HIV Disclosure to Infected Children Involving Peers: A New Take on HIV Disclosure in the Democratic Republic of Congo.

Appropriately informing HIV-infected children of their diagnosis is a real challenge in sub-Saharan Africa. Until now, there is no consensus on who ought to disclose and how to disclose. This paper describes the model for HIV status disclosure in which HIV-positive children/adolescents are informed about their diagnosis in a process conducted by young peers under healthcare worker (HCW) supervision in a hospital in Kinshasa, the Democratic Republic of Congo. This new take on HIV status disclosure involving peers includes four stages that help the trained peer supporters to provide appropriate counseling, taking into account the age and level of maturity of the child/adolescent: the preliminary stage, the partial disclosure stage, the full disclosure stage, and the post-disclosure follow-up stage. Of all children/adolescents whose HIV status disclosure data were documented at Kalembelembe Pediatric Hospital (KLLPH) between 2004 and 2016, we found that disclosure by peers was highly accepted by parents, children/adolescents, and health workers. Compared to children/adolescents disclosed to by HCWs or parents, children/adolescents disclosed to by peers had (a) fewer depressive symptoms reported, (b) better drug adherence resulting in higher viral load suppression, and (c) a higher proportion of survivors on treatment. We found that involving peers in the disclosure process of HIV is an important approach to ensure adherence to treatment, resilience, and mental wellbeing of HIV-infected children/adolescents.

The associations between resilience, social capital and self-rated health among HIV-positive South Africans.

This study examined the relationship between resilience, social capital and self-rated health among 263 HIV-positive South Africans living in poverty, using questionnaires. Self-rated good health was predicted by younger age, trust in community-based organizations and having contacts of different religions. The findings highlight the importance of community-based networks and resources for care and support for persons living with HIV/AIDS in poor, rural areas. Furthermore, resilience, which also related positively to education and income, contributed positively to self-rated health, drawing attention to the interplay between resources at individual and community levels.

Support groups for HIV-positive people in South Africa: who joins, who does not, and why?

Psychosocial health care for persons living with HIV/AIDS (PLWHA) is inadequate. Support groups for PLWHA could offer arenas where psychosocial issues are addressed, yet more knowledge is needed about those who join and those who do not join such groups. In this study, conducted in Limpopo province, South Africa, 49 PLWHA were asked about their motivations for joining a support group, while 22 PLWHA were asked about their reasons for not joining a support group. The most prevalent motivations for joining were to get information (59%) and social support (53%). The main reasons for not having joined were lack of knowledge (32%) and understanding (19%) about the support group and time constraints (19%). Physical symptoms and mental health were measured using the Stages of HIV Related Physical Symptoms & 20-item Symptom Checklist for HIV Infection and the General Health Questionnaire-28 (GHQ-28). Physical symptoms ranged from 0 to 17 with an average of 6. Mental distress was high, with 55% of members and 46% of non-members scoring above threshold levels. Support group members tended to be female, younger, to have tested due to pregnancy or out of concern, and to have grants as their sources of income. Non-members had tested due to illness, reported considerably more pain and were more likely to have no income. PLWHA experienced high mental, physical and social distress which must be addressed. Attention to gender differences is called for. While all members joined the support group to gain information and learn to cope, women were more likely to join to get support and deal with stress, while men joined to stay active and educate others. Support groups could be important links in the chain of comprehensive HIV health service delivery, given that they manage to recruit and meet the needs of PLWHA.

Support Groups for HIV-Positive People in South Africa: Who Joins; Who does not; and Why?

Psychosocial health care for persons living with HIV/AIDS (PLWHA) is inadequate. Support groups for PLWHA could offer arenas where psychosocial issues are addressed; yet more knowledge is needed about those who join and those who do not join such groups. In this study; conducted in Limpopo province; South Africa; 49 PLWHA were asked about their motivations for joining a support group; while 22 PLWHA were asked about their reasons for not joining a support group. The most prevalent motivations for joining were to get information (59) and social support (53). The main reasons for not having joined were lack of knowledge (32) and understanding (19) about the support group and time constraints (19). Physical symptoms and mental health were measured using the Stages of HIV Related Physical Symptoms et 20-item Symptom Checklist for HIV Infection and the General Health Questionnaire-28 (GHQ-28). Physical symptoms ranged from 0 to 17 with an average of 6. Mental distress was high; with 55 of members and 46 of non-members scoring above threshold levels. Support group members tended to be female; younger; to have tested due to pregnancy or out of concern; and to have grants as their sources of income. Non-members had tested due to illness; reported considerably more pain and were more likely to have no income. PLWHA experienced high mental; physical and social distress which must be addressed. Attention to gender differences is called for. While all members joined the support group to gain information and learn to cope; women were more likely to join to get support and deal with stress; while men joined to stay active and educate others. Support groups could be important links in the chain of comprehensive HIV health service delivery; given that they manage to recruit and meet the needs of PLWHA

Perceived stress and burnout among volunteer caregivers working in AIDS care in South Africa.

