Part 3: The use of key concepts in the research

This research examines the local community context of community engagement in HIV vaccine research (Slevin, Ukpong, & Heise, 2008) in one resource-poor community where the risk of HIV infection is high. As indicated in Chapter 2, HIV vaccine research is a global enterprise and involves multiple levels of stakeholders, ranging from the global to the local (Newman et al., 2015; UNAIDS-AVAC, 2011). Though much of the discourse around HIV research is global and couched in dominant scientific and biomedical terms, HIV vaccine research is implemented at the local community level. Community engagement to promote research participation takes place at the local community level. It enters the everyday lives and realities of those who reside in these communities and who are targets for HIV vaccine research and related activities. These key participants who are the objects and potential beneficiaries of research may have little direct involvement with the language and discourses of global biomedicine, but are profoundly affected by them. They contribute to the refraction of dominant global ideas through local experience. By far the bulk of the available literature on community engagement, furthermore, provides insight into notions of community

engagement from the perspective of those who implement trials: researchers, funders, international health organizations and advocacy organizations. These stakeholders articulate their perspectives on what community engagement entails, who it should involve, and the activities that form part of community engagement to generate community support, buy-in and participation in the research. This literature does not and cannot incorporate local community members’ perspectives such as those who are tasked with implementing community engagement, community members who participate in HVTs and those who represent the interests of the community in the research on their experiences of community

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engagement. It is not possible to have global guidelines that incorporate the views of every community or person who will be the object of those guidelines. This level of generality is unavoidable in global guidelines, but has consequences. Where community stakeholder perspectives are accessed in compliance with global guidelines, the focus is primarily on generating community input and experiences of community engagement guideline

implementation, rather than on accessing the nuance of local experiences and perceptions of community engagement and research participation (e.g., Newman et al., 2015). My research, therefore, seeks to access the stories of these local community level stakeholders to document their experiences and perspectives on HIV vaccine research, research participation and community engagement as it is practised in the research setting.

The concept of community is central to my research, directing both its focus and theoretical conceptualization. The notion of community and who constitutes the community as the target of research or intervention is the subject of much contention and debate. In South Africa, as elsewhere, the use of the term community is political, bearing the history of Apartheid oppression and discrimination that created the structural inequalities that endure and influence the health and well-being of its poorest citizens. Under Apartheid, the term community was used to promote the separation of people by race and as a euphemism to refer to Black communities (Yen, 2007). In this context the term community, therefore, evokes images of racial oppression, discrimination and unequal access to resources that promote health and well-being.

In global health research, the use of the term community and the task of identifying who constitutes the community is no less challenging. According to Lavery et al. (2010), identifying the relevant community and those who represent its interests is one of the greatest challenges facing biomedical researchers. The process of identifying the community and its relevant community stakeholders serves as the foundation of the community engagement

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process, defining the target for and focus of engagement, outlining with whom community- researcher partnerships must be built and who researchers must collaborate with throughout the execution of the research (HANC, 2014; Slevin et al., 2008).

The available guidelines on community engagement in biomedical HIV prevention provide varying input on how to define and identify the community in clinical trial

implementation. There are also diverging perspectives on what constitutes community and the role that communities should play in the research process (HANC, 2014) among those who implement clinical trials in community settings. There is agreement on the fact that community represents the target for and hosts of HVTs. However, the notion of community is defined in various ways. Firstly, mirroring the predominant definition of community in health research and interventions, the notion of community in biomedical HIV prevention has tended to be defined in terms of the geographical boundaries within which the research takes place. Such definitions define community as referring to trial participants, their families and partners, other local stakeholders, service providers, NGOs, CBOs and community structures, organizations and representation structures that operate within the geographic boundaries of the trial location (HANC, 2014; Nakibinge et al., 2009; Slevin et al., 2008). Secondly, community is also defined as sub-groups at risk of HIV infection, in other words the

population in and for which the research is being conducted. These definitions conceptualize community as those high HIV risk sub-groups who are targeted for their participation in the research, including MSM and sex workers (Forbes et al., 2008).

Third, there are also stakeholder-based definitions of community that incorporate multiple features of community into their conceptualization of community. In 2001, MacQueen et al. published one such definition as a result of their attempts to develop an evidence-based definition of community from the perspective of various stakeholders involved in HIV vaccine research in the USA. Their research generated a definition of

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community that defines it as a group of people with diverse characteristics who are linked by social ties, share common perspectives and engage in joint action in geographical locations or settings (MacQueen, 2001). This definition departs from previous narrow and one-

dimensional conceptualizations of community. It acknowledges that communities are dynamic, fluid and made up of individuals and groups with diverse characteristics. It also considers the fact that communities may not be pre-existing and homogeneous entities as implied by for instance geographical and risk sub-group definitions, but may take shape in response to particular issues of common concern and interest (Lavery et al., 2010). Building on this definition, the GPP guidelines also bases its conceptualization of community on a stakeholder perspective. Within this approach, stakeholder refers to any individual or collection of individuals who have a stake in biomedical HIV prevention trials (UNAIDS- AVAC, 2011). Their GPP model describes layers of stakeholders, including trial participants, individuals or groups who represent the interests of those who may be recruited or participate in HVTs and others locally affected by the trial.

In spite of these definitions that acknowledge that communities are diverse and dynamic systems made up of multiple levels of stakeholders, in the context in which I conducted my research, community is defined in geographic terms by stakeholders involved in the process. The community in which Research Centre X is located was chosen as the setting for their research because of the high HIV prevalence and HIV risk recorded in this geographical area. The location of Research Centre X in this setting provides it with access to HIV negative individuals at high risk of HIV infection who may be willing to participate in HIV vaccine and other biomedical HIV prevention research studies being conducted. The community targeted by Research Centre X includes those lay community members, HVT participants, community organizations and representatives who reside in the geographical area where it is located. Community engagement at Research Centre X targets lay community

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members, HVTs participants and members of the CAB. Given my research focus on exploring the dynamics of research participation and the current process of community engagement at Research Centre X, therefore, my research focussed on the community as defined within the research setting. I acknowledge the limitations of adopting this approach and reflect on this, discussing the impact of this narrow conceptualization of community on the community engagement process, in the concluding chapter.

3.4. The participation continuum – moving from community participation to