This study investigates the experiences of informal caregivers of people living with HIV in two semi-rural communities in South Africa. Ethnographic methods were used to collect and analyse data on the gendered nature and consequences of home-based care from 21 primary caregivers and 20 volunteer caregivers as well as 10 key informants. It was generally women who were poor, unemployed and unmarried who combined the care-giving role with their traditional role as homemaker and that of being the household head and breadwinner. The caregivers experienced physical strains and emotional problems, and were at elevated risk of being infected with HIV and TB. Men were largely absent in HIV/AIDS-affected homes and usually did not assist because of rigid gendered divisions of labour. Home-based care, by creating a disproportionate burden on women, is exacerbating existing gender inequities. It is argued that a thorough understanding of how home-based care undermines the physical health and psychological wellbeing of already vulnerable women is crucial for informing policies on home-based care. Thus, there is a need to incorporate gender perspectives when planning and implementing home-based care programmes.
Keywords: burden of care, family care, HIV/AIDS, home care, PLWHAs, primary care, volunteers
African Journal of AIDS Research 2006, 5(3): 237–247