Fostering the development of community groups can be an important part of boosting community participation and improving health and well-being outcomes in rural communities. In this article, we examine whether psychological well-being and resilience are linked to participating in particular kinds of rural community groups.We conducted a household survey involving 176 participants aged 18 to 94 years from a medium-sized rural Australian town. We gathered data on psychological well-being , resilience , and the types of community groups that people participated in as well as a range of characteristics of those groups, such as size, frequency of group meetings, perceived openness to new members, and whether groups had leaders, defined roles for members, hierarchies, and rules.Univariable regression analyses revealed significant links between particular group characteristics and individual psychological well-being and resilience, suggesting that the characteristics of the group that an individual participates in are strongly tied to that person’s well-being outcomes. Multivariable analyses revealed two significant independent factors. First, psychological well-being was greatest among those who participated in groups without a hierarchy, that is, equal-status relationships between members. Second, resilience was greater among those who reported having a sense of influence within a group.Our findings suggest that policymakers wishing to promote participation in rural community groups for health and well-being benefits may do well to encourage the development of particular characteristics within those groups, in particular equal-status relationships and a sense of influence for all group members.The online version of this article (doi:10.1186/s40359-016-0121-8) contains supplementary material, which is available to authorized users. Approximately 31 % of Australian residents live in regional or rural areas . Some ofWith large numbers of younger people moving to urban centers, many rural areas in Australia have disproportionately older populations. In 2011, approximately 35 % of Australians aged 65 years and older were living in regional and rural areas . Yet, thIn response to these and similar trends globally, policymakers in Australia and internationally have sought innovative and cost-effective strategies to help support the well-being of rural residents, such as initiatives to promote community participation  and commPsychological well-being and resilience tend to be greater among individuals who report high levels of community involvement and social support –18. DespEncouraging the development of thriving community groups offers potential for supporting well-being and preventing mental health problems in rural communities, and is often a priority for policymakers interested in implementing strategies to increase community participation . It is tCommunity groups can be highly diverse with regard to type, size, structure, and composition. For example, Lickel and colleagues conducted cluster analyses that identified four common group types: task-focused groups; intimacy or social-focused groups; social categories, and; loose associations . Among cIn addition to group type, groups can vary according to a range of characteristics. Some groups may have many members while others may be small. Some may allow new members to enter the group easily while others may be less open to outsiders. Some may meet often while others less so. In some groups, there may be a particular person who acts as leader. Some may also have prescribed rules of conduct, clearly defined roles for the group members, or hierarchies. Alternatively, there may be groups with a more flexible structure in which people “chip in” when needed rather than having clear roles, hierarchies, or rules. We have been unable to locate any previous studies that have examined whether community groups with differing structures and other characteristics have different levels of well-being among their members.It could be contended that groups that are highly structured with regard to roles and rules may be better organized at providing social support to their members. Alternatively, groups that are less structured may allow more members to participate in decision-making, potentially providing a greater sense of value and worth. Within some groups, individual members might perceive themselves as having greater levels of influence within a group than other members. Examining perceived influence within a group aligns with research that demonstrates that people are generally happier if they have a sense of control over some or all aspects of their life , 27. GroOur study was conducted in a medium-sized rural Australian town in the western region of the state of Victoria, which will remain undisclosed to protect the town’s confidentiality. According to 2011 Australian Bureau of Statistics data, the town consists of 49 % male and 51 % female residents. It has a large older population, with 32 % aged 60 years and older compared to 20 % nationally and a median age of 48 years compared to 37 years nationally. Similar to other rural centers , educatiWe examined the community groups in which residents participated as well as residents’ psychological well-being and resilience. We included a focus on resilience because promoting resilience in rural and other communities has become a major focus for some government and other policymakers. As mentioned earlier, having strong social and other forms of support has also been linked with resilience , so it iA total of 176 participants took part in the study. All participants were residents of the town, which consisted of 1298 households and was located approximately 300 km from Melbourne, the capital and largest city in Victoria. Participants in our study were older on average, with an age range of 18–94 years, a mean age of 61.9 years (SD = 14.5), and a median age of 64 years (IQR = 53 to 72 years).Participants indicated their age, gender, employment status , country of birth , and the number of years in which they had lived in the town. Participants also indicated whether they felt a part of their community  and how much influence they believed they had within the community .Participants were asked a series of questions about their involvement in community groups. They were specifically asked to think about the group that they felt was most important to them and to answer the questions in reference to this group. This strategy was adopted because residents may be members of multiple groups. The focus on the most important group was based on our reasoning that belonging to this group is likely to have the largest potential effect on psychological well-being and resilience. In other words, the type or characteristics of a group may have less effect on the well-being of individuals for whom the group is only a minor part of their lives or identity, as suggested by previous research on the role of group identity in health and well-being .Participants were asked to indicate the type of group in an open-ended response field, such as noting whether it was a sports group  or support group . They were then given a list of group types and characteristics and asked to indicate which of the following were true of the group, including whether the group was formally organized, was hierarchical, had strict rules, was relatively relaxed/casual, had a leader, or had each group member’s role clearly defined. They were also able to indicate whether the group was a social or task-focused group. Participants were able to select both options. A variable was therefore computed to indicate whether the group was primarily social-focused, primarily task-focused, or both. Based on questions from a previous study , particiPsychological well-being was assessed with the Short Warwick Edinburgh Mental Well-Being Scale (SWEMWBS) , which hResilience was measured using the Brief Resilience Scale (BRS) . The BRSThe survey was conducted between May 2014 and August 2014, and was granted ethical approval from the La Trobe University Human Ethics Committee (Ref: FHEC 13-262). A survey pack containing two hard copy surveys was sent to each of the 1298 households in the town. We chose this method over other alternatives, such as cluster sampling, because the town is relatively small and we wanted to maximize the chance of every resident having access to the survey in order to obtain a sufficiently sized sample. Two copies were sent to each household in case more than one adult lived there, as would be likely for many households. Participation was voluntary and no incentive or reward was offered for participation. Residents who chose to participate first read background information about the study that was attached to the front of the survey. They were informed that only adults aged 18 years or older were permitted to complete the survey and their responses would be anonymous and kept confidential. Those who completed the survey posted it back to the research team using a reply paid envelope. Consent to participate in the study was assumed based on participants voluntarily completing and returning the survey.p < 0.15 were entered into a single multivariable regression while controlling for demographic variables. A cut-off of p < 0.15 allowed for associations that were not quite significant in the univariable regressions but could be significant in the multivariable regression after taking into account other variables [p < 0.05. Stata 11.1  was used to perform all analyses.Descriptive statistics were used to provide an overview of the sample with regard to demographic variables and the community groups in which participants participated, including each group type/characteristic variable. Associations with psychological well-being were assessed with separate univariable linear regressions conducted for each group type/characteristic variable using scores on the SWEMWBS as the outcome variable. Because mental health often varies according to demographics , all regariables . This saTable Of the 176 participants in the study, 160 answered questions on a group that they felt was most important to them. A wide range of groups was reported. Examples included arts and crafts groups, sporting clubs and recreational groups , volunteer groups , youth clubs, and senior citizens’ groups. Table The majority of participants reported that their group had existed for more than 20 years (69 %) and met one or more times a week (58 %). Just over one third (37 %) were in groups of fewer than 20 members while another third (36 %) were in groups of 50 or more members. Three quarters of participants (76 %) indicated that their group gained new members never, or only rarely or occasionally. Only 56 % of participants reported their group having members who were similar to each other. Almost three quarters of participants (73 %) reported having some or a lot of influence within their group. This group was made up of 78 (50 %) participants who reported having some influence within their group and 36 (23 %) having a lot of influence within their group.p = 0.02). This was the only significant factor from the univariable analyses. However, group influence was no longer significant in the multivariable analysis. Instead, group hierarchy was the only significant independent factor. Specifically, psychological well-being was significantly greater among participants in groups that were not organized hierarchically or, in other words, had equal-status relationships .Table p = 0.03), and among those who reported having some or a lot of influence within their group . In the multivariable analysis, only group influence emerged as a significant independent factor . Being in a group with strict rules was not significantly associated with resilience once other group variables were taken into account.Table Almost all participants in this household survey answered questions on a group to which they belonged and that was most important to them. There was considerable diversity within the groups reported in terms of whether they were social-focused, task-focused or a balance of both, and in terms of group characteristics . Some groups gained new members often while many were less likely to do so. Some groups were relatively small while others had 50 or more members. Just over half of participants agreed that their group members were similar to one another, while less than half did not agree.Group type did not emerge as a significant independent factor in the multivariable analyses for either psychological well-being or resilience. It would therefore appear that both social and task-focused groups have similar outcomes in this sample, at least with regard to the measures we included in our study. With regard