East African Perceptions of Barriers/Facilitators for Pediatric Clinical Research Participation and Development of the Inclusive Research Model


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Abstract

Purpose:This study sought to gain a greater understanding of perceptions related to barriers/facilitators for pediatric (ages 0–17) clinical research participation among East African immigrant community members.Design and Methods:Community leader interviews (n = 6) and focus groups with lay members (n = 16) from the three largest East African communities in the Seattle area (Eritrean, Ethiopian and Somali) were conducted. Discussions were semi-structured based on existing barrier/facilitator research and analyzed using directed content analysis to identify major themes.Results:Analysis revealed two novel barrier sub-themes: inadequate interpretation and translation of information even when services were available and a lack of adequate vocabulary in preferred languages. Participants also confirmed previously identified logistical barriers/facilitators (lack of knowledge regarding clinical research; time, cost, transportation, and child care challenges; providing incentives) and psychosocial barriers/facilitators (mistrust of research; cultural and/or religious differences; connecting benefits to the community; involving religious/community leaders or organizations and including community members on the research team; transparency in the research process; presenting results to the community) for clinical research participation among underrepresented groups.Conclusion:Perceptions of barriers/facilitators for pediatric clinical research participation among East African immigrants identified two novel sub-themes and confirmed those previously described by other underrepresented communities.Practice Implications:To facilitate more inclusive research participation, researchers, nurses and other health care providers might consider ensuring adequate time for discussion of the research study and process, engaging the community in the research process, employing lay reviews of translated materials and/or oral consent processes, and other strategies outlined in the Inclusive Research Model.Highlights:East African immigrants continue to be underrepresented in research.Previously identified barriers/facilitators to research participation are confirmed.Community members identified two novel barriers related to language.The Inclusive Research Model offers strategies to engage underrepresented groups.

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