Barriers and strategies for recruitment of pregnant women in contemporary longitudinal birth cohort studies

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BACKGROUND: Pregnancy and birth cohort studies are essential for studying the social and biological determinants of human health, yet racial and ethnic minority populations are underrepresented due to low recruitment and retention rates. Remote data collection has potential to improve recruitment of underrepresented populations. The aims of this descriptive qualitative study were to explore the perspectives of pregnant and postpartum women about the barriers and facilitators to enrolling themselves, their child, and their partner in a longitudinal birth cohort study, identify data collection strategies to address barriers, and generate recommendations for future cohort studies. METHODS: Online focus groups and in-person interviews in English and Spanish were conducted between August and November 2022 with pregnant and postpartum women. Participants were recruited from Black and Hispanic serving obstetric clinics and community-based health and social organizations to ensure a racially and ethnically diverