting-based approach resembling the Hough-based strategy has been designed by Gan et al. [55], who individuated a global interaction space as the overlap area of different individual interaction spaces, that is, conic areas aligned coherently with the body orientations of the interactants . Subsequently, the Hough-based approach has been extended for dealing with groups of diverse cardinalities by Setti et al. [13], who adopted a multi-scale Hough-space, and set the best performance so far. --- Method Our approach is strongly based on the formal definition of F-formation given by Kendon [8] : An F-formation arises whenever two or more people sustain a spatial and orientational relationship in which the space between them is one to which they have equal, direct, and exclusive access. In particular, an F-formation is the proper organisation of three social spaces: o-space, p-space and r-space . The o-space is a convex empty space surrounded by the people involved in a social interaction, where every participant is oriented inward into it, and no external people are allowed to lie. More in the detail, the o-space is determined by the overlap of those regions dubbed transactional segments, where as transactional segment we refer to the area in front of the body that can be reached easily, and where hearing and sight are most effective [56]. In practice, in a Fformation, the transactional segment of a person coincides with the o-space, and this fact has been exploited in our Table 2 Algorithm 1. The p-space is the belt of space enveloping the ospace, where only the bodies of the F-formation participants are placed. People in the p-space participate to an F-formation using the o-space as the communication space. The r-space is the space enveloping o-and p-spaces, and is also monitored by the F-formation participants. People joining or leaving a given F-formation mark their arrival as well as their departure by engaging in special behaviours displayed in a special order in special portions of the r-space, depending on several factors ; therefore, here we prefer to avoid the analysis of such complex dynamics, leaving their computational analysis for future work. F-formations can be organised in different arrangements, that is, spatial and orientational layouts [8,25,57]. In F-formations of two individuals, usually we have a vis-a-vis arrangement, in which the two participants stand and face one another directly; another situation is the L-arrangement, when two people lie in a right angle to each other. As studied by Kendon [8], vis-a-vis configurations are preferred for competitive interactions, whereas L-shaped configurations are associated with cooperative interactions. In a side-by-side arrangement, people stand close together, both facing the same way; this situation occurs frequently when people stand at the edges of a setting against walls. Circular arrangements, finally, hold when F-formations are composed by more than two people; other than being circular, they can assume an approximately linear, semicircular, or rectangular shape. GCFF finds the o-space of an F-formation, assigning to it those individuals whose transactional segments do overlap, without focusing on a particular arrangement. Given the position of an individual, to identify the transactional segment we exploit orientational information, which may come from the head orientation, the shoulder orientation or the feet layout, in increasing order of reliability [8]. The idea is that the feet layout of a subject indicates the mean --- Initialise with O G i = TS i 8i 2 [1, . . ., n] old_cost = 1 while J < old_cost do old_cost J run graph cuts to minimise cost Eq for direction along which his messages should be delivered, while he is still free to rotate his head and to some extent his shoulders through a considerable arc before he must begin to turn his lower body as well. The problem is that feet are almost impossible to detect in an automatic fashion, due to the frequent occlusions; shoulder orientation is also complicated, since most of the approaches of body pose estimation work on 2D data and do not manage auto-occlusions. However, since any sustained head orientation in a given direction is usually associated with a reorientation of the lower body , head orientation should be considered proper for detecting transactional segments and, as a consequence, the o-space of an F-formation. In this work, we assume to have as input both positional information and head orientation; this assumption is reasonable due to the massive presence of robust tracking technologies [58] and head orientation Table 2 Algorithm 1. [59][60][61]. In addition to this, we consider soft exclusion constraints: in an o-space, F-formation participants should have equal, direct and exclusive access. In other words, if person i stands between another person j, and an o-space centre O g of the F-formation g, this should prevent j from focusing on the o-space, and, as a consequence, from being part of the related F-formation. In what follows, we formally define the objective function accounting for positional, orientational and exclusion constraints aspects, and show how it can be optimised. --- Objective Function We use P i = [x i , y i , θ i ] to represent the position x i , y i and head orientation θ i of the individual i 2 {1, . . ., n} in the scene. Let TS i be the a priori distribution which models the transactional segment of individual i. As we explained in the previous section, this segment is coherent with the position and orientation of the head, so we can assume TS i $ N ðm i ; S i Þ, where μ i = [x μ i , y μ i ] = [x i +Dcosθ i , y i +Dsinθ i ], S i = σ Á I with I the 2D identity matrix, and D is the distance between the individual i and the centre of its transactional segment . The stride parameter D can be learned by cross-validation, or fixed a priori accounting for social facts. In practice, we assume the transactional segment of a person having a circular shape, which can be thought as superimposed to the o-space of the F-formation she may be part of. O g = [u g , v g ] indicates the position of a candidate o-space centre for F-formation g 2 {1, M}, while we use G i to refer to the F-formation containing individual i, considering the F-formation assignment G i = g for some g. The assignment assumes that each individual i may belong to a single F-formation g only at any given time, and this is reasonable when we are focusing one a single time, that is, an image. It follows naturally the definition of O G i = [u G i , v G i ], which represents the position of a candidate o-space centre for an unknown F-formation G i = g containing i. For the sake of mathematical simplicity, we assume that each lone individual not belonging to a gathering can be considered as a spurious F-formation. At this point, we define the likelihood probability of an individual i's transitional segment centre C i = [u i , v i ] given the a priori variable TS i . Pr ðC i jTS i Þ / exp À jjC i À m i jj 2 2 s 2ð1Þ ¼ exp À ðu i À x m i Þ 2 þ ðv i À y m i Þ 2 s 2 !ð2Þ Hence, the probability that an individual i shares an o-space centre O G i is given by Pr ðC i ¼ O G i jTS i Þ / exp À ðu G i À x m i Þ 2 þ ðv G i À y m i Þ 2 s 2 !ð3Þ and the posterior probability of any overall assignment is given by Pr ðC ¼ O G jTSÞ / Y i2½1;n exp À ðu G i À x m i Þ 2 þ ðv G i À y m i Þ 2 s 2 !ð4Þ with C the random variable which models a possible joint location of all the o-space centres, O G is one instance of this joint location, and TS is the position of all the transitional segments of the individuals in the scene. Clearly, if the number of o-space centres is unconstrained, the maximum a posteriori probability occurs when each individual has his/her own separate o-space centre, generating a spurious F-formation formed by a single individual, that is, O G i = TS i . To prevent this from happening, we associate a minimum description length prior over the number of ospace centres used. This prior takes the same form as dictated by the Akaike Information Criterion [62], linearly penalising the log-likelihood for the number of models used. Pr ðC ¼ O G jTSÞ / Y i2½1;n exp À ðu G i À x m i Þ 2 þ ðv G i À y m i Þ 2 s 2 ! Áexp ðÀjO G jÞð5Þ where jO G j is the number of distinct F-formations. To find the MAP solution, we take the negative log-likelihood and discarding normalising constants, we have the following objective J in standard form: JðO G jTSÞ ¼ X i2½1;n ðu G i À x m i Þ 2 þ ðv G i À y m i Þ 2 þ s À2 jO G jð6Þ As such, this can be seen as optimising a least-squares error combined with an MDL prior. In principle this could be optimised using a standard technique such as k-means clustering combined with a brute force search over all possible choices of k to optimise the MDL cost. In practice, k-means frequently gets stuck in local optima and, in fact, using the technique described the least squares component of the error frequently increases, instead of decreasing, as k increases. Instead we make use of the graph-cut based optimisation described in [44], and widely used in computer vision [63,64,65,66] In short, we start from an abundance of possible o-space centres, and then we use a hillclimbing optimisation that alternates between assigning individuals to o-space centres using the efficient graph-cut based optimisation [44] that directly minimises the cost Eq , and then minimising the least squares component by updating o-space centres to the mean of O g , for all the individuals {i} currently assigned to the F-formation. The whole process is iterated until convergence. This approach is similar to the standard k-means Table 2 Algorithm 1., sharing both the assignment and averaging step. However, as the graph-cut Table 2 Algorithm 1. selects the number of clusters, we can avoid local minima by initialising with an excess of model proposals. In practice, we start from the previously mentioned trivial solution in which each individual is associated with its own o-space centre, centred on his/her position. --- Visibility constraints Finally, we add the natural constraint that people can only join an F-Formation if they can see the o-space centres. By allowing other people to occlude the o-space centre, we are able to capture more subtle nuances such as people being crowded out of F-formations or deliberately ostracised. Broadly speaking, an individual is excluded from an F-formation when another individual stands between him/her and the group centre. Taking y g i;j as the angle between two individuals about a given o-space centre O g for which is assumed G i = G j = g and d g i , d g j as the distance of i, or j, respectively from the o-space centre O g , the following cost captures this property: R i;j ðgÞ ¼ 0 if y g i;j ŷ; or d g i < d g j exp ðKcos ðy g i;j ÞÞ d g i À d g j d g j otherwise:ð7Þ 8 > > < > > : and use the new cost function: J 0 ðO G jTSÞ ¼ JðO G jTSÞ þ X i;j2P R i;j ðG i Þð8Þ R i, j acts as a visibility constraint on i regardless of the group person j is assigned to, as such it can be treated as a unary cost or data-term and included in the graph-cut based part of the optimisation. Now we turn to other half of the optimisation updating the o-space centres. Although, given an assignment of people to a o-space centre, a local minima can be found using any off the shelf non-convex optimisation, we take a different approach. There are two points to be aware of: first, the difference between J 0 and J is sharply peaked and close to zero in most locations, and can generally be safely ignored; second and more importantly, we may often want to move out of a local minima. If updating an o-space centre results in a very high repulsion cost to one individual, this can often be dealt with by assigning the individual to a new group, and this will result in a lower overall cost, and more accurate labelling. As such, when optimising the o-space centres, we pass two proposals for each currently active model to graph-cuts-the previous proposal generated, and a new proposal based on the current mean of the F-formation. As the graph-cut based optimisation starts from the previous solution, and only moves to lower cost labellings, the cost always decreases and the procedure is guaranteed to converge to a local optimum. --- Experiments The experiments section contains the most exhaustive analysis of the group detection methods in still images carried on so far in the computer vision literature, to the best of our knowledge. In the preliminary part, we describe the five publicly available datasets employed as benchmark, the six methods taken into account as comparison and the metrics adopted to evaluate the detection performances. Subsequently, we start with an explicative example of how our approach GCFF does work, considering a synthetic scenario taken from the Synthetic dataset. The experiments continue with a comparative evaluation of GCFF on all the benchmarks against all the comparative methods, looking for the best performance of each approach. Here, GCFF definitely outperforms all the competitors, setting in all the cases new state-of-the-art scores. To conclude, we present an extended analysis of how the methods perform in terms of their ability of detecting groups of various cardinality and to test the robustness to noise, further promoting our technique. --- Datasets Five publicly available datasets are used for the experiments: two from [3] , one from [10] , one from [13] , and one from [9] . A summary of the dataset features is in Table 3, while a detailed presentation of each dataset follows. All these datasets are publicly available and the participants to the original experiments gave their permission to share the images and video for scientific purposes. In Fig 2, some frames of all the datasets are shown. Synthetic Data. A psychologist generated a set of 10 diverse situations, each one repeated with minor variations for 10 times, resulting in 100 frames representing different social situations, with the aim to span as many configurations as possible for F-formations. An average of 9 individuals and 3 groups are present in the scene, while there are also individuals not belonging to any group. Proxemic information is noiseless in the sense that there is no clutter in the position and orientation state of each individual. Dataset available at http://profs.sci.univr.it/ *cristanm/datasets.html. IDIAP Poster Data . Over 3 hours of aerial videos have been recorded during a poster session of a scientific meeting. Over 50 people are walking through the scene, forming several groups over time. A total of 82 images were selected with the idea to maximise the crowdedness and variance of the scenes. Images are unrelated to each other in the sense that there are no consecutive frames, and the time lag between them prevents to exploit temporal smoothness. As for the data annotation, a total of 24 annotators were grouped into 3-person subgroups and they were asked to identify F-formations and their associates from static images. Each person's position and body orientation was manually labelled and recorded as pixel values in the image plane-one pixel represented approximately 1.5cm. The difficulty of this dataset lies in the fact that a great variety of F-formation typologies are present in the scenario . Dataset available at http://www.idiap.ch/scientific-research/resources. Cocktail Party . This dataset contains about 30 minutes of video recordings of a cocktail party in a 30m 2 lab environment involving 7 subjects. The party was recorded using four synchronised angled-view cameras installed in the corners of the room. Subjects' positions were logged using a particle filter-based body tracker [67] while head pose estimation is computed as in [68]. Groups in one frame every 5 seconds were manually annotated by an expert, resulting in a total of 320 labelled frames for evaluation. This is the first dataset where proxemic information is estimated automatically, so errors may be present. Anyway, due to the highly supervised scenario, errors are very few. Dataset available at http:// tev.fbk.eu/resources. Coffee Break . The dataset focuses on a coffee-break scenario of a social event, with a maximum of 14 individuals organised in groups of 2 or 3 people each. Images are taken from a single camera with resolution of 1440 × 1080px. People positions have been estimated by exploiting multi-object tracking on the heads, and head detection has been performed afterwards [69], considering solely 4 possible orientations in the image plane. The tracked positions and head orientations were then projected onto the ground plane. Considering the ground truth data, a psychologist annotated the videos indicating the groups present in the scenes, for a total of 119 frames split in two sequences. The annotations were generated by analysing each frame in combination with questionnaires that the subjects filled in. This dataset represent one of the most difficult benchmark, since the rough head orientation information, also affected by noise, gives in many cases unreliable information. Anyway, it represents also one of the most realistic scenario, since all the proxemic information comes from automatic, off-the-shelf, computer vision tools. Dataset available at http://profs.sci.univr.it/ *cristanm/datasets.html. GDet. The dataset is composed by 5 subsequences of images acquired by 2 angled-view low resolution cameras with a number of frames spanning from 17 to 132, for a total of 403 annotated frames. The scenario is a vending machines area where people meet and chat while they are having coffee. This is similar to Coffee Break scenario but in this case the scenario is indoor, which makes occlusions many and severe; moreover, people in this scenario knows each other in advance. The videos were acquired with two monocular cameras, located on opposite angles of the room. To ensure the natural behaviour of people involved, they were not aware of the experiment purposes. Ground truth generations follows the same protocol as in Coffee Break; but in this case people tracking has been performed using the particle filter proposed in [67]. Also in this case, head orientation was fixed to 4 angles. This dataset, together with Coffee Break, is the closest to what computer vision can give as input to our FCG detection technique. Dataset available at http://www.lorisbazzani.info/code-datasets/multi-cameradataset --- Alternative methods As alternative methods, we consider all the suitable approaches proposed in the state of the art. Seven methods are taken into account, one exploiting the concept of view frustum , two approaches based on dominant-sets , one exploiting a game-theoretic probabilistic approach and three different version of Hough Voting approaches using linear accumulator [3], entropic accumulator [12] and a multi-scale procedure [13]. It follows a brief overview of the different methods-some of them being explained in the Introduction and in the Literature Review section. Please refer to the specific papers for more details about the Table 2 Algorithm 1. Inter-Relation Pattern Matrix . Proposed by Bazzani et al. [9], it uses the head direction to infer the 3D view frustum as approximation of the Focus of Attention of an individual; given the FoA and proximity information, interactions are estimated: the idea is that close-by people whose view frustum is intersecting are in some way interacting. Dominant Sets . Presented by Hung and Kröse [10], this Table 2 Algorithm 1. considers an F-formation as a dominant-set cluster [54] of an edge-weighted graph, where each node in the graph is a person, and the edges between them measure the affinity between pairs. Interacting Group Discovery . Presented by Tran et al. [14], it is based on dominant sets extraction from an undirected graph where nodes are individuals and the edges have a weight proportional to how much people are interacting. This method is similar to DS, but it differs in the way the weights of the edges in the graph are computed; in particular, it exploits social cues to compute this weight, approximating the attention of an individual as an ellipse centred at a fixed offset in front of him. Interaction is based on the intersection of the attention ellipses related to two individuals: the more overlap between ellipses, the more they are interacting. Game-Theory for Conversational Groups . Presented by Vascon et al. [11], the approach developes a game-theoretic framework supported by a statistical modeling of the uncertainty associated with the position and orientation of people. Specifically, they use a representation of the affinity between candidate pairs by expressing the distance between distributions over the most plausible oriented region of attention. Additionally, they integrate temporal information over multiple frames by using notions from multi-payoff evolutionary game theory. Hough Voting for F-formation . Under this caption, we consider a set of methods based on a Hough Voting strategy to build accumulation spaces and find local maxima of this function. The general idea is that each individual is associated with a Gaussian probability density function which describes the position of the o-space centre he is pointing at. The pdf is approximated by a set of samples, which basically vote for a given o-space centre location. The voting space is then quantized and the votes are aggregated on squared cells, so to form a discrete accumulation space. Local maxima in this space identify o-space centres, and consequently, F-formations. The first work in this field is [3], where the votes are linearly accumulated by just summing up all the weights of votes belonging to the same cell. A first improvement of this approach is presented in [12], where the votes are aggregated by using the weighted Boltzmann entropy function. In [13] a multi-scale approach is used on top of the entropic version: the idea is that groups with higher cardinality tend to arrange around a larger o-space; the entropic group search runs for different o-space dimensions by filtering groups cardinalities; afterwards, a fusion step is based on a majority criterion. --- Evaluation metrics As accuracy measures, we adopt the metrics proposed in [3] and extended in [12]: we consider a group as correctly estimated if at least de of their members are found by the grouping method and correctly detected by the tracker, and if no more than 1-de false subjects are identified, where jGj is the cardinality of the labelled group G, and T 2 [0,1] is an arbitrary threshold, called tolerance threshold. In particular, we focus on two interesting values of T: 2/3 and 1. With this definition of tolerant match, we can determine for each frame the correctly detected groups , the miss-detected groups and the hallucinated groups . With this, we compute the standard pattern recognition metrics precision and recall: precision ¼ TP TP þ FP ; recall ¼ TP TP þ FNð9Þ and the F 1 score defined as the harmonic mean of precision and recall: F 1 ¼ 2 Á precision Á recall precision þ recallð10Þ In addition to these metrics, we present in this paper a new metric which is independent from the tolerance threshold T. We compute this new score as the area under the curve in the F 1 VS. T graph with T varying from 1/2 to 1. Please note that we avoid to consider 0 < T < 1/2, since in this range we are accepting as good those groups where more than the half of the subjects is missing or false positive, resulting in useless estimates. We will call it Global Tolerant Matching score . Since in our experiments we only have groups up to 6 individuals, without loss of generality we consider T varying with 3 equal steps in the range stated above. Moreover, we will discuss results also in terms of group cardinality, by computing the F 1 score for each cardinality separately and then computing mean and standard deviation. 