to group characteristics, only group hierarchy emerged as a significant independent factor, and only for psychological well-being. Participants reported greater psychological well-being if their most important group did not have a hierarchy or, in other words, had relatively equal-status relationships. This was regardless of whether the group was social or task-focused and independent of other group characteristics.There is little known about the role of equal-status relationships in groups on well-being. Research conducted in whole communities shows poorer health and well-being when there is less equality among community members, and this is attributed in part to stress and lower self-esteem from perceived status differences . It may A different pattern emerged for resilience. Group hierarchy appeared not to play a role. Rather, participants who reported having some or a lot of influence within their most important group were significantly more likely to be resilient than those who reported little or no influence. It is probable that having group influence is linked with an individual’s sense of self-efficacy or sense of control over their environment, which is an important component of resilience . It may kinds of community group environments. For example, these organizations could consider actively establishing a range of task and social-focused groups for community members to join that each have structures and rules that promote relatively equal-status relationships and enable group members to share decision-making and to have a sense of influence within the group. Groups that enable deeper levels of involvement from members may also be more sustainable, perhaps being more attractive for residents to join and to stay within the group. This is important because achieving sustainable levels of participation is vital to building community resilience [Other research has found that the social groups in which people participate have major implications for their health and wellbeing . Often, silience .There were several limitations to this study. The study was conducted in a single town, so we do not know whether patterns found in our data are specific to this town or apply across rural centers. Although it would seem unlikely that findings such as the link between well-being outcomes and individuals having influence within their group are not found in other communities, further studies are nevertheless needed elsewhere before drawing firm conclusions.The sample for the study was skewed toward an older cohort. It is possible that a greater number of older people in the town participate in community groups than younger people because many are retired and may therefore have more time to attend group meetings and to take on group responsibilities. Because many of the questions in the survey targeted experiences of group participation, it is also possible that those who were not participating in community groups were less likely to have finished the survey. That said, our study still included a large proportion of participants younger than 60 years old and our main findings were independent of age. Researchers in the future may wish to consider ways of encouraging younger participants, especially those aged 30 years and younger. Offering incentives may be one possibility. Approaching groups with younger members may be another.The response rate for the survey was lower than expected. Although the sample was certainly large enough to conduct multivariable analyses, it is possible that those who responded were different to non-responders. One possibility is that responders may have included group leaders. We did not ask participants whether they were leaders within their groups. It is worth noting, however, that 25 % reported belonging to groups that did not have leaders and only 23 % reported having a lot of influence within their group, so it is perhaps unlikely that a large number of participants were group leaders. That said, it is recommended that future studies collect more data on the specific roles that participants have within their groups to see if group role is also a factor in psychological well-being and resilience. Given its moderate sample size, this study should also be considered as a preliminary investigation into links between well-being and group types and characteristics. Further studies ought to be conducted in the future that seek to corroborate our findings using larger samples.We did not collect data on education or income. It is possible that individuals with greater socioeconomic status are more likely to be awarded roles within groups that give them more influence. We therefore do not know whether there are links between socioeconomic status, group participation, and group influence. We also do not know whether socioeconomic status plays any role in links between well-being and equal-status relationships within groups. It is therefore advisable that future work in this area collects data on socioeconomic status and factors these data into analyses to confirm its role in outcomes.Group type was classified as primarily social-focused, primarily task-focused, or both. Although we computed a “neither” category for those participants who did not indicate that their group was either social or task-focused, it is not clear what types of groups would fit this category. In some cases, participants may not have fully understood what we meant by social or task-focused, and therefore did not answer at all. However, it is also possible that some participants had a different idea in mind about how to categorize their group. As mentioned earlier, Lickel and colleagues conducted a cluster analysis of groups and identified four broad types . In addiFinally, we examined the group that participants nominated as their most important. As mentioned earlier, personally important groups are more likely to have an impact on well-being , 24, andThis study examined community group participation and its links with psychological well-being and resilience from a household survey conducted in a medium-sized rural Australian town. Participants focused on their membership of a group that was most important to them. We found that participants with the greatest psychological well-being belonged to groups without hierarchies. We also found that participants with the greatest levels of resilience reported having some or a lot of influence within their group. Our findings also correspond with other research showing close links between community participation, health, and social support. That said, our sample could have been larger. Our sample also consisted mostly of older people. Future studies are therefore recommended that involve larger and more diverse samples before drawing firm conclusions. For now, our findings suggest that specific aspects of the group environment may be linked more strongly with psychological well-being and resilience, and could potentially be considered in policy settings that seek to promote community group participation for improving health outcomes in rural communities.Ethical approval for this study was granted by the La Trobe University Human Ethics Committee (Ref: FHEC 13-262). Consent to participate in the study was assumed based on participants voluntarily completing and returning the survey.Not applicable.Data are not available to be shared due to participants consenting to participate in the study on condition that data would not be shared. Additional file


The South African National Department of Health has rapidly extended free public-sector antiretroviral treatment for people living with HIV from 2007. Approximately 6 million people are living with HIV in South Africa, with 3.1 million currently on treatment. HIV disclosure stigma has been reduced in high prevalence, generalized epidemic settings, but some remains, including in research interviews. This paper documents the unexpected reactions of people living with HIV to interviewers. It highlights shifts over time from discussing daily events with researchers to later expressing distress and then relief at having an uninvolved, sympathetic person with whom to discuss HIV disclosure. While there are commonalities, women and men had gendered responses to interviewers. These are apparent in men’s uncharacteristic emotional responses and women’s shyness in revealing gendered aspects of HIV acquisition. Both women and men expressed stress at not being allowed or able to fulfill dominant expected masculine or feminine roles. The findings underline the role of research interviewers in study participants confiding and fully expressing their feelings. This greater confidence occurred in follow-up interviews with researchers in busy health facilities, where time of health-care providers is limited. It underlines the methodological value of narrative inquiries with research cohorts. These allowed richer data than cross-sectional interviews. They shaped the questions asked and the process of interview. They revealed participants’ increasing level of agency in expressing feelings that they find important. This research contributes to highlighting pivotal, relational aspects in research between empathetic, experienced researchers and study participants and how participant–researcher relationships progress over time. It highlights ethical dilemmas in roles of researchers as opposed to counselors, raising questions of possible blurring of lines between research and service roles. This requires further research exploration. It additionally underscores the importance of “care for the carer.” Furthermore, it emphasizes that cultural sensitivity to language involves more than merely speaking the words in a language. Culture, humor, dialects, conceptual issues, wordplay, common sense, and respectful attitudes to other languages, resonates. The country has the largest ART treatment program in the world  with a cohort of women and men living with HIV. This was prior to implementation of a multilevel structural intervention study integrating sexual and reproductive health issues into HIV care. These interviews assisted in analyzing participants’ subjective meanings and reactions to disclosure. Qualitative methods are inductive and search for meaning rather than measuring trends, proportions, or patterns of association. They place emphasis on human discourses .Three interviews were conducted between 2007 and 2012 with approximately 9-month intervals between interviews. Participants newly diagnosed with HIV were recruited for the first interview from four HIV care clinics. These clinics serve clients with a demographic profile likely to be seen in other HIV care clinics in Cape Town’s public health sector.isiXhosa-speaking researchers. Semi-structured interviews were conducted in participants’ preferred language. Initial interviews were conducted with 30 women (age range 19–61 years) and 27 men (age range 20–53 years) living with HIV. Second interviews were conducted with 23 women and 20 men, and third interviews with 20 women and 19 men. Baseline interviews without follow-up were excluded from this analysis. Loss to follow-up was primarily due to being too ill for interview, deaths, or moving out of the study area. A small number refused a follow-up interview or were untraceable. The same female and male interviewers interviewed participants at baseline and follow-up interviews.Qualitative interviewers were experienced, same-sex, and English fluent, first-language Interviewers were encouraged to remain emotionally neutral and suggest interventions or referrals when the interview was complete.