Engaging people with lived experience on community advisory boards in community-based participatory research: a scoping review

Abstract

Community-based participatory research (CBPR) is a collaborative research process which engages researchers and community members as equals during all phases of a research project. This approach promotes social change and enhances the practical relevance of the research. One key tool in CBPR is the community advisory board (CAB), where individuals with lived experience and community organizations are integrated into the research process and align research with community priorities. This scoping review: (1) explores best practices for effective recruitment and engagement of people with lived experience (PWLE) on CABs; and (2) identifies the scope of literature on minimizing power dynamics between organizations and community members with lived experience who work on CABs together. A scoping review was conducted utilizing Embase, Medline and PsychINFO. Peer reviewed publications and grey literature published between Jan. 1, 1990, and Mar. 30, 2023, were considered. Two independent reviewers screened references in successive stages of title/abstract and full-text screening. Conflicts were resolved by consensus or a third reviewer. Selected studies were analyzed using a content analysis strategy with NVIVO software. 2346 peer-reviewed studies and 15 articles of grey literature were identified with initial search and 53 texts were included in final analysis. Three main themes were identified; recruitment of PWLE; engagement of PWLE; and navigating power dynamics of PWLE working alongside representatives of community organizations. Within recruitment, subthemes of CAB selection strategies, challenges, and successes were reported. Within engagement, subthemes of CAB management, CAB roles and activities, capacity strategies, challenges, successes, and compensation of members were reported. Lastly, within PWLE working alongside organizational representatives, subthemes of challenges and mitigation strategies were reported. We emphasize the importance of relationship building and mutual respect within the CAB; clearly defined roles and responsibilities to reduce role confusion and tokenism; appropriate compensation, whether monetary or otherwise, bi-directional capacity building; and the use of a cultural insider whilst establishing/operating a CAB. We identified key factors that contribute to the effective recruitment and engagement of PWLE on CABs in the context of CBPR. This scoping review, completed by a CBPR group, identified key factors that can be utilized by other CBPR groups to better engage PWLE on CABs. Further research is needed to demonstrate the proposed best practices’ influence on CAB effectiveness. This scoping review used the Arksey and O’Malley scoping review methodology, with the addition of Levac’s sixth stage of consultation, in consultation with I-CREAte’s own CAB. This work has been completed by a CBPR group, and informed by its CAB, thus grounding it in the needs of CBPR groups and PWLE engaging in research, to provide resources for groups who employ similar models. This scoping review is narrowed to the realms of social and health services, and the relevance to other domains is uncertain. This review was restricted to literature in English and French, thus may have excluded relevant research published in other languages. Despite all efforts to be thorough with identification of the literature, we may have missed relevant publications.

Topics & Concepts