Abstract
A fundamental feature of community-based participatory research (CBPR) is sharing findings with community members and engaging community partners in the dissemination process. To be truly collaborative, dissemination should involve community members in a two-way dialogue about new research findings. Yet little literature describes how to engage communities in dialogue about research findings, especially with historically marginalized communities where mistrust of researchers may exist because of past or present social injustices. Through a series of interactive community presentations on findings from a longitudinal study, we developed a process for community dissemination that involved several overlapping phases: planning, outreach, content development, interactive presentations, and follow-up. Through this process, we built on existing and new community relationships. Following each interactive presentation, the research team debriefed and reviewed notes to identify lessons learned from the process. Key themes included the importance of creating a flexible dissemination plan, tailoring presentations to each community group, establishing a point person to serve as a community liaison, and continuing dialogue with community members after the presentations. Core strategies for developing trust during dissemination included engaging community members at every step, reserving ample time for discussion during presentations, building rapport by sharing personal experiences, being receptive to and learning from criticism, and implementing input from community members. This process led to a deeper understanding of research findings and ensured that results reached community members who were invested in them.
Highlights
Sharing research findings with community members is a vital component of community-based participatory research (CBPR) for several reasons [1,2]
Research has identified culturally specific determinants of treatment adherence among black people living with human immunodeficiency virus (HIV) [10,11,12,13], interventions to improve adherence have rarely been tailored for this population; this lack of tailoring may account for the comparatively weak effects found in adherence intervention trials that have a substantial number of black participants [14,15,16]
The study was based on CBPR principles and conducted in partnership with AIDS Project Los Angeles (APLA), a large community-based organization (CBO) with an on-site co-investigator (M.G.M.) and an inhouse research program with a community advisory board (CAB)
Summary
Sharing research findings with community members is a vital component of community-based participatory research (CBPR) for several reasons [1,2]. Involving community members in discussions about new findings is crucial for addressing health disparities. Unless health care providers and other community members are engaged in collaborative partnerships to generate insights about research findings, opportunities to render interventions responsive to culturally specific determinants may be missed. Apart from brief allusions to workshops with community members [3,18,19], scant literature examines how to implement community dissemination as a two-way dialogue or address its challenges, which may include translating research terminology into lay language [20], and — when findings focus on historically marginalized communities — how to discuss research in ways that are sensitive to mistrust and concerns about being stigmatized [21,22,23]. We discuss strategies for facilitating two-way dialogue and developing trust with communities to strengthen partnerships, gain a better understanding of findings, and explore implications for culturally relevant interventions and public policy
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