+, who did you feel you could talk to about your HIV status, if anyone, and how did you go about talking with them?” “How did they react to your having HIV?” In the second interview, we asked: “Since you were last interviewed, have you changed how you feel about telling (more) people about your HIV?”Interviews were approximately 1.5 h in length, audio-recorded, and subsequently transcribed by the same interviewers. In the baseline interview, we asked the following questions: “After learning you were HIVAt the final interview, we asked: “Since our last interview, has there been anyone new that you have talked to about your having HIV?” Most interviews took place in a public-sector health service environment, attended by 84% of the population . InterviisiXhosa, and written informed consent obtained. Potential participants could refuse participation or withdraw at any stage without any repercussions. Participants’ names and identities were protected. The Health Sciences Faculty Human Research Ethics Committee at the University of Cape Town and the Institutional Review Board at the New York State Psychiatric Institute – Columbia University Department of Psychiatry approved the study.The nature of the research project was explained to potential participants in writing and verbally in English and In this article, we use participant IDIs, but also rely on interviewers’ written field notes, experiences, practices, and minutes from meetings. All data were incorporated, managed, and coded using the Nvivo software package.Using a coding list, thematic and narrative analysis was used to highlight how women and men reacted to HIV disclosure to researchers . The parTable Participants’ discussion about HIV disclosure with interviewers was a dynamic process. This changed from initially one of distance to one of trust invested in the interviewers over time. The quotations reflect key issues that emerged. All names used are pseudonyms.Now I just think about taking my medication to keep me well. I am glad I have told my wife about my condition as she helps me to remember.At first interview, many participants had not disclosed their HIV status outside of the health-care environment. The manner of narrating disclosure to interviewers tended to be dispassionate and distanced. They typically dealt with the daily realities of taking medication and attending services. For example, Sizwe, a 50-year-old man saidI have to make up a reason why I go to the clinic for my ‘Beco’ [Vitamin B complex], as my family doesn’t know, but I just keeping on concentrating on keeping myself well.Nompendulo aged 18 reflected:By the second interview, participants engaged in an emotional process of investing confidence in the interviewers. Narratives of heightened dismay, feelings of exclusion from family decision-making, stigma, and other issues emerged spontaneously.Usually in our culture, older men like myself are included in all decisions about the larger family. Since I told them I have HIV, I am alone. I am not invited.Men, in particular, became emotional during the second interview. Tearfulness about their feelings of loss of status as men in family decision making was common. Sizwe, a 50-year-old man, wept as he saidHe expressed discomfort as a man, in crying. Nevertheless, he was comforted when the interviewer listened quietly and patiently, allowing him to express himself fully. Thabo, 35 years old, shared with the interviewer feelings of great sadness in being incapable of providing economically for his family due to illness. He was unable to share these feelings with his family.Jonga, 28 years old, became very emotional during the second interview. He said that he wanted to go home to tend to family cattle in which men are generally involved. However, he was too sick and feared disclosing his HIV status telephonically to his family. He received comfort from the researcher. After the interview, the interviewer counseled him on preparing to disclose his status to his family.Nompendulo, aged 18, feared adverse and judgmental reactions from her family if she disclosed her HIV status. Initially, she was reluctant to discuss this in any depth with the researcher.A shared theme among women and men was great distress in sharing their experiences of disclosure to researchers, beyond their comfort zone. For example, 40-year-old Nomsa painfully related that her husband had divulged her HIV status to the church minister and congregation in a rural area where she resided. When she relocated to Cape Town to avoid the stigma she experienced as a result of her husband’s unsolicited disclosure, she experienced further trauma. Her husband had disclosed her status to the new urban minister who, in turn, disclosed this to the new pastoral community. During the interview, the interviewer sympathized. After the interview, she offered to talk with the church minister. Men tended to experience greater discomfort than women at first interview in sharing their feelings with researchers, but changed by the second and third interviews.I feel there is a change because I feel right now – I can speak to you about it … but at the beginning, I was isolated and it was painful.By the third interview, participants expressed relief in having someone who was not a family member or friend with whom to talk. Thando, a 32-year-old, gained comfort in speaking to the interviewer:By the third interview, Jonga, who was mentioned earlier, was on ART. He said he felt joyful and relief at the advice the interviewer had given him. He had disclosed to his family and was ready to return to his family’s rural residence.As mentioned, Nompendulo was reluctant to discuss her reservation about disclosure with the interviewer initially. She thawed at the third interview, admitting that she thought she may be judged by the researcher as a female, having been sexually active at 15 years. At the third interview, she responded well to the researcher’s suggestion that she “test the waters” by first finding out how different family members would react to someone in the family living with HIV. Watching a TV program with her family in which HIV arose was agreed as a good way to initiate this.When we talked earlier I thought about my being HIV positive because I need not to keep this to my heart, I need to tell somebody. It was easy with you, I lost my stress to talk, because you saw me time and again.Xoliswa, aged 23, who lived with her boyfriend said:Because people usually think, especially as a woman, that its because you misbehaved whereas sometimes its not mischief because even yourself you do not know where did you get virus, I thought a first even you might think this but I was wrong and it was good to talk with you. You listened without worrying if it took time.Phindiwe, aged 27, currently with no boyfriend said she was reluctant to disclose her HIV status broadly:I used to be a bull, but now I am a cow among the bulls – they don’t take me with them anymore. … those who are left [are like me] … a castrated pig in the house .Participants commonly used metaphors in relating feelings. Monde, a 47-year-old man, used the term “bull,” “cows,” and a disabled “pig” to denote his dismay in exclusion from family decision making:Thandi, 35 years old, spoke about her discomfort despite being unwell, in not being able to fulfill gendered expectations of being able to work, care for children, and complete domestic chores. She used the phrase “letting the calf go to its mother.” This term of speech indicated that it appeared she was fulfilling her roles while not doing so to avoid disclosure. However, she was willing to discuss her misgivings with respect to fulfilling gender roles and disclosure with the researcher.At all three interview periods, participants’ discussion of disclosure to researchers differed. Management of the disclosure process and style changed. This was reflected in the differences in participants’ willingness to reveal thoughts and feelings.As mentioned, men and women showed specific vulnerabilities in narrating their experiences of HIV disclosure. Stigma and distress were therefore sometimes gendered. This mirrored differences documented elsewhere with respect to HIV , 13. MenMfecane argues that “if research is a social practice, then making friends in the field is a productive, sometimes essential strategy, the more comfortable they feel with us as researchers, the more insightful our research findings are likely to be” [ p125]. TisiXhosa to English and vice versa. This underscores the key role of English fluent first-language speakers in continuity in interviewing, translation, and analysis. Similar to English in which we have the expression “take the bull by the horns,” which is not literal but rather denotes confronting issues head on, in isiXhosa, there are different expressions about bulls with completely different meanings.Important cultural–linguistic issues influencing the narratives emerged. Thematic and narrative analysis pays attention to what participants say, the process of story telling, the impact on what emerges, and the manner of retelling. Discourse analysis focuses on language, and how this reflects cultural and social linguistics. Phrases participants used reflect sociocultural elements to capture identity, experiences, as well as categories and labels , 20. WitisiXhosa) and Epprecht  being stronger and more competent than cows  predominated in these narratives. However, cows are also a critically important resource among amaXhosa, a source of wealth and bride-wealth (lobola). The latter can take on different meanings in “living” custom. Some men may interpret this as meaning “ownership” of a wife, while others may see this as needing to “treasure” a wife. Pigs in isiXhosa-speaking communities do not denote dirty or taboo animals. They are an appreciated economic resource. However, in this context, the addition of the term “castrated” gives them a different meaning. Our male research interviewer commented that if an analysis that misunderstood the cultural–linguistic underpinnings, the respondent would not recognize the interpretation of what he had originally said in the interview. Furthermore, the phrase of “letting the calf go to its mother” would be misunderstood unless the meaning from the isiXhosa translation was clear.Both Dowling  (with reEpprecht  emphasizEpprecht , 23. DowEpprecht  singles isiXhosa-speaking experienced interviewers were able to understand the nuances in language and tune in to sociocultural linguistics. They uncovered hidden and spontaneous meanings. Similarly, in microbicide research, sexual violence being a reason for microbicides spontaneously emerged (First-language  emerged . In HIV  emerged . Experie emerged , p. 101]isiXhosa first-language speakers interviewing, transcribing, translating, and participating in analysis. The aim of qualitative research is to produce rich insights and depth rather than breadth in its findings. “‘Transferability’ in this context means developing a theory that may determine or constitute broader social phenomena” HIV disclosure, when and to whom, forms an integral part of the lives of people living with HIV. Disclosure is not always a good thing and sometimes may not make logical sense rather than being a reaction to stigma. People frequently weigh up situations and make strategic decisions in this regard that have favorable outcomes for them. People take a meandering rather than a linear path in disclosure. Importantly, health-care providers, researchers, and many others they meet influence them along the way. Qualitative research interviewers are often able to spend more time with health service clients they interview than health-care providers in busy public-sector health facilities, particularly when they conduct follow-up interviews. Participants are able, as a result, to confide in them about disclosure and express their emotions fully. They can play an important role in participants’ well being and moving forward to further disclosure, where this is the correct decision for them.The findings underline the value of narrative inquiries with research cohorts in allowing richer data than in cross-sectional interviews. In addition, participants’ increasing level of agency in being able to discuss what they feel is important and express their feelings to researchers is highlighted . IndividThe research highlights pivotal, relational aspects in research between empathetic and experienced researchers, whose first language is the same as participants, and the manner in which participant–researcher relationships progress over time. Male participants disclosed distressing, emotional disclosure experiences to interviewers, sometimes contrary to gendered expectations. A series of interviews with the same participants revealed modified, and shifting narratives remind us once again: “At its heart public health is a conversation society has …” . In addition, the importance of language beyond merely speaking the words in a language is highlighted. In research, Dowling’s  call to DC was South African Principal Investigator, did the primary analysis for this paper, and led this paper. JM was the Principal Investigator in the USA and contributed to the writing of this paper. NN was a key researcher involved in male interviews for study, participated in the interpretation of analysis, and contributed to the writing of the paper. NC was a key researcher involved in female interviews for study, participated in interpretation of the analysis, and contributed to the writing of the paper. KA-E was a Master in Public Health student at the University of Cape Town. She participated in the literature review, the data analysis, and writing up as part of this study under the auspices of the Women’s Health Research Unit at UCT. All authors reviewed and commented on all drafts, and ratified the final paper submitted.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.


