Revealing the full extent of households’ experiences of HIV and AIDS in rural South Africa

Households experience HIV and AIDS in a complex and changing set of environments. These include health and welfare treatment and support services, HIV-related stigma and discrimination, and individual and household social and economic circumstances. This paper documents the experiences of 12 households directly affected by HIV and AIDS in rural KwaZulu Natal, South Africa, between 2002 and 2004. The households were observed during repeated visits over a period of more than a year by ethnographically trained researchers. Field notes were analysed using thematic content analysis to identify themes and sub-themes. This paper focuses on three dimensions of household experience of HIV and AIDS that have received little attention in HIV and AIDS impact studies. First, that experience of HIV and AIDS is cumulative. In an area where population surveys report HIV prevalence rates of over 20% in adults, many households face multiple episodes of HIV-related illness and AIDS deaths. We describe how these challenges affect perceptions and responses within and outside households. Second, while over 50% of all adult deaths are due to AIDS, households continue to face other causes of illness and death. We show how these other causes compound the impact of AIDS, particularly where the deceased was the main income earner and/or primary carer for young children. Third, HIV-related illness and AIDS deaths of household members are only part of the households’ cumulative experience of HIV and AIDS. Illness and death of non-household members, for example, former partners who are parents of children within the households or relatives who provide financial support, also impact negatively on households. We also discuss how measuring multiple episodes of illness and deaths can be recorded in household surveys in order to improve quantitative assessments of the impact of HIV and AIDS.