"When I was no longer able to see and walk, that is when I was affected most": experiences of disability in people living with HIV in South Africa

Purpose: HIV-related disability is an emerging issue in countries where HIV is endemic. This study aimed to understand experiences of disability in patients living with HIV in South Africa using the International Classification of Functioning, Disability and Health (ICF) as a guiding framework.

Methods: In-depth interviews were conducted with 19 HIV-positive people receiving ART through a public hospital in KwaZulu-Natal. Data were analyzed using collaborative qualitative content analysis.

Results: Participants described a variety of impairments related to mental, sensory, neuromusculoskeletal, skin, cardiovascular, digestive or reproductive systems. A tenuous relationship was evident between HIV and mental health impairments and the experience of other disabilities. Impairments affected participants' activity levels, especially mobility, domestic life, self-care and ability to work. Activity limitations affecting livelihood were often of more concern to participants than the impairments. Furthermore, women and men appeared to experience disability related to activities relevant to gendered norms in their cultural context.

Conclusions: More understanding of the intersections among HIV, disability, gender and livelihood is needed. To respond to the increased need to manage disability within HIV care in Africa, HIV programs should include rehabilitative approaches, address concerns related to livelihoods in households with disability and consider gender differences in the experience of disability.

Implications for rehabilitation: HIV, its opportunistic infections and the treatments associated to them are related to health conditions and impairments that have the potential to develop into disability. Rehabilitation professionals in HIV endemic countries have therefore a larger and changing number of people living with HIV and need to consider the impact of the disease on the rehabilitation process. Mental health issues and disability might be interrelated and affect antiretroviral treatment (ART) adherence. Hence, rehabilitation has to use a holistic approach and integrate different therapy approaches (e.g. physiotherapy and mental health). The experience of living with HIV and developing disability has unreflected gender dynamics that need to be considered in rehabilitative care. Hence, the rehabilitation process has to consider the cultural realities and gendered experience of the condition. The study highlights the interrelationship between disability levels, the influence of environmental and social factors, and the changing experience related to gender. Hence, rehabilitation professionals in resource-poor settings have to go beyond the clinical response and therapy approaches in order to improve the activity and participation of people with disabilities and those living with HIV in their homes and communities. Community or home-based care might be avenues to further explore.