Fragile families' experiences of caring for HIV-positive children: selected cases from the Eastern Cape and KwaZulu-Natal

Abstract

This chapter is drawn from a larger qualitative research project that sought to investigate and document the ways in which home-based care for the HIV positive and those suffering from AIDS has been carried out in two communities. The study was conducted over a period of approximately three years (between September 2008 and July 2011) in South Africa, in an informal settlement north of Durban, in the province of KwaZulu-Natal, and a rural village, Qweqwe, about 20 kilometres from Mthatha, in the Eastern Cape Province. While collecting and analysing data derived from the study, it was noted that none of the collected data made reference to children. This realisation inspired a new study on which the discussion in this chapter is based, that is, the experiences of families caring for HIV-positive children. These families are termed 'fragile families', a term borrowed from a Ford Foundation series of projects, one of which is reported on by Van Til (2000). These families are defined by the project as marginal, and thus in need of various kinds of support, varying from psychological support to material resources. What is common to the Ford Foundation project and the South African families under discussion is that fathers are, for the most part, absent and/or not married to the mothers of the studied children. In this chapter, the author use the term 'fragile' in addition to indicates that such families experience increased vulnerability as a result of their disadvantaged socioeconomic status. The use of the term, although indicating vulnerability from the point of view of lacking multiple sociopsychological and material resources, is not intended to set up such families as victims. Moreover, it should not be assumed that all families who care for HIV-positive children are necessarily vulnerable, or that they share the same experience of the studied families. The chapter begins with a contextualisation of the socioeconomic and cultural circumstances under which care for the children living with HIV is practised. The chapter then outlines the framework within which the study is analysed both conceptually and methodologically, followed by the discussion of the findings of the study and their implications for policy and practice.