Paper short abstract:

Stigma and isolation are common barriers to care for adolescents living with HIV and require understanding care beyond biomedical healthcare. We use participatory spatial research to draw out the spaces, systems and practices of care adolescents in Urban South Africa employ while living with HIV.

Paper long abstract:

In this paper, we make the case for broader conceptions of 'care' in supporting the wellbeing of adolescents living with HIV in urban South Africa. Arguably, the ability to live healthily and happily with HIV is driven by a system of social, political, environmental, psychological and economic challenges, suggesting approaches to care should go beyond biomedical treatment. We focus on adolescents in this context because of their vulnerability (facing a high burden of illness and associated high levels of stigma) and because of their creativity in shaping solutions.

Through long-term engagement and participatory spatial research with the adolescent mentors of the Khuluma project (an anonymous peer-to-peer text message support system for adolescents undergoing HIV treatment), we developed insights on their experiences and spatial practices of care. This project has cultivated a virtual space of care, a social space free of stigma, addressing feelings of isolation associated with living with HIV. The concept of spaces and systems of care arose from the findings that the formal healthcare system is a source of negative feelings, a lack of care. We found that 'spaces of care' are cultivated through use, and the spaces adolescents seek out are not dictated only by physical design properties. Spaces of support, privacy, connection, creativity, empowerment and freedom are spaces of care, relying on a conceptualisation of care as a social, creative and spatial practice. Through these findings we expand on what a system of health and care means for adolescents living with HIV in urban/semi-urban settings.