The care offered to children living with HIV (CLHIV) experiencing HIV-related disability is often challenged by caregiver illness, poverty and poor support structures in and around communities. Since caregiver needs directly influences the care offered to CLHIV this paper aimed to explore the experiences of the caregivers of CLHIV in order to inform an appropriate rehabilitation model in South Africa. A qualitative enquiry using in-depth interviews with 14 caregivers (one male and thirteen females) of CLHIV experiencing disability in a peri-urban setting was conducted. Data were analysed using thematic analysis. Four themes emerged from the interviews: understanding of HIV-related disability and rehabilitation, challengers to care and well-being, enablers to care; and perceived needs of caregivers. The study revealed that caregiver burden is influenced by the availability of resources and social support services. Financial constraints, poor access to rehabilitation and reduced support networks challenged the care offered to CLHIV. The perceived needs of the caregivers in this study included appeals for improved social security, housing, accessible rehabilitation and education. Changes in government policy guiding social support, employment, education and rehabilitation interventions are needed to improve the availability of resources, education, health and well-being of CLHIV and their caregiver's in South Africa.
Keywords: HIV; caregiver; children; disability; impairments; rehabilitation.