Globalization describes processes of greater integration of the world economy through increased flows of goods, services, capital and people. Globalization has undergone significant transformation since the 1970s, entrenching neoliberal economics as the dominant model of global market integration. Although this transformation has generated some health gains, since the 1990s it has also increased health disparities.As part of a larger project examining how contemporary globalization was affecting the health of Canadians, we undertook semi-structured interviews with 147 families living in low-income neighbourhoods in Canada’s three largest cities . Many of the families were recent immigrants, which was another focus of the study. Drawing on research syntheses undertaken by the Globalization Knowledge Network of the World Health Organization’s Commission on Social Determinants of Health, we examined respondents’ experiences of three globalization-related pathways known to influence health: labour markets (and the rise of precarious employment), housing markets (speculative investments and affordability) and social protection measures . Interviews took place between April 2009 and November 2011.Families experienced an erosion of labour markets (employment) attributed to outsourcing, discrimination in employment experienced by new immigrants, increased precarious employment, and high levels of stress and poor mental health; costly and poor quality housing, especially for new immigrants; and, despite evidence of declining social protection spending, appreciation for state-provided benefits, notably for new immigrants arriving as refugees. Job insecurity was the greatest worry for respondents and their families. Questions concerning the impact of these experiences on health and living standards produced mixed results, with a majority expressing greater difficulty ‘making ends meet,’ some experiencing deterioration in health and yet many also reporting improved living standards. We speculate on reasons for these counter-intuitive results.Current trends in the three globalization-related pathways in Canada are likely to worsen the health of families similar to those who participated in our study. Lancet Commission described as “transnational activities that involve actors with different interests and degrees of power” . power” , with an emphasis on immigrant families. The focus on low-income families arose from earlier work that identified a growing gap in the median incomes of families raising children in Canada, with the bottom four deciles all showing declines between 1976 and 2006 (the last year for which comparable census data are available). The poorest decile lost almost 70 percent, in contrast to the 30 percent increase for the richest decile , indicatThe emphasis on immigrant families reflects recent evidence of a more rapid deterioration of the ‘healthy immigrant’ effect  and increased inequalities in their access to housing, economic opportunities and income relative to Canadian-born persons -17. ImpoWe begin with a brief discuss of globalization and its primary health-influencing pathways. We then describe our research methods before presenting our findings organized thematically by three pathways: labour markets, housing markets and government social protection policies. We next locate these findings within a broader literature on globalization before some concluding remarks on the prospects for improving health equity in the present Canadian political context for the families in our study.Globalization increasingly conditions and constrains governments’ economic, social and health policy choices . AlthougThese broadly sketched global trends formed the backdrop for an interdisciplinary research program that set out to study the effects of globalization on the health of Canadians (2006–2012). Our project adopted Jenkins’ definition of globalization as transnational economic integration: “a process of greater integration within the world economy through movements of goods and services, capital, technology and (to a lesser extent) labour, which lead increasingly to economic decisions being influenced by global conditions” ( p.1). KeLabour markets: decline in manufacturing, rise of precarious and non-standard employment, and polarization of incomes between a minority of knowledge workers and a majority of service and industrial workers ,39-41Metropolitan land use and housing markets: speculative investments, real estate bubbles, spatial segregation and problems of affordability ,43Social protection measures: rise of the competitive (‘business friendly’) state and changes in scope and redistributive aspects of social spending, alongside impacts of tax competition, neoliberal economic policies and expansion of offshore financial centers and capital flight -47Drawing on the parallel work of the Globalization Knowledge Network of the World Health Organization’s Commission on Social Determinants of Health ,8, we idThe different connections between these three pathways and health results have been well established in a variety of academic analyses from a social determinant of health perspective -6,41,45.The three cities were chosen for reasons beyond their size. They were all experiencing job-loss due to out-sourcing of production to lower-wage countries; housing costs were rising rapidly; all three were major recipients of immigrant populations; changes in federal and provincial tax policies were reducing the percentage of provincial GDP allocated to social protection spending; and existing studies in all three cities had established important shifts in the geography, depth and dynamics of poverty for low-income families -52.We developed our neighbourhood sample using a deprivation index comprising seven variables from the 2006 Canadian census , a measure of relative poverty based on families spending 20 percent more of their income on food, shelter and clothing than the average family, adjusted for family and community size. Montreal’s Côte-des-Neiges (CDN) neighbourhood topped the list with almost half of the population and the highest percentage of young children living below the LICO. Toronto’s peri-urban neighbourhood had the lowest percentage of renters paying more than 30 percent of income on rent (much of the housing in this neighbourhood is subsidized) while the urban neighbourhood had the highest percentage.Researchers in each of the three cities aimed to recruit 25 families in each neighbourhood. Eligibility criteria were that the families lived within the selected census tract (or very close to the boundaries of that tract), and had at least one parent and one child 19 years or younger living at home. Recruitment consisted of distribution of a poster advertising the study through community agencies, local churches, food banks, elementary schools, housing co-ops, local restaurants, and private businesses. Some recruitment also occurred through snowball sampling.Recruitment was generally successful in reaching the types of families in which our study was interested. , Montreal interviews between November 2009 and November 2010 (n = 47), and Toronto interviews between August 2010 and November 2011 (n = 50). The semi-structured interview schedule was designed to elicit responses that captured participants’ experiences and understandings of how global forces were affecting their health and life chances, how they explained this situation and what factors they identified as mitigating or exacerbating these effects. Questions were also posed on their migration history (when relevant), their health and social well-being, their employment and social protection history, their coping strategies (including the role of public services or benefits) and, finally, their understanding of globalization. Questions were asked not only of the primary respondent’s experiences, but also that of her or his spouse and family members. Interviews from each of the three cities were digitally or manually recorded, coded and analyzed separately, using thematic analysis and constant comparative methods. Thematic analysis identified recurrent themes and was descriptive in nature. Using an iterative approach, we compared data to find similarities and differences. An open coding scheme or template for organizing the data was developed deductively (based on the interview schedule) but refined inductively as new codes emerged. Individual city reports analyzing interview data were prepared; and a subsequent multi-day meeting convened to compare and contrast findings across the three sites and to discuss the structure of the papers to be developed from the study. Quotes used in this paper are derived from the individual city reports and are largely verbatim with only minor grammatical corrections, although some are paraphrased translations from other languages. The study was approved by the University of Ottawa Research Ethics Board.We first present respondents’ experience with the three major globalization-related pathways: labour markets, housing markets, and social protection programs. Findings are contextualized by reference to secondary data on trends in the three cities. We then turn to how our respondents understood the effects of these pathways on their health.“there are fewer job opportunities than I would have thought.” Canada, like many industrialized high-income countries, had been experiencing a decline in its manufacturing sector for some decades, precipitated first by new technologies that reduced demand for human labour, and second by a pattern of outsourcing to low-wage countries as part of global production chains  changed, [it is] not as welcoming as before,” an effect this respondent attributed to globalization’s swelling of the flow of migrants, affecting the capacity or willingness of communities to absorb them. Others were less generous in their assessment. Another respondent, fluent in French, complained that immigrants were being treated as second-class citizens, routinely discriminated against in “the divide between [us] and the Québécois-de-souche [a phrase describing those with historic francophone roots].” About one-third of respondents expressed similar sentiments and, while anti-immigrant prejudice was noted by respondents in the other two cities, it was most striking in Montreal.At the same time, most respondents acknowledged the role played by global economic conditions contributing to their lack of work. Our interviews took place just after the 2008 global financial crisis, and many Montreal respondents commented on the lack of jobs due to the subsequent recession. This theme was echoed by respondents in both Toronto and Vancouver, but unique to Montreal is its francophone status. Some of the new immigrant respondents complained of overt employment discrimination: ““there are just so many immigrants here,” while another was concerned that “local people feel that globalization is taking away their jobs” for which some blame on new immigrants was levied. Recent immigrants complained of being singled out by their lack of Canadian experience, as this woman from Jamaica noted:You don't get a call back or it will be, "You don't have Canadian experience”… And I had to go through the rigours of this Canadian experience scenario where you have to wait it out or you do minimum wage jobs and just struggle all the time.Similar if less strident complaints of employment discrimination against new immigrants were made by a quarter of the respondents in Toronto. As one long-time resident expressed, So I’m looking for a job … but they need [Canadian] experience … how is it possible to gain that experience when no one wants to employ you?A longer-term male immigrant from Tibet elaborated on the dilemma this posed:“It’s just cleaning.” A unique barrier to immigrant employment in Toronto was stigmatization by postal code – the perception that a certain area with a high density of new immigrants was unsafe, unsavoury and populated by the unemployable. As one respondent from this area noted:I wasn't expecting to see all these stumbling blocks where when you put out your application it would be, where you live. I mean you don't get a call back.One recent