2 Algorithm 1. starts by computing the transitional segments C i . At the first iteration 0, the candidate o-space centres O i are initialized, and are coincident with the transitional segments C i ; in this example 11 individuals are present, so 11 candidate ospace centres are generated. After iteration 1, the proposed segmentation process provides 1 singleton and 5 FCGs of two individuals each. We can appreciate different configurations such as vis-a-vis , L-shape and side-by-side . Still, the grouping in the bottom part of the image is wrong , since it violates the exclusion principle. In iteration 2, the previous candidate o-space centres are considered as initialization, and a new graph is built. In this new configuration, the group O 7,10 is recognized as violating the visibility constraint and thus the related edge is penalized; a new run of graph-cuts minimization allows to correctly cluster the FCGs in a singleton and a FCG formed by three individuals , which corresponds to the ground truth . --- An explicative example --- Best results analysis Given the metrics explained above, the first test analyses the best performances for each method on each dataset; in practice, a tuning phase has been carried out for each method/dataset combination in order to get the best performances. Note, we did not have code for Dominant Sets [10] and thus we used results provided directly from the authors of the method for a subset of data. For this reason, average results over all the datasets are only averaged over 3 datasets, and cannot be taken into account for a fair comparison. Best parameters are reported in Table 4. Please note that finding the right parameters can also fixed by hand, since the stride D depends on the social context under analysis : with a given D, for example, it is assumed that circular F-formations will have diameter of 2D. The parameter σ indicates how much we are permissive in accepting deviations from such a diameter. Moreover, D depends also on the different measure units which characterize the proxemic information associated to each individual in the scene. Table 5 shows best results by considering the threshold T = 2/3, which corresponds to find at least 2/3 of the members of a group, no more than 1/3 of false subjects; while Table 6 presents results with T = 1, considering a group as correct if all and only its members are detected. The proposed method outperforms all the competitors, on all the datasets. With T = 2/3, three observations can be made: the first is that our approach GCFF improves substantially the precision and even more definitely the recall scores of the state of the art approaches. The second is that our approach produces the same score for both the precision and the recall; this is very convenient and convincing, since so far all the approaches of FCG detections have shown to be weak in the recall dimension. The third observation is that GCFF performs well both in the case where no errors in the position or orientation of people are present and in the cases where strong noise of position and orientation is present . When moving to tolerance threshold equal to 1 the performance is reasonably lower, but the increment is even stronger w.r.t. to the state of the art, in general on all the datasets: in particular, on the Cocktail Party dataset, the results are more than twice the scores of the competitors. Finally, even in this case, GCFF produces a very similar score for precision and recall. A performance analysis is also provided by changing the tolerance threshold T. Fig 7 shows the average F 1 scores for each method computed over all the frames and datasets. From the curves we can appreciate how the proposed method is consistently best performing for each Tvalue. In the legend of Fig 7 the Global Tolerant Matching score is also reported. Again, GCFF is outperforming the state of the art, independently from the choice of T. The reason why our approach does better than the competitors has been explained in the state of the art section, here briefly summarized: the Dominant Set-based approaches DS and IGD, even if they are based on an elegant optimization procedure, tend to find circular groups, and are weaker in individuating other kinds of F-formations. Hough-based approaches HVFF X have a good modeling of the F-formation, allowing to find any shape, but rely on a greedy optimization procedure. Finally, IRPM approach has a rough modeling of the F-formation. Our approach viceversa has a rich modeling of the F-formation, and a powerful optimization strategy. --- Cardinality analysis As stated in [13], some methods are shown to work better with some group cardinalities. In this experiment, we sistematically check this aspect, evaluating the performance of all the considered methods in individuating groups with a particular number of individuals. Since Synthetic, Coffee Break and IDIAP Poster Session datasets only have groups of cardinality 2 and 3, we only focus on the remaining 2 datasets, which have a more uniform distribution of groups cardinalities. Tables 7 and8 show F 1 scores for each method and each group cardinality respectively for Cocktail Party and GDet datasets. In both cases the proposed method outperforms the other state of the art methods in terms of higher average F 1 score, with very low standard Table 6. Average precision, recall and F 1 scores for all the methods and all the datasets . Please note that DS results are averaged over only 3 datasets and thus cannot be taken into account for a fair comparison. --- Synthetic --- Noise analysis In this experiment, we show how the methods behave against different degrees of clutter. For this sake, we consider the Synthetic dataset as starting point and we add to the proxemic state of each individual of each frame some random values based on a known noise distribution. We assume that the noise follows a Gaussian distribution with mean 0, and noise on each dimension is uncorrelated. For our experiments we used σ x = σ y = 20cm and σ θ = 0.1rad. In our experiments, we consider 11 levels of noise L n = 0, . . .,10, where x n ðL n Þ ¼ x þ randsampleðN ð0; L n à s x ÞÞ y n ðL n Þ ¼ y þ randsampleðN ð0; L n à s y ÞÞ y n ðL n Þ ¼ y þ randsampleðN ð0; L n à s y ÞÞð11Þ 8 > > > < > > > : In particular, we produced results by adding noise on position only , on orientation only and on both position and orientation. Fig 8 shows F 1 scores for each method while increasing the noise level. In this case we can appreciate that with high orientation and combined noise IGD performs comparably or better than GCFF; this is a confirmation of the fact that methods based on Dominant Sets are performing very well when the orientation information is not reliable, as already stated in [12]. --- Conclusions In this paper we presented a statistical framework for the detection of free-standing conversational groups in still images. FCGs represent very common and crucial social events, where social ties pop out naturally; for this reason, detection of FCGs is of primary importance in a wide spectra of application. The proposed Table 2 Algorithm 1. is based on a graph-cuts minimization scheme, which essentially clusters individuals into groups; in particular, the computational model implements the sociological definition of F-formation, describing how people forming a FCG will locate in the space. The take-home message is that having basic proxemic information is enough to individuate groups with high accuracy. This claim originates from one of the most exhaustive experimental session implemented so far on this matter, with 5 diverse datasets taken into account, and all the best approaches in the literature considered as competitors; in addition to this, a deep analysis on the robustness to noise and on the capability of individuating groups of a given cardinality has been also carried out. The natural extension of this study consists in analyzing the temporal information, that is, video sequences: in this scenario, interesting phenomena such as entering or exiting a group could be considered and modeled, and the temporal smoothness can be exploited to generate even more precise FCG detections. --- All relevant data are within the paper and the source code is available through https://github.com/franzsetti/GCFF. ---
Detection of groups of interacting people is a very interesting and useful task in many modern technologies, with application fields spanning from video-surveillance to social robotics. In this paper we first furnish a rigorous definition of group considering the background of the social sciences: this allows us to specify many kinds of group, so far neglected in the Computer Vision literature. On top of this taxonomy we present a detailed state of the art on the group detection algorithms. Then, as a main contribution, we present a brand new method for the automatic detection of groups in still images, which is based on a graph-cuts framework for clustering individuals; in particular, we are able to codify in a computational sense the sociological definition of F-formation, that is very useful to encode a group having only proxemic information: position and orientation of people. We call the proposed method Graph-Cuts for F-formation (GCFF). We show how GCFF definitely outperforms all the state of the art methods in terms of different accuracy measures (some of them are brand new), demonstrating also a strong robustness to noise and versatility in recognizing groups of various cardinality.
Introduction Organizations assess members' shared perceptions of formal and informal Organizational policies, practices and procedures and the types of behaviors that are rewarded, supported and expected in a work environment. Therefore, Organizations are seen as a multidimensional structure with different focuses or goals. In this framework, the focus of this study is on the diversity climate of Organizations. Diversity climate indicates that managers need to understand and improve the demographic diversity of employees in order to be successful in multicultural Organizations . In this context, although diversity climate is widely accepted that individuals and work units have important results, managing this climate level in Organizations remains a difficult goal. Therefore, diversity climate can be managed by human resources management that cares about all processes of employees and is committed to managing these processes . Because human resource management approaches the scope of diversity management systematically. In this framework, human resource management includes activities that include diversity management because it can encourage the inclusion of all groups in the workplace for competitive or ethical reasons Hajro et al., --- İşletme Araştırmaları Dergisi Journal of Business Research-Turk 2237 2017:346; James andWooten, 2006:1105). Although Organizational research on diversity climate has been intensified in recent years, it is not at a sufficient level. In addition, it has been observed in the literature that changing demographic balances in the workforce in diversity climate Organizations are insufficient in managing this climate . In this framework, a diversity climate is seen as a major concern for employees and Organizations as it shows the degree to which an Organization treats and includes employees from all social groups fairly . This source of concern may decrease employees' perception of being loyal to the Organizations they work for. In this case, diversity climate can be seen as one of the important antecedent variables affecting loyal behavior within the Organization. However, it has been observed that diversity climate as an antecedent variable is insufficient in studies on loyal behavior . In order to fill this gap in the literature, the role of human resource management in the effect of diversity climate on loyal behavior, which takes into account the policies regarding the extent to which employees communicate implicitly or explicitly within the Organization on the basis of equal employment opportunity, is examined. In addition, this study indicates that employees' internalization of their jobs may have different results in the effect of diversity climate on loyal behavior. In this context, this study was conducted on blue-collar employees in production/manufacturing companies in Turkey in order to examine the role of job passion in the effect of diversity climate on loyal behavior. Because blue-collar employees are the group of employees who are pointed out in the Organization due to their demographic diversity compared to other-collar employees. Moreover, due to their diversity such as gender and age, these employees experience more pressure in the work process than other collar employees and their level of commitment to the Organization may decrease with this pressure. In addition to these, the level of internalization of blue-collar employees can change the strength and direction of the effect between the level of diversity climate and loyal behaviors. The results of the study provide a roadmap for human resource management by pointing out the value of considering the diverse climate to create loyal behaviors in the workforce and the role of job passion in this effect. --- LITERATURE REVIEW --- Loyal Behavior with Diversity Climate Diversity climate illustrates the perception of employees' reactions to demographic variations from other employees within the Organization . A common element of this concept is that an attitude towards diversity emerges among collectives and potentially shapes behavior among workers within Organizations . Diversity climate essentially refers to various forms of demographic diversity. However, it refers to employees' combined perceptions of the extent to which company practices and social context are affected by diversity such as race, ethnicity, gender, and age . In this context, it shows that diversity climate can be explained by the Social Exchange Theory. According to Social Exchange Theory, employees who positively value diversity management practices are expected to reciprocate by showing attitudes and behaviors valued by the Organization. More precisely, the Social Exchange Theory is that employees respond at the same level to the behaviors and attitudes they are exposed to in relation to a social relationship within the Organization. This response has revealed the positive or negative effects of creating a climate of diversity. For example, an increase in the level of diversity climate in employees may decrease turnover intention as well as increase Organizational commitment, job satisfaction, and job performance . In addition, a decrease in the diversity climate level of employees may decrease the level of loyal behavior of employees. Therefore, diversity climate is shown as an intangible component that is a general perception of the importance of employers' efforts to promote diversity. Because employers strive to increase the level of loyal behavior by increasing the diversity climate level of employees . This situation ensures that employees who feel included and valued in the Organization, regardless of their demographic characteristics, are more committed to the Organization they work for. --- İşletme Araştırmaları Dergisi Journal of Business Research-Turk --- 2238 Diversity climate refers to an environment that values and supports the diverse cultural, demographic, and social characteristics of employees in an Organization . This climate can make employees feel accepted and valued and increase their commitment to the Organization. When the diversity climate is positive, employees do not hesitate to express their differences and can express themselves comfortably. This can lead to employees feeling happier and more satisfied at work and exhibiting loyal behaviors . The impact of diversity climate on loyal behavior can involve many factors. For example, a diversity climate is closely related to an Organization's leadership approach, policies, training, and development opportunities. If an Organization actively promotes a climate of diversity and provides a fair environment among diverse employees, employees' commitment to work will increase and the desire to leave will decrease. Thus, employees tend to increase their commitment and loyal behavior to the Organization and develop a long-term and sustainable working relationship. More specifically, a climate of diversity creates an environment where employees feel accepted and valued, can express their differences, and are treated fairly at work . This positive climate increases employee commitment to work and encourages loyal behavior. By actively promoting a climate of diversity, Organizations can provide a satisfying work experience for their employees and increase the chances of long-term success . Thus, it is shown that all employees have equal opportunities to be successful. In this case, the fact that employees from different social groups have equal opportunities within the Organization strengthens the relationships between employees and ensures the loyalty of the employees to the Organization. In this context, it alleviates the inequality between employees from different social groups and increases the degree of loyal behavior of employees. Based on this information, the first hypothesis and research question of the study were formed: H1: Diversity climate has a negative and significant effect on loyal behavior. Question 1: How does the climate of diversity influence loyal behavior? --- Job Passion's Moderating Effect Job passion is defined as an individual's deep and lasting passion for a particular activity. More specifically, it is defined as the degree to which individuals internalize their work . Job passion can be formed in two different ways as individuals internalize their work, sometimes at an optimum level and sometimes excessively. With this understanding, it is seen that job passion takes a dual form of adaptive form and excessive passion which occurs when the optimum level of passion is exceeded. In this framework, while job passion, on the one hand, encourages healthy obsessive in the work, on the other hand, it can reveal negative affect and deviant mood . Harmoniously job passion individuals are more flexible and attentive to their work, more moderate and less defensive in performing their work. This type of passion constitutes an autonomous internalization that leads individuals to choose their jobs while doing their jobs. In this context, it can be said that harmonious passion can have positive outcomes . On the other hand, obsessive passion for work may cause negative outcomes due to excessive control since it is based on obsessive and deviant behavioral structures . In this framework, in this study, job passion is analysed by taking into account that these two sub-dimensions provide different outputs. In this context, when the studies in the literature are examined, the moderator effects of job passion are detailed. One of these studies is Liao et al. . This study examined the effect of entrepreneurship education, entrepreneurial mindset, and cognitive mediators on entrepreneurial intention and entrepreneurial competencies. According to the results of this study, it was revealed that passion is a moderator that crafts self-efficacy and attitudes toward entrepreneurship. However, in this study, the concept of passion was considered as a single dimension. In this case, the difference in effect between harmonious passion and obsessive passion was ignored. Another study in the literature is the study of Moreno-Jiménez et al. . In this study, harmonious passion was a negative moderator of both compassion fatigue and fragmented assumptions and also showed a buffer effect between daily work stressors and daily fragmented assumptions. Obsessive passion, on the other hand, showed positive relationships with both fragmented assumptions and symptomatology and also presented an enhancing effect between daily work stressors and daily symptomatology. According to these results of the study, while different effect results of harmonious passion and obsessive passion were observed, only the moderator effect of harmonious passion was observed. The findings of these studies observed in the literature indicate that job passion can change the strength and direction of the effect between variables. Therefore, in this study, it is thought that the concept of job passion can be a moderator between diversity climate and loyal behavior. The moderating effect of job passion on the effect of diversity climate on loyal behavior can play an important role in determining the level of commitment and behavior of employees. Job passion can be defined as a high level of interest, enthusiasm, and commitment of employees towards their jobs. Passionate employees see their work not only as a task but also as a purpose and show emotional commitment and dedication to their work . Diversity climate can regulate employees' passion for work because diversity acceptance and a supportive environment can increase employees' interest and commitment to their work. If an Organization develops a positive diversity climate and provides a fair environment among diverse employees, employees feel accepted and valued. This in turn increases interest and passion for work. At the same time, passion for work can lead employees to make high levels of dedication and effort for their work. If employees care about their work because of their passion for their work and are oriented towards a goal they value, they may be more willing to increase their commitment and loyal behavior. Therefore, the moderating effect of work passion may reinforce the role of diversity climate in enhancing employees' commitment to work. More precisely, job passion is an important factor moderating the effect of diversity climate on loyal behavior. Employees who are passionate about their jobs tend to increase their commitment to their jobs and loyal behavior, creating long-lasting and sustainable business relationships for Organizations. By positively promoting diversity climate and supporting job passion, Organizations can provide a satisfying work experience for their employees and increase job passion and loyal behaviors. Diversity climate may affect employees' loyal behaviors in the same direction, but the direction and strength of the effect may change when the dimensions of job passion are added to this effect. In other words, the concept of job passion, which refers to the level of commitment to feelings and values, may have a moderator effect between diversity climate and loyal behavior, which can affect the collective behavior of individuals within the Organization. In other words, while harmonious job passion may reduce or eliminate the effect between diversity climate and loyal behavior, obsessive job passion may change the direction of this relationship. Based on this idea, the second main hypothesis, sub-hypotheses, and the second question of the study were formed. H2: Job passion has a moderating role in the effect of diversity climate on loyal behavior. H2a: Harmonious passion has a moderating role in the effect of diversity climate on loyal behavior. H2b: Obsessive passion has a moderating role in the effect of diversity climate on loyal behavior. Question 2: How does job passion modify the effect of diversity climate on loyal behavior? The model of the research was formed within the framework of the hypotheses formed in the study . --- Figure 1. Research Model --- İşletme Araştırmaları Dergisi Journal of Business Research-Turk 2240 --- METHOD This study was conducted with two-stage data obtained from participants working as blue-collar employees in two manufacturing companies' fields of