An Examination of Recruitment and Retention of Pregnant Individuals for Neuroimaging and Developmental Studies of Early Life

Abstract

Birthing individuals have long been underrepresented in research, despite initiatives like the National Institutes of Health Revitalization Act advocating for increased inclusion of women and minorities. As research is being conducted in biomedical fields on maternal and infant health to attain equitable health outcomes for all individuals who bear children, studies need to prioritize inclusion of diverse groups from various ethnicities, ages, races, genders, and socioeconomic backgrounds. Current literature in various fields has given recommendations on how to recruit underrepresented participants and insights to barriers that are faced when recruiting and retaining these participants, from the perspectives of underrepresented communities; however, the perspectives of researchers have been understudied and limited in current research. The proposed study aims to conduct a descriptive evaluation examining RandR within the HEALthy Brain and Child Development (HBCD) Study national consortium and various data collection site-level characteristics and procedures that influence RandR from the perspectives of research personnel. The sample size of this study was n=41 HBCD RandR personnel. We conducted semi-structured interviews as the data collection method. We used inductive coding and thematic analysis for the data analysis utilizing Braun and Clake multidirectional model to guide the analysis. For our first study, we identified strategies for recruitment into the HBCD Study. W found 6 emergent themes which were 1) in-person recruitment, 2) outreach, 3) distributing recruitment materials, 4) developing partnerships, 5) word of mouth/referrals, and 6) media recruitment. Peer navigators or support staff were also noted in this study as a key strategy for recruiting pregnant people with a history of substance use. These findings suggest alignment with previous research studies but provide specific context to where these recruitment strategies are occurring and which regions are doing which strategies. The second study looks at barriers and facilitators to RandR. Barriers identified to RandR included 1) time constraints and commitment, 2) distance and transportation, 3) staffing, 4) Procedures and procedural changes, 5) approvals, 6) misalignment with partnerships, 7) HBCD applications not working correctly 8) life circumstances, 9) No show / no communication, , 10) social influences. Facilitators to RandR noted in this study included 1) being a trusted establishment, 2) providing resources and incentives, 3) team characteristics, 4) HBCD RandR personnel characteristics, 5) soft touches, 6) extensions for completing visits, 7) participants feeling that they were contributing to science. These two studies provide information that aids in understanding the context of what is needed for the RandR for pregnant people from diverse backgrounds. The findings in this study also add to the literature as it identifies structural and institutional factors that also impact the RandR process. These factors could not be identified without receiving the perspectives of the HBCD RandR personnel.