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A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
Drivers of Research Participation Among Racially and Ethnically Underrepresented Women: Insights from Semi-Structured
Kylie Finkelstein1, Anika Heuberger1, Gabrielle Ramos2
1College of Medicine, Department of Obstetrics & Gynecology, University of Florida, Gainesville, FL, USA.
Introduction:
Underrepresented racial and ethnic communities participate in clinical research at disproportionately low rates. This underrepresentation creates gaps in the generalizability of research findings, which may exacerbate existing health disparities. Our objectives are to understand factors influencing clinical research participation of women of underrepresented racial and ethnic backgrounds and to gather community-informed suggestions to improve their involvement in clinical research.
Methods:
A sample of nineteen semi-structured virtual interviews were conducted in English or Spanish with women enrolled in the WARRIOR trial. The Socio-Ecological Model (SEM) served as a framework for guiding interviews that were audio-recorded, transcribed, and uploaded to ATLAS.ti™ software for coding. Data were analyzed with a deductive content approach and consensus coding to generate themes based on the SEM.
Results:
A total of 19 interviews were conducted. Among participants, 66% identified as Hispanic. Racial identification included 39% White, 33% Black, 6% American Indian or Alaska Native, 5% Other, and 17% who preferred not to disclose. Motivations for research participation included a desire to help others, compensation, and honoring their physician's request. Barriers such as a lack of transportation, language, limited understanding of the study, privacy concerns, fears of consuming unknown medications, and mistrust of the healthcare system were noted. Physician recommendations positively influenced enrollment, while family served a more supportive role. Participants preferred recruitment by trusted sources, such as healthcare providers. Many participants were generally aware of safety in research policies but not their specifics.
Conclusion:
Understanding the attitudes of underrepresented racial and ethnic groups toward clinical research and the factors that influence their participation is essential to increasing representation and improving the generalizability of study findings. Community-informed strategies addressing recruitment, trust, barriers, and safety concerns can foster inclusivity and ensure that research findings reflect target populations.
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