Family systems and HIV/AIDS in South Africa

Department of Biobehavioral Health, The Pennsylvania State University, University Part, PA 16802, USA.
International Quarterly of Community Health Education 01/2006; 27(4):321-35. DOI: 10.2190/IQ.27.4.d
Source: PubMed


This study examines the role of family in the care and support of people living with HIV/AIDS (PLWHA) as a way of reducing the burden of stigma in the family. The PEN-3 model provided the cultural framework for this study. Data were drawn from participants' responses in 27 focus groups interviews conducted in South Africa. Participants were asked to discuss experiences of people living with HIV and AIDS in the family. The results highlight the positive and supportive aspects of the family, acknowledge the existential and unique aspects, and discuss the negative experiences shared by participants. This study's findings stress the need to take into account families' experiences with HIV and AIDS in the development of interventions aimed at reducing the burden of the disease on family systems and improving care and support for PLWHA.

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    • "Thus there is tendency for HIV positive clients to reduce interacting with people in a bid to prevent the public from knowing about their HIV positive status. This could worsen the stress PLWHA lives with, as they are forced to be silent about their status, which on its own is burdensome (4, 13, 14). This is especially so for people who need to keep their source(s) of livelihood by keeping their jobs. "
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    ABSTRACT: Introduction: The perception of People Living with HIV/AIDS (PLWHAs) on how the public feels about them could influence their willingness to seek medical care, interaction with the society and their coping strategies. Material and methods: This study assessed the perception and behavior of PLWHAs towards societal stigma and discrimination in Lagos, Nigeria. This was a qualitative, descriptive cross sectional study among PLWHAs from three of the three senatorial districts in Lagos State selected using simple random sampling. Six focus group discussions (FGDs), consisting of eight eligible respondents each were held using structured FGD guide. Results: Collected data were analyzed using simple content analysis. About three quarter of all the discussants said life had become miserable following episodes of stigma and discrimination against their personality in public, family, health care settings and the work-place. Some had feelings of guilt and depression towards these actions. About three quarter had coped with the situation by living a low-keyed lifestyle, dissociating themselves from the public and avoiding seeking care in HIV care centers. Majority of respondents were not willing to come out to publicly discuss their positive HIV status for fear of discrimination. Conclusion: Discussants recommended continuous awareness campaigns about HIV to further educate the general public towards reduction of societal stigma and discrimination against PLWHAs.
    Full-text · Article · Jun 2014 · Materia Socio Medica
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    • "Twinning these agendas [4–6], properly designed CHBC has been shown to strengthen ART adherence in resource-limited settings [7]. To date, CHBC-focused studies have provided important insights regarding the frequency and severity of clients’ symptoms [8], the benefits of home-based HIV and TB testing and counselling [9], family and household stressors [10], caregiver health status [11] and integration of CHBC into care continuums [6]. However, little research has explored the “changing nature of care” heralded by ART [12, p. 2]. "
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    ABSTRACT: Introduction: Antiretroviral therapy (ART) has rendered HIV and AIDS a chronic condition for individuals in many parts of the world. Adherence, however, is integral to achieving chronicity. Studies have shown both relatively high ART adherence rates in sub-Saharan Africa and the importance of community home-based care (CHBC) to facilitating this process. In light of diminished HIV and AIDS funding globally and increased reliance on CHBC throughout Africa, a better understanding of how CHBC may strengthen ART adherence is essential to improving patients' quality of life, tending to the needs of care supporters and achieving healthier populations. Methods: This article reports findings from a qualitative study of a CHBC organiztion serving an estimated 2500 clients in rural Swaziland. Semi-structured questionnaires with 79 HIV-positive clients [people living with HIV and AIDS (PLWHA)] yielded data on diverse aspects of being HIV positive, including insights on whether and how PLWHA perceived care supporters to facilitate ART adherence in a high stigma and structurally impoverished setting. Results: Ninety-two percent of participants said their health had improved since care supporters came into their lives. A major finding was that an estimated 53% of participants said they would have died, a few from suicide had the care supporter never intervened. More than one in four participants (27.9%) sought HIV testing after a care supporter began visiting them. Nearly a third (31%) commenced ART after and largely as a consequence of care supporter intervention. Approximately one in four (23%) reported that their care supporter had helped them to disclose their HIV-positive status to family members. Twenty-seven percent said they had felt discouraged or had been discouraged from taking ART by members of their family or community. Discussion: General inductive analysis of participant reports suggested two social mechanisms of CHBC impact on ART adherence: (i) cultivating client-care supporter "talk" to enhance treatment uptake and literacy, reduce felt stigma and challenge social pressures to desist from ART and (ii) real-time interactions between clients and care supporters whereby the care "relationship" was itself the "intervention," providing lay counsel, material and financial assistance, and encouragement when clients suffered stigma, side effects and other obstacles to adherence. These social dynamics of adherence generally fall outside the purview of conventional clinical and public health research. Conclusions: PLWHA reports of care supporter practices that enabled ART adherence demonstrated the pivotal role that CHBC plays in many PLWHA lives, especially in hard to reach areas. Relative to clinic personnel, care supporters are often intensely engaged in clients' experiences of sickness, stigma and poverty, rendering them influential in individuals' decision-making. This influence must be matched with on-going training and support of care supporters, as well as a clear articulation with the formal and informal health sectors, to ensure that PLWHA are correctly counselled and care supporters themselves supported. Overall, findings showed that PLWHA experiences of CHBC should be captured and incorporated into any programme aimed at successfully implementing the Joint United Nations Programme on HIV and AIDS (UNAIDS) Treatment 2.0 agenda Pillar 4 (increasing HIV testing uptake and care linkages) and Pillar 5 (strengthening community mobilization).
    Full-text · Article · Oct 2013 · Journal of the International AIDS Society
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    • "The family can be an important source of support. Studies in sub-Saharan Africa have found that the support of the family contributes to healthy behaviours and that partner involvement is associated with positive outcomes for HIV-infected member(s) [2,4,5,10,12-14]. "
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    ABSTRACT: Nyanza Province, Kenya, had the highest HIV prevalence in the country at 14.9% in 2007, more than twice the national HIV prevalence of 7.1%. Only 16% of HIV-infected adults in the country accurately knew their HIV status. Targeted strategies to reach and test individuals are urgently needed to curb the HIV epidemic. The family unit is one important portal. A family model of care was designed to build on the strengths of Kenyan families. Providers use a family information table (FIT) to guide index patients through the steps of identifying family members at HIV risk, address disclosure, facilitate family testing, and work to enrol HIV-positive members and to prevent new infections. Comprehensive family-centred clinical services are built around these steps. To assess the approach, a retrospective study of patients receiving HIV care between September 2007 and September 2009 at Lumumba Health Centre in Kisumu was conducted. A random sample of FITs was examined to assess family reach. Through the family model of care, for each index patient, approximately 2.5 family members at risk were identified and 1.6 family members were tested. The approach was instrumental in reaching children; 61% of family members identified and tested were children. The approach also led to identifying and enrolling a high proportion of HIV- positive partners among those tested: 71% and 89%, respectively. The family model of care is a feasible approach to broaden HIV case detection and service reach. The approach can be adapted for the local context and should continue to utilize index patient linkages, FIT adaption, and innovative methods to package services for families in a manner that builds on family support and enhances patient care and prevention efforts. Further efforts are needed to increase family member engagement.
    Full-text · Article · Feb 2012 · Journal of the International AIDS Society
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