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

Thesis (MA)--Stellenbosch University, 2016.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 complex layers of healthcare, knowledge and authority. Thus, rather than seen simply as intermediaries, I argue that caregivers 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.AFRIKAANSE OPSOMMING: Die Suid-Afrikaanse regering se reaksie tot die MIV/VIGS epidemie het oor die afgelope dekade verander van 'n aanvanklike teenstrydige posisie tot die implementering van die grootste volhoubare antiretrovirale behandelingsprogram (ART) in die wêreld (Simelela & Venter, 2014). Met die nuutste aanbeveling van die Wêreldgesondheidsorganisasie om ART te inisieer vir alle mense wat met MIV/VIGS leef of wat as hoë risiko vir MIV infeksie beskou word (WHO, 2015), sal die getal mense wat in hierdie program inskakel oor die volgende paar jaar eksponensieël toeneem. 'n Belangrike en onvermydelike gevolg van hierdie verskuiwing in gesondheidsorgvoorsiening is die enorme implikasie hiervan op 'n alreeds wankelrige openbare gesondheidsorgsektor (Coovadia, Jewkes, Barron, Sanders & McIntyre, 2009). Om die groeiende druk op die gesondheidstelsel baas te raak, het die Suid-Afrikaanse openbare gesondheidsektor toenemend begin staatmaak op die toetrede van gemeenskaps- en tuisgebaseerde versorgers om die alledaagse taak van mense met MIV se toetrede en volhouding tot ART te bestuur. Ten spyte van hulle belangrike rol in die handhawing van die gesondheidssorgsisteem, is min navorsing gedoen oor die werklike praktyke en ervarings van gemeenskapsgesondheidswerkers in areas wat ondervoorsien is van bronne (Zulliger, Moshabela, & Schneider, 2014). In hierdie tesis word die versorgingspraktyke van twee sulke groepe van gemeenskaps- en tuisversorgers in een gebied in die Wes-Kaap, in oorweging gebring. Die eerste groep is gemeenskapsorgwerkers (CCWs) wat vir nie-regeringsorganisasies werk. Die tweede groep is gemeenskap MIV-versorging voorsieners (of CHiPs) wat werksaam is vir 'n bevolkingswye MIV behandelings- en voorkomingstudie, naamlik HPTN 071 (PopART). Daarbenewens gesels ek met MIV-positiewe individue, wat aan my bekendgestel is deur die versorgers, om kwessies rakende toegang tot en die voorsiening van gesondheidsorg aan te spreek. In hierdie konteks, is CCWs verantwoordelik vir die voorsiening van behandeling en psigososiale ondersteuning sodra hulle met ART begin het. Aan die anderkant, is CHiPs verantwoordelik vir 'n verskeidenheid van MIV behandeling- en voorkomingspraktyke, insluitend deur-tot-deur vrywillige MIV-berading en toetsing. Die PopART studie-protokol beskryf die CHiPs se werk as die lewering van 'n “‘beste praktyk’ openbare gesondheid intervensie” en wys uit dat hulle werk “losstaande [moet wees] tot die ‘navorsingspanne’” wat in diens geneem word deur die studie (Hayes & Fidler, 2012:33). Alhoewel, terselfdetyd as om kliënte met gesondheidssorg te verskaf, moet beide CCWs en CHiPs ook sekere bewyse van hulle versorging lewer. Om versorging sowel as bewyse te produseer, behels dikwels dat versorgers protokolle en standaard operasionele prosedures aanpas om hierby ‘uit te kom’ (Livingston, 2012), om sodoende aan hulle kliënt se gesondheidsbehoeftes te voorsien. Boonop behels alledaagse gesondheidswerk die vertaling en onderhandeling tussen uiteenlopende en oorvleulende wyses van gesondheidssorg en genesing. Hierdie tesis stel ondersoek in oor hoe versorgers hulle intieme kennis van die uitdagings wat hul kliënte in die gesig staar gebruik om hulle te help om die komplekse lae van gesondheidsorg, kennis en outoriteit te navigeer. Eerder as om gesien te word as blote tussengangers, is my argument dat die versorgingsvoorsieners gesien moet word as ‘lewend in vertaling’, soos wat hulle deel uitmaak van die alledaagse lewe van hul kliënte en poog om die losstaande aspekte van gesondheidsorg implementering in hulpbronbeperkte kontekste bymekaar uit te bring