Community-based participatory research in complex settings: clean mind-dirty hands

Abstract

SUMMARYDespite the abundance of the literature which discusses factors supporting or inhibiting effective participation of community members in community-based research, there is a paucity of publications analysing challenges to participation in complex settings. This manuscript describes an intervention built on researcher-community partnership amid complex social conditions which challenged participation of community members at different stages of the research process. The research took place in a Palestinian refugee camp in Beirut, Lebanon and 1 of 12 in Lebanon which suffer from deteriorating social, economic and physical conditions perpetuated by state-imposed restrictions. The research team developed a community coalition which was involved in all stages of planning, designing, implementation and dissemination. In all those stages the aim was to maintain rigorous research, to follow a 'clean mind' approach to research, but maintain principles of community participation which necessitate 'a dirty hand'. Despite commitment to the principles of community-based participatory research, participation of community members (including youth, parents and teachers) was affected to a great extent by the social, physical and structural conditions of the community context. Characteristics of the context where research is conducted and how it affects community members should not be overlooked since multiple factors beyond the researchers' control could interfere with the rigour of scientific research. Researchers need to develop a plan for participation with the community from the beginning with an understanding of the community forces that affect meaningful participation and address possible deterrence.

Strategies to Build Trust and Recruit African American and Latino Community Residents for Health Research: A Cohort Study

“…A PubMed computerized database search of published medical and social research on recruitment and retention of minorities from 2000 to 2012 generated 22 articles using the following MeSH terms: clinical trials, medical research, community, minorities, AA, Latino, Hispanic, participation, recruitment, retention, and research subjects . Included articles evaluated recruitment and/or retention strategies as a major study objective.…”

“…A PubMed computerized database search of published medical and social research on recruitment and retention of minorities from 2000 to 2012 generated 22 articles using the following MeSH terms: clinical trials, medical research, community, minorities, AA, Latino, Hispanic, participation, recruitment, retention, and research subjects. 1,2,10,11,15,[18][19][20][21][25][26][27][28][32][33][34][35][36][37][38][39][40] Included articles evaluated recruitment and/or retention strategies as a major study objective. Excluded articles were: (1) not in English, (2) did not include an underrepresented group, or (3) did not address research participation, recruitment or retention.…”

Shared voices, different worlds: Process and product in the Food Dignity action research project

“…Gayle said she felt it was used as a tool with which to bash her and other community research partners over the head. I argued that our Recently, a participatory research paper reinforced Gayle's rigour-as-bashing-tool case, by stating that their 'aim was to maintain rigorous research, to follow a "clean mind" approach to research, but maintain principles of community participation which necessitate "a dirty hand"' (Makhoul et al 2013). Firstly, minds are never 'clean'; they are filled with our life experience, and research rigour requires that we account for, not ignore, our world views (Harding 2000).…”

Communities Partnering With Researchers: An Evaluation of Coalition Function in a Community-Engaged Research Approach

“…doing what is right for the setting" 31 Traditionally, research was conducted with a top-down approach: labs and clinical/academic institutions had little involvement with the intended beneficiaries. 42 However, these methods fail to address complex problems unique to distinct communities. 20,23,24,[43][44][45] Alternatively, CEnR is viewed as "the keystone to translational medicine and improving the health of the nation."…”