This paper based on findings from the KwaZulu-Natal Income Dynamics Study (KIDS) describes caregivers’ perspectives on providing care for HIV positive family members. The paper focuses on understanding what care provision means to family caregivers and in turn why they provide care. More centrally it highlights various aspects of the experience of providing care and the effects of care on caregivers’ lives.
The report finds that, the caregiver in most cases is female and related to the ill person –generally the mother of the ill person. This follows from clear and usually socially defined expectations around who should provide care. Caregiver’s reported that caring is stressful and physically, emotionally and socially taxing. Moreover, in households in which care takes place there is in most cases a lack of resources to provide appropriate care. Almost all caregivers indicate that they do not always know what to do to provide care. In addition most caregivers are frustrated by some aspect of care provision: a lack of resources to offer proper care or a lack of training in care provision. The report recommends increased support for caregivers, namely training in how to provide the highest quality care possible such as delivering palliative care. This should be provided by home-based care organisations and health workers such as community health workers and nurses through home visits. [adapted