Experiences of having HIV and the support of a community organization- a qualitative study

Abstract: The objective of this qualitative study was to explore how six South African HIV-diagnosed persons experience the social and emotional consequences of being infected and how the support structure provided by the non-governmental organization Keiskamma affect their everyday lives. The qualitative approach consisted of semi-structured interviews with six of Keiskamma’s patients and observations of the village inhabitant’s life in the Ngqushwa municipality, Eastern Cape to give a wider picture of the respondent’s context and life situation. Theories used to analyse collected data was stigma (Goffman 1973), sense of coherence (Antonovsky 2005) and coping (Lundin et al 2009). Six themes were identified: faith, knowledge, network, belonging, people’s view of them, frustration and emotions during the time of diagnosis, these together increase our understanding of how it is to live with HIV in rural South Africa at a micro level. However, deficits at macro level were also identified that interfered with the respondent’s quality of life. These are poverty, lack of access to health facilities and bad roads. Through advocacy and collaborate efforts in cooperating with the Department of Health the Keiskamma tried to bring a change to their situation at a structural level. A difference found was that the village of Hamburg, where the Keiskamma was located, had less HIV stigma and the disease was more explicit compared to the villages outside. This can perhaps be viewed as an unequal knowledge distribution and the impact of the work Keiskamma did.