1. Chapter 1: Coping with a chronic illness.
- Author
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Boulton, Mary, Walters, Sam, Miller, David, Beck, Eddy, Moatti, Jean-Paul, Souteyrand, Yves, Prieur, Annick, Sandfort, Theo, and Aggleton, Peter
- Subjects
AIDS in children ,HIV-positive persons ,YOUNG families ,TERMINALLY ill children ,PARENTS ,JUVENILE diseases ,FOSTER parents - Abstract
This chapter describes the findings of one of a small number of studies which have begun to explore the nature of the experience of young families of HIV-infected children from an African background. In contrast to previous studies, a substantial proportion of the families recruited included individuals who had emigrated from East and sub-Saharan African countries where heterosexual transmission of HIV infection is common. Like previous studies, however, it is limited by a small sample size and a poorly developed theoretical framework within which to interpret the findings. The very high degree of stigma associated with HIV infection and the notions of shame within the extended family made it virtually impossible for parents to confide even in their own immediate family. This contrasts with the position of the majority of families reported in other studies who generally distinguish between family and others in disclosing their diagnosis. These differences highlight the way culture shapes responses to illness and the unexpected variations that are found in different social groups. They also point to the importance of extending this kind of research to other population groups and examining the response of families in different social and cultural contexts. Natural parents were described as finding the future difficult to face, feeling isolated and alienated from others and as particularly concerned about not being present at the severe illness and death of their HIV-infected child. Similar feelings were described by parents in this study. However, instead of the optimistic denial and hopes for the future described by uninfected parents in the present study, the researchers described foster parents as appreciating the present and as feeling better prepared to deal with the eventual death of their HIV-infected child.
- Published
- 2000