Facilitators, barriers, and recommendations related to the informed consent of Marshallese in a randomized control trial

Author:

Purvis Rachel S1,Eisenberg Leah R2,Trudeau Christopher R2,Long Christopher R3,McElfish Pearl A3ORCID

Affiliation:

1. Office of Community Health and Research, University of Arkansas for Medical Sciences Northwest, Fayetteville, USA

2. Medical Humanities and Bioethics, College of Medicine, University of Arkansas for Medical Sciences, Little Rock, USA

3. College of Medicine, University of Arkansas for Medical Sciences Northwest, Fayetteville, USA

Abstract

BackgroundThe Pacific Islander population is the second fasting growing population in the United States and Arkansas is home to the largest Marshallese population in the continental US. The Marshallese community have significant health disparities with high prevalence of diabetes, heart disease, and obesity compared to the general US population. Using a community-based participatory research approach, researchers and Marshallese community stakeholders identified diabetes as the top health issue for research.MethodsFrom 2014 to 2018, a randomized control trial was conducted comparing standard diabetes management education with a culturally adapted family model of standard diabetes management education delivered in participants’ homes by Marshallese community health workers and certified diabetes educators. Interviews were held with Marshallese participants to document their experiences with and perceptions of the informed consent process for this randomized control trial.ResultsParticipants provided feedback on the process of enrolling in the study, describing barriers and facilitators to giving informed consent from their perspective, and offering recommendations for improving the informed consent process.ConclusionFindings suggest that informed consent with underserved communities, including immigrant and migrant populations who do not speak English or have limited English proficiency, is possible, and that using a community-based participatory research approach can help facilitate the informed consent process.

Funder

National Center for Advancing Translational Sciences

Patient-Centered Outcomes Research Institute

Sturgis Foundation

Publisher

SAGE Publications

Subject

Philosophy,Issues, ethics and legal aspects,Medicine (miscellaneous)

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