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

[摘要] ENGLISH ABSTRACT: In just over a decade the South African government's response to the HIV/AIDS epidemic hasgone from a position that could be described as adversarial to rolling out and sustaining the largestantiretroviral treatment (ART) programme in the world (Simelela & Venter, 2014). With the latestrecommendations from international organisations supporting immediate ART initiation for allpeople living with HIV/AIDS and ART for people at high risk for HIV infection (WHO, 2015), thenumber of people to be incorporated into the programme is likely to grow exponentially. Oneunfortunate effect of these shifts in healthcare provision is the enormous strain it places on an alreadyailing 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 healthsector has increasingly relied on community- and home-based carers to carry out the everyday tasksof managing HIV-infected people's initiation on and adherence to ART. Despite their essential rolein sustaining the health care system, little research has been done on the actual practices andexperiences 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-basedcarers in one locality in the Western Cape. The first group are community care workers (CCWs) whowork for non-governmental organisations in partnership with the public health sector. The secondgroup, community HIV-care providers (or CHiPs), work for a population-based HIV treatment andprevention trial called HPTN 071 (or PopART). In addition, I engage with HIV-positive individualsintroduced to me by the caregivers to draw out issues surrounding access to and provision ofhealthcare.In this context, CCWs are responsible for providing HIV-infected community members withtreatment adherence and psychosocial support only once they have initiated ART. The CHiPs, on theother hand, are responsible for a range of HIV treatment and prevention practices including door-todoorvoluntary HIV-counselling and testing. The PopART trial protocol describes the CHiPs' workas 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, atthe same time as providing their clients with healthcare, both CCWs and CHiPs must also producecertain kinds of evidence of their care.Providing care while producing evidence often requires caregivers to adapt protocols andstandard operating procedures, to 'make do' (Livingston, 2012), in order to meet their client'shealthcare needs. Further, everyday care work entails translating and negotiating between divergentand overlapping modes of healthcare and healing. This thesis explores how caregivers use theirintimate knowledge of the challenges their clients face to help them navigate these complex layers ofhealthcare, knowledge and authority. Thus, rather than seen simply as intermediaries, I argue thatcaregivers should be seen as living in translation, as entangled in the everyday lives of their clients,tying together the loose ends of healthcare implementation in a resource limited setting.

[发布机构] Stellenbosch University