Caregivers, care work and the limits of healthcare : an ethnographic exploration into practices of community-based HIV prevention, treatment and care in a resource-limited setting in South Africa

by Dillon Timothy Wademan

Institution: Stellenbosch University
Year: 2016
Keywords: Community-based HIV prevention treatment and care, care-givers, care work, resource-limited setting; UCTD; Community health aides  – South Africa  – Western Cape; Community health services  – South Africa  – Western Cape; Medically underserved areas  – South Africa  – Western Cape; HIV positive persons  – Care  – South Africa  – Western Cape; HIV infections  – Treatment  – South Africa  – Western Cape
Posted: 02/05/2017
Record ID: 2063594
Full text PDF: http://hdl.handle.net/10019.1/98449


ENGLISH ABSTRACT: In just over a decade the South African government's response to the HIV/AIDS epidemic has gone from a position that could be described as adversarial to rolling out and sustaining the largest antiretroviral treatment (ART) programme in the world (Simelela & Venter, 2014). With the latest recommendations from international organisations supporting immediate ART initiation for all people living with HIV/AIDS and ART for people at high risk for HIV infection (WHO, 2015), the number of people to be incorporated into the programme is likely to grow exponentially. One unfortunate effect of these shifts in healthcare provision is the enormous strain it places on an already ailing public health sector (Coovadia, Jewkes, Barron, Sanders & McIntyre, 2009). In order to cope with the growing pressures on the health system, the South African public health sector has increasingly relied on community- and home-based carers to carry out the everyday tasks of managing HIV-infected people's initiation on and adherence to ART. Despite their essential role in sustaining the health care system, little research has been done on the actual practices and experiences of community care workers in resource-poor settings (Zulliger, Moshabela, & Schneider, 2014). In this thesis I explore the care practices of two such groups of community- and home-based carers in one locality in the Western Cape. The first group are community care workers (CCWs) who work for non-governmental organisations in partnership with the public health sector. The second group, community HIV-care providers (or CHiPs), work for a population-based HIV treatment and prevention trial called HPTN 071 (or PopART). In addition, I engage with HIV-positive individuals introduced to me by the caregivers to draw out issues surrounding access to and provision of healthcare. In this context, CCWs are responsible for providing HIV-infected community members with treatment adherence and psychosocial support only once they have initiated ART. The CHiPs, on the other hand, are responsible for a range of HIV treatment and prevention practices including door-todoor voluntary HIV-counselling and testing. The PopART trial protocol describes the CHiPs’ work as delivering a “‘best practice’ public health intervention” and points out that their work should be “separate from the ‘research teams’” employed by the trial (Hayes & Fidler, 2012:33). However, at the same time as providing their clients with healthcare, both CCWs and CHiPs must also produce certain kinds of evidence of their care. Providing care while producing evidence often requires caregivers to adapt protocols and standard operating procedures, to ‘make do’ (Livingston, 2012), in order to meet their client’s healthcare needs. Further, everyday care work entails translating and negotiating between divergent and overlapping modes of healthcare and healing. This thesis explores how caregivers use their intimate knowledge of the challenges their clients face to help them navigate these… Advisors/Committee Members: Reynolds, Lindsey, Du Plessis, Jacob, Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Sociology and Social Anthropology..