Children living with HIV-related disabilities in a resource-poor community in South Africa: caregiver perceptions of caring and rehabilitation

ABSTRACT

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
• children
• impairments
• disability
• rehabilitation
• caregiver

Acknowledgements

The selfless caregivers of children living with HIV who participated in the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Stacy Maddocks http://orcid.org/0000-0003-2306-7681

Jill Hanass-Hancock http://orcid.org/0000-0003-3662-8548

Verusia Chetty http://orcid.org/0000-0003-2934-8687

Additional information

Funding

Research reported in this study was supported by the South African Medical Research Council under a Self-Initiated Research Grant. The views and opinions expressed are those of the author(s) and do not necessarily represent the official views of the SAMRC as well as funding from the University of Kwazulu-Natal’s Developing Research Innovation, Localization and Leadership in South Africa (DRILL) program. This program is funded by the Fogarty International Center of the National Institutes of Health under Award Number D43TW010131. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.