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South Africa has one of the severest HIV epidemics in the world. Approximately 5.7 million South Africans are living with HIV. Simultaneously, public health sector resources are overstretched and home-based caregivers have taken on more responsibility for providing care. Gender inequities in South Africa lead to women and girls bearing the burden of the epidemic, including amongst the carers of people living with HIV (PLHIV). This study investigated the psychosocial impacts on caregivers of PLHIV at the household level with specific reference to gender, program, and policy implications.
Methods
Qualitative in-depth interviews were held with 45 household-based caregivers of PLHIV in Cape Town. Respondents were recruited using purposive and snowball sampling. Forty-three respondents were women. Interviews were conducted in isiXhosa, respondents’ first language. Data were analyzed using a grounded theory approach.
Results
Caregiving placed considerable demands on caregivers. Insufficient support, lack of income, dire poverty and having to care for other household members exacerbates the psychosocial impact. Caregiving impinged on employment and social life, and tended to impoverish life both emotionally and materially. Support from the health services was considered limited and the lack of communication between household-based caregivers and the health services heightened the load on the carer. Respondents who felt supported linked this to improved mental health status.
Discussion
Lack of support on diverse levels for the caregiver was often experienced as debilitating as the caring process. The invaluable work undertaken by household caregivers is unrecognized. Women form the bulk of caregivers and their supporters are also most likely to be other women or girls, and this has important gender implications. These issues need urgent attention at policy and program levels.