Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: process evaluation

Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya. Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths­weaknesses­opportunities­threats to review the groups at the end of the 10-month set-up period. Results: Recruitment resulted in registration of 254 participants to 18 groups ­ two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in 'merry-go-round' activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership

Negotiating Therapeutic Citizenship and Notions of Masculinity in a South African Village

The article explores the idea of therapeutic citizenship in relation to the experiences of men who attend support groups for people living with HIV or AIDS (PLHIV). At a rural South African health facility offering free antiretroviral (ARV) medicines; support groups aim to empower HIV-positive clients through knowledge and skills that enable them to adhere to their ARV regimen. Members are exhorted to abandon their `traditional' health and gender beliefs in favour of a biomedical understanding and approach to health; to embrace participation in a support group for PLHIV; and to actively challenge HIV stigma through the public disclosure of their HIV-test result. Fourteen months of ethnographic fieldwork conducted in Bushbuckridge; Mpumalanga Province; South Africa; investigated how men negotiated these efforts - normally characterised in the academic literature as `therapeutic citizenship' - in relation to men's socio-cultural definitions of masculinity. The findings reveal that most of the men gained the knowledge and skills necessary to adhere to treatment. Although they generally behaved in a disciplined way; they remained doubtful about their commitment to the particular kind of `HIV identity' that a support group conferred on them. Men who embrace this identity must abandon their previous masculine lifestyles and conform to the support group's messages concerning what it means to be a `responsible' HIV patient. The research documents some of the challenges men experience in negotiating these conflicting demands. The discussion draws on personal accounts by the participants to illustrate the ambivalence of men towards their `HIV identity' and to belonging to a support group

Disclosure among HIV-Positive Women: the Role of HIV/AIDS Support Groups in Rural Kenya

Disclosure by people living with HIV or AIDS is critical for HIV prevention and care. However; many women choose not to disclose their HIV status for fear of negative outcomes; such as blame and rejection. The World Health Organization suggests that HIV/AIDS support groups help to encourage women to disclose their status; but little is known about the role of such groups in Kenya. This study used qualitative research methods to gain insight into rural women's experience of disclosing a positive HIV status and it explores opinions about the role of support groups in relation to disclosure. Focus group discussions and semi-structured interviews were conducted with HIV/AIDS support group members and leaders. Thematic analysis showed that the women felt a sense of duty to inform others of their HIV status; particularly in order to prevent HIV transmission and to encourage sexual partners to be tested. There were multiple problems associated with disclosure; and negative outcomes such as blame and rejection were common. Support groups gave the women confidence and provided emotional support; which may have assisted them with coping with the negative outcomes of disclosure. The findings demonstrate that such support may improve women's experience of HIV-status disclosure and possibly even promote disclosure. However; initiatives such as these must protect those who disclose and therefore should take into account the local cultural and economic context

An Assessment of Counselling and Support Services for People Living with HIV in Gauteng; South Africa: Findings of a Baseline Study

An increasing body of literature shows that HIV/AIDS and mental health issues are closely related. In spite of this; the mental health correlates of HIV and AIDS remain largely unacknowledged and under-researched in sub-Saharan Africa. Furthermore; despite guidelines by the World Health Organization insisting that counselling with integrated psychological or mental healthcare helps people living with HIV or AIDS (PLHIV) to deal with their disease status and thus increases their quality of life; the services and interventions to address this significant health burden are still lacking; making the HIV/AIDS and mental-health nexus a sizeable social services and health problem. As part of an ongoing research programme at the University of the Witwatersrand to address this; the article reports on a baseline study that sought to identify the nature and extent of counselling and support services available to PLHIV in Gauteng Province. The study found that available counselling and support services are focused largely on voluntary counselling and testing for HIV (VCT); which appears to be primarily an educational intervention rather than a therapeutic modality. Service providers within this framework have inadequate knowledge and capacity to identify mental health problems. The findings of this study point to a strong need for integrated HIV/AIDS services that include assessment of mental health and substance abuse problems and their appropriate management. Appropriate training and supervision of healthcare workers and counsellors is an essential component in the identification and referral of HIV patients with mental health problems

Understanding Participation in a Hospital-Based HIV Support Group in Limpopo Province; South Africa

Background: Support groups are an appropriate way of delivering psychosocial support to people living with HIV/AIDS; especially in low-resource countries. The aim of the study was to understand why people with HIV attended psychosocial support groups. Methods: This was a qualitative study design using focus-group discussions in which support-group members volunteered to participate. Five focus groups were involved in the study. Results: The participants attended because they were referred by a health-care worker; wanted information; wanted emotional support; accompanied an ill relative or knew about the support group. Perceived benefits included receiving psychological support; accepting one's HIV status; reducing stigma and isolation; increasing hope; forging new friendships; helping others; obtaining HIV-related information; developing strategies to change behaviour; gaining access to medical care at the adjoining HIV clinic and receiving food donations. Negative aspects of attending the support group included the large size of the support group; long queues at the HIV clinic; concerns about confidentiality and negative staff attitudes towards the participants. Leaders were concerned about conflict; burn-out and impractical protocols. Access to disability grants was also a concern. Conclusions: Support groups can assist members to cope with the various challenges associated with living with HIV/ AIDS through offering structured emotional; informational; instrumental and material support. Support group sizes should be limited. A structured curriculum containing up-to-date information about ART should also be offered to support groups. Social workers should furthermore be involved to facilitate access to appropriate social grants. Finally; support group leaders should receive appropriate training and regular debriefing