immigrant with a diploma from her home country expressed dismay that she would have to return to high school in Ontario to get an equivalent Canadian diploma to apply for a job as a housekeeper: If I give my resume, I say I live at [this area], they don’t hire me. If I write I’m living somewhere else they may hire me … I’m an immigrant, and on top of it, I live in this area. Trust me, you know, I wish I had another address to write.Another similarly complained:Two jobs, part-time, 25 hours/week, no benefits, looking for a third part-timeLaid off after 15 years, no severance; re-trained in food services, working 3 hours/day in a seniors’ residenceSocial worker from Sri Lanka now sorting used clothes for export, engineer husband working ‘on call’ to install windowsPart-time cashier, no benefitsPart-time waitressing, bartending, reliant on tips; partner drives part-time, clears snow in winterChildcare worker, three part-time jobs, no benefitsUnlike Montreal, where anger over the poor employment opportunities and perceived discrimination was palpable, Toronto respondents were circumspect in attributing blame. This may partly reflect recognition that many Canadian-born families were in a similar position. Over 32 percent of Toronto’s manufacturing jobs disappeared between 2004 and 2009, while employment in the financial sector increased by 24 percent . TorontoI work long hours but I just get the minimum wage. It's like you're always overworked and underpaid. And then you're tired on top of it. Can you imagine if I was being paid the right amount? I wouldn't have so much stress.As one female interviewee stuck in the multiple job, part-time world expressed:You start work at 7 and cannot be late. You really work hard … and really, really fast … But then if people work there for 10, 15, 20 years, when they get old, they just let you off.Another respondent, a recent immigrant who considered she was fortunate to have a factory job, found the work taxing and unhealthy:“Back home it was just 9 to 5. Here it’s like 24 hours.”A Jamaican migrant reflected on life in his home country: The first job, it's a split shift Tuesday to Saturday; it's 8:00 to 12:00 in the morning, and 6:00 to 10:00 in the evening. And the second job, it's at night Tuesday to Friday, 11:00 to 7:00. So I get my sleep in between the split shifts, like in the morning, sometime I come home early, like 11:00, so from 11:00 to 6:00 I have time, and that's how I get my sleep.Unlike Toronto and Montreal, Vancouver never had a large industrial sector, with goods-production in 2006 accounting for only 20 percent of all employment in the city. Its traditional resources sector, fishing, forestry, and mining, however, had seen an employment decline parallel to the loss of industrial jobs in the other two cities. Over 80 percent of current employment in Vancouver is in services, much of it now being outsourced by both the public and private sectors . Provinc…a kitchen helper in a Chinese restaurant … then I go to factory to seasonal work… put something in an envelope for mailing… and my third job, a dietary aide in a seniors’ home.A recent Chinese immigrant held three different jobs:Yeah, I think I got sick, maybe I was too tired, I did three jobs.My husband, he gets a job, he works there for a little while, he’s laid off… it’s been like that for years… it’s taking a toll on our health.Added to this is the commuting time between jobs. In order to provide for her family, one single parent was working 67 hours/week at two jobs plus commuting time. The sole breadwinner in another family was working 50 hours/week at two jobs plus commuting time. Another interviewee used to work up to 70 hours/week at several jobs. The health toll of this precarious work was also apparent, and was noted by about a third of respondents with comments such as:It’s a very difficult time, the economy changed… and my husband lost his job… and we are on our own. I have difficult time. Because I never think about it before - that experience. I was ‘Wow’.Yeah, full-time, I was unionized, I had everything… seven years never laid off. Then right away terminated because the company, they lost a lot of contract with US.Although employment rates were higher amongst our Vancouver respondents than in the other two cities, the impact of the financial crisis and recession was also felt by some in their own experiences of lay-offs and factory closures.The shift is happening … it’s becoming condos and shopping malls. And the little places are getting bought out, and the homes are being scooped up and renovated … it’s becoming more difficult to find reasonable rentals. For those that don’t have [lots of money], they are ending up on the street, in hostels.One of the effects of liberalized financial markets has been the acceleration of real estate as a form of investment and capital accumulation. Urban space and land uses become reconfigured in pursuit of higher value uses , leading to displacement of residents and crises in housing affordability and quality . Lower-iOne indicator of this upwards trend in housing costs is an affordability or ownership measure devised by one of the major Canadian banks . It is bYeah, this is a very old building, it has mites and moulds in it and that increases my child’s asthma because sometimes when she enters the house she starts coughing … so the doctor said you have to change the house, but that’s not possible at this point, you know.High ownership costs in the absence of rent controls or subsidized housing become high rental costs, which have far outpaced income increases for low-income families in virtually all Canadian urban areas. The proportion of renters in our three cities in 2006 who were spending >50 percent on their housing, placing them at imminent risk of homelessness, was 22 percent (Vancouver), 20 percent (Toronto), and 18 percent  . Many ofThe kids all have asthma, the older one has very bad asthma and we have already taken him to the emergency at the hospital. We can’t move because rents are too expensive.A Montreal mother who lived in a small apartment with two children complained of cockroaches, rats and mould:Recently arrived immigrants are in a worse situation, they do not know the laws; landlords take advantage of their ignorance and vulnerability. They like to rent to immigrants.Across all three cities, almost a third of respondents spoke of the risks of asthma and upper respiratory infections facing their children. Another mother shared a single bedroom with three children and an unrepaired hole in the ceiling caused by a water leak. Among the reasons given for such housing neglect were government cutbacks and a lack of subsidized housing, leaving the rental market to the private governance of ‘slum’ landlords. New immigrant families faced the greatest housing challenge, as one Montreal longer-term immigrant explained:This claim is supported by studies finding that new immigrants generally pay more for sub-standard accommodations than older immigrants or Canadian-born residents, while earning substantially less .“crowded,” “too small,” “poor maintenance,” “too expensive.” As a Canadian-born mother in Vancouver’s peri-urban neighbourhood summed up: “not having to worry having a roof over your head or food in your mouth, that’s a big one.” With all three cities competing to become ‘event destinations,’ this worry is unlikely to diminish. Vancouver’s biggest event, the 2010 Winter Olympics, is largely seen as a ‘success’ – the ‘People’s Olympics’ as they became known. But the city was left with a deficit of at least $230 million from the event, which is likely to be covered at the expense of lower investments in social housing and other public goods or services  you don’t have the resources where you can go to a food bank or go to welfare and get assistance, no. So if your family doesn't take you in, you live on the street if you can't pay the rent. Here, even if you lose your job, you can go and get assistance.Despite these erosions to Canada’s safety nets, many of our respondents, and especially immigrant families coming from countries with even less social protection, placed a high value on government programs, as this recent immigrant in Toronto expressed:My family support system has gone but in Canada I know that I can depend on the government if the worst came about.The importance of government support programs was especially emphasized by recent immigrants who had lost their family supports through the migration process, as noted by this Montreal woman:The support here is completely different… here I do not even know my neighbours.These concerns over loss of family and the important role played by Canadian social protection programs were noted by a third of the Montreal respondents, slightly less in the other two cities. Although friends and social networks often filled the loss of extended family supports, they were generally seen as less reliable than government programs, as another Montreal respondent commented:“especially for families in need”. Of directly provided government programs, those mentioned most frequently as important to their families’ well-being were healthcare  and child allowances (income transfers).The result was often a high degree of isolation, most acute for newer immigrants, and a consequent reliance upon publicly provided community services. Most respondents expressed satisfaction with these services, although travel distances sometimes proved challenging, alongside increases in user charges for recreational programs that were becoming a barrier The majority of people [like me] who are on social assistance didn't grow up saying that they were going to be on social assistance. So it's not a thing filled with pride. And I don't think that most of [us] want to be on social assistance. We would prefer to be working or to be self-sufficient.Some new immigrants were nonetheless reluctant to use government programs, connected to the sense of failure described earlier. They had come to the country to contribute to the economy, to take advantage of the opportunities that had been promised and, especially for the 15 men interviewed, to fulfill what they perceived to be their role as fathers and providers, as this unemployed Vancouver man stated:If you’re on welfare and saving money and they’re checking your bank account and saying ‘why are you saving money? That means you don't need this money. So we're not going to give you money this week.’ So the savings that you may have been putting towards school or towards getting a car so you could access … a job that's farther away. You can't do that.There was also stigma attached to some of these programs, with many resenting the punitive characteristics of welfare, most forcefully expressed by this Toronto resident:There is never enough money. We are always short. Others in Montreal expressed the same concern with the inadequacy of benefits:“huge multinationals that pay poor wages and … get very good tax benefits…resulting in governments having to cut social benefits.”There were few comments about welfare benefits from Vancouver respondents, apart from benefits associated with their employment (given the large number there who had full- or part-time work) which were generally seen by immigrants as better than those in the country they left. A few nonetheless noted that, while not yet as pronounced in Canada as their home countries, benefits were not as generous as they could be due to “having a social safety net in this country has worked very well so far,” a common lament was that “I have more government support here, but less opportunity.” A summarizing sentiment encountered in all three cities and six neighbourhoods:The government can do two things: increase welfare income, and help us find jobs.So even while for many respondents “leading a healthy lifestyle.” Relatively few identified what we would now call social determinants of health . Yet when describing challenges to their own health, these social conditions loomed large. The lack of jobs was the most commonly cited source of stress and health challenge:My sister lost her job and now she cries every day and this is affecting her health. Our study was concerned not only with families’ experiences of our three globalization-related pathways, but also with how they saw these pathways affecting their health. When discussing health in the abstract  most respondents emphasized the conventional behavioural risk factors of diet, exercise, and generally the major theme that ran through all of the interviews. Clear links were made by respondents between such insecurity and their poorer health. Those reporting the lowest levels of household income, which was directly connected to unemployment, gross underemployment, or insufficient and precarious employment, also reported the highest levels of stress and ill health.Job insecurity was But the insalubrious state of rental housing was also cited by almost half of the interviewees as a source of health problems for their families. They attributed this state to the high cost of accommodation in a context of poor employment, inadequate social assistance benefits, depressed wages, and rising living costs. For most respondents, the health outcomes of poor housing manifest in physical complaints, but for several it also led to mental distress, usually related to severe overcrowding.To get a better sense of the dynamics of their own (or their families’) conditions, we asked respondents to comment on how their health had changed since arriving in Canada, or in the past five years if they were longer term-residents; if their standard of living had changed (for better or for worse); and whether they were experiencing difficulties making ends meet.  reported somewhat anomalous trends, frequently finding it difficult to make ends meet yet simultaneously stating improved living standards. The Vancouver researcher speculated that the Guildford families, despite being financially challenged, had been living in poor conditions for some time and had begun to take for granted their standard of living. The researcher in Toronto was struck by the resilience and optimism of those interviewed, particularly amongst the newer immigrants in South Parkdale, one of whom ended the interview by commenting:“no one should go through what I am going through”, and argued further that “if there is no employment, the government should stop bringing people here.”Lack of decent employment opportunities is a central aspect of how globalization impacts the life chances and health of disadvantaged Canadians. However, our respondents were concerned with a lack of jobs, which some attributed to the recent financial crisis and recession, and also resented the perceived discrimination against the experience and educational credentials many new immigrants bring with them. While some accepted this with stoicism, others blamed the Canadian government for falsely portraying opportunities for skilled labour that did not exist. One Montreal woman, concerned that expecting a life of unstable labour and unstable living”  onto somewhere else”. It is characterized by a lack of any of the non-waged benefits that had typified previous employment relations, and the progressive loss of labour rights or entitlements from the state. Standing sees the rise of the precariat as an outcome of globalization and its liberalization of economies, which has “trebled the world’s labour supply to the open market.” This huge expansion in the global labour supply, to which many of our respondents referred obliquely with references to China and other out-sourced countries, has led to ‘growth-less jobs’ – low-wage, low-productivity, insecure and unbenefited employment that, in our study, was epitomized for several respondents as an endless series of multiple, part-time, minimum wage work. Although some, the better educated and better off new migrants, did slowly progress to more full-time work, for others, and after decades, employment was still flitting between part-time and insecure jobs.It was not just the lack of employment that affected the health or living standards of many of our respondents, but also its poor quality. Labour market ‘flexibilization’, which began with technological innovation that reduced the demand for labour and accelerated with the growth of global commodity chains that bifurcated labour into ‘skilled’ (knowledge economy) and ‘unskilled’  segments, was not new when we undertook our study. But respondents’ descriptions of their multiple, part-time or insecure employment aligns closely with Standing’s more recent theorization of an emerging global ‘class-in-the-making’, which he calls ‘the precariat’ . Precari living” . Part ofStanding’s argument about the precariat is not universally accepted, and the ILO (for which he once worked) is cautioning that we are now entering a post-financial crisis phase of jobless growth alongside increases in ‘vulnerable employment’  . Where cHowever, that even European countries with a long history of social democracy are now experiencing rising inequality and labour market flexibilization raises the issue of mitigating government social protection measures in a context of a neoliberal globalization that Harvey characterizes as “capital accumulation through dispossession” . One of Over the same period that housing access deteriorated and jobs became more precarious, Canada’s social spending plummeted, its welfare generosity declined, and its employment and active labour market supports fell well below OECD averages. Even Canada’s public health care spending has started to slip, with out-of-pocket expenses for many low-income families beginning to rise. Although tattered, Canada’s social protection programs nonetheless remained highly valued by most of our respondents. For many, and especially newer migrants, these programs were all that stood between them and homelessness, hunger, or destitution. But their future looks even bleaker than their accounts of just a few years ago. Federally, Canada’s most recent finance minister stated his resolve to continue with austerity and fiscal retrenchment, arguing (against increasing evidence to the contrary) that any other course would be “the road to ruin” . The couGlobalization is a multi-faceted concept, with both health-positive and health-negative dimensions. This article emphasized the globalization-related pathways most likely to negatively affect the health of Canadians who were living on the socioeconomic margins, with a particular emphasis on immigrant families. Most of our families identified several health concerns associated with each of these pathways; although for all except the families interviewed in Montreal, a majority thought their health better at the time of our interviews that in the immediate preceding years. The interviews took place just after the first economic impacts of the global financial crisis were rippling worldwide, and before the post-crisis austerity agenda deepened and became normalized. We noted earlier that two possible reasons for why those interviewed in Toronto and Vancouver reported health improvements despite reporting difficulties making ends meet or deteriorating standards of living were their more recent immigration , especially in Vancouver, and a normalized acceptance of their conditions, i.e. they were as healthy as they expected themselves to be. In Montreal, deteriorating living standards, higher unemployment and some experiences of anti-migrant sentiments are possible reasons why a majority reported worsening health. At the same time, there may have been some optimism amongst some respondents, as the immediate federal government response to the 2008 crisis was counter-cyclical spending with the prospect of a rise in short-term employment. It was not until 2012 that the federal government began its series of ‘austerity’ budgets based, in part, on reducing social protection spending and transfers to the provinces. Whether respondents would be as optimistic about the state of their health today, a few years later, is an open question. Some recent studies have noted how the global financial crisis has already exacerbated SDHs worldwide, including in Canada, especially through its negative impact on employment conditions .Certainly, the trends recounted above would be particularly discomfiting for many of the families with whom we spoke. This is especially so if we accept Standing’s argument that, with precarious employment increasing its hold over labour markets and capital still footloose globally preventing a re-creation of the social contract between state, capital and labour, the only effective policy measure to reduce inequality and insecurity is post-market tax/transfer measures leading to guaranteed incomes of sufficient scale for healthy living. This requires forceful, tax-friendly governments. The earlier idea of ‘less government’ neoliberalism has given way to a new understanding of possibility of state-led intervention for national development. Although the chorus of economists, including some within the ranks of the international financial institutions, public health workers and civil society organizations calling for such a shift in government is growing and gaining momentum in various countries, there appears to be little movement in that direction at the moment, at least in Canada.


A personal bereavement from suicide prompts a critique of current mental healthcare. Fragmentation, lack of long-term attachment to a tenured professional, the dearth of family therapy, and professional ambivalence are identified as weaknesses in current provision. Implicit is the case for change in UK psychiatric services, both structural (need for long-term therapies) and cultural . Recently, a close relation of mine died, through suicide. An intelligent, beautiful, creative young woman, for nearly 20 years she had suffered from bipolar disorder, for which she had received intermittent psychiatric care. Although the scale of my grief is minuscule compared with that of her immediate family, the poignancy was magnified, because I am, or was, a psychiatrist.Inevitably, as one vainly tries to elude the irreversibility of time and loss, I have replayed in my mind the story of her illness and last days. Inescapably, too, I have felt on her behalf and that of her family a degree of guilt, anger and regret. Surely things could have been done differently, I think to myself. I look back on the patients with bipolar disorder I have treated over the years – those who have survived, and those unforgettable few, who, like my relative, took their own lives. I think of lessons learned, and not learned.Although many aspects of psychiatric services have undoubtedly changed for the better , there are also ways in which current psychiatry lets down its patients, especially when suicidal. What follows is perhaps yet another ultimately futile, counterfactual ‘if only...’ narrative that typically haunts the bereaved. But for all that, it may contain some validity.1 Although psychological autopsy and critical incident review are unexceptionable, hospital authorities react very differently to death by suicide as compared with other deaths. Compared with the acceptance of the inevitable mortality associated with chronic physical illness, when a patient with a psychiatric illness takes their own life there is invariably an undercurrent of blame.2 Bipolar disorder, major depressive disorder and schizophrenia have a 20% mortality rate,3 comparable with multiple sclerosis4 or many forms of cancer, but the reactions they evoke are very different. This is reflected in the way that death by suicide is classified and recorded. Bipolar disorder, schizophrenia or borderline personality disorder are not in themselves ‘causes’ of death to be determined by a coroner. Suicide is grouped with the other stigmatised ‘-cides’, alongside homicide and infanticide.There can be few psychiatrists who have not at some point been faced with the death by suicide of a patient under their care.Changing classification might well be desirable, but stigma-reducing biomedical attributions of ‘illness’ will still fail to capture the essence of the psychological pain with which the survivors are inundated. It is hard to accept that we can be so helpless in the face of unconscious forces over which we appear to have little control. The