industry in Turkey. Ethical approval for this study was obtained by the Başkent University Academic Assessment coordinators on 13.12.2022 date with E-62310886-605.99-186534 number. In this framework, the quantitative method was used in the first stage, and the qualitative method was used in the second stage. For the two studies in question, a total of 409 data were obtained and sampling adequacy was ensured . --- --- Study 1. Participants In the first stage, data were collected from the employees by questionnaire method and a convenience sampling design was utilized. In this first stage, 322 data were obtained. Due to the incomplete filling of some of these data, the first stage of the study was carried out with 318 data. Considering the demographic distribution coefficients of the data collected in the first stage of the study, 42% of the participants were female and 58% were male. 32% of the participants graduated from primary/secondary school, 43% from high school, 15% from vocational high school, and 10% from undergraduate school. It was also observed that the majority of the participants were between the ages of 25-40, married, and experienced between 2-8 years. --- Study 1. Participants In the second stage of the study, 40-60-minute interviews were conducted with the employees face-to-face and electronically. At this stage, 91 interviews were conducted. When the coefficients of the demographic distribution of the participants within the scope of the second stage of the study are examined: 39% of the participants are female and 61% are male. 28% of the participants graduated from primary/secondary school, 47% from high school, 15% from vocational high school and 10% from bachelor's degree. It was also observed that the majority of the participants were between the ages of 23-43, married, and experienced between 4-10 years. --- Measurement In this study, three scales were used: Diversity Management, Loyal Behavior and Job Passion: Diversity Climate Scale: A four-item, diversity Climate scale developed by McKay et al. and adapted into Turkish by Güner Kibaroğlu was used to measure the diversity climate of employees. For the first stage of the study, the scale in question was handled as a 5-point Likert scale . For the second stage of the study, the items in the scale were turned into open-ended questions. Loyal Behavior Scale: This scale, which covers the theoretical field of loyal behavior, was developed by Van der Vegt et al. and consists of three items and one dimension. For the scale in question, translation, and back-translation studies were carried out in order to adapt a scale developed in a different culture to Turkish. In this framework, for cultural appropriateness, the questions developed in the original language were translated into the closest version to their meanings and equivalent validity was sought. In this process, the steps of first translation into Turkish, evaluation of the first translation, then back translation into the original language, re-evaluation of the back-translation, and discussion of the evaluations by applying expert opinions were consulted . These steps were the original form of the scale was sent to two experts with English language proficiency, after the scale was translated into Turkish, the translations were analysed by two field expert academicians for their sufficient with the literature, the Turkish scale obtained as a result of this analysis was sent to two experts with English language proficiency to be translated back to the original language, the linguistic validity of the scale was analysed by comparing the English version received back from the experts with the original version and in the last stage of the translation process, the comprehensibility of the scale was reviewed by an expert who has proficiency in the field. Thus, it was evaluated that there was no problem with the translation of the scale into Turkish, and the scale was used. Job Passion Scale: In order to measure job passion, the scale consisting of two sub-dimensions harmonious job passion and obsessive job passion developed by Vallerand et al. and translated into Turkish by Güner Kibaroğlu et al. was used. The scale consists of 12 items with two factors and 5-point Likert type. --- FINDINGS --- Study 1 The validity and reliability analysis results of the diversity climate, loyal behavior, and job passion scales used in the study were conducted . In this analysis, firstly, when the results of the internal consistency of the study are interpreted , Cronbach Alpha , factor loads , average variance extracted , Composite Reliability and data _A reliability Coefficient . As for the validity of the study scales, it was observed that the Variance Inflation Factor , Standardized Root Mean Square Residual , good fit model and empirical correlation coefficients , normed fit index values were at acceptable levels . Within the scope of the study, it was examined whether the variables of diversity climate, loyal behavior, and passion for a job are well separated from other variables. As seen in Table 2, when the correlation coefficients and AVE square root coefficients of diversity climate, loyal behavior, and job passion are compared, it is seen that these variables are well separated from other variables . According to this comparison, the condition that the square roots of AVE values are greater than the correlation values between factors is met. More specifically, when the relationship between the variables of the climate of diversity, loyal behavior, and passion for a job is examined, it is seen that the square root of AVE is much higher than the other factor values and it is well separated from the other factors. In the same table, it is seen that these three variables are related to each other. While analyzing this relationship, analyzes were performed by taking the geometric mean of the variables. To put it more clearly, the most important contribution of this study in the relationship analysis is the geometric mean of the variables. Because geometric mean gives more accurate results than arithmetic mean. More precisely, the geometric mean does not take the arithmetic mean of 1 Likert scoring and 5 Likert scoring that the participants gave to the items in the questionnaire. The evaluation --- İşletme Araştırmaları Dergisi Journal of Business Research-Turk --- 2242 between the load of 5 points and the load of 1 point is made. According to the results of the analyzes, diversity climate has a positive relationship with loyal behavior and harmonious job passion and a negative relationship with obsessive job passion. For the analyzes of the hypotheses formed within the scope of the study, firstly, explanation ratios , effect values , and prediction effect values were analyzed . According to these analyzes, diversity climate explains loyal behavior 43%, harmonious passion 62.3% and obsessive passion 68.5%. When the effect coefficients are analyzed, it is seen that harmonious and obsessive passion have a high effect . In addition, it is seen that diversity climate and loyal behavior, harmonious passion and obsessive passion have predictive power. The analyzes of the hypotheses formed within the scope of the first study were carried out in Smart PLS program 3 . As a result of these analyzes, it was seen that the level of diversity climate affected loyal behavior in the same direction and significantly . In addition, for the analysis of the moderating hypothesis formed within the scope of the study, moderating effect modules were created . When the results of the said moderator analysis are examined, it is seen that passion for work has a moderating effect between diversity climate and loyal behavior . Within the scope of these findings, H1 and H2 hypotheses of the study were supported. In other words, as the level of diversity climate increases, loyal behavior increases. In addition, job passion has a moderating role in the effect of diversity climate on loyal behavior. This effect varies among the subdimensions of job passion. --- İşletme Araştırmaları Dergisi Journal of Business Research-Turk --- 2243 This effect showed that harmonious passion can reduce the effect between diversity climate and loyal behavior, while obsessive passion can remove the effect between these two variables. In this framework, the findings obtained as a result of the analyzes of the first study are shown in Figure 2. --- Study 2 Within the scope of the second study, firstly, codes were created with the data collected from 91 participants. For diversity climate, the codes "Trust, Diversity-friendly work environment, Respect for diversity, and Visible commitment to diversity "; for Loyal Behavior, the codes are "Doing more than expected, Working on things that can help the company, and Always volunteering in projects"; for Harmonious Job passion, the codes "Work-life, experience qualification compatibility, and Self-appreciation"; and for Obsessive Job passion, the codes "Obsession with work, All my time is about this job, and Thinking only about work" were created. The codes were then analysed using frequency analysis . As seen in Table 5, it is seen that the distributions of these codes are close to equal to each other. After this stage, the values between the codes were analysed . As seen in Table 5, it is seen that diversity climate positively affects loyal behavior. This result answers question 1 of the study. In addition to these, according to the code relationships, the effect between the codes in question and the similarity matrix was observed more clearly . --- Figure 3. Similarity Analysis Results As seen in Figure 3, there is a high relationship between loyal behavior and obsessive behavior. While harmonious passion indirectly accompanies this relationship, diversity climate covers all relationships. Within the framework of these results, job passion has the power to predict loyal behavior in diversity climate. In light of this information, when the answers of the participants were analysed, it was seen that job passion was strong enough to eliminate the effect of diversity climate on loyal behavior. --- CONCLUSION AND RECOMMENDATIONS --- Key Findings This study was conducted to reveal the effect of diversity climate on loyal behavior and the role of job passion in this effect. In this context, firstly, the effect of diversity climate on loyal behavior was examined. Then, the role of job passion in the effect of diversity climate on loyal behavior was analysed. According to the results of the two empirical studies applied in this context, it has been observed that diversity climate affects loyal behavior in the same direction. This finding reveals that respecting employees' diversity, being friendly, showing a sense of trust and increasing the level of commitment to diversity will increase loyal behavior. Likewise, this study revealed that a decrease in the diversity climate levels of employees will cause them to exhibit disloyal behaviors such as wanting to do less than expected in their jobs, avoiding working on things that can help the company, and always wanting to volunteer in projects. In addition, this study showed that job passion reduces and eliminates the effect between diversity climate and loyal behavior. In other words, while the level of loyal behavior of employees is expected to decrease as the diversity climate decreases, it has been shown that having a passion for job can eliminate this effect. --- Theoretical and Implications Findings The results of this study, which is analysed within the scope of Social Exchange Theory, are supported by some studies in the literature: Chung et al. ) examined the joint effects of diversity climate on loyal behavior. Using data collected from a sample of 1,652 managerial employees in a total of 76 business units, the cross-level effects of diversity climate on the loyal behavior of managerial employees were evaluated. According to the results of this study, there is a positive relationship between diversity climate and loyal behavior. This result directly supports the results of this study. Another finding of this study is that job passion has a predictive power between diversity climate and loyal behavior. There are no studies in the literature that directly support this study. However, Liao et al., and Moreno-Jiménez et al., showed that job passion may have predictive power between variables. In this context, the results of this study also revealed the predictive power of indirect job passion and showed its power between diversity climate and loyal behavior. In line with the results obtained in the study, this study offers various contributions to the management literature, academicians and practitioners. First of all, the statistically significant effect of diversity levels on loyal behavior of blue-collar employees, which is very important in the manufacturing sector and is known to be directly related to performance, is a phenomenon that should be taken into consideration. The second contribution is that employees' level of passion for work should not be ignored as it plays an effective role in diversity climate and loyal behavior levels. The third contribution is that the moderator effect of job passion, which forms the basis of the study, obtained different results with harmonious job passion and obsessive job passion. According to these results, it has been shown that the effect between diversity climate levels and loyal behavior levels will decrease as a result of the increase in the level of harmonious job passion of blue-collar employees. However, the high levels of obsessive job passion of these employees should not be ignored as it reveals that it plays an important role in eliminating the effect between diversity climate and loyal behavior. All these results emphasise the impact of diversity climate on the levels of loyal behavior by simultaneously considering job passion in understanding and managing workforce diversity in human resource management. --- Limitations and Suggestions for Future Research Although this study is expected to provide various contributions to the management literature, academics and practitioners, some limitations should inevitably be taken into account. In this context, it is assumed that the participants answered the questionnaire items sincerely and honestly in the first application. In the second application, it is thought that the information obtained due to the limited time allocated to the employees will be limited. In addition, the coding and category limitations of the QDA miner system, which was used as the analysis programme in the second study, can be considered within the limits of the study. This study also includes several suggestions for future research. The first of these is to apply the study to participants in different cultures and to compare the findings obtained from this study with provinces. Because this study includes blue-collar participants working in the manufacturing sector in Turkey, which is located in the Middle East. In this context, it is thought that the levels of job passion of individuals in the production sector in this culture, where power distance is thought to be high, may be different compared to Western and Asian countries. In addition, it should be taken into consideration in future studies that cultural differences will vary in diversity climate levels.
The study, rooted in Social Exchange theory, aims to examine the relationship between diversity climate and loyal behavior within the context of human resources management. Furthermore, it seeks to analyze the mediating role of job passion in this relationship. The primary objective of this research is to understand the connection between diversity climate and loyal behavior while shedding light on the role of job passion as a mediator in this relationship. By employing two distinct methods, this study aims to comprehensively explore the interplay of these factors in the organizational context. Design/Methodology/Approach-The research was meticulously designed and conducted through two primary approaches. In the first phase, quantitative data was gathered using a comprehensive questionnaire, amassing responses from a total of 312 participants in the industrial field. For the second phase, a qualitative methodology was employed, involving face-to-face interviews conducted with 91 selected participants. This mixed-method approach enables a robust exploration of the dynamics between diversity climate, job passion, and loyal behavior.The outcomes of both quantitative and qualitative investigations concur, revealing a notable impact of diversity climate on loyal behavior among employees. This impact manifests itself consistently and significantly across both studies, underlining the significance of diversity climate as a predictor of employee loyalty. Additionally, the research uncovers the moderating role of job passion in this equation, indicating that the degree of passion for a job can influence the strength of the relationship between diversity climate and loyal behavior. Discussion-The findings of this study not only confirm the previously hypothesized relationship between diversity climate and loyal behavior but also provide deeper insights into the underlying mechanisms. The observed interaction of job passion as a moderating factor adds an extra layer of complexity to the understanding of this relationship. Notably, the nuanced analysis of different subdimensions of job passion reveals contrasting impacts; while harmonious passion mitigates the relationship between diversity climate and loyal behavior, obsessive passion exacerbates this relationship. These findings underscore the intricate nature of employee engagement and loyalty within the context of diverse workplaces, emphasizing the need for a holistic approach to managing workforce diversity in human resources management.
Cervical cancer disparities persist in the United States despite the availability of the wellestablished screening test, the cervical cytology, and resultant prevention and early treatment of precancerous lesions. Women of racial and ethnic minorities suffer the highest incidence rates in the United States, and therefore bear a disproportionate burden of the disease. 1 Indeed, mortality from cervical cancer among African American women is almost twice that among White women. 1 Persistent infection with oncogenic strains of human papillomavirus plays a major role in the development of cervical cancer, and the prevalence of HPV infection is highest among women with minority race/ ethnicity, low education, and low income. [2][3][4][5] Although the recent availability of the HPV vaccine has the potential to lower the rates of HPV infection, 6 the uptake of HPV vaccination remains low. 7 There are about 55 million cervical cytology tests performed each year in the United States, mainly in primary care settings. Approximately 3.5 million are abnormal and require medical follow-up, [8][9][10][11][12] which generally entails colposcopy and biopsy of suspicious areas. 13 Although cervical cancer is preventable, adherence to colposcopy and follow-up recommendations is less than optimal, with the lowest adherence rates occurring among low-income, inner-city African American women, [14][15][16][17][18][19] generally in the 30% to 40% range, [19][20][21][22][23][24] as well as among women who are younger and less educated. 25,26 These populations not only experience access barriers but also psychosocial barriers that undermine adherence. 18,19,[27][28][29][30][31][32] Despite the fact that adherence remains a persistent problem, only a few studies have focused on psychosocial barriers to follow-up testing and management after an abnormal cytology result, particularly in the most vulnerable populations. 19,30,33,34 This study builds on previous work 19,30 to provide a more comprehensive and systematic assessment of barriers in an inner-city, underserved population, guided by the Cognitive-Social Health Information Processing model, 19,30,[35][36][37] which highlights 5 cognitive-affective constructs that can undermine adherence . 19,30,[35][36][37] In the current study, we addressed 2 research issues among underserved women scheduled for an initial colposcopy: to delineate the profile of cognitive-affective barriers of an inner-city, predominantly African American population and to describe the relations between these barriers and sociodemographic factors to identify strategies to improve follow-up adherence for use in the primary care setting. --- Methods This is a cross-sectional, correlational study that assessed barriers to follow-up adherence among low-income, minority women, who were notified of an abnormal cytological test result and received a scheduled colposcopy appointment. This design was chosen in order to assess psychosocial barriers and their sociodemographic correlates prior to the actual followup appointment to capture women during the anticipatory phase of feedback impact. The data for this study were collected as part of a precolposcopy baseline assessment for a larger parent study, which is a randomized controlled trial that evaluated the efficacy of a tailored, telephone-delivered barriers counseling intervention program in the colposcopy clinic . For ease of communication, the parent study design and outcomes are reported in another article. 