Using Community-Based Participatory Research Approaches in HIV
Three Case Studies
MARA BIRD, PHD, BRITT RIoS-ELLIS, PHD, JASoN GLoBERMAN, MSC, DAVID G o G o LIS H VI LI, MPH, ALICE WELBoURN, PHD, ULRIKE BRIZAY, PHD, LINA GoLoB, MSC, SHIRIN HEIDARI, PHD,
AND SEAN B. RoURKE, PHD, FCAHS
Communities have consistently played critical roles in responding to the human immunodeficiency virus (HIV) epidemic, and community-academic partnerships have gained increasing prominence in HIV research. The number of studies that included community participation in the field of HIV research increased substantially between 1991 and 2012, and the terms used to describe these activities have changed, moving away from “action research” (AR) to “participatory action research” (PAR), “community-based research” (CBR), and “community-based participatory research” (CBPR), with the latter being the most commonly used term, based on English-language articles indexed in PubMed.1
The terms CBR and CBPR are often used interchangeably, with early work of Israel et al. providing a working template and definition for the core dimensions of community-based research:
CBR in public health is a collaborative approach to research that equitably involves all partners (for example, community members, organizational representatives, and researchers) in all aspects of the research process.
The partners contribute unique strengths and shared responsibilities to enhance understanding of a given phenomenon and the social and cultural dynamics of the community, and integrate the knowledge gained with action to improve the health and well-being of community members.2, p. 177
The results of a literature review assessing community-academic partnerships in HIV research conducted by Brizay et al. found a variety of approaches to community participation with differences in theory and practice. Some articles discussed the involvement of community in all phases of the research process as central, while others emphasized community involvement in specific research tasks such as recruitment, data collection, intervention development, and/or interpretation of results. Furthermore, although historically researchers have largely been external to their respective communities of focus, an increasingly diverse research workforce is beginning to generate researchers who are part of and present within their communities of focus. In practice, research that involves community in all phases of the research still remains the exception. Based on the various descriptions of community participation identified through this literature review, the authors examined key phases in the research process that could act as building blocks when engaging in community-academic partnerships (Figure 15.1).
Three case studies highlighting effective community-academic research partnerships in HIV are presented here. These examples demonstrate the impact that community-academic partnerships can have specific to the three phases of research highlighted below. While CBPR often focuses on the local level, it is also useful to the broader contexts in which we live and relate. Three cases were
Figure 15.1 Phases of community-academic partnerships. Adapted from Brizay, U., Golob,
L., Globerman, J., et al. “Community-Academic Partnerships in HIV-Related Research: A Systematic Literature Review of Theory and Practice.” Journal of the International AIDS Society 18.1 (2015).
selected to illustrate the heterogeneity that exists in CBPR, including differing levels of analysis from local to provincial to international activities. The first study focuses on the province of Ontario, Canada; the second highlights the southwest US-Mexico border region; and the third shows how CBPR was implemented at an international level. Each case study describes the contexts of the research including community visions and need, the process by which the community was engaged in the research, and the value added through community-academic partnerships.