Dying Twice': A Multi-level Model of the Roots of AIDS Stigma in Two South African Communities

Social Psychology, London School of Economics, UK.
Journal of Health Psychology (Impact Factor: 1.22). 06/2007; 12(3):403-16. DOI: 10.1177/1359105307076229
Source: PubMed


We highlight the complex interplay of psychological and social factors driving AIDS stigma, drawing on a study of community responses to HIV/AIDS in two communities in KwaZulu-Natal, South Africa. We draw on 120 semi-structured interviews and focus groups, in which open-ended topic guides were used to explore community responses to HIV/AIDS. Drivers of stigma included fear; the availability and relevance of AIDS-related information; the lack of social spaces to engage in dialogue about HIV/AIDS; the link between HIV/AIDS, sexual moralities and the control of women and young people; the lack of adequate HIV/AIDS management services; and the way in which poverty shaped people's reactions to HIV/AIDS. We discuss the implications of our findings for stigma-reduction programmes.

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    • "The perception of unfair or bad feelings from the public towards HIV infected people agreed with findings from other studies (12, 15). HIV/AIDS is stigmatizing because it carries many symbolic associations with danger. "
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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.
    Materia Socio Medica 06/2014; 26(3):191-4. DOI:10.5455/msm.2014.26.191-194
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    • "This might not be unique to Zambézia Province or Mozambique as similar observations have been made in some regions of neighboring South Africa (Campbell, Nair, Maimane & Nicholson 2007). Under consensus one, reductions in externalized forms of public stigma at the national level are attributed to better knowledge about HIV transmission routes and preventions. "
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    ABSTRACT: Abstract Stigma has been implicated in poor outcomes of human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) care. Reducing stigma is important for HIV prevention and long-term treatment success. Although stigma reduction interventions are conducted in Mozambique, little is known about the current nature of stigma and the efficacy and effectiveness of stigma reduction initiatives. We describe action research to generate consensus on critical characteristics of HIV stigma and anti-stigma interventions in Zambézia Province, Mozambique. Qualitative data gathering methods, including in-depth key-informant interviews, community interviews and consensus group sessions, were utilized. Delphi methods and the strategic options development analysis technique were used to synthesize qualitative data. Key findings are that stigma enacted by the general public might be declining in tandem with the HIV/AIDS epidemic in Mozambique, but there is likely excessive residual fear of HIV disease and community attitudes that sustain high levels of perceived stigma. HIV-positive women accessing maternal and child health services appear to shoulder a disproportionate burden of stigma. Unintentional biases among healthcare providers are currently the critical frontier of stigmatization, but there are few interventions designed to address them. Culturally sensitive psychotherapies are needed to address psychological distress associated with internalized stigma and these interventions should complement current supports for voluntary counseling and testing. While advantageous for defining stakeholder priorities for stigma reduction efforts, confirmatory quantitative studies of these consensus positions are needed before the launch of specific interventions.
    SAHARA J: journal of Social Aspects of HIV/AIDS Research Alliance / SAHARA , Human Sciences Research Council 02/2014; 10(3-4). DOI:10.1080/17290376.2014.885847 · 0.81 Impact Factor
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    • "And we are open to speak to the care supporter about things that we are afraid to speak to the nurses about.” Campbell et al.'s study of AIDS stigma in two South African communities [44] similarly demonstrated the importance of safe social spaces, noting “that what people lack is not always information, but rather social spaces in which they feel safe to discuss HIV and AIDS” (p. 409). "
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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).
    Journal of the International AIDS Society 10/2013; 16(1):17978. DOI:10.7448/IAS.16.1.17978 · 5.09 Impact Factor
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