challenge to our sense of omnipotence and sense of freedom is overwhelming. There must, it seems, be an explanation, a narrative – someone or something to blame.5 But these gloss over the negative consequences of the many changes that have overtaken psychiatry in the past few decades.Official enquiries into untoward deaths usually end up with bland banalities such as ‘poor communication’ and ‘failure of adequate risk assessment’.The first is fragmentation of care. In the UK an ill patient is likely to be ‘looked after’ by at least three different groups in the course of her illness: the in-patient team, the assertive outreach team, and the continuing care team, each staffed by different people with differing philosophies, skills and limitations. Each team will be keen to get their job done and then pass the patient on, leading to eventual discharge. There is rarely one single individual who holds the patient in mind through all the phases of their illness, in sickness and in health. No ‘risk assessment’ protocol can substitute for this intimate knowledge, built up over time, of patients’ unique vagaries, strengths, weaknesses, vulnerabilities and inner workings.6This role could be, but so often is not, occupied by a senior tenured clinician – consultant psychiatrist, nurse-specialist, psychotherapist or clinical psychologist, supplemented by other members of the team. For this to happen there would need to be a move from short-termism and quick-fix problem-only therapies to long-term care for chronic illness. This would entail recognition that, as in Germany, long-term therapy, despite its cost, is economically efficient and can be available as part of comprehensive universal healthcare.7 In the absence of a secure base an abyss of despair and terror gapes, to which the illusory comfort of death may appear to provide a modicum of comfort.Attachment theory provides a possible scientific underpinning for this perspective. The distressed – and what is suicide if not the ultimate manifestation of distress? – are psychobiologically driven to seek out a secure base in the hope of alleviating their mental pain.8 who augment and temporarily substitute, but can never fully replace, the primary attachment figure. The prevailing ‘customer-provider’ ethos, postmodern suspicion of inequalities in power relationships, and an underlying cost reduction imperative, are used to justify the current model. There is scant acknowledgement that the idea of ‘choice’ makes little sense in the context of severe mental illness. A commercial-type ‘contract’ anticipates, and tries to shape, the consumer’s needs, but is essentially non-‘mentalising’.9 It does not take account of the uniqueness of attachment relationships or attend to the inner world of experience that drives external behaviours.Secure attachment is based on sensitive and responsive knowledge of the care-seeker, backed by ‘allo-parents’10Understanding a person’s inner world is not a recipe for vague psychological theorising, but can be intensely practical. A mentalising parent is able to plan effectively, take account of her own states of mind, and make sensible guesses about what is going on in her child’s mind. Similarly, a primary ongoing psychiatric attachment figure offers not just support and therapy to her patient with bipolar disorder, but, based on a shared journey through the vicissitudes of illness, gauges the need for medication, and helps the patient regulate the basic parameters of life – sleeping, eating, working, relating.11 The current climate tends to reproduce and reinforce rather than mitigate these adverse developmental experiences.Soon after my relation died I dreamt I was in charge of her care; ‘You are going to stay in the ward, sectioned if necessary, until you are really well, even if that means staying here for a year!’, I said in my dream narrative. In reality this could, and probably should, be no more than a dream. In-patient beds are vanishingly scarce; ward culture inimical to long-term care; sectioning a highly articulate and plausible patient increasingly problematic. The idea of a hospital as an asylum, of therapeutic communities in which people with mental illness live and learn together, seems little more than a nostalgic memory. But in a psychiatric world without walls, the need for long-term care based on enduring relationships becomes all the more important, not least because the developmental experiences of those who suffer from mental illness are typically characterised by disorganised and disrupted attachments.Finally – whatever happened to family therapy? From an attachment perspective family members – parents, spouses, siblings – however stressed, posses a unique sensitivity to the inner world of their loved ones. They have a lifelong baseline of normality against which to judge the subtle signs of relapse. They are an indispensible resource in which indefatigable altruism, based on the care-giving dynamic, can be taken for granted. Mental health professionals have often not yet fully thrown off their own adolescent rebellion, and too easily slip into excluding or even blaming the family, in part no doubt as a way of coping with the stresses of working in the beleaguered field of psychiatry. One consequence of ‘community care’, so called, is that families are relatively unsupported in their struggle to help their mentally ill relation, or cast as the ‘cause’ of the problem, and kept in the dark about professional formulation and planning.12 a paradoxically safe container for all that was painful and destructive about mental illness. Hope and recovery were associated with discharge and resuming the ongoing connections represented by friends and family. Today, without the secure base function of the hospital, the family itself is too easily scapegoated, while professionals take refuge behind ‘confidentiality’ as a rationale for excluding family members. Skilled family therapists are a rarity, despite robust evidence that family intervention prevents relapse in serious mental illness.13Faced with the huge trauma of mental illness, the world typically becomes split into good and bad. When patients were detained for longer periods in psychiatric units, its staff at times became the necessary ‘bad object’, Rey’s ‘stone Mother’,14 ‘much is taken’, but ‘much still abides’. This lament is a plea, when faced with suicide, for psychiatrists, alongside patients and their families, to ‘strive, to seek, to find, and not to yield’ – to fashion, finance or fatalism.Of course none of this call – for an attachment perspective, for more long-term therapy, for reviving therapeutic communities, for training family therapists – can reverse the horror of the loss one iota. When someone dies, from whatever cause, especially if young, a web of meanings, hopes and connections is severed. Restoration of meaning entails a painful recapturing and reworking of the past. The totality of the patient’s being – strengths, delights, loves, achievements, as well as suffering and pain – has to be sought and re-found. A similar task faces today’s psychiatric profession – to value the past, mourn what is irrevocably lost, reclaim what can be salvaged. In suicide, echoing Tennyson, a lifelong mourner,


Feelings of guilt have tormented Holocaust survivors, ranging from immediately after the liberation to later in life, for shorter or longer periods, and persisting for some throughout their entire post-war lives. Descriptions of the guilt experienced by survivors of the Nazi camps occupy an impressive amount of literature: “Why me?” was the question, when a younger and more able family member perished; “Why me?” when more productive members of the community perished; “Why me?” when a million and a half children were deprived of their lives. Many found the answer by retelling their stories, witnesses of what happened. This type of guilt is much different from the recently described phenomenon of survivor syndrome, namely the secondary guilt felt by Nazi-persecuted Jewish writers. Despite successes in all aspects of their life, these writers developed a self-incriminating guilt due to their perceived inadequacy of communicating, particularly in light of the resurging anti-Semitism worldwide. This paper deals with the survival and suicides of Nazi-persecuted Jewish writers and offers a possible explanation for their late self-destructive acts. The problem of guilt experienced by survivors of the World War II (WWII) concentration camps is well-documented.To establish a baseline, the case of Jewish writers in Central European lands is illustrative. Emancipated by the Enlightenment, Jews in Central Europe flooded the universities in the late eighteenth and early nineteenth centuries, first as students and then as teachers. Once Jewish writers were permitted to contribute to the literary world, their number grew and proportionally exceeded that of their brethren in the general population. Many writers acquired a perfect command of, and developed a deep love of the vernacular language, none more so than the German one.The disseminated theories on post-Auschwitz writings have varied: some have stated that too much was written, others that not enough was written. Perhaps the most intellectual of writers who survived the Holocaust, Jean Amery , defined an intellectual’s qualities: “one was not merely educated, but had an aesthetic consciousness, with humanistic and philosophical views cultivated in many spheres.”The encyclopedia of post-Enlightenment, the Metzler Lexicon of German-Jewish writers, records a total of 268 Jewish writers (of whom 43 were women).This and other relevant literature was reviewed that related specifically to the lives of Jewish writers, pre- and post-Holocaust, as well as a few writers of non-German or non-Jewish origin who had endured the same pattern of suffering. Biographical information found in the literature was searched to identify those writers who had committed suicide.The pre-Third Reich records indicated that very few Jewish writers in Germany had committed suicide. Noteworthily, all of the writers who had committed suicide during or after the Nazi regime were victims of persecution or incarceration.The eminent historian Konrad Kwiet studied the overall Jewish experience in pre-Nazi Germany. He concluded: “Organized persecution had a profound effect on Jewish morale. ... a suicide curve would document the close correlation between persecution and suicide.”6Two patterns were observed in the suicides of the pre-war/war period. The first pattern related to writers who remained on German soil and were persecuted and restricted in their careers, with some being temporarily interned. These writers, unwilling or unable to leave the country, found escape in self-destruction. Examples of such were John Höxter and Ludwig Fulda, both in Berlin, and Egon Friedell in Vienna, all of whom committed suicide just before WWII.The second pattern related to writers who had left Germany and suffered from what Roden defines as the “crisis of exile.”Exilkreisen), a term that was coined by Klaus Mann and led to “Kreisenliteratur.”5Several of these writers managed to escape to Palestine, such as A. Koestler, or to free countries in Europe, the Americas, Asia, or Australasia . For some, suffering took the form of a “crisis of exile”  provides this insight into the survival syndrome: “one doesn’t die from grief—you go on living” and “I took leave of my skin—it had a bad smell, worn from all the blows it had received.”9The persistence of the torment and the incurability of the concentration camp syndrome were perceptively described by Kaminer: “Even if the survivors founded a new family, even if they experienced professional success, even if they have a peaceful environment, deep inside them lurks anxiety and feeling of being in constant threat … a feeling of living on razor’s edge.”10Surprisingly, for writers, the release from the camps into the general community proved stressful.The general frame of survivor syndrome has been detailed by Niederland.A very detailed study was also given by Ryn on the “Evolution of Mental Disturbances in the Concentration Camp Syndrome (KZ-Syndrom)”.Secondary guilt