38 The study was approved by the institutional review boards of Fox Chase Cancer Center and Temple University Hospital . --- --- Procedure Patients with an initial abnormal cervical cytology test result were mailed a notification letter informing them of their result and the need to follow-up with a diagnostic colposcopy, a scheduled appointment date, and colposcopy clinic contact phone numbers. The TUH research nurse reviewed the Colposcopy Clinic schedules and identified eligible patients. Approximately 2 to 4 weeks before the initial colposcopy appointment, eligible patients were contacted by the TUH research nurse by telephone. On contact, the patient's upcoming colposcopy appointment was confirmed and the research nurse informed the patient about the study opportunity and invited her to be transferred to a FCCC study staff to learn more. Patients who provided verbal HIPAA authorization and informed consent were then telephonically transferred to an FCCC study staff member. For patients who were transferred, study staff provided further information about the study and confirmed verbal consent. Verbally consenting participants were administered the demographic and barriers assessments, and were sent a written informed consent document in the mail for them to sign and return in a prestamped envelope. Although the barriers assessment was administered to all verbally consented participants, only those who returned the written consent form were included in the final sample . --- Measures Sociodemographic Assessment-Variables assessed included age, race/ethnicity, level of education, marital status, and employment status. The sociodemographic characteristics of the study sample are presented in Table 1. Psychosocial Barriers Assessment-The barriers assessment instrument used in the current study was developed from our prior work, 19,30 formative evaluation, and our guiding theory. Participants were asked about the 5 categories of psychosocial barriers on a Likerttype scale of 1 = not at all, 2 = slightly, 3 = somewhat, 4 = very much, and 5 = extremely. The Likert-type scale rating format was used to capture the extent to which a given barrier was operative, in order to increase the rigor of the results and their application to intervention. All items were scored in the direction that higher ratings indicated greater barriers. Reverse-scored items are indicated with an "R" below. A rating of 3 or higher was considered endorsing the item as a barrier to adherence. Coping skills: Five items assessed whether the participant had ways to manage the following challenges: distress associated with the appointment [R]; paying the co-pay for the colposcopy appointment and getting referral letters that might be needed for insurance [R]; remembering the appointment [R]; managing responsibilities such as getting childcare, eldercare, and coverage at work [R]; and ability to get transportation. --- Results The final study sample characteristics are presented in Table 1. More than half of the participants had completed education of high school, trade school, or GED or below . The majority were single, never married , and a significant subset were unemployed . Some participants did not provide complete demographic information; therefore, the numbers of the demographic groups are smaller than the total sample size. Women who had high school completion or below were more likely to be unemployed . Regarding barriers to adherence, the frequencies and mean ratings of the barrier categories are displayed in Table 2. Overall, 81.43% of study participants reported having at least one barrier to adherence, and almost half endorsed 2 or more barriers. In examining the sociodemographic correlates to each C-SHIP barrier category, we focused on those correlating with the knowledge, distress, and coping skills barriers because they were the most frequently endorsed and had the highest mean ratings. Bivariate relations between sociodemographic characteristics and barrier category ratings are presented in Table 3. Women with less education reported significantly higher knowledge and coping barriers . Women who were unemployed also reported higher ratings of knowledge and coping . Women who were younger than 30 years reported significantly higher distress barriers . Please see Table 4 for a summary of major findings of this study. --- Discussion Although cervical cancer is highly preventable, inner-city, low-income minority women continue to be at higher risk for the disease, due to disparities in adherence to follow-up regimens after an abnormal cervical cytology result. [14][15][16][17][18][19]39,40 Building on existing literature and theory, this study delineated the psychosocial barriers to adherence, and their sociodemographic correlates, in an underserved population. The study sample had a large proportion of African Americans , who are at the highest risk of cervical cancer morbidity and mortality [1][2][3][4][5]41 and have been found to have the lowest adherence rates to follow-up care after an abnormal cervical cytology. [14][15][16][17][18][19] Educational level and employment status were representative of a low socioeconomic status sample, who suffers the greatest disparities in health care access and uptake. We found that knowledge and distress barriers were the most frequently endorsed, suggesting that these factors require attention among this vulnerable population. Of interest, coping barriers also characterized a significant proportion of the participants. Even within this underserved group, less education, being unemployed, and age younger than 30 years were associated with greater adherence barriers. Less educated and unemployed women may not have sufficient cognitive or material resources to understand their cervical cancer risk and follow through with adaptive actions. Younger women may also be emotionally less able to manage the worries and distress associated with cervical cancer risk and related diagnostic/ treatment procedures. The results show that cognitive-affective barriers vary by individual characteristics, and hence it is important to develop personalized interventions to assess and address barriers that are most relevant to the individual. Theory-based barriers assessment is a critical first step for identifying women who are at high risk for nonadherence, followed by delivering tailored counseling messages. This process can be facilitated by employing refined barriers assessment instruments, such as the one used in the current study, which offer advantages in terms of precision and sophistication of tailoring algorithms for specific individuals. As knowledge barriers are the most commonly endorsed, it would be worthwhile to explore whether a protocol for assessing and addressing barriers could be integrated within primary care services. Primary care staff who communicate with patients about the feedback of test results, and/or who prepare patients for the receipt of test results, could reinforce educational messages in a supportive fashion and provide referrals to community navigators, colposcopy clinic support services, and other resources. In addition, based on best practice principles in health communication, 42,43 the messages delivered to patients need to be carefully crafted for low health literacy levels to maximize understanding of the meaning and personal relevance of an abnormal cervical cytology result. Patients would also seem to benefit from messages that correct unrealistic fears and worries about disease and diagnostic/treatment procedures, especially since follow-up regimens require sustained adherence over time. Finally, given the importance of coping skills for enabling the patient to manage distress, distress management skills and reinforcement for adherence behaviors should be components of a comprehensive approach to barriers reduction. While telephone-based intervention has been shown to be efficacious in the colposcopy clinic, 19,30 it can be time and service provider intensive. Focusing on the most common barriers at the time of feedback in a protocolized and automated fashion should refine and streamline the process and better prepare patients. Furthermore, there is growing evidence supporting the role of patient navigators in addressing barriers and promoting adherence to abnormal follow-up in underserved patient populations, such as the Screening Adherence Follow-Up program for Latino women 39 and other patient navigation programs. 34,[44][45][46][47][48][49] Embedding state-of-the-science psychosocial barriers counseling into clinical-and community-based patient navigation programs may work synergistically to address cognitive-affective and access barriers. 50,51 This integrated approach has high potential to improve adherence to follow-up among inner-city, minority women, and hence reduce cervical cancer disparities. In future research, it will be important to replicate these findings with a larger and more culturally diverse underserved sample. Furthermore, it will also be important to link reported patterns of barriers with adherence outcomes, particularly over time. --- Biographies Siu-kuen Azor Hui, PhD, is a Research Assistant Professor at Fox Chase Cancer Center, Cancer Prevention and Control Program. She is a health psychologist studying communitybased interventions to promote cancer preventive behaviors, particularly in underserved populations, and their linkage to primary care services. --- Suzanne
Objectives-Low-income, inner-city women bear a disproportionate burden of cervical cancer in both incidence and mortality rates in the United States, largely because of low adherence to follow-up recommendations after an abnormal cervical cytology result in the primary care setting. The goals of the present study were to delineate the theory-based psychosocial barriers underlying these persistent low follow-up rates and their sociodemographic correlates. Methods-Guided by a well-validated psychosocial theory of health behaviors, this crosssectional, correlational study assessed the barriers to follow-up adherence among underserved women (N = 210) who received an abnormal cervical cytology result. Participants were recruited through an inner-city hospital colposcopy clinic, and were assessed by telephone prior to the colposcopy appointment. Results-Participants were largely of African American race (82.2%), lower than high school completion education (58.7%), single, never married (67.3%), and without full-time employment (64.1%). Knowledge barriers were most often endorsed (68%, M = 3.22), followed by distress barriers (64%, M = 3.09), and coping barriers (36%, M = 2.36). Forty-six percent reported more than one barrier category. Less education and being unemployed were correlated with higher knowledge barriers (P < .0001 and P < .01, respectively) and more coping barriers (P < .05 and P < .05, respectively). Women who were younger than 30 years displayed greater distress barriers (P < .05).In the primary care setting, assessing and addressing knowledge and distress barriers after feedback of an abnormal cervical cytology result may improve adherence to follow-
Introduction The US incarceration rate surged starting in the 1970s and is now the highest in the world . Racial and ethnic disparities in incarceration rates accelerated at the same time. In 2009, the black male incarceration rate was 3,119 per 100,000, and the Hispanic male incarceration rate was 1,193 per 100,000; white males were incarcerated at a rate of 487 per 100,000 , a disparity that is explained by sociopolitical factors unrelated to crime . The number of children experiencing the incarceration of a household member has also grown dramatically. Results of a 2004 national survey by the Bureau of Justice Statistics showed that more than 50% of state prisoners and more than 60% of federal inmates had children younger than 18 years, and rates of parenthood were higher among black and Hispanic inmates than white inmates . Therefore, as these children reach adulthood, the effects on them will likely be higher for Hispanics and blacks than for whites. People who have been incarcerated have a harder time acquiring stable housing, employment, education, and marriage partners , all of which are social determinants of health and may affect children living in the same household. Parental incarceration has been linked to poor mental health outcomes in children , and associations with children's health may continue into adulthood. Although most studies of incarceration's effects on community health have focused on infectious diseases , few have addressed chronic disease risk factors. We hypothesized that an association exists between having an adverse childhood experience with incarceration of a household member and the following health behaviors: current smoking, binge or heavy drinking, being overweight or obese, and having no leisure-time physical activity. These behaviors have been identified as contributing to the leading causes of death in the United States . --- Methods The Centers for Disease Control and Prevention's Behavioral Risk Factor Surveillance System is an annual telephone-based survey administered by the 50 states, US territories, and Washington, DC. An optional adverse childhood events module was administered in 5 states in 2009 and in 8 states and the District of Columbia in 2010 . The response rates for these states in these years ranged from 47.0% to 60.5% . The ACE module is based on questions from the Kaiser Permanente-CDC Adverse Childhood Experiences Study and asks 8 questions relating to the respondent's experiences before age 18. Exposure during childhood to an incarcerated household member was measured by the question "Did you live with anyone who served time or was sentenced to serve time in a prison, jail, or other correctional facility?" In conformity with previous studies , responses of "don't know" or "not sure" were considered no, and refusals were removed from the analysis. After removing data on respondents with missing information or who refused to answer the question , the initial analytic sample consisted of 81,910 adults. Because the rates of having an incarcerated household member differ greatly by race/ethnicity, we stratified and assessed for effect measure modification by race/ethnicity for non-Hispanic whites, non-Hispanic blacks, and Hispanics. The outcomes were health behaviors associated with adverse health outcomes, as measured by the following: whether respondents were current smokers; whether they drank heavily, as calculated by whether the respondent had more than 2 drinks per day if male and 1 drink per day for female or whether they engaged in binge drinking ; whether they were overweight or obese ; and whether they reported no leisure-time physical activity in the past 30 days. Because these behaviors have been shown to cluster in the US adult population , we created an additional 3-level variable indicating 0 or 1, 2, and 3 or 4 of these behaviors. Covariates were sex; age ; and education . We did not include income as a covariate because more than 12% of respondents refused to respond or did not know their income. We controlled for ACEs other than living with an incarcerated household member, because people with 1 ACE are likely to have others . We created an ACE score using a method described elsewhere while excluding the prison variable , and we categorized the variable as having 0, 1, 2, or 3 to 7 additional ACEs. We compared the distribution of sociodemographic characteristics and number of additional ACEs by having lived during childhood with an incarcerated household member using χ tests and calculated the distribution by age and race/ethnicity. We also used χ tests to compare the prevalence of health behaviors between adults who as a child had lived with an incarcerated household member and those who had not. We conducted 2 logistic regression models: the first with all covariates for the entire sample population and a second stratified by ethnicity. We used multinomial logit analysis to assess the association between experience of incarceration of a household member during childhood and a dependent ordinal health behavior variable with 3 levels . For the health behaviors that had significant associations with experience of incarceration of a household member during childhood for white, Hispanic, or black adults we assessed for departure from additive effects. We used Stata version 11 with survey commands to account for complex sampling design and weighting. --- Results Few respondents in states using the ACE module in 2009 or 2010 had lived with an incarcerated household member during their childhood . Those who did were less educated than those who had not and were more likely to have experienced other ACEs . Childhood exposure to household incarceration was more common among the youngest age groups; 20% of respondents who had lived with an incarcerated household member were aged 18 to 25 compared with 8% of those who had not . In all age groups, black and Hispanic adults had a higher prevalence of having experienced childhood exposure to an incarcerated household member, although the largest differences were seen in the younger age groups. . People who had lived with an incarcerated household member had higher crude prevalence estimates for current smoking and heavy drinking but not for overweight or obesity or lack of physical activity . Controlling for age, sex, education, race/ethnicity, and other ACEs, people who had a household member incarcerated during their childhood had higher odds of being current smokers and higher odds of heavy drinking than those who did not . The odds of being overweight or obese and reporting no physical activity were close to null. Respondents who had a household member incarcerated during their childhood had higher odds of having 2 versus 0 or 1 adverse health behaviors and higher but nonsignificant odds of having 3 or 4 versus 0 or 1 health behaviors. When stratified by race/ethnicity, Hispanic adults who had a household member incarcerated during their childhood had higher odds of being current smokers , heavy drinking , and having 3 or 4 of the health behaviors versus 0 or 1 health behaviors compared with those who did not. Non-Hispanic white adults who lived with an incarcerated household member had higher odds of current smoking and having 2 versus 0 or 1 health behaviors compared with those who did not. Among non-Hispanic black adults no significant associations were seen. There was evidence of effect measure modification of the association between exposure to living with an incarcerated household member during childhood and smoking and heavy drinking. Hispanic adults who were not exposed in childhood to living with an incarcerated household member had less than half the odds of heavy drinking compared with their similarly unexposed white counterparts and white adults who were exposed in childhood to living with an incarcerated household member had essentially null odds compared with their white counterparts without the exposure . Yet, there were indications that the odds of heavy drinking were higher when both Hispanic and exposed to living with an incarcerated household member when compared with their white counterparts who were not similarly exposed in childhood, although it wasn't statistically significant . Although Hispanic adults who were not exposed in childhood to living with an incarcerated household member had about half the odds of current smoking compared with their similarly unexposed white counterparts , and white adults who were exposed in childhood to living with an incarcerated household member had higher odds compared with their white counterparts without the exposure , there were no significantly higher odds when both Hispanic and exposed to living with an incarcerated household member when compared with their white counterparts who were not exposed in childhood. --- Discussion Hispanics have generally been excluded from the debate of whether incarceration exacerbates health disparities or, ironically, mitigates them by providing health care to medically underserved people of color . Our results indicate that this rapidly growing population may exhibit associations between household incarceration and adverse health behaviors that differ from non-Hispanic white and non-Hispanic black adults. Our hypothesis that living with an incarcerated household member during childhood is associated with some adverse health behaviors later in life was partially proved, even after accounting for other coexisting ACEs. Why some behaviors are affected and others are not is unclear. The association with health behaviors was also evident among Hispanic and white but not black adults. Smoking prevalence is generally lower among Hispanics than among non-Hispanic whites , so the increased odds of smoking among Hispanic adults with childhood exposure to incarceration is concerning. Incarceration and health are associated in complex ways. Prisoners have a worse health profile than the general population , and more than 50% suffer from poor mental health, substance dependence, or both . Little attention focused on Hispanic incarceration and its aftermath. Because of our small sample size, power was too weak to assess the association between race, incarceration, and health among Hispanics. Future studies may investigate how race mediates the Hispanic experience of both incarceration and health, especially for Hispanics who would be identified as black by US society regardless of how they self-identify. Race may mediate health among Hispanics as well as non-Hispanics, though identifying this is difficult because Hispanics are less likely to adopt US conceptions of racial categories. However, Hispanics who identify as black may be at increased risk of hypertension . Previous studies have found associations between ACEs, including incarceration, and poor adult health behaviors and outcomes . To our knowledge, ours is the first to address childhood exposure to incarceration as a social determinant of health disparities, particularly vis-à-vis Hispanic health. Literature on incarceration's effects on young children's mental health is growing , but no other studies have addressed longer-term associations into adulthood. Likewise, studies of incarceration's effects on community health have focused on infectious diseases but, with a few exceptions , rarely address chronic diseases. Our analysis suggests that living with an incarcerated household member during childhood may be a social determinant in chronic disease risk behaviors. Our study has limitations. Although the states using the ACE module are from different regions of the US and include varied demographic profiles, they may not be representative of the full national sample. We were unable to identify whether the effect varies depending on what type of household member was incarcerated, length or frequency of incarceration, the type of offense , or the age of the respondent at the time of the incarceration. We were unable to control for the respondents' own incarceration history in our analyses since the BRFSS, like most other nationally representative health data sets , does not collect this information. In recent years, concern has grown regarding the fiscal and social costs of increasing incarceration, especially for nonviolent offenders. If the escalation of incarceration continues through the early years of this century, its public health effect will continue to grow as the children of those prisoners or former prisoners reach adulthood. Furthermore, any adverse health effects of this childhood experience will continue to contribute to health disparities for the foreseeable future, simply on the basis of disparities in the cumulative exposures. Public health practitioners should consider adding incarceration to the set of social determinants more generally known to shape health behaviors and outcomes in America. --- Author Information Corresponding Author: Annie Gjelsvik, PhD, Brown University, Box G-121S, Providence, RI 02912. Telephone: 401-863-2396. E-mail: [email protected]. Author Affiliations: Dora M. Dumont, The Center for Prisoner Health and Human Rights, The Miriam Hospital, Providence, Rhode Island; Amy Nunn, Warren Alpert Medical School of Brown University, Division of Infectious Diseases, The Miriam Hospital, Providence, Rhode Island. The RIS file format is a text file containing bibliographic citations. These files are best suited for import into bibliographic management applications such as EndNote , Reference Manager , and ProCite . A free trial download is available at each application's web site.
Incarceration of a household member has been linked to poor mental and behavioral health outcomes in children, but less is known about the health behaviors of these children once they reach adulthood.We analyzed data from 81,910 respondents to the 2009-2010 Behavioral Risk Factor Surveillance System to identify associations between the childhood experience of having a household member incarcerated and adult smoking status, weight status, physical activity, and drinking patterns. We used multivariable logistic regression to control for sex, age, education, and additional adverse childhood events in the whole population and in separate models for Hispanic, non-Hispanic white, and non-Hispanic black adults. We also assessed for having multiple risk behaviors.People who lived with an incarcerated household member during childhood were more likely as adults than those who did not to engage in smoking (adjusted odds ratio [AOR] 1.50; 95% confidence interval [CI], 1.27-1.77) and heavy drinking (AOR 1.39; 95% CI, 1.03-1.87), after controlling for demographics and additional adverse childhood events. Exposure to incarceration in the household as a child among Hispanic adults was associated with being a smoker, being a heavy drinker, and having multiple risk behaviors and among white adults was associated with being a smoker and having multiple risk behaviors; among black adults there were no significant associations.Incarceration of a household member during childhood is associated with adult risk behaviors, and race/ethnicity may be a factor in this association.