AIMS: To conduct a quantitative investigation of stress and the relationship with burnout among AIDS care volunteers. BACKGROUND: Volunteer caregivers experience stress that could lead to burnout. Yet, very few studies quantify stress and its relationship with burnout among AIDS care volunteers. DESIGN: This study uses a cross-sectional, exploratory survey design. METHODS: Face-to-face interviews were conducted with 126 volunteer caregivers working in 13 semi-rural communities (townships) in Durban, South Africa in April 2009. All participants were women, Christian and with low levels of education. A 22-item instrument was drawn from Pearlin et al.'s role overload and role captivity scales, Van Dyk's stress factor scale and the Maslach Burnout Inventory. RESULTS: Most of the volunteers had moderate-to-high levels of stress. 'Role/work overload' 'lack of support' and 'overwhelming nature of the disease' explained most of the variance in stress. Volunteers' age and number of patients in their care were predictors of stress. Caring for only AIDS patients, lack of support, stress emanating from perceived stigma and lack of training; and the overwhelming nature of AIDS were predictors of burnout. CONCLUSION: High levels of stress could negatively impact volunteers' health and well-being and on-the-job performance. Policy makers must develop and fund home-based care models that take into account the stressors associated with AIDS care, by reducing the work load, providing ongoing psychosocial support and recruiting nurses to assist volunteers. The small non-probability sample used in this study highlights the need to treat the findings with caution.

The social construction of identity in HIV/AIDS home-based care volunteers in rural KwaZulu-Natal, South Africa.

Home-based care volunteer (HBCV) identity and how it is shaped was the main focus of the study. Fifteen HBCVs were interviewed about their work and personal life stories and then interviewed reflectively using a narrative interviewing style. Specific attention was paid to contextual meta-narratives and social field narratives in understanding the women's stories. Findings indicate that social field narratives of the women's stories were dominated by negative aspects of gender, poverty and socio-political factors. These were seen to coincide with the 'feminisation of responsibility' in this context effectively coercing the women into agency which manifested as their home-based care work. Meta-narratives influencing the women's lives were dominated by stories of communal motherhood, aspirations to service-oriented work and religious beliefs and commitment. The question of how it is possible for women who are seemingly constrained by oppressive narratives to voluntarily engage in community participation was answered in the women's personal life stories about being compassionate, hopeful, helpful and ambitious and having initiative. These characteristics collectively pointed to personal agency. Exploring connections between the different aspects of identity and context revealed that the women made sense of their community participation through their personal identities as strong and loving mothers. Connections between volunteer personal identity, agency and volunteer group identity were explored to make sense of the link between HBCV identity and volunteerism. The mother identity, encompassing personal agency (strength or power) and love (the meta-narrative of communal motherly love), was salient in influencing community participation of the group.

Masculinity and HIV disclosure among heterosexual South African men: implications for HIV/AIDS intervention.

Relationships and constructions of masculinity are central to understanding the process of male HIV disclosure, which is an important step towards accessing HIV-related services. Data from in-depth interviews and focus-group discussions with 23 HIV-positive, self-identified heterosexual, Black South African men were used to explore the disclosure process and how this process was negotiated in the context of constructions of masculinity. Of these men, 20 had disclosed to one or more persons, with partners and siblings being the preferred confidants. Disclosure was dependent on the acceptance of HIV status, perceived support and healthy relationships with others, HIV counselling and participation in educational and training activities. Non-disclosure was explained as a result of stigma, fear of rejection, discrimination, a lack of healthy relationships with others and lack of access to suitable disclosure strategies. Negative perceptions of HIV and hegemonic conceptions of masculinity hindered men from disclosing and seeking health services. Many men, however, managed to renegotiate their masculine identities to become responsible, knowledgeable HIV-positive individuals, protecting their families and becoming community educators. Findings suggest the need to consider gendered, contextual, skills-building/income-generating and guided interventions to promote male HIV disclosure and service uptake.

Balancing between normality and social death: Black, rural, South African women coping with HIV/AIDS.

The millions of people living with HIV/AIDS are in urgent need of effective care and support interventions. Such interventions should take people's reported needs, coping strategies, and context into account. Usually, active problem-focused coping strategies have been encouraged because they are considered to be more beneficial than passive emotion-focused strategies. However, this may not be the case in the South African context. This study was based on in-depth interviews with Black, rural, South African women about their coping strategies. The overriding aim of coping was to solve the tasks of physical, psychological, and social survival. Strategies involving avoidance of, escaping from, or minimizing HIV/AIDS and its accompanying emotional distress were predominant. We argue that such strategies could be adaptive in a society with scarce resources and marked by gender inequalities. Our findings suggest that care and support interventions should be sensitive to culture and context, should be holistic and participatory, and should include income generation and child care services.

The process of evaluating a capacity-building support initiative for HIV positive South Africans.

This paper describes the process of evaluating a capacity-building initiative involving HIV positive South Africans. The evaluation was conducted within a participatory evaluation framework, which aims at empowering participants through social action. The rationale is that an understanding and acceptance of evaluation results promotes commitment to act. Forty four members of the Kudu Support Group and 23 non-members participated in the evaluation. Methods included in-depth interviews, a survey, repeated measures of the General Health Questionnaire-28 (GHQ-28), a SWOT analysis, interviews with health workers, field notes, and participatory observation. The capacity-building initiative resulted in empowerment through paid employment for support group members, the establishment of a vegetable garden, increased skills and efficacy, access to resources and networks, a perceived reduction of stigma, perceived improvement of social relations, and improved scores on the GHQ-28. Lessons that emerge out of this study are the importance of integrating evaluation as a part of ongoing activities throughout the research project; to ensure that methods and results are understandable and useful to for the participants; that the evaluator has an in-depth understanding of the project and context; and to introduce frequent and simple internal evaluation tools to guide efforts to improve community-based groups' functioning and activities.