Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda

Abstract

There are limited data on the challenges faced by carers, in particular older carers, in managing the difficult task of status disclosure for HIV-positive children. We report findings from qualitative interviews with 18 care dyads of older people and HIV-positive children living in rural south-western Uganda. Our data provide insights into  perceptions and norms influencing communication during and following disclosure among both carers and children, including those shaped by gendered expectations of girls’ and boys’ sexual behaviour. Young participants reported several advantages of knowing their status and showed considerable resilience in the face of HIV disclosure. Better and more support is needed to help health workers and carers (particularly older carers) manage cross-generational communication around HIV disclosure and other related aspects of sexual and reproductive health as critical aspects of children’s psychosocial development and well-being.

Keywords: HIV disclosure, HIV-positive children, older carers, psychosocial well-being