Introduction In the past decades the prevalence of diagnosed autism spectrum disorder has been increasing in the world , and in 2007 an estimated 1 % of children had ASD in Stockholm County, Sweden . In the United States of America, parental reported ASD prevalence rose from 1.2 % in 2007 to 2.0 % in 2011-2012 with much of the increase coming from children who have ASD without intellectual disabilities .Although some of the increase can be explained by a widening of diagnostic criteria, other contributing factors include public awareness and societal demand . The increase in ASD prevalence impacts not only children with ASD but their families as well. Several studies have associated parenting a child with ASD with adverse health outcomes when compared to parents of typically developing children. Adverse health outcomes include high levels of stress depression , fatigue , poor sleep , and selfrated poor health . However, few studies have examined sick leave and work participation among parents who have a child with ASD and even fewer such studies have been performed in Sweden. Sweden has one of the world's most developed support systems in place, including laws and compensatory measures, to enable all parents to work, with additional support and services available to families who have a child with a disability. Thus, it is of interest to examine sick leave and work participation in this setting. Hitherto, to our knowledge, there have been no studies on sick leave and only two studies touching upon the subject of work participation. Olsson and Hwang, studying families of children with ID found that the mother's but not the father's work participation was affected by having a child with an ID . However, their study only included 68 children with autism and did not include children with autism without ID. The second study examined the costs of having a child with ASD and indicated that parents lose income when abstaining from paid work . Ja ¨rbrink et al's study also had a limited sample size and the subjects were recruited from the local child health center rather than the total population. Sweden has many policies to promote combining career with family. Parental insurance allows parents to stay home after the birth of a child for 480 days , but after this period parents usually return to work. Most children in Sweden attend daycare and a high percentage of parents are classified as being in the work force with 42 % of mothers and 74 % of fathers working full time . Parents may stay home to care for sick children, they are entitled to work part time, and daycare is heavily subsidized. Sweden has an individual payer tax system which provides an incentive for both parents to work and there are laws requiring employers to help ''both female and male employees to combine employment and parenthood'' ). Parents who have children with disabilities are given additional help in order to combine work with parenthood; for example they may take off ten extra days per year with compensation to attend parental education or health appointments. All parents in Sweden are given a monthly child allowance per child and parents with a child with a disability may be eligible for and can apply for an extra financial support, care allowance . Sick leave benefits in Sweden are paid out from the second day of illness, with the first fourteen days being paid for by the employer and days extending beyond two weeks paid for by the Swedish National Social Insurance Agency. A doctor's certificate is required to retain sick leave benefits after the first week. and Swedish Sick Pay Act . This comprehensive register-based study compares sick leave and work participation among parents with a child with ASD to that of parents who do not have a child with ASD in Stockholm, Sweden in 2006. The study examines a large number of parents with children with ASD using objective data from local and National statistics. The aim of the study is to examine whether or not the parents differ in the amount of sick leave they take and in their work participation. A secondary aim is to differentiate between parents having a child with ASD with or without ID. --- Methods --- Study Population, Participants The study population consisted of the biological families of children in the Stockholm Youth Cohort previously described by Idring et al., a cohort including all children ages 0-17 who resided in Stockholm County at some time in the years 2001-2007). The following exclusion criteria were applied to the study population: Families without any children aged 4-17 in 2006 were excluded because children under four years old are unlikely to have been diagnosed with ASD. Families where the 4-17 year old/s had not lived in Stockholm from 2001Stockholm from -2006Stockholm from were excluded to ensure they had adequate time be diagnosed/registered in the Stockholm health care system. Families in which the mother gave birth in 2006 or 2007 were excluded since approximately 21 % of women who were pregnant in 2006 and 2007 received pregnancy benefits, which are presented together with sickness benefits data in the sources from the Swedish Social Insurance. Families with more than six children were excluded because having a large family may in itself impact parental sick leave and work participation. Parents who had children with more than one partner potentially could have been represented multiple times and in order to prevent this, only the family from the first partner was kept and subsequent families were excluded . Families who had a child with ASD, but that child was not in the 4-17 age range were excluded . Families with missing data were excluded, both those who were absent from the longitudinal integration database for health insurance and labor market studies , and those who were present in LISA but were missing data on sick leave and/or work participation . After all exclusions, the final analytical sample consisted of 149,567 families. --- Exposure Assessment Biological families were identified via the Multigenerational Register using record linkage. Children with ASD were identified by Idring et al. with a multiple register approach in order to maximize case identification, and covering ASD case status as of December 31, 2007. One register used was the Clinical Database for Child and Adolescent Psychiatry in Stockholm which covers in and outpatient care within Stockholm since 2001 as well as diagnoses based on DSM IV . A second source was the outpatient care from the VAL databases, which covers public health care services since 1997 and includes diagnoses from ICD 1992) with good coverage of diagnosis from 2006. A third source was the Habilitation Register, which records the use of habilitation services in Stockholm since 1998. The Habilitation services center helps individuals with disabilities, including but not limited to ASD, and having a diagnosis is a prerequisite for receiving services. Finally, the inpatient care from the National patient register, with as good as complete coverage for psychiatric clinics from 1973 onwards and which includes diagnoses from the ICD systems, was used. The first three of these four registers are maintained by the Stockholm County Council , while the fourth register is maintained by the National Board of Health and Welfare . Additionally, Idring et al. identified ASD with and without ID using recorded diagnoses meeting criteria for intellectual disability in ICD 9 , ICD 10 and DSM IV and using records from the Habilitation register which categorize recipients into having autism with or without ID. These ASD cases were validated by Idring et al. in a study where they examined 177 randomly selected cases. Of these 96 % were accurate with an ASD diagnosis according to the journals. Idring et al. also cross validated SYC cases with a twin study including questionnaire data . --- Measures --- Outcomes Four outcomes, two for sick leave and two for work participation, were obtained using data from LISA in 2006. The first outcome for sick leave measured if a person had received or not received sickness benefits from the Swedish Social Insurance, which are paid out after two weeks and up to one year. The second outcome for sick leave measured if a person had been deemed unable to work for longer than one year and were therefore receiving activity or sickness compensation benefits . To examine work participation we looked at being in the labor force and at parental income. Being employed is measured by Statistics Sweden in the month of November, a month with less variability in the work force compared to summer and months with holidays. The income studied was income from employment . Having a very low income was considered a crude measure of increased likelihood of part time employment. --- Exposure Parents having a child aged 4-17 with ASD in 2006 were classified as exposed. This exposure was further stratified by whether the child had ASD with or without ID. Families having more than one child with ASD where both with and without ID were represented were classified as having a child with ASD with ID. --- Covariates Covariates were selected based on the likelihood that they might be associated with the outcomes and the exposures, and therefore needed to be considered as possible confounders. Parents were classified as having/not having psychiatric contact prior to becoming a parent. Psychiatric contact was defined in one of two ways: first, being in inpatient care at a psychiatric clinic or a clinic for those with an addiction problem in the National Patient Register, Sweden, or having a psychiatric diagnosis from 1973 onwards and second, visiting a psychiatric or addiction clinic in Stockholm in the years 1997 onwards. In addition to the covariates parental age , parental birth country and family size , we also looked at the following socioeconomic covariates: single parent/two parent households , parental education and social assistance . --- Data Analysis Multiple logistic regressions were performed to obtain odds ratios with confidence intervals of 95 % to examine the association between sick leave, long term sick leave, not being in the labor force, low income and having a child with or without ASD. In the first model we adjusted for parental age. In the second model we introduced parental contact with psychiatric care prior to birth of first child. In the third model we added the potentially confounding covariates parental birth country and number of children aged 4-17 in the family. In the final model we adjusted for socioeconomic covariates; parental education, two parent/single parent household, and receiving social assistance. Being a parent to a child with ASD was also analyzed stratified by ASD with or without ID. After the final model, we also checked the effect of mother's/father's situation by adjusting for the other parent's covariates and each outcome. SAS 9.2 was used to perform statistical analysis. Ethical permission for this study was obtained from the Regional Ethical Review Board in Stockholm . --- Results Our final sample included 149,567 mothers and 149,567 fathers, all having a child 4-17 years old in 2006. The number of mothers/fathers who had a 4-17 year old child with ASD was 2,892, and of these 1,207 had ASD with ID and 1,685 had ASD without ID. --- Descriptive Results Descriptive results are shown in Tables 1 and2. The proportion of parents with a child with ASD taking sick leave and not being in the labor force or earning less was higher than for parents without a child with ASD. A higher percentage of parents who took sick leave, were not in the labor force or had a low income were born outside of Sweden. For example 10.5 % of fathers born outside of Sweden were on long term sick leave versus 2.7 % of fathers born in Sweden, and 29.6 % of mothers born outside of Sweden were not in the labor force versus 10.0 % of mothers born in Sweden. Likewise, parents with less than 10 years of education, single household parents, or parents receiving social assistance were more likely to have all four outcomes. For example, 36 % of mothers with less than 10 years of education were not in the labor force versus 9.7 % of mothers who have more than 12 years education, and 44.4 % of lone fathers earned a low income versus 27.5 % of fathers living in a two parent household. Parental contact with psychiatric care prior to the birth the first child impacted the outcomes with a higher proportion of these parents being on sick leave, not being in the labor force, and earning a low income. For example 17.2 % of fathers and 14.2 % of mothers among this group were on long term sick leave. --- Analytical Results Parents of children who have ASD were more likely to take sick leave and to have lower work participation than other parents . A significant association was seen with all outcomes for mothers and fathers of a child with ASD, with the exception of fathers taking sick leave 15-365 days in model 4. The association was stronger among mothers. For mothers, the OR for sick leave/long term sick leave if they had a child with ASD was OR 1.3 /OR 2.0 in the crude model, while for fathers they were OR 1.2 /OR 1.5 . For not being in the labor force and low income the results were OR 1.6 and OR 1.5 for mothers, and OR 1.3 and OR 1.2 for fathers. When stratifying by ASD with or without ID, the association with sick leave 15-365 days was strengthened among mothers and fathers who had a child with ASD without ID and was not significant among mothers and fathers who had a child with ASD with ID. The association with long term sick leave was strengthened for mothers of children with ASD without ID and weakened, but still significant, for mothers of children with ASD with ID. Among fathers of children with ASD with ID the association with long term sick leave was strengthened and the association among fathers of children with ASD without ID was weakened. Having a child with ASD with ID strengthened the association to not being in the labor force for both mothers and fathers. Having a child with ASD without ID weakened the association with not being in the labor force, and among fathers the association was not significant in all models. Finally, when considering low income, the associations were strengthened for mothers and fathers who had a child with ASD with ID and weakened for a child with ASD without ID, but the association remained. The OR was weakened slightly when adjusting for parental contact with psychiatric care. When adjusting for country of birth and the number of children the results were slightly strengthened. In the final model, the associations with outcomes of parents with a child with ASD/ASD without ID/ASD with ID and sick leave tended to be slightly weakened. In the final model for work participation the results were similar for ASD, slightly weakened for ASD with ID and strengthened for ASD without ID. In addition to the four models mentioned above, the data was re-analyzed with adjustments for the other parent's covariates and outcomes. These extra analyses did not change the results. --- Discussion In this population based study, taking possible confounders into account, we found that parents of children with ASD, especially mothers, were on sick leave more often and participated less in work compared to parents of children without ASD. The findings occur despite the fact that Sweden provides extra compensatory measures of support to parents of children with disabilities in order to enable their successful participation in the work force and a healthy life. Differences between parents with and without a child with ASD remain after accounting for educational level, being a lone parent, and receiving social assistance. When stratifying parents with ASD child into ASD with or without ID some differences are found. Increased sick leave is associated with parents of children with ASD without ID but not ASD with ID. Increased long term sick leave is more strongly associated with mothers of children with ASD without ID and, in contrast, fathers to children with ASD with ID. Parents with a child with ASD with ID are more likely to be outside of the labor force or have low income than parents with a % % % % % % % Exposure No ASD % % % % % % % --- Exposure No ASD N o A S D 1 1 1 1 1 1 1 1 ASD 1.3 1.3 1.3 1.3 1.2 1.2 1.2 1.2 ASD 1.4 1.4 1.5 1.4 1.3 1.2 1.3 1.2 ASD 1.1 1.1 1.1 1.1 1.1 1.1 1.1 1.1 Long term sick leave N o A S D 1 1 1 1 1 1 1 1 ASD 2.0 2.0 2.1 2.0 1.5 1.4 1.5 1.4 ASD 2.1 2.1 2.3 2.2 1.3 1.2 1.4 1.2 ASD 1.9 1.8 1.9 1.7 1.7 1.6 1.6 1. N o A S D 1 1 1 1 1 1 1 1 ASD 1.6 1.6 1.6 1.6 1.3 1.3 1.3 1.2 ASD 1.5 1.4 1.6 1.6 1.2 1.1 1.3 1.2 ASD 1.8 1.8 1.7 1.6 1.4 1.4 1.4 1.3 Low income N o A S D 1 1 1 1 1 1 1 1 ASD 1.5 1.5 1.6 1.5 1.2 1.2 1.2 1.2 ASD 1.4 1.4 1.5 1.5 1.1 1.1 1.3 1.2 ASD 1.7 1.6 1.6 1.6 1.3 1.3 1.2 1.2 Estimates with 95 % Confidence Intervals that do not incorporate 1.00, are shown in bold --- ORs Odds Ratios; CI Confidence Intervals; ASD Autism Spectrum Disorder; ID --- Intellectual Disability Model 1: adjusted for parental age Model 2: Model 1 ? parental contact with psychiatric care prior to birth of first child Model 3: Models 1 and 2 ? country of birth and number of children Model 4: Models 1, 2 and 3 ? education, two parent/lone parent household and social assistance child with ASD without ID, but this difference is weaker in the final model. Parents who have a child with ASD are more likely to experience stress, depression, and fatigue. Therefore it is not surprising that these parents take sick leave more frequently or participate less in the work force. However, it is interesting to see that differences remain in Sweden where there is universal health care and children and families with disabilities are entitled to extra help, help that is meant to allow all families to have similar conditions. It is also interesting to consider why parents with children who have ASD without ID are more likely to be on sick leave than parents with a child with ASD with ID. A possible explanation might be that these parents experience a higher level of burden. Jones et al. have suggested that parental anxiety might be higher when a child has ASD with a higher level of adaptive functioning since that child is likely to live more independently than a child with ASD with a lower level of functioning, exposing them to dangers . Parental anxiety might lead to sleep deprivation or missed work. Another explanation is that children with ASD without ID are more likely to suffer from comorbid anxiety and depression than children with ASD with ID, which affects not only the child but the entire family. Finally, another reason could be that families with a child with ASD without ID might not get adequate help. Societal help in Sweden is given based on the individual child's need but in Olsson and Hwang's Swedish study on children with three different types of ID they found that more familial financial support was given to children with DS even though they had less needs than the children with ID or ASD with ID ; it might be more difficult to get help for a child who has a disability that is not visible or a disability which is varied . --- Strengths and Limitations The main strength of the study is that it was based on a cohort containing the total population of children 0-17 years living in Stockholm sometime between 2001 and 2007 and that Sweden has high quality registers enabling us to identify parents for the study using record linkage. Additional strengths are that Sweden has universal health care which increases the likelihood that ASD cases are detected , and that the ASD cases in the study are validated . Finally, because the study looks at sick leave that exceeds two weeks it is unlikely that sick leave goes unreported. People with flexible jobs might not report when they are sick if they can make up missed work on weekends or other times, but this would be hard to maintain for sickness lasting two weeks. Also, in order to be on sick leave a doctor's certificate is required and a person on sick leave must continually return to the doctor to get their sick leave extended. Once deemed fit to work the person is required to return to or look for work, which means that parents in the study are not ''choosing'' to be on sick leave. Additionally, people on social benefits are required to do activities to help them reenter the work force which makes it less likely that parents ''choose'' to be receiving social benefits. Despite the strengths, there are several limitations with our study which should be noted. Although we controlled for parental psychiatric care before birth of first child we believe residual confounding might occur if parents have psychiatric problems and have not sought psychiatric care. Psychiatric illness proceeding parenthood results in the problem of reverse causality preventing us from distinguishing between the parent's condition and the effect of parenting a child with ASD. Another limitation is that despite universal health care cases of ASD in the Stockholm population may go undetected, especially among children with ASD without ID, which may lead to misclassification: parents with a child with an undetected ASD classified as not having a child with ASD will result in weakened associations. Additionally, selection bias might occur since we exclude 11,586 mother/fathers because one or both of them have children with another partner, keeping only the ''first'' family, in order to prevent parents from being counted more than once. Since the likelihood of having a child with ASD increases with age , and since these parents are likely to be older, we may have selected a larger number of parents who did not have a child with ASD than if we had instead chosen to keep the most recent family. However, there is no reason to believe that this group differs regarding the outcomes. To make the comparison group representative of the Stockholm population we included parents with children with other disabilities. Some parents in the comparison group may have had children with other conditions which could have affected the four outcomes, possibly attenuating the results. It would have been interesting to compare parents who have children with other disabilities as well as to study comorbidities among the children with ASD . However, data for these other diagnoses were not readily available, but could perhaps be studied in the future. Another limitation arises from the complicated nature of the outcomes. We do not know why people are sick or why they are not in the labor force. Not being employed will affect well-being in different ways depending on whether or not the person is willingly or unwillingly outside of the labor force. Also, while having an income below the 20th percentile very likely indicates part time work, we do not know how many hours parents work or if they work more hours but at a very low wage. Additionally, parents in well paid jobs may work part time but exceed the 20 %, thus for these reasons low income is a crude measure for work participation. We controlled for a variety of possible confounders such as being born outside of Sweden, socioeconomic factors , and parental psychiatric contact. However, there are many other factors which can contribute and are not covered in the scope of this study that might be better suited for a qualitative study. --- Conclusions In conclusion, this study found that being a parent of a child with ASD is associated with higher maternal and paternal sick leave and lower work participation. The study found that ASD without ID but not ASD with ID was associated with sick leave lasting 15-365 days, but that both ASD with and without ID were associated with long term sick leave, not being in the labor force and low income. The findings are of particular interest because they appear in a society that has developed many policies to support parents with children with disabilities. In such a society it might be expected that these parents have comparable levels of sick leave, being in the work force, and income. However our findings suggest that despite Swedish policies aimed at helping families of children with ASD, both with well-being and with ability to work, that these parents remain a vulnerable group for which additional support might be warranted. It can also be noted that being on sick leave, outside of the work force or earning a low income will have long reaching impact on these parents because of Sweden's pension system which is based on an individual's life time earnings. It is recommended that further studies be done to see what support mothers and fathers would find most beneficial and what support they are lacking.
This population-based register study explored the association between having a child with/without autism spectrum disorder (ASD) and parental sick leave and work participation. Parents of children with ASD living in Stockholm, Sweden in 2006 were more likely to be on sick leave, not in the labor force, or earning low income when compared to parents who did not have a child with ASD and these results remained after adjusting for familial socioeconomic factors and parental psychiatric care. Sick leave among parents was associated with having a child with ASD without intellectual disability (ID) but not ASD with ID. Although Sweden has policies helping families with children with ASD this study suggests that there exist unmet needs among these parents.
