Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a “Universal Test and Treat” approach in South Africa

ABSTRACT

South Africa currently sustains the largest antiretroviral treatment (ART) programme in the world. The number of people on ART is set to grow even more in the coming years as incidence remains stable, people on ART stay healthy, and guidelines for initiation become increasingly inclusive. The South African public health sector has increasingly relied on community- and home-based lay and professional “carers” to carry out the everyday tasks of rolling out the ART programme. Drawing on ethnographic research in one locality in the Western Cape, the paper explores the care practices of two such groups of carers implementing a ‘Universal Test and Treat’ (UTT) approach. The UTT approach being evlauated in this place is based on one model of the HIV treatment cascade, or care continuum, which focuses on the steps necessary to identify and link HIV-positive individuals to care and retain them in lifelong HIV treatment. In this context, community-based care workers are responsible for carrying out several discrete steps in the HIV care continuum, including testing people for HIV, linking HIV-positive individuals to care, and supporting adherence. In order to retain clients within the continuum, however, carers also perform other forms of labour that stretch their care work beyond more bounded notions of a stepwise progression of care. These broader forms of care, which can be material, emotional, social or physical in nature, appear alongside the more structured technical and biomedical tasks formally expected of carers. We argue that understanding the dynamics of these more distributed and relational forms of care is essential for the effective implementation of the care continuum, and of the UTT approach, in diverse contexts.

KEYWORDS:

• HIV
• treatment cascade
• care continuum
• community-based caregivers
• Universal Test and Treat
• emotional labour

Acknowledgments

We would like to thank the community HIV-care providers and community care workers who participated in the research. This research would not have been possible without the support of the social science research team at the Desmond Tutu TB Centre, particularly Graeme Hoddinott. Additionally, this paper has greatly benefited from the insights and comments of both Graeme Hoddinott and Professor Janet Seeley. The first author would also like to thank his colleagues, mentors and supervisors at Stellenbosch University, particularly Dr. Lindsey Reynolds and Mr. Jacob Du Plessis, who supervised this research. The project was generously supported by the Harry Crossley Foundation.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Dillon T. Wademan http://orcid.org/0000-0003-2222-7401