'You opened our eyes': Care-giving after learning a child's positive HIV status in rural South Africa

Abstract

Caregivers of young children identified as HIV positive, residing in Agincourt, rural South Africa were advised of their child's status. How was this knowledge received, and how did it influence care-giving and support? Interviews were conducted in May to June 2008 with caregivers of HIV positive children aged 1-5 years, 1 year following the child's HIV test and disclosure of status. Drawing on data from 31 semi-structured questionnaires and 21 in-depth interviews, we describe caregivers' attitudes, reactions, fears and aspirations after learning a child's HIV status, the perceived usefulness of the knowledge, barriers to care-giving and support received. Sociodemographic data collected through the questionnaire were analysed using Stata. Qualitative data were coded in NVIVO 8 and analysed inductively to identify themes and their repetitions and variations. Although almost half of the caregivers responded negatively initially, 1 year later, almost all had accepted and valued knowing their child's HIV status as this had enhanced their competency in care-giving. Counselling from health providers and personal spirituality helped caregivers to accept the child's status and cope with its implications. Most caregivers had high aspirations for the child's future, despite some expressed difficulties associated with care-giving, including financial constraints, information gaps and barriers to healthcare. The results indicate an opportunity for paediatric HIV screening in communities with high HIV prevalence. This would facilitate early uptake of available interventions, so enhancing the survival of HIV positive children. © 2009 Blackwell Publishing Ltd.