Introduction The 20th Party Congress Report states: Building "livable and business-friendly beautiful rural areas" requires continuous improvement of rural public services and diligent efforts to enhance the rural living environment. In recent years, China's rural living environment has been continuously improved, with further popularization of sanitary toilets, effective treatment of domestic waste and sewage, and a gradual improvement in the rural ecological environment. However, there are still problems, such as a lack of cooperation among multi-entities and insufficient overall participation. From the perspective of government-led efforts, the role of the government in improving the rural living environment is to formulate policies, promote their implementation, support financial investment, guide and mobilize various forces, and supervise assessments. The government needs to fully play its role in top-level construction, grasp the overall trend of rural living environment governance, guide the effective participation of multiple entities, rather than playing a "solo act" by the government. From the perspective of villager's autonomous participation, rural living environment governance needs to grant certain autonomy to the masses, guide and organize farmers to independently build beautiful homes. The improvement of villagers' self-governing system can provide a more solid institutional guarantee for comprehensively promoting rural revitalization. From the perspective of third-party participation, active participation of third-party organizations is essential for improving the quality of life and building beautiful rural areas. Their participation can achieve the operation of the interest appeal, interest development, interest coordination, and interest protection system. Therefore, this paper takes the rural living environment as the core, through the perspective of multientity participation. It discusses the governance practice paths of multiple entities such as party organizations, government, social organizations, and villagers from the four dimensions of diversity of participating entities, diversity of participation methods, consistency of participation objectives, and coordination of participation mechanisms. This aims to stimulate the vitality of all entities involved and promote a comprehensive improvement in the governance level of the rural living environment. --- Basic Status of the Remediation of Rural Living Environment in District Y --- Road Construction Situation By the end of 2021, District Y had constructed 3800 kilometers of rural roads. The accessibility rates of towns, incorporated villages, merged villages, and villagers' groups, as well as the rate of bus service between towns and villages, all reached 100%. It took the lead in Chongqing to achieve "cement road access for every group" and became one of the first national demonstration areas for the "Four Good Rural Roads". --- Rural Waste Treatment Situation The government of District Y has established a model of "household collection, village concentration, town street transportation, district transfer processing", increasing capital investment, and unifying the transportation of all town domestic waste to incineration power plants for treatment, essentially achieving the goal of "zero landfill, full incineration". Furthermore, it has carried out solid and profound village cleanup actions mainly consisting of the "three clearings and one change", with a cumulative cleanup of over 8000 tons of domestic waste, over 2100 kilometers of ditches, 1252 ponds and weirs, and over 1700 tons of agricultural production waste by 2023. It has also added trash cans, dumpsters, and garbage trucks in accordance with national standards. By organizing full-time rural cleaning teams at the village level, effective treatment of rural domestic waste has been achieved, and villages have generally achieved cleanliness, tidiness, and order. village convenience service centers. By 2022, over 20,000 rural household toilets have been newly built or renovated in the district. To motivate rural residents to reform toilets, District Y has adopted a method of the government subsidizing a little, the village collective raising a little, the benefiting household contributing a little, and self-help saving a little to solve the required materials and funds. This has further improved the rural living environment, effectively enhancing the people's sense of happiness and attainment. --- Progress of the --- Analysis of Insufficiencies and Causes in Multi-entity Participation in Rural Living Environment Governance in District Y --- Predominantly Government-led, Low Participation from Other Entities The governance of the rural living environment ultimately relies on villagers' autonomy. However, all aspects of the governance of the rural living environment in District Y are basically arranged and guided by the government, with the township government playing an "all-capable" role, while other entities act as "mouthpieces" and "passive" executors. The government has unconsciously become the "big manager", taking on all the governance work. The government-led governance approach has resulted in low participation from other entities. The governance of the rural living environment should mobilize all parties to participate, otherwise the participation rights of other entities cannot be fully exercised, leading to weak autonomy. --- Absence of Grassroots Autonomous Organizations The Village Committee is the most extensive grassroots autonomous organization in rural China, characterized by self-management, self-education, and self-service. Its essence determines it as a mass organization directly led by the township government. Under this nature, the Village Committee in District Y often acts more as a mouthpiece for the township government, passively implementing the work handed down from above. This greatly undermines the autonomy of the Village Committee, rendering villagers' autonomy in name only. As a result, the autonomy of the Village Committee in District Y and the democratic rights of the villagers face serious challenges. The Village Committee members' unclear roles and responsibilities in rural environmental governance, along with the loss of villagers' subject status, greatly impact the effectiveness of rural environmental governance. --- Low Consultation Among Various Entities Currently, District Y has not yet formed consistent, clear participation goals for rural environmental governance. The cognition and behavior towards governance goals still need to be further reinforced. There are differences in understanding the governance issues among different entities, which to some extent, restricts the long-term development of the village. Moreover, grassroots democratic consultation work is not in-depth enough, and democratic consultation has not been actively conducted on some issues related to villagers' vital interests in habitat environment governance. A sound consultation mechanism has not been established, which leaves villagers, as the main entities, excluded from environmental governance, severely restricting the further advancement of rural living environment governance and making it difficult to reverse the government's long-term "one-man show" governance model. --- Poor Synergy and Cooperation in Multi-Entity Participation Mechanism The participation of social organizations is highly dependent on the government, with many of them participating in the management of the rural living environment through the government's directives. Due to the low level of rural economic development and lack of funding and resource support for rural social organizations, it is difficult to carry out specific activities. Therefore, the participation of social organizations in rural living environment governance is still in the primary and initial stages, with flaws in its own development and imperfections in the system, mechanism, and law. Moreover, very few enterprises in District Y are actively involved in rural environmental governance. Those participating have low participation levels, few channels of participation, and simple projects. Some companies participating in governance mostly do so under compulsory requirements. As rational economic entities, these enterprises neglect their social responsibilities, and the quality and level of the projects they provide are not high. Some companies would rather endure penalties than invest in pollution control. In summary, in the remediation work of the rural living environment, there is a lack of a perfect coordination mechanism. Apart from the government, the autonomy of other entities is greatly restricted. There is a lack of communication and equal cooperation mechanisms among different entities, and a multi-governance mechanism has not yet formed. --- The Implementation Path of Multi-Entity Participation in Rural Residential Environmental --- Governance Based on the analysis of the problems and causes in the practice of residential environmental governance in District Y of Chongqing, from the perspective of multi-entity participation, the following implementation paths can be summarized : Second, we must uphold the principle of villager-centered governance. It is essential to fully promote the subjective status of farmers, encourage villagers to actively participate in the government's decisionmaking and supervision of various projects, and regularly convene yard dam meetings, joint meetings, etc., to provide advice for the local government to formulate related policies, and guide villagers to actively participate in the environmental governance around them, making use of kinship, geographical proximity, and professional relationships for environmental protection propaganda. Third, we need to clarify the responsibilities of the Village Committees. The Village Committee serves as a bridge connecting the government and the farmers, and should timely reflect the issues of rural residential environmental governance to the government, continuously strengthen the study of policy --- theory, improve their professional level, and demonstrate creativity. They should be willing to make contributions to the village, do good deeds, and handle matters effectively, reasonably mediating interest disputes. Fourth, businesses must fulfill their social responsibilities. Besides the government, enterprises are the primary providers of products and services and the main source of the rural living environment. Enterprises should vigorously promote clean production, develop a circular economy, establish environmental protection concepts, comprehensively establish a green, civilized ecological development perspective, and integrate the environmental evaluation system into the enterprise's decision-making system. Fifth, social organizations should be cultivated. As the third force in social governance, social organizations play a pivotal role in expressing opinions, volunteering, environmental protection, and public welfare. The government should strengthen its support for social organizations, assist their healthy, orderly development, provide policies, funds, simplify approval procedures, lower entry barriers, and inject fresh blood into social development. --- Broadening Participation Channels and Promoting Diverse Participation Methods Firstly, progress of the management process should be publicized. The status of the rural living environment management must be timely disclosed to achieve transparency and openness. The village committee should inform villagers about the progress, the use of funds, and the management objectives, ensuring villagers' right to be informed and voluntarily accepting their supervision. This can promote villagers' sense of participation and stimulate their enthusiasm. Secondly, a system of collective discussion for collective matters should be established. All stakeholders need to be guided to participate in all aspects of social life. Only by participating personally in the management process can one truly cherish the results. Establish a collective consciousness of discussing collective matters in setting objectives, planning projects, implementing management, and supervision and evaluation. Respect all stakeholders' participation and decision-making rights and fully listen to their opinions. Thirdly, expand the avenues for public opinion expression. The rural living environment management is a complex project that involves villagers' immediate interests. Various perspectives are inevitable and deserve sufficient attention for effective management. Thus, it's necessary to provide villagers with a good platform to express their opinions. Fourthly, reinforce incentive systems for participation. Build a comprehensive, operable incentive mechanism that encourages farmers, enterprises, and village committees to actively participate in community management. Government funding, social donation, and part of the working capital of village committees can be used as special funds for rural living environment management. Tax reduction policies should be implemented for enterprises to actively contribute to rural living environment management. --- Maintaining Integrated Planning and Promoting Consistent Participation Objectives Firstly, deepen the stakeholder consultation mechanism. People's democratic consciousness is increasing, and the previous method of the government taking care of everything no longer satisfies people's needs. Hence, strengthen grassroots consultation, improve the democratic consultation system at the grassroots level, build a consultation platform for grassroots party organizations, governments, in-district units, and villagers. Ensure everyone can legally participate in rural environmental governance. Secondly, improve the interest coordination mechanism. The government and party organizations should fully coordinate and resolve conflicts of interest among governance stakeholders, and on this basis, actively seek a balance of interests. Establish equal consultation, effective cooperation, and unified rights, responsibilities, and interests with all stakeholders in policy formulation, service supervision, environmental assessment, and environmental management. Thirdly, improve the governance sharing mechanism. Construct a comprehensive governance process sharing mechanism among stakeholders, build an information and data management platform and database, and achieve information sharing among governments, enterprises, social organizations, and villagers. --- Constructing Collaborative Pathways, and Enhancing the Coordination of Participation --- Mechanisms Firstly, a management cooperation platform should be built. The government should take the lead in providing a good communication and coordination platform for all sectors of society. Make full use of the strengths of enterprises, groups, and the public in the region, and actively participate in all aspects of governance. Enable all parties to maximize efficiency through this platform, and achieve a new era of living environment rectification work pattern of co-construction, co-management, and co-sharing. Secondly, establish a supervision and management mechanism. Define the responsibilities of related departments according to their duties, establish a corresponding accountability system, and hold departments accountable in accordance with accountability procedures. Meanwhile, improve the mutual supervision mechanism and smooth the reporting channels. Through mutual supervision, foster a strong atmosphere of mutual trust among all responsibility subjects and achieve comprehensive and full-time supervision and inspection. Assist relevant responsibility subjects in formulating effective rectification measures. Thirdly, a complete environmental protection legal system should be enhanced. Legislation on rural living environment is an inevitable trend, but the current related laws and regulations are still not comprehensive. The legislative work for rural living environment management needs to incorporate normative documents into the rule of law. Based on policy documents, further clarify the responsibilities of the government as the main body and the rights and obligations of other participants, thereby forming a complete legal system.
The remediation of the rural living environment is not only an important aspect of comprehensively promoting rural revitalization but also directly influences the villagers' sense of happiness and attainment. This paper, taking District Y in Chongqing as an example, explores the practice paths of multi-entity coordinated governance in the rural living environment. The paper affirms the leading role of the government, participation responsibilities of the market, social organizations, and villagers, thereby constructing a multi-entity coordinated governance mechanism to effectively address the prominent problems currently faced.
Introduction Research on disparities in risk for hazardous drinking and alcohol-related problems have consistently found higher rates of alcohol consumption, hazardous drinking, and alcohol related problems among sexual minority women compared to heterosexual women. For example, probability studies of alcohol and drug use in the United States that include sexual orientation measures, such as the National Alcohol Survey and the National Epidemiological Survey on Alcohol and Related Conditions have found higher odds of reporting heavy drinking, alcohol-related consequences and dependence symptoms, other drug use, and substance use treatment among SMW compared to heterosexual women . Research from other countries also suggest higher risks for alcohol use disorders and alcohol-related problems among SMW compared to heterosexuals . Minority stress is one of the primary theories for explaining disparities in risk for psychological distress and other negative health outcomes among sexual minorities . According to minority stress theory, the cumulative impact of stress associated with prejudice and discrimination, expectations of rejection, managing visibility of identity, and self-stigmatization contribute to increased risk for psychological distress and health problems . Research confirms that health outcomes, such as alcohol-related problems, are predicted by minority stress at the individual-level , interpersonal-level , and systems-level . More recently, minority stress theorists have suggested viewing disparities through a lens that simultaneous attends to the negative impact of minority stress and factors that contribute resiliency and stress resistance . Research to date has focused disproportionately on negative health outcomes associated with minority stress, while studies focused on factors that allow sexual and gender minorities to thrive in the face of adversity are still emerging . Meyer emphasizes the complementary relationship between minority stress theory and emerging research on resilience and coping among sexual minorities, pointing out that the impact of stress on health is influenced by resiliency factors and coping processes. Meyer defines resilience as "the quality of being able to survive and thrive in the face of adversity," which may include a wide array of factors that "can lead to a more positive adaptation to minority stress and thus, mitigates the negative impact of stress on health ." Coping refers to the "efforts the person makes to adapt to stress" , whether or not those efforts are successful. Similar to minority stress theory, research on resilience and reducing stigma among sexual minorities focuses on factors along a social-ecological continuum, from proximal to distal influences . Kwon's review of literature on resilience identified three factors that promote health and well-being in LGB populations: social support, the ability to accept and process emotions, and hope and optimism. Other reviews have also identified individual level protective factors , but concurrently emphasize the importance of interpersonal factors and larger community and structural contexts such as access to LGBT community resources, advocacy for affirming laws and policies, and influencing social norms and attitudes . Studies on risk and resilience among sexual minorities have disproportionately focused on men , although there appear to be differences in experiences of minority stress and resilience by gender that warrant exploration . For example, a review and empirical study of resilience among sexual minorities found that support from heterosexual friends and family were more significant predictors of resilience among SMW than sexual minority men . There remains a need for research designed to better understand factors that may protect against hazardous drinking and other health risks among SMW . A few studies have examined strengths and coping strategies among SMW that appear to buffer risk of hazardous drinking and related health problems. For example, Lewis and colleagues found that social connectedness reduced risk of hazardous drinking among lesbians . Other recent studies have also emphasized the important role of connection to LGBTQ community , collective self-esteem , and positive identity in buffering the impact of minority stress on hazardous drinking and mental health outcomes among SMW. Studies have also underscored the role of positive coping and coping through education/advocacy rather than maladaptive coping in risk of hazardous drinking and psychological distress among SMW. Although these studies provide important insights into the strengths and coping strategies of SMW, a majority of these studies are conducted with non-probability samples of SMW and may not fully capture the strengths and coping strategies of SMW in the general population. A majority of studies with sexual minorities rely on non-probability samples obtained through LGBT venues, media, or social and community networks . Non-probability samples of sexual minorities likely disproportionately represent individuals who are visible and connected to sexual minority communities; consequently, individuals sampled through non-probability methods may have different characteristics and may experience different stressors and resiliency factors than sexual minorities who are recruited through probability sampling Although stigma and fear of discrimination may impact participation and disclosure of minority sexual identity in probability samples , population-based studies remain important for obtaining minimally biased samples of SMW. Because research on strengths and coping strategies of SMW have relied primarily on non-probability samples, the experiences, perspectives, and strengths of SMW who may not be actively involved in LGBT communities or social networks are not well explored. Furthermore, studies that rely on nonprobability samples of SMW rarely afford the opportunity for comparisons with heterosexual women from a similar sampling frame. In this study, we draw on qualitative narratives of sexual minority and heterosexual women who were recruited from a population based sample to explore the following research question: How do sexual minority women describe their strengths and coping strategies, and how might these differ by sexual identity? --- Methods This project was part of a larger mixed methods study designed to explore correlates of alcohol and drug-related problems among sexual minorities compared to heterosexuals. Indepth interviews were conducted with 48 women who were recruited as a follow-up interview sample from a larger national telephone-based quantitative household probability survey, the National Alcohol Survey in 2010 . Women who were classified as sexual minorities in the National Alcohol Survey and a matched group of exclusively heterosexual women were invited to participate in an in-depth, semi-structured interviews conducted by telephone. The matched heterosexual sample was created by generating list of randomly selected exclusively heterosexual women matched to key characteristics including age, ethnicity, relationship status, education, drinking status in the past year and a lifetime measure of having consumed five or more drinks at least monthly throughout at least one decade of their life. The lifetime heavier drinking measure was constructed as a dichotomous variable based on responses to questions about how often respondents had five or more drinks on one or more occasions in each decade of their life depending on age. The list of prospective heterosexual matches was identified as interviews with SMW progressed. This process allowed us to obtain matches for individuals or groups of respondents who shared similar characteristics. For example, one white heterosexual women, aged 50-59, in a partnered relationship and with a high school education, might serve as "match" for three SMW with similar characteristics. Excluding disconnected/wrong numbers or ineligible respondents, the response rate was 50 percent . The final qualitative sample for the parent study included 32 SMW and 16 exclusively heterosexual women. Participant age ranged from 21 to 67 years of age. Approximately 64.6 percent of the participants were White, 22.9 percent were African American, and 12.5 percent were Latina. Approximately 31.3 percent were heavier drinkers at some point in their lives. Interviews were conducted by telephone using a semi-structured interview guide. Because the purpose of the parent study was to explore potential correlates and mediators of alcohol and drug problems among SMW, the interview guide used a life-history approach and consisted of questions that encouraged story telling rather than responses to narrower questions that presumed specific experiences, risks or protective factors. Although the interview guide included topics that had been identified in the National Alcohol Survey as associated with alcohol use and alcohol related problems, questions were framed to explore broadly participants' perceptions and life experiences. An early version of the interview guide was pre-tested with a small purposive sample , and refined for use in the final study. The interview included eight primary questions and follow up probes related to study participants' life experiences in several areas including family of origin, friendships, identity, substance use, intimate relationships, trauma, experiences of being treated differently , and experiences of recent stress. For example, the identity questions invited participants to talk about groups and communities with which participants identify and how their identity fits into their life story. Since participant descriptions related to strengths and strategies for coping with stress or life challenges were embedded in responses to different questions, responses to any question related to mobilizing strengths in the face of adversity or broad coping strategies were included in analysis. Interviews were conducted between March and December of 2011 and lasted from 45 to 90 minutes. Interviews were audio taped and transcribed verbatim and qualitative data were managed with the assistance of qualitative software program . An inductive thematic analysis was used to identify repeated patterns of meaning across narratives. Open coding was followed by an iterative process of identifying common categories and emerging themes. Although constant comparison is often associated with grounded theory research, it is also used in thematic analysis to compare meanings and categories within interviews, between cases, and between groups . In the current study, the authors used a constant comparison approach to compare emerging meaning units and categories across cases, and to identify contrasts in themes between the narratives of sexual minority and heterosexual women. The goal of this comparison was to identify strengths and coping strategies of participants, highlighting themes related to resilience and coping with stress that were particularly salient among SMW. The authors maintained an open critical dialog about the emerging categories throughout analysis and used a consensus model in reviewing, revising and finalizing themes. In reporting the themes that emerged through this process, we intentionally privilege the voices and