syndrome of Jewish writers is presented as a psychological decompensation, following a period of success and life rebuilt. The post-war condition emerged in three stages: latency, activity, and finally secondary guilt syndrome. The initial period of literary silence (the latent period) was not the result of amnesia. For different writers, different events broke the silence: “The experience was not forgotten or repressed, it needed appropriate time when ‘suddenly everything demanded telling’.”4Once this latency period had ended, commonly a period of intense literary creativity followed, which focused on Holocaust-related topics. The duty to bear witness to the atrocities was a compulsive driving force for many survivors, and more so for the intellectuals, including gentile prisoners like Terrence Des Pres9The last stage of the writers’ suffering, secondary guilt syndrome, began to manifest via a disappointment that led to a pre-suicidal period. Once they felt that they had fulfilled their duties and had disseminated their testimonies, they suddenly sensed that their audience was tiring of the subject. “The survivors wanted to transmit a message … but you discarded their testimony.”16The Jewish writers discussed herein survived the Holocaust, passed through these three stages, and eventually committed suicide. Three of them are described in more detail below.The story of the Austrian writer Jean Amery was typical. Born as Hans Mayer in Vienna in 1912 to a Jewish father (killed fighting for the Austro-Hungarian Empire during World War I) and a Catholic mother, he studied philosophy. He fled his native land in 1938 after the annexation of Austria. Changing his name to Jean Amery, he settled in Belgium. Amery was arrested for anti-fascist activities and severely tortured. Once it was learned that he was Jewish, he was sent to Auschwitz and later to Buchenwald. In 1945, Amery was one of the walking skeletons found by the British in the liberated Bergen-Belsen. After regaining his “freedom,” Amery lived in Belgium. He was silent for some 20 years, until “I could again meet Germans impartially.”17His autobiographical stories  were not published until 1966, when he could finally write about “things that were weighing on my soul.”18His feelings of guilt were based on the perception of his inability properly to communicate his experiences. For Amery, aging was made particularly painful “by scars left by the Auschwitz experience.”Amery committed suicide in 1978. Was his suicide a sign of unrecognized and untreated depression, which eventually with age and deteriorating health led him to take “the last path to freedom”?Primo Levi’s story is particularly tragic. He was born in Torino, Italy, in 1919 into a large, assimilated, and educated family that gave the world artists, scientists, and a Nobel Laureate. Primo studied organic chemistry, barely managing to finish his studies before the Racial Laws were enacted in Italy. Aged 20, he joined the anti-fascist movement and was captured and subsequently interned in the camp for political prisoners. Betrayed by a fellow partisan as being Jewish, Levi was sent to Auschwitz as prisoner no. 174517.20His feelings of guilt were based on the perception that he had insufficiently communicated his message, thereby allowing the world to become indifferent to the past. His emotional disturbance became steadily more pronounced, culminating in his plunge to death on April 11, 1987. Levi lived “without peace,” passing through all three phases of post-war suffering. The author Elie Wiesel asked, “Why Death, Primo?” and then answered his own question: “He killed himself because he could not go on.”21Levi was known to have suffered from repeated bouts of depression. He was treated for at least six years by a psychiatrist, a psychoanalyst, and a neurologist. He was also treated with a monoamine oxidase inhibitor, tramylcypromine  with trazodone (Trittico or Desyrel), sleeping tablets (Neulactil), and anti-dementia medication.23The officially declared suicide was questioned by some friends. However, none contested his severe depression, perhaps aggravated by several somatic disorders. Levi’s words were: “... the most serious disease I ever had: the tattoo on my forearm.”Joseph Wulf was born in Chemnitz, Germany, in 1922 and received a rabbinical education. He experienced ghetto life, and at the age of 22 he became prisoner no. 114866 in Auschwitz. After the war, he wandered through Poland, Paris, and Berlin. His driving force was “to do everything to prevent the world from forgetting the millions of murdered Jews.” He was silent for 14 years, after which he wrote many books—all of which were only about the Holocaust. At the end of his life, he lamented in a letter to his son: “I have published 18 books about the Third Reich and they had no effect ... mass murderers walk around free, live in little houses, and grow flowers.”As mentioned above, the Jewish intellectuals suffered more in the camps. They were recognized, detested, and singled out by the guards, and punished and beaten more by both envious kapos and the SS. The intellectuals were persons whose main activity was the production or evaluation of ideas;The phenomenon of the interdependence between suicide and the social environment was already established in 1897 by the sociological studies of Emile Durkheim.29Incarceration caused prolonged psychic stress and severe physiological damage and even metabolic deprivation with its secondary organic brain syndrome. It also had a chronic effect on a nervous system already damaged by famine and injury. It has already been medically established that these factors predispose humans to emotional decompensation.30The example of persecuted Jewish writers serves as an extension of the above-mentioned social thesis of suicide. The biographical data on Jewish writers who committed suicide reveal that all were persecuted or incarcerated, some were exposed to famine, to severe loss of weight, and yet others to the cold and to physical abuse. No study has yet shown if there was a higher incidence of suicide among Jewish writers compared to non-Jewish writers, or compared to survivors in general. Likewise, no data have correlated the type of suicide with the type of personality, or explained the gender dominance. No studies have been made of their childhood or adolescent life to discover a potentially predisposing personality. However, just as these intellectuals suffered in the camps, they faced difficulties in adjusting to the free world.The initial guilt they experienced was for surviving—a tormenting remorse that remained for years. That feeling of guilt was further amplified by the delayed, self-incriminating guilt of failure as communicators. The parallel rise of anti-Jewish hatred led to their “ultimate refuge,” a delayed form of homicide committed by their persecutors.This extension of Durkheim’s theory to the Nazi period has been supported by the non-Jewish writer Tadeusz Borowski (Auschwitz no. 119198), who underwent the same pattern of suffering and suicide. He described his experiences in his book “This Way for the Gas, Ladies and Gentlemen,” published just three years before his suicide.31What was different in the case of those writers who did not “drown?” Indeed, there were persecuted or incarcerated writers who did survive, who became productive, and who made no known attempts at suicide. One can only speculate about how survivors like Viktor Frankl, Samuel Pisar, Simon Wiesenthal, and Elie Wiesel were “saved” from that tragic end. There is no universal explanation.An important observation has been raised by Amery: namely that ideology and faith were an “inestimable help ... under conditions that defy the imagination: Catholics performed Mass, Orthodox Jews fasted on the Day of Atonement, the Marxists persevered that the Soviet Union will and must win.”32It was the view of Elie Wiesel  that it was easier to survive in camps for those with either a political ideology  or religious belief. In the Lexicon studied for this paper, there is no evidence of religious attachment among any of the listed suicidal writers.One might ask: was religion the life jacket that prevented Elie Wiesel from “drowning?” That might just be the case, as when reading the suggested concept on Secondary Guilt, Elie Wiesel accepted it as being “painful and insightful” .This paper has sought to extend Kwiet’s study of suicide in Germany beyond the WWII period. Applying Durkheim’s social theory of suicide, it has been suggested that Nazi persecution was the direct cause of the guilt experienced by persecuted intellectuals. Following the initial and primary guilt of the survivors, this feeling was later amplified by a perceived failure in their duty to communicate. Certainly Bettelheim and Primo Levi, in choosing the anniversary of their liberation as the day of suicide, expressed a firm connection between persecution and suicide.34p.167 This might be true; however, it does not seem to apply to Nazi-persecuted Jewish intellectuals. Durkheim’s work did not anticipate what actually happened: that the successful fight for survival in the camps would lead to a continuous fight for survival post-war. Would the famous sociologist have expected the continuous survival of these Jewish intellectuals—all of whom developed successful careers and were offered accolades, won prizes, settled with families, and had no financial problems—without giving in to “despair?” This question will have to remain unanswered.Durkheim stated that, “… the Jew is an intellectual and a man of culture … has all the intelligence of modern man without sharing his despair.”It is suggested that although Primo Levi threw himself to his death, he was “pushed” by this delayed secondary guilt syndrome. The chief rabbi of Torino, Emanuele Artom, clearly supported this concept by permitting Primo Levi to be buried in the Jewish cemetery, contrary to tradition. In the Rabbi’s view, Levi’s death was not truly suicidal self-destruction, but rather a delayed Nazi homicide.23The concept that the suicide of Jewish intellectuals may be a delayed homicide by the Nazis rather than an act of self-harm is controversial. Many psychologists and historians would dispute it. However, it seems to the author as plausible from a medical perspective, and it is certainly different from post-traumatic stress syndrome. However, it would be simplistic to accept these suicides within a mono-causal explanation. The perceived inability to express their fear of the resurfacing hatred and their perceived impression of failure to communicate the uncommunicable (in the case of e.g. Bettelheim) persisted. Their guilt for failing convincingly to warn the world of the early signs indicating a re-emergence of old, temporarily suppressed ideas may well explain their suicides—their last way of exiting from a persisting “psychache.”The writers discussed herein suffered from self-incrimination and developed a two-fold sense of guilt: the first for their inability to communicate the horrors of what had been experienced in the camps, and the second for their inability to prevent the atrocities they had witnessed and their reoccurrence. Theirs was a prophetic guilt that feared the resurgence of a similar hatred. Indeed, this dormant anti-Semitism has exploded in our decade, coincidentally soon after the demise of these writers. They were persecuted because they were Jews, and they died because they were Jews. Hence, their perceived sense of guilt has been considered as quite real by the Jewish community, and it was the effect of their suffering as Jews that led to the decision that they deserved to be buried with their brethren.It seems symbolic that Levi and Bettelheim, as mentioned above, ended their lives on the anniversary of their “liberation.” Another sensitive intellectual, Doctor of Medicine, Arthur Kassel, likewise committed suicide on an anniversary, in his case on the eight-year anniversary of his being forced to leave his family behind in Germany. Unable to save them, he killed himself upon learning of their final end in Auschwitz. He too was deemed a victim in 1947 and appropriately buried in the Jewish Cemetery in Sydney.35