Working towards the Active Participation of Underrepresented Populations in Research: A Scoping Review and Thematic Synthesis

Abstract

Research has historically focussed on participants who are relatively easy to access; those who have resources (time and literacy) to respond to surveys, who can travel, and are socially connected. Failure to meaningfully engage with intended participants and achieve representativeness in participation risks diminishing the applicability and impact of research findings to local contexts. Motivated by goals of social justice and health equity, this scoping review sought to identify strategies to effectively engage and integrate the “authentic voice” of populations that are described as vulnerable or precarious and therefore perceived as “hard-to-reach.” A system tic search strategy identified 34 eligible papers. Articles underwent (i) a title and abstract screening by two reviewers, followed by (ii) a full text review of eligible articles by one author. Free-form research problem mind-mapping was applied to facilitate analysis and generate creative associations between ideas. Thematic and content analysis was then applied to generate themes and subthemes. Four high-level themes emerged: key players, trust and rapport, navigating structural precarity, and moving beyond “participation.” We identified that substantial shifts in researcher mindsets are required to reframe perceptions of vulnerability and move towards strengths-based approaches. Efforts need to be directed towards establishing deep trust and rapport through early engagement and social reciprocity. Systemic barriers to research participation and partnership must be addressed to overcome issues of structural precarity. We urge researchers and practitioners to embrace “scholar activism” and to actively dismantle the precarity that limits active “participation” and to build deliberate strategies to create forums where the “authentic” voice can be amplified.