perspectives of SMW by briefly summarizing ways the themes diverged between sexual minority and heterosexual group and illustrating themes salient to SMW with quotes. --- Results Themes related to developing strengths in the face of adversity and coping with stressors that were particularly salient in the narratives of sexual minority compared to heterosexuals emerged in two broad areas: 1) creating and celebrating positive identity and 2) cultivating connection and community. --- Creating and Celebrating Positive Identity Nurturing an authentic sense of self-Although a few heterosexual women described overcoming obstacles in the process of forging a personal identity or developing self-esteem, such as on participant who identifies as "a parent, a grandma, a doer" but described being a "victim of verbal abuse for 20-some years" who "didn't feel I got the confidence and self-esteem until I started going to church," the narratives of sexual minority participants more frequently described active efforts to create a positive and authentic sense of self. These efforts were often described as a developmental process, which involved overcoming negative messages from family members and other social institutions, such as churches, over time. This dynamic was also often described in relation to ongoing efforts to defend against harmful messages or treatment. For example, one lesbian described that when her identity "comes under some kind of an attack" she seeks "opportunities to learn about people and to learn about systems and to learn how to find the good people in those systems or the support people in those systems." She concludes, "My identity has become stronger over time." The following quote from an African-American lesbian also exemplified this theme. And ever since I opened up that closet there's been family members that have been trying to put me back in the closet. There's been people that's been in my corner saying look, you've got to live your life for who and what you are and don't worry about what people think. So I'm at the point in my life where I'm not caring about what people think. I'm a person that beat to the beat of my own drum. I've always been that, so why wouldn't my sexuality be like that as well. I am defined by a black lesbian woman that I am. And it's not an easy thing to be because the majority of people don't like me because of my choice but I can't worry about what people think. Embracing multifaceted identity-Heterosexual women and SMW both described a mix of social roles and social locations in their narratives. For example, one heterosexual women described herself as a "wife and mom" and "just your boring Caucasian middle class female" and another said, "I'm an aunt, I'm a grandma, I'm a mother, and my heritage is Mexican Indian" . Many heterosexual women explicitly described religious affiliations or being "spiritual" as important to their identities, or highlighted work roles and specific social group memberships that mattered to them, such as one who described an important part of her identity, "I am an absolute diehard Boston Red Sox fan" When asked about their individual identity and groups with whom they identify in an openended question, it was notable that many SMW in this sample describe a wide range of identities and community memberships that were frequently more divergent than those of heterosexual women. Many times, SMW referred explicitly to intersectional identities, such as one participant who commented, So I am a black gay woman and I think that impacts a lot of what I do every day, all of the time …to the point where I, my future career, I want to do direct advocacy work and women's health hopefully in minority communities. Although women often referred explicitly to sexual identity, race and gender, they also more frequently emphasized other identity labels, such as "artist," "writer," or "activist." For example, one bisexual/pansexual participant described her identity as "a very open-minded musician." Many concurrently described their identities in relation to their profession, roles related to work , or home . For example, one bisexual respondent stated, "my biggest identity would be my work identity where I lead a fairly large group of people, so that would be my first identity currently. I do have other roles in my life; I have my identity as a mom." --- Cultivating Connection and Community Navigating distance and closeness with family of origin-Narratives about relationships with family of origin varied among participants, and both heterosexual and SMW typically used language that described their relationships with families in terms of distance. Several common phrases were used to describe their family relationships such as, "we're distant," "we're not very close," "we're very close." However, analysis of the narratives of family histories among respondents revealed that it was more common among sexual minority participants than heterosexuals to describe shifts in distance and closeness, which often changed over time, in relation to anticipated or experienced level of familial acceptance. For example, one bisexual respondent described tolerating a period of disconnection that was linked to parental disapproval. So I'm very close to my mom, though we had a brief period in my early 20s when we had a bit of a rift when I came out as bisexual, but we are very close again, so it's just she had some struggles around that. Some participants actively created distance from family of origin temporarily because of fear of family reactions. This was exemplified in a comment by one lesbian participant , And I sort of pulled away from everybody somewhat when I started to realize my sexuality because I was kind of scared and not sure of the acceptance, which I think is fairly common. But once I came out and they went through what they needed to go through, everything is fine. A few participants described maintaining more permanent boundaries with their families as a whole, or specific family members, as protection against rejecting or hurtful behavior related to sexual identity or gender presentation. For example, one SMW explained that the reason she became less involved with family holidays over the years "was unacceptance, in a sense -too much judgment...It just wasn't fun anymore." Cultivating supportive friends and chosen family-One of the primary themes related to both strengths and coping in life narratives of all women centered on creating family and cultivating supportive social connections. For example, one heterosexual women emphasized the centrality of her husband and close friends, who she met primarily at work or school, and commented on how "I like to air my ideas and complain and vent and maybe get advice" when under stress. Similarly, a bisexual woman described using alcohol and drugs to cope with stress when she was younger, but now "I prefer to talk it out, that's the best way --you just got to find the right person to confide in." However, the definition of "family" and the construction of social connections were more varied among the narratives of sexual minority participants than heterosexual women. For example, one woman who is estranged from her family of origin stated, "my family is who I choose at a particular time in my life." Participants also frequently described friends and friendship networks as important strengths. In addition to personal friendships, may participants also described the importance of friendships that were linked to organizations or causes that were important to them. One bisexual participant commented, I have a lot of individual friendships; really special people all over the world. The closest I come to sort of group friends is that I'm a political activist, so a lot of my friendships are sort of within the bounds of my movement work. Many participants described both informal and structured groups that were described as "helpful" with mediating both minority and general life stressors. For example, one bisexual woman described a game group that she joined, "which I'm glad, because it's like therapy, once a month go and play cards and talk shit, drink some beer." Some descriptions of group membership are more formal, and explicit in relation to their therapeutic nature. For example, one lesbian participant described her sense of the impact of connecting with others by joining a self-help group. She further explains that through that group she learned how to give and receive support. Yeah, I have--since I'm a recovering alcoholic and addict, I think I've started to really develop social connection and relationships after I got in recovery. When I got into recovery, you begin to share with people who have been and had your similar experience. But that's where I learned about give and take, support and getting support. I mean, that is an incredible--I consider it a good thing that happens to those in recovery. We begin to learn how to do those things with people. Most of the participants in relationships spoke about their partners as important sources of meaning and support, typified by one lesbian participant who summarized "we're here for each other every day in every way." Relationships were described as providing "emotional security" and a place where "you can just say anything to your partner, be able to talk about things that are happening day-to-day or in the news or with other friends." Narratives among SMW diverged from heterosexual women primarily in relation to describing having to cope with disapproving family members or hostile work environment. For example, one lesbian respondent described "having to become secretive and closeted in my forties" until her partner left the military: " I feel sad for the time that we had to give up while we were waiting for this time that we have before us but we both feel hopeful about the future." Connecting to community-Participants varied in the descriptions of community connection, from those who described having "no affiliations" to into those who described being highly engaged in social or volunteer communities. Although being part of community was important to both heterosexual and SMW participants, the narratives of SMW were more likely to reflect experiences of feeling isolated until discovering connection to affirming community. In many cases, SMW described the importance of connecting to LGBTQ specific communities. One lesbian participant described the process of her discovery of LGBTQ community that typified this theme. "It was until I was 30 that I was closeted -then at 30, which is almost 40 years ago, I became aware that, oh, my goodness, there were other people like me, and that was fun." She went on to elaborate, And, you know, every one of those people, just like me, have a story to tell, and there's pain in every one of those people's stories, loneliness, hesitancy in coming out, not so hesitant, sickness, AIDS, on and on and on. And I just thought, wow. No reason to feel alone anymore. There was a wide variety of affirming community groups that SMW described as central to their lives, such as "underground dance scene" and "political activism for women's rights." For example, one bisexual women identified as a Star Trek fan, emphasizing the accepting and affirming values of the fan sub-culture and reflecting, "that fandom was really, more so than my family, probably with the exception of my grandfather, what really formed who and what I am and who and what I became." She described how her identity as a fan "became my social outlet and my social life" and connected her to "a whole wild creative movement." Several SMW explicitly described past negative experiences with religious family members or religious institutions, such as one lesbian participant who shared that she grew up going to a church with her family that was "extremely not gay-friendly at all." At the same time, close to one-third of SMW in the sample mentioned religion or spirituality as an important source of strength or as a defining dimension of their identity or community. One lesbian stated, "I associate my identity in church as a choir member and my belief in God has never wavered regardless of who I date or who I'm with." Religious and spiritual affiliations varied considerably among SMW . A few women who identified as in recovery from alcohol or drug dependence described a belief in a higher power as important for maintaining sobriety. For example, one lesbian participant said "I talk to God every day; we have numerous conversations all day every day and I ask him to give me strength and I don't drink as much." Although involvement in religious or spiritual communities appeared to be more noticeable in the narratives of heterosexual women, some SMW described finding and valuing such communities, such as one lesbian participant who described finding a "church that has a special ministry and actually has broadened its ministry to people who are also gay, bisexual, or transgender." Finding joy and solace with animals-Several participants in this study described dogs or other animals as playing important supportive roles in their lives. Participants described animals as providing companionship and enriching their lives. For example, one lesbian participant noted that she and her partner defined family as "us and our dog and our cat." Another lesbian referred to her dog in response to a question about friends: "You know, I left out a friend -my dog. It may sound weird. He's a great companion and all and as a result, we do a lot of walking and all that stuff.... He's just a good companion and since I live by myself especially." Other participants described the positive impact of animals on social life, such as one lesbian participant , who described joyful experiences with her dog, explaining "I go over to the dog park a lot with her and there are lots of people there and I meet different people there too." The following statement of one participant described comfort that she found through a pet: Right now I'm not intimate with anyone, which I'm happy--I'm not happy with. It would be nice to have someone in my life. That's why I went and got a guinea pig so I'd have somebody happy to see me when I get home. Engaging in collective action-Many sexual minority participants described finding meaning and empowerment as members of organizations that promote social change or that address social issues. Although some heterosexual women also described being part of activist organizations, such as one participant who was involved with "environmental concerns and civil rights and tenant rights," this theme was more evident in the narratives of SMW. For example, several SMW described their roles as community organizers, feminists or activists as important to their part of their current lives or their history One lesbian reflected, I've always been a person who is involved on and off socially, when I lived in Upstate New York, when the AIDS epidemic came out there was a bunch of us that would go to churches, especially African American churches and this was in the '80s and try to talk with them about gays in their church and the message that they usually give and how that's keeping people--not helping people in their congregation who may be gay and so that's helping to spread the AIDS epidemic. Several participants also described finding meaning and purpose in working collectively as part of social movements, political groups, humanitarian causes, or charitable organizations, such as one bisexual woman who described her political activism, noting, When I was able to understand the systems at work in the world that are-then I sort of understood my own agency better and I think I felt much more empowered to make change. I found my voice more and my ability to show leadership and take initiative in certain ways. --- Discussion This study explored self-described strengths and strategies for coping with stress among SMW, with a specific focus on themes that diverged or that were particularly salient for SMW, compared to heterosexual women. In a context where SMW experience minority stress on multiple levels --individual, interpersonal, and community/societal --it was noteworthy that strategies for coping and strengths described by SMW were reflected on a similar continuum. On an individual level, SMW women described intrapersonal strengths that centered around the creation and celebration of positive identity through nurturing an authentic sense of self and embracing multifaceted identities. On interpersonal and community/societal levels, participants described intentional development of strengths and coping strategies related to creating connection and community in five areas: navigating distance and closeness with family of origin, cultivating supportive friends and chosen family, connecting to community, finding joy and solace with pets, and engaging in collective action. Although heterosexual participants described some similar themes, such as dealing with family of origin issues and struggling to create and maintain social support, the narratives of SMW included greater complexity and specificity in relation to creating identities, reconfiguring family and social networks, and community connections that were affirming for them. For example, SMW participants in the current study articulated the importance of creating positive identity as well as finding communities that are affirming in relation sexual identity. Embracing positive identity and connecting to supportive communities may be important strategies for countering microaggressions, the everyday derogatory messages and hostile behaviors directed toward marginalized social groups such as sexual minorities and people of color . It is important for helping professionals working with sexual minorities to recognize that processes of assessing risk of identity disclosure, synthesizing multiple identities, choosing battles, and cultivating authenticity in often adversarial environments are ongoing, and often require continuing evaluation and development of new solutions . Although several of the themes in this study are reflected in other research focused on resiliency among sexual minority populations, such as the importance of positive identity development and the value of connecting to supportive LGBT communities , it was notable that, when afforded an opportunity to describe identity and community in an open-ended fashion, participants often described a wide array of social roles, affiliations, or personal characteristics that had meaning for them. SMW frequently emphasized the importance of social group membership to their sense of belonging, whether these groups were professional, social, political, or artistic. Sexual minority specific networks and connections were mentioned frequently in the life stories of SMW, but were not generally described as the first or most salient source of identity or affiliation. Since many studies with SMW draw from volunteer samples, it is possible that the respondents in this follow-up study of a population-based sample reached SMW who are not typically accessed in such studies. Future studies are needed to better understand differences in characteristics and community connectedness between probability and nonprobability samples of sexual minorities. One of the purposes of this study was to broadly explore the narratives of SMW to identify potential coping strategies that may be neglected in literature to date. Some coping strategies described by participants in the current study have been echoed in other qualitative studies of life narratives of SMW, such as creating alternative family and connecting to community ; however others are less evident in studies to date, such as finding joy and solace in relationships with pets. Although the role of pets or animal companions is not typically mentioned in literature on resilience and coping strategies of SMW, one notable exception is the work of Putney ), who conducted qualitative research to explore the perceived impact of companion animals on the psychological well-being of older lesbians. Similar to some of the participants in the current study, participants in the Putney study referred to their animals as family, described animal care giving as meaningful and fulfilling, and outlined ways that bonding with an animal helped to alleviate stress . Putney's research ) provides insights about why relationships with animals may be protective against the impact of minority stress for SMW. For example, Putney identified four areas of well-being that were enhanced through human-animal interaction: self-acceptance, positive relationships with others, personal growth , and sense of meaning and purpose in life. Furthermore, the impact of companion animals on the psychological wellbeing of SMW may be particularly salient to SMW, who may experience less support from families of origin and more stressors related exposure to heterosexism in daily interpersonal interactions . Specifically, for some SMW, animals may help in fostering a sense of companionship and connection to community, navigating life transitions and losses, and buffering against stressors such as heterosexism . The importance of animal companionship, for at least some SMW, may be useful to consider in future intervention research. --- Limitations Although this study was based on interviews with a follow up sample of respondents from a national survey and, as such, may be less biased than regional non-probability samples, there are several limitations. First, the interview guide for this study was designed to explore in an open-ended manner the experience and perspectives of participants. Consequently, it was not possible to explore participant perceptions of different dimensions of minority stress and narratives varied considerably in the degree to which they addressed participant strengths or sexual-minority specific coping strategies. Second, although the follow-up study sample was drawn from a national population-based study, there is a risk of self-selection bias and it is not possible to generalize findings from interviewees to the general population. Third, interviews were conducted in English and perspectives from monolingual Spanish speaking respondents, who were included in the original national survey, are not represented. Fourth, the interviews were conducted by telephone and, although there is an emerging literature pointing to the comparable quality of qualitative interviews conducted in person and by phone including study specific to this project , it is possible that in-person interviews may have generated richer data. Finally, the interviews were conducted before significant policy changes in the United States that granted marriage recognition to same-sex couples. Although such shifts in policy and social context may influence experiences of stress and coping, research suggests that coping with stigma remains salient to sexual minority experience even after significant changes such as marriage recognition . --- Implications for Practice and Research In spite of limitations, the findings of the study identified themes that may be useful in the an emerging body of research on resilience among SMW. In the current study, participants described a wide range of identities and community affiliations that were salient in their lives and support networks. These findings underscore the importance of conducting future research on possible protective factors using both probability and non-probability samples. Research with sexual minorities continues to rely heavily on non-probability sampling for several reasons. Non-probability samples with sexual minorities are more feasible than probability sampling in terms of cost and time, yield samples of sufficient size to allow examination of within group differences , and allow for exploration of sexual-minority-specific risk and protective factors . At the same time, studies comparing probability and non-probability sampling suggest that sample characteristics, and indicators of risk and resiliency, may differ between SMW who represented in studies using different sampling strategies . One recent study revealed both similarities and differences in risk for hazardous drinking, drug use and psychological distress between SMW from a large non-probability sample and women from a national probability sample . Similar quantitative comparisons between SMW using difference sampling strategies, with heterosexual comparison, are needed to further investigate potential similarities and differences in measures of resiliency and coping. For example, future research with different samples of SMW could compare social support, community connections, and coping strategies between SMW in non-probability samples and those from probability samples, who may be less connected to sexual and gender minority organizations and social networks. Thematic areas identified in this study suggest domains that may prove useful in interventions designed to enhance resiliency and foster coping strategies to protect against health risks, including hazardous drinking, among SMW. Fostering a strong positive identity and collective action emerged as important strengths in this study. Teaching clients specific skills for coping with discrimination, such as education and advocacy appear to be important to fostering positive identity . Cultivating supportive relationships and navigating distance and closeness with families also emerged as important coping strategies. The salience of these factors may be particularly important in social and political contexts in the United States where an increase in negative rhetoric and discriminatory policies impacting sexual and gender minorities appears to be amplifying stress on individual, family, and community levels . Community connection was also an important theme in this study. Other studies have documented the value of connection to sexual minority community for coping with minority stress among SMW . In our sample, participants identified a wide range of communities that were important sources for accessing support and coping with stress, which included but extended well beyond, sexual minority specific communities. These findings may serve to remind helping professionals of the importance of investigating and supporting connections to communities that are most salient to the identity and priorities of individual SMW. In the current study, several participants highlighted the importance of religion or spirituality in relation to creating community or coping with stress, while others pointed to religion as a source of conflict. These findings also underscore the importance of attending to individual experiences and perceptions of the spirituality or religion in creating community and finding meaning among SMW.
This study explored self-described strengths and strategies for coping with stress among sexual minority women (SMW), drawing on qualitative narratives of sexual minority and heterosexual women who were recruited from a population based sample. In-depth follow-up qualitative telephone interviews were conducted with 48 women who had participated the National Alcohol Survey, a U.S. population-based survey. Participants included 25 SMW and 16 matched exclusively heterosexual women. Narrative data were analyzed using inductive thematic analysis and constant comparison to explore the study aim, with an emphasis on themes that diverged or that were particularly salient for SMW relative to heterosexual women. Strengths and coping strategies that were especially meaningful in the narratives of sexual minority women emerged in two areas. First, participants described development of intrapersonal strengths through nurturing an authentic sense of self and embracing multifaceted identity. Second, participant described multiple strategies for cultivation of interpersonal resources: navigating distance and closeness with family of origin, cultivating supportive friends and chosen family, connecting to community, finding solace and joy with animals, and engaging in collective action. Findings underscore the importance of considering protective factors that are salient to SMW in developing or refining prevention and intervention efforts.
Introduction Accounting for more than 60% of all annual deaths worldwide, chronic diseases are the leading cause of mortality in the world and in Europe [1,2]. In the European Union , 40% of the population aged over 15 live with one or more chronic diseases, resulting in reduced quality of life and considerable economic costs [3] While hereditary and environmental causes of chronic diseases are well documented, lifestyle factors and health behaviours also play a critical role [4][5][6]. It is estimated that by eliminating the main risk factors the prevalence of chronic diseases could be halved [7]. While health care policy is the responsibility of Member States, the EU plays an important role in allocating resources and coordinating efforts to address common challenges, such as portability of health care benefits , prescription standards, safety and quality standards, and prevention of communicable and non-communicable diseases [8]. Recognising that issues related to public health are not confined by national boundaries, the EU has held a mandate for public health going back to the Maastricht Treaty . Through the first Community Health Strategy and the three subsequent Health Programmes, this mandate has expanded to include a focus on health promotion, education and information, and healthy lifestyles [9]. Implementation has often taken the form of consultations with key stakeholders as well as legislation and recommendations . In addition, the EU is responding to calls for increased coordination in risk communication and health promotion [10] by supporting a series of pan-European campaigns. Noteworthy are campaigns to promote tobacco free lifestyles and physical activity, including HELP-For a life without tobacco, Ex-Smokers are Unstoppable, the European Week of Sport and BeActive. Recognising the increasing role of EU in spearheading communal action in the area of public health, the 2013 European Council senior level working group on "optimising the response to the challenges of chronic diseases", called for integrated action across EU member states, including the implementation of cross-national health communication campaigns for primary prevention of chronic diseases [11]. We define cross-national health communication campaigns as cooperative efforts involving multiple EU Member States initiated at the supranational, EU-level, and such campaigns are the focus of our analysis. These are distinct in their complexity from local cross-border cooperation, defined as collaborative efforts initiated by two or more bordering countries, which have a considerably longer tradition in Europe. To be sure, all health communication campaigns raise a host of complex challenges, but our focus here will fall on those that derive from the need for coordination and practice harmonization between numerous and often very different actors across borders. Further research on cross-national campaigns is needed because many health challenges are taking an increasingly pan-European dimension and because coordinated cross-national efforts are associated with numerous benefits. These include reaching a broad target population; achieving economies of scale by pooling resources and coordinating efforts; promoting health communication in countries or regions where such strategies have traditionally been under-used [12]; ensuring an appropriate flow of resources into health promotion efforts [13]; facilitating learning and transfer of knowledge across borders and stakeholders [14]; and contributing to reduced health inequalities across countries [6,13]. Despite these advantages, research on cross-national health communication campaigns is scarce, with the specialised literature reporting mainly on the numerous instances of national and local level initiatives. A comprehensive literature review of communication campaigns addressing chronic diseases [15] found only one out of 63 selected articles [12] presented data on a European crossnational campaign. There is also scarcity of theoretical discussion of public health campaigns in cross-national settings. The available frameworks and conceptual models, understandably, are developed for the much more common case of local or national campaigns and focus on the details of messaging [16][17][18], targeting [19,20] and strategy [16,18] rather than on the complexities of managing heterogeneity of goals and target groups as well as cultural, institutional and political underpinnings between national settings. Our work aims to complement this body of research by focusing on the higher aggregation plane of cross-national campaigns where aspects related to heterogeneity, harmonization and coordination can, at times, be more salient than the practicalities of campaign design and implementation. In order to enhance the effectiveness of cross-national health communication campaigns in Europe and in other trans-national settings, and facilitate capacity building in this area, it is important to systematise existing knowledge on coordinated public health interventions across several countries. We believe our research is timely as cross-national communication campaigns are an important and as yet under-utilised element within broader strategies to bring about structural changes in the behaviour of individuals. It also specifically contributes to address the above-mentioned call for greater coordination among EU member states for prevention of chronic conditions [11]. To this end we build on insights and experiences gathered from focus groups with diverse expert stakeholders to address two issues. First, the challenges specific to implementing communication campaigns in cross-national contexts and how best to address these; and second, the added value of cross-national health communication campaigns. We discuss results with a view to informing policy-making and contributing to the evidence base for the design and implementation of European cross-national health communication campaigns. It should be noted that while we believe the research presented here makes a meaningful contribution to the evidence base on this topic, the study carried out was exploratory in nature and our analysis is, owing to the scope of the overall project, based on limited data gathered over the course of the aforementioned focus groups. --- Data collection and methods --- --- Procedure The focus group sessions were held in Brussels in February and March 2015 over the course of four days. The activities were designed to encourage consensus-building, allowing for the systematic collection of both individual and group generated insight. Each focus group was facilitated by a moderator and a note-taker and discussions were audio recorded following prior written consent. The structure of the exercises was harmonised across the four focus groups to ensure consistency and comparability. The first activity consisted of a short, open-ended brainstorming exercise in which participants worked in pairs to answer the question: "Drawing from your previous experiences in cross-national health communication, what are the main challenges associated specifically with cross-national campaigns?" Additional prompts included: "what is the added value of cross-national campaigns?"; "what are the structural cross-national challenges?"; "what specificities are associated with the risk factor?"; and "what is the role played by supra-national bodies?" Each pair of experts contributed between 3 and 5 challenges, recorded separately on index cards. The second activity consisted of a plenary clustering exercise in which each challenge was individually addressed and in which participants were asked to elaborate on each challenge. The moderator led and recorded the outcome of the discussion, clustering emerging themes on flipchart paper based on group consensus. Following the conclusion of each focus group, the moderator and note-taker held a debriefing session to discuss the key issues that emerged. --- Analysis Given the limited research on cross-national communication campaigns, we followed an inductive approach to data analysis [24]. In a first step, the moderator and note-taker discussed and documented insights gained during the debriefing session [25]. The challenges recorded on index cards during the first activity were then analysed and coded. These codes emerging from the index cards formed the main themes . Subsequently, the verbatim transcripts of each focus group were uploaded into MAXQDA software and analysed using thematic analysis. The coding of transcripts consisted of analysing each sentence or paragraph to understand 'what is being said here?' and thus attaching a code or label emerging from the data to blocks of text. Each code was then assigned to one of the main themes derived from the index cards or placed separately if it indicated a new emerging main theme. In the process we sought to identify common themes across the four data sets [26][27][28], to systematically appraise the codes and where appropriate, these were then clustered into more general categories or sub-themes [24]. The final code list included nine core themes and their respective sub-themes or codes . In the final phase of analysis, all transcripts were re-coded according to the new code list and in-depth descriptions of the identified themes and sub-themes were extracted from the data. The frequency with which each sub-theme appeared or was coded across the four data sets is presented in Table 2. To ensure reliability of the data analysis, two researchers coded each transcript independently. Any disagreements were resolved by the research team until consensus was reached. The final coding structure was discussed and agreed to by the research team. All transcriptions were anonymised prior to analysis. --- Results We first present the challenges identified by focus group participants, presented in Table 2, which are classified into two main categories: challenges common or relevant to all groups; and risk factor-specific challenges. Each is presented in turn below with direct reference to their impact on the design and implementation of cross-national communication campaigns. We then present the findings that emerged from the focus groups concerning the added value of cross-national campaigns. --- Operational divide between supra-national and local actors Participants pointed to the challenge inherent in the division of roles between the supranational, national and local levels. They stressed that EU involvement is not necessarily seen as a positive in some countries, but rather as interference in national affairs. As a consequence, people may be less receptive to a campaign's message if they perceive it to be an intrusion into their personal lives by an external, supra-national governmental body. On the other hand, the concept of subsidiarity, which in this context means decentralising responsibility for the planning and implementation of a campaign to the local level, is only a viable option if the national landscape is supportive and the local authority has the necessary capacity to lead the campaign. If it does not, due for example to lack of political will and/or lack of resources, then being part of a broader EU network was perceived to be a distinct advantage. Participants across the focus groups agreed that epidemiological, cultural and institutional differences result in the need to identify relevant actors who are familiar with the local context. Strong local networks were considered key to the successful implementation of a crossnational communication campaign, as the key actors, people in the community who have authority and the trust of the population, e.g. medical doctors, vary from one local context to the next. Nonetheless, the use of local partners has its own challenges, because identifying and coordinating relevant stakeholders at different governance levels who represent a range of interests, was perceived as a considerable undertaking. --- Varying health behaviours, cultural and social norms A major obstacle in designing cross-national health communication campaigns emphasized by nearly all participants is the marked differences in the patterns and prevalence of health behaviours in European countries. Participants emphasised that some countries are ahead of the curve in the "smoking epidemic" cycle , while others still face high prevalence and low rates of decline . Dissimilar patterns are also observed for dietary habits, levels of physical activity and alcohol consumption. According to participants, such variability renders the definition of precise campaign objectives exceedingly difficult in a cross-national setting. The dynamic nature of health behaviour patterns at the national level also emerged, interwoven as they are with historical processes that include past legislation, policies and health campaigns, and shifts in cultural paradigms: Differences in patterns and prevalence of health behaviours derive in part from contrasting cultural and social norms. This challenge was more prominent in the alcohol and unhealthy diet focus groups, as social norms were perceived to underpin the "drinking culture" and food consumption in each country. In the case of unhealthy diet, food consumption is also heavily determined by local availability of products. As a result, certain behaviours may have different underlying causes and require a differentiated approach within a cross-national communication campaign: "[. . .] for example, in Finland or in several other countries that have more salty fish-you know, this salty smoked fish-[. . .] this was chosen as the first target to decrease salt content. In Hungary it was not interesting because we don't have such a product and we don't eat that." Social norms influence what is considered 'healthy', acceptable social behaviour, and the receptiveness to governmental intervention. For this reason, participants maintained that understanding variations in social norms is critical if a campaign is to be on target and on message. For example, food consumption is heavily determined by ingrained culinary traditions. With alcohol consumption, where evidence of its harmfulness is less absolute, and where the type of alcohol consumed differs between countries and population groups , participants stressed that it can be difficult to decide between promoting adherence to general consumption guidelines, or focusing on, for example, heavy drinkers. "If you --- Language differences and varying utilisation of communication channels and media Social and cultural norms also inform language and messaging. Participants in all focus groups expressed reservations about the feasibility of having a European-wide message that both appeals to audiences across countries and is not so generic as to lose its impact and meaning. The exception to this was the above-mentioned tobacco cessation messages. On the other hand, tailoring a campaign message for each respective country context was seen as a costly endeavour as it requires more than mere literal translation. In order to effectively convey the campaign message to the desired target group, participants reflected that it is often necessary to adapt terminology, tone, expressions and even the role models used to deliver the message in order to capture local idiosyncrasies and to appeal to different attitudes and cultural values: ". . . --- due to cultural differences, you think that you [are] using the same words, but you could have completely different interpretations of that word Or a referee [i.e. a role model] in one country could be seen as a big authority and in another country a big loser." Users of specific types of media often belong to different socio-economic and demographic groups depending on the country or region, making it difficult to select just one channel of communication to suit every context. The participants in the smoking and sedentary lifestyle groups raised the issue of participation in social media to illustrate this point. Use of social media varies across Europe , as does Internet coverage and use of mobile technology. Experts indicated that more traditional communication channels including print media, television and radio should not be underestimated because in many contexts, these still have broad reach. --- ". . .in Denmark, for example, we have something called weekly sales flyers. All the big retail chains once a week send the printed materials to all households. That's a very important channel in Denmark that most other countries don't have." The importance of balancing the local cost of utilising a specific media channel with its expected impact was also emphasized. Given that both these dimensions are highly context specific, the advantage of formulating a uniform communication strategy at the cross-national level was strongly contested. --- Differences in institutional contexts and structural conditions While communication campaigns are important, in order to achieve behaviour change participants stressed that campaigns must be integrated with wider policies and other support measures . The challenge here is that the substance and scope of such policies and services vary substantially across countries. In fact, participants in three of the focus groups discussed the additional challenge posed by differences in relevant national legislation, which can affect the approach and messaging strategy of a campaign. Differences in tobacco and alcohol legislation governing taxation, marketing and distribution determine to a large extent the accessibility and societal perception of such products. Similarly, regulation and enforcement of product labelling and distribution standards for food products varies despite efforts for harmonisation across the EU. Participants in all focus groups agreed that it is not only about current policies or infrastructure, but also about past national policies. In countries with longer histories of public health interventions and/or in which support measures have been in place for longer, there is a higher chance that communication campaigns will achieve their goal, not least because the infrastructure to carry them out is well-established. ". . .people are more aware in some countries, like in the UK they have a long history of public health campaigns and everybody is aware of [the] issues. That's not the case, for example, in Eastern Europe." This speaks to the dynamic historical process alluded to before which shapes existing national regulatory frameworks and policies. The dissimilar institutional and structural conditions prompted participants to question how cross-national health campaigns should prioritise the allocation of scarce resources in order to maximise the return on investment of public funds. While some countries might have the infrastructure in place to work towards the goals of a health campaign-thus enhancing its potential to change behaviour-in others this infrastructure might need to be built, requiring additional resources. The ability of cross-national communication campaigns to build capacity may thus not only be aligned with achieving behavioural change with the least resources spent. --- Framing the message While the challenges described until now apply to all risk factors, two additional challenges emerged that are risk factor specific. The first is the complexity of messaging, which participants associated particularly with communication campaigns targeting unhealthy diets. In this area, campaign messages usually aim for behavioural convergence with certain nutritional standards, which were recognised to be both complex and disputed, as the evidence base linking specific dietary habits and health is subject to regular contestation by experts. Participants stressed that this renders the definition of a single comprehensive campaign message across countries effectively impossible. If one considers differences in national nutrition guidelines, the availability of certain foods and their relevance in the traditional diet and local food industry in each individual country, defining a 'healthy diet' in a consistent manner across the EU becomes a formidable challenge: --- "We know more or less from a nutrient perspective we have a good idea of the balance of nutrients, and we also have a good idea about food groups and what relative contribution they should make to a healthy diet. [. . .] But when it comes down to individual foods then that is very culturally specific. You can't say in Nordic regions generally use olive oil because it's not culturally applicable, it's not available, it's probably not that affordable." Although less prominent, similar issues were raised in the sedentary lifestyle and alcohol consumption focus groups and are liable to affect all campaigns that attempt to address highly complex behaviours. --- Involvement of industry as partners Whether or not, and if so to what extent, representatives of industry should be involved in cross-national communication campaigns constitutes the other risk factor-specific challenge. Participants in the smoking group dismissed the inclusion of industry as a partner. Those in the unhealthy diet group, however, indicated that as the availability and advertisement of healthier nutritional alternatives is crucial to behaviour change, the food production and distribution industries are important partners in any campaign coalition. These same experts nonetheless recognised that industry representatives can be reluctant to support such communication campaigns. In the alcohol consumption focus group experts conceded that there are benefits to be gained from including responsible consumption messages in marketing campaigns developed by alcohol producers. Despite this, participants were keen to stress that "We have to distinguish between partners and stakeholders" , with the industry clearly identified as the latter. A similar discussion can be extended to the benefits of involving political stakeholders in the campaign coalition. --- Value of cross-national health campaigns It was also clear from the participants' accounts that while complexity in cross-national campaigns is inevitably linked to added difficulties, none of the challenges listed above is inherently insurmountable. We therefore settled on the terminology of challenge rather than drawbacks or limitations , as participants across the four focus groups also emphasised the advantages or value of cross-national communication campaigns. They referred to three main points. First is the ability of supra-national bodies such as the EU to bring together national institutions and to coordinate health campaigns built around common objectives or shared messages. While such common objectives seemed feasible in the context of smoking and sedentary lifestyle, there was scepticism about how realistic this would be for unhealthy diet and alcohol consumption. Secondly, cross-national health campaigns were perceived to have the potential to act as disseminators of good practice and capacity-building in national settings where expertise or policy relevance of health campaigns lags behind. Participating in a cross-national campaign may be seen as taking part in "something bigger than just my country" . According to participants, the institutional weight of the EU and accompanying resources can make a difference in such contexts. Finally, according to participants, a supra-national body operates with a longer-term perspective and can thus ensure that the health communication campaign is less dependent on national political cycles, particularly over longer implementation periods. The value of cross-border public health communication campaigns boils down to ensuring goal and message coordination and capacity building, with a broader perspective and longerterm stability than can be routinely expected at the national level. In fact, the stable coordination and collaboration framework that cross-border campaigns provide goes much beyond the depth of providing a EU level recommendation for member states to individually plan and implement communication campaigns in isolation . Therefore, we argue the two approaches should be considered complementary rather than substitutes and should continue to be employed in parallel. --- Discussion The purpose of this study was to identify the challenges specific to cross-national health communication campaigns within the EU community. Indeed, while the findings from the expert focus groups highlighted several challenges inherent to cross-national campaigns, the discussions also reinforced the fundamental value of such campaigns in the broader fight against chronic diseases. The main challenges raised by participants largely stem from the different epidemiological, cultural, and institutional realities that prevail in a given context, whether at the national or sub-national level. In this section we elaborate the challenges identified in the results section above and propose a set of recommendations for overcoming these hurdles. Elsewhere, a series of key design principles for cross-border health communication campaigns has been proposed , which reinterpret these challenges and formulate guiding principles to be applied in the design and roll out phases of these campaigns [29]. --- The right message for the right people In order to effectively reach its target audience, cross-national communication campaigns must be sensitive to variations in population health status and behaviour. This means carrying out basic demographic research during the planning phase and being strategic in selecting the target group. An understanding of the reasons behind demographic divergences is also important as regional and country health patterns continue to evolve and are closely linked to socio-political traditions [30,31]. Equally important is the need to consider cultural and social dimensions. If social pressure against smoking and alcohol consumption is high, a campaign addressing these risk factors can be more effective by highlighting the negative social perception rather than the adverse health impact [32]. In settings where these risky behaviours are more widely accepted, communication campaigns could raise awareness of the health risks through negative messaging. --- Working within countries' political, policy and institutional frameworks The level of commitment on the part of national policymakers to support a campaign is a particularly intractable issue. Political support for a campaign can wane with changes in government or in national priorities. The international nature of cross-national campaigns can serve to de-politicise a campaign and maintain a continuum of support irrespective of changes in the political environment. According to some participating experts, the strategy of designating an international organisation to act as an intermediary and as a more neutral face of a campaign can serve to ease potential frictions between EU and national actors. An additional advantage of this approach is that such organisations, such as the European Heart Network, have affiliate national branches whose networks are a natural starting point for building a coalition of stakeholders at the national and sub-national levels. More important still, existing evidence suggests that health communication campaigns can be effective in raising awareness but their impact on actual behaviour change is limited unless they are coupled with complementary policies promoting structural change [33][34][35]. The EU, through its regulations, directives, and recommendations has some power to implement structural change and has done so in the past with a degree of success. A good example of this is the prohibition of smoking in public spaces [8]. However, as different legislative and infrastructural realities persist in different countries, developers of cross-national campaigns are advised to consider what can realistically be achieved by campaigns that are not tied to policies targeting structural change, and to modify the goals of a campaign accordingly. A noteworthy example is the lack of legislative and conceptual standardisation of what is considered to be a 'healthy diet' [36]. Experts in the unhealthy diet focus group expressed doubts about the scope for a EU-wide prescriptive approach in this area of health promotion, recommending regional level interventions instead. Overall, there seems to be untapped potential to couple cross-national health campaigns with legislative developments addressing life-style risks at the EU-level. --- Building the campaign coalition A well-established strategy for ensuring an effective campaign is building strong partnerships with local actors and stakeholders, with the dissemination of messages aided by inter-agency collaboration [37]. This is especially crucial in cross-national campaigns in which EU institutions are the responsible party. Without strong local partners who are empowered to take ownership of elements of a campaign, international organisers run the risk of overlooking or bypassing certain contextual specificities. Furthermore, in order for local partners to work effectively they must be involved in the inception and planning phases to ensure that a campaign reflects local idiosyncrasies from the outset. In addition to their role as local 'navigators', local partners tend to have access to services, materials and human resources necessary for the implementation of a campaign. Of particular relevance for the composition of a campaign coalition is the possible conflict of interest posed by including industry representatives as campaign partners, apart from the case of smoking where expert consensus calls for their exclusion. The food industry can be responsive to the need to take steps to address healthy diet [38] and the availability of healthy options in stores and supermarkets is an important determinant of healthy food consumption [33]. Conversely, advertising practices of the food and beverage industry are not necessarily aligned with the goals of healthy eating [39] and members of the industry are valuable partners only as long as the aims of campaigns are attuned to corporate practices and interests [38]. There is also some concern about the impact that industry lobbying has had on public health policies at the EU level [8]. The inherent diversity in cultural and institutional frameworks lead us to conclude that cross-national campaigns are most effective when the role of the EU as coordinating body is to provide a guiding campaign framework, or blueprint, that countries can adopt, while making the necessary adaptations and modifications to meet their specific needs, to take into consideration local political frameworks and socio-cultural traditions, and to take advantage of the resources available in their local context. --- Limitations of the study We acknowledge two limitations of the current study. The first follows from its exploratory nature. As the research examines a relatively unexplored field, the challenges identified and the suggestions offered are neither exhaustive nor comprehensively defined. We encourage more detailed research into the specificities of cross-national health communication campaigns. The second limitation stems from the relatively limited sample of experts in our study. Further studies drawing on larger samples are encouraged to address this shortcoming. --- Conclusions This study investigated the challenges in planning and operationalising cross-national health communication campaigns in Europe. Despite its European focus, the findings are instructive for cross-national communication campaigns for the prevention of chronic diseases carried out in other regional contexts. Gathering insight through expert focus groups organised around the four main risk factors for chronic diseases , it is evident that while cross-national campaigns have explicit advantages, they must address national and sub-national variations across a range of dimensions if they are to be successful. These include primarily epidemiological, cultural, and legislative differences. In order to do so, a keen awareness and focus on the local context is needed. This entails the active inclusion of local actors in the design, planning and implementation phases of campaigns. That said, deciding which roles and tasks should be decentralised and which should be centralised within higher levels of governance remains a delicate and balancing act. Further research is needed into transferability of know-how from local/national to cross-national settings, and into balancing standardised components of a cross-national campaign with locally adapted ones. A key caveat remains that isolated from legislative action, cross-national communication campaigns are limited in their potential to produce a longterm effect on behaviours and therefore health outcomes. We therefore encourage further studies to explore the two issues in conjunction. --- The data underlying this study cannot be made publicly available because they contain potentially identifying information. Interested researchers can send data access requests to the European Centre for Social Welfare Policy and Research using the following email address: [email protected].
Recent years have witnessed greater involvement of European Union (EU) organisations in health communication campaigns that address chronic diseases and that are designed for implementation in multiple countries. This development raises challenges inherent in adapting the design of public health communication campaigns to multi-national settings. This article provides a first exploratory investigation of these challenges and how to address them based on data gathered from four expert focus groups, each concentrated on a common risk factor for chronic disease: smoking, alcohol consumption, unhealthy diet and sedentary lifestyle. Despite the exploratory nature of the data, it was possible to identify several common key challenges: variation in behaviours, social and cultural norms, and issues related to language and communication channels, the divide between EU stakeholders and local actors, and differences in national legislation and available resources. Two risk factorspecific challenges were also identified: effective messaging for complex issues (unhealthy diet) and the involvement of industry representatives (smoking, sedentary lifestyle). We propose conceiving of cross-national communication campaigns as providing a common blueprint and structure that can inform and support the development of differentiated yet harmonised local campaigns.