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.

A design thinking‐led approach to develop a responsive feeding intervention for Australian families vulnerable to food insecurity: Eat, Learn, Grow

“…Design thinking offers value when engaging with underserved populations and disadvantaged communities 32 . Efforts should be directed toward establishing deep trust and rapport through engagement, particularly those in underrepresented groups, to ensure the applicability and impact of research findings and end products 61 . Design thinking may help address this by recognizing the inherent knowledge base of end‐user groups 62 .…”

“…This pushed recruitment outside the original scope to be Australia‐wide, resulting in the developed programme having applications in the broader Australian context. Remote methods also benefited participants by removing barriers to research participation among disadvantaged groups, 61 including time, travel, caregiving, and work responsibilities. Remote research methods can increase anonymity and safety, breaking down power discrepancies between researchers and community participants from underrepresented groups 52 .…”

“…This pushed recruitment outside the original scope to be Australia-wide, resulting in the developed programme having applications in the broader Australian context. Remote methods also benefited participants by removing barriers to research participation among disadvantaged groups, 61 including time, travel, caregiving, and work responsibilities.…”

“…32 Efforts should be directed toward establishing deep trust and rapport through engagement, particularly those in underrepresented groups, to ensure the applicability and impact of research findings and end products. 61 Design thinking may help address this by recognizing the inherent knowledge base of end-user groups. 62 A design thinking framework allows for the integration of co-design at meaningful points.…”

Re-membering the dismembered in university 'politics of process': Strategies for women's empowerment and inclusivity in academic leadership

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