ABSTRACT
Community-engaged research is increasingly recognized for its potential to advance health equity. The ability to conduct such research in the United States is predicated on the completion of human subjects protection courses; however, prior studies suggest that many of these required courses may not adequately accommodate the varied skillsets and backgrounds of community members involved with carrying out research. The present study explores community researchers' (CRs') experiences with a human subjects protection course frequently required by U.S. academic institutions. Six CRs involved in conducting a community-based participatory research (CBPR) project on Black women's pregnancy-related experiences were interviewed about their completion of the required course. Across multiple interviews, CRs noted challenges with the training length, competing external demands, module readability, content relevancy, end-of-module quizzes, and technology requirements. Despite such obstacles, CRs still valued the opportunity to learn and felt more knowledgeable and capable post-course completion. Recommendations for course improvement were explored. University requirements for human subjects protection trainings may place an undue burden on community members preparing to conduct research, impede academic-community partnerships, and discourage the initiation and continuation of community-engaged studies. Course alternatives that are tailored to CRs as well as community-academic partnerships could enhance the feasibility, relevance, and effectiveness of such trainings.
ABSTRACT
This study on Black women's maternal health engaged a group of six community members in a community based participatory research project in a state with one of the largest racial disparities in maternal mortality and severe maternal morbidity in the United States. The community members conducted 31 semi-structured interviews with other Black women who had given birth within the past 3 years to examine their experiences throughout the perinatal and post-partum period. Four main themes emerged: (1) challenges related to the structure of healthcare, including insurance gaps, long wait times, lack of co-location of services, and financial challenges for both insured and uninsured people; (2) negative experiences with healthcare providers, including dismissal of concerns, lack of listening, and missed opportunities for relationship building; (3) preference for racial concordance with providers and experiences with discrimination across multiple dimensions; and (4) mental health concerns and lack of social support. CBPR is a research methodology that could be more widely deployed to illuminate the experiences of community members in order to develop solutions to complex problems. The results indicate that Black women's maternal health will benefit from multi-level interventions with changes driven by insights from Black women.
