“Spreading the word” – Examining the dynamics of community engagement in HIV vaccine research at an HIV prevention research centre in the Western Cape South Africa

Lesch, Anthea M. (2017-03)

Thesis (PhD)--Stellenbosch University, 2016.

Thesis

ENGLISH ABSTRACT: Community engagement in HIV vaccine research is a complex phenomenon and is articulated as a crucial part of HIV vaccine research. In spite of this, there is a dearth of literature that focusses on community engagement in HIV vaccine research. While there is much social science literature that focusses on the operational and ethical aspects of HIV vaccine research, there is little research that explores the process of community engagement. In order to contribute to understanding community engagement in context, the purpose of my research was to document and explore the dynamics of the current practice of community engagement at an HIV prevention research centre, Research Centre X in the Western Cape, South Africa. Located within a community mobilization approach, the research used the conceptual framework of the symbolic, relational and material contexts as the lens for exploring experiences of research participation and the dynamics of the current community engagement process at Research Centre X. The study applied a qualitative approach to address the research question and used focus group discussions and key informant interviews to access the perspectives of three key stakeholders who form part of the community engagement process at Research Centre X. Research participants were selected using a purposive sampling technique and included current HIV vaccine trial participants, CAB members who represent the interest of community members in the community engagement process and staff members at Research Centre X who implement community engagement activities. The data were analysed using the thematic analysis approach outlined by Braun and Clarke (2006). Ethical approval for the conduct of the study was provided by Ethics Review Committees at Stellenbosch University and the University of Cape Town. In the symbolic context, the findings highlight fear and avoidance of HIV/AIDS and HIV/AIDS stigma in the research setting. HVT participants reported that myths, beliefs and rumours about the HIV vaccine research being conducted at Research Centre X circulate, inhibiting attempts to promote participation in the research and community engagement activities at Research Centre X. In the relational context, the findings reveal that community outreach workers engage in a narrow set of practices in their community engagement activities, generating a set of relational resources to support their activities. Their activities focus primarily on “spreading the word”, in other words disseminating HIV vaccine research information in the community setting with a view to meeting participant recruitment targets set by researchers and trial sponsors. The relational context of community engagement in HIV vaccine research at Research Centre X, therefore, offers limited roles for community and CAB members in the process. The material context of community engagement in HIV vaccine research is one that highlights contradictory perspectives on the extent to which it promotes empowerment among HVT participants and CAB members. My research findings highlight the complexities that accompany efforts to promote community engagement in HIV vaccine research in resource-poor settings and generates recommendations for transforming the HVT context and reframing community engagement process in the research setting.

AFRIKAANSE OPSOMMING: Gemeenskapsbetrokkenheid by MIV-entstofnavorsing is ’n komplekse saak wat ’n kritieke deel vorm van MIV-entstofnavorsing. Ten spyte hiervan is daar ’n gebrek aan navorsing wat fokus op gemeenskapsbetrokkenheid by MIV-entstofnavorsing. Daar is heelwat sosiaal wetenskaplike literatuur wat fokus op die bedryfs- en etiese aspekte van MIV entstofnavorsing, maar daar is baie min wat die proses van gemeenskapsbetrokkenheid ondersoek. Ten einde gemeenskapsbetrokkenheid binne so ’n konteks te verstaan, was die doel van hierdie navorsing om die dinamiek van die huidige praktyk van gemeenskapsbetrokkenheid by ’n MIV-voorkomingsnavorsingsentrum, Navorsingsentrum X in die Wes-Kaap, Suid-Afrika, te ondersoek en te dokumenteer. Die navorsing is geposisioneer binne ’n gemeenskapsmobiliseringsbenadering en het die konsepsuele raamwerk van die simboliese, relasionele en materiële kontekste gebruik as die lens waardeur die ervaring van navorsingsbetrokkenheid en die dinamiek van die huidige gemeenskapsbetrokkenheidproses by Navorsingsentrum X ondersoek is. Ek het van ’n kwalitatiewe benadering gebruik gemaak om die navorsingsvraag te beantwoord en het fokusgroepe gehou en onderhoude gevoer met sleutel informante om die perspektiewe van drie sleutelrolspelers wat deel vorm van die gemeenskapsbetrokkenheid by Navorsingsentrum X, te ondersoek. Navorsingsdeelnemers is deur middel van ’n doelgerigte steekproefnemingstegniek geïdentifiseer en het huidige MIV-enstofproefdeelnemers, GAR lede (Gemeenskapsadviesraad) wat die belange van die gemeenskapslede verteenwoordig in die gemeenskapsbetrokkenheidproses, en personeel by Navorsingsentrum X wat die gemeenskapsbetrokkenheidaktiwiteite implementeer, ingesluit. Die studiedata is geanaliseer met behulp van ’n tematiese analisebenadering soos uiteengesit deur Braun en Clarke (2006). Die navorsingsetiekkomitees van die Universiteit van Stellenbosch en die Universiteit van Kaapstad het die navorsing goedgekeur. In die simboliese konteks wys die bevindinge dat daar vrese en vermyding van MIV/Vigs en MIV/Vigs-stigma binne die navorsingsomgewing is. MIV-entstofproefdeelnemers het aangedui dat mites, oortuigings en gerugte oor die MIV-entstofnavorsing by Navorsingsentrum X die rondte doen, en dit verhinder die bevordering van deelname in die navorsing en gemeenskapsbetrokkenheidsaktiwiteite by Navorsingsentrum X. In die relasionele konteks toon die bevindinge dat gemeenskapsuitreikwerkers gebruik maak van ’n baie nou stel praktyke as deel van hulle gemeenskapsbetrokkenheidaktiwiteite en hulle sodoende ’n stel relasionele hulpbronne bymekaarmaak om hulle aktiwiteite te ondersteun. Hulle aktiwiteite fokus primêr daarop om die “woord te versprei”, dit wil sê om inligting oor MIV-entstofnavorsing in die gemeenskap bekend te maak om so die deelnemerwerwingsteikens wat die navorsings en proefborge stel, te bereik. Die relasionele konteks van gemeenskapsbetrokkenheid by MIV-entstofnavorsing by Navorsingsentrum X bied dus beperkte geleentheid vir die gemeenskap en gemeenskapsadviesraadslede om betrokke te wees. Die materiële konteks van gemeenskapsbetrokkenheid by MIV entstofnavorsing beklemtoon die teenstrydige perspektiewe oor die mate waartoe die navorsing die MIV-entstofnavorsingsdeelnemers en gemeenskapsadviesraadslede bemagtig. Die navorsingsbevindinge belig die kompleksiteit van die pogings om gemeenskapsbetrokkenheid by MIV-entstofnavorsing te bevorder in hulpbron-arme omgewings en gee aanbevelings vir die transformasie van die MIV-entstofnavorsingskonteks en vir die herinkleding van gemeenskapsbetrokkenheidprosesse binne die navorsingsomgewing.

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