Perceptions of care and rehabilitation for children living with HIV in KwaZulu-Natal province, South Africa

ABSTRACT

Rehabilitation offered to children living with HIV (CLHIV) experiencing disabilities can address participation restrictions and improve their quality of life and day-to-day community and school engagement. This study aimed to explore the perceptions and insights of healthcare professionals and other key stakeholders, such as community care workers, educators and social workers on the care offered to CLHIV experiencing disabilities in a semi-rural context in South Africa in order to inform and improve the rehabilitation framework. Focus group discussions and semi-structured interviews were used to gather information on the experiences of 15 purposively selected participants involved in the rehabilitative care of CLHIV. Three major themes emerged from the data: perceptions of HIV-related disability, current barriers to care and the proposed shift in care. Participants understood the biopsychosocial viewpoint of disability experienced by CLHIV. Barriers to care of the children included stigma and denial of HIV infection by carers, as well as poor multi-disciplinary team functioning. Participants reported that the ongoing education of healthcare workers, educators and carers as well as a task-shifting approach to care, training lay community members to conduct basic disability screening and referral could improve rehabilitative care for CLHIV.

KEYWORDS:

• HIV
• children
• disability
• rehabilitation
• South Africa

Clinical considerations

• In the context of HIV-related disability and rehabilitation it is clear that a multi- disciplinary team approach in achieving optimal participatory rehabilitation goals is essential for CLHIV.

• Although HIV-related disability awareness is gaining attention, efforts by healthcare workers to provide comprehensive, widespread, accessible services are still unmet in South Africa.

• A task-shifting approach by training lay personnel on basic assessment and rehabilitation of CLHIV was seen as an enabler to improved rehabilitative care.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the University of Kwazulu-Natal’s Developing Research Innovation, Localization and Leadership in South Africa (DRILL) program Fogarty International Center of the National Institutes of Health [D43TW010131]; South African Medical Research Council [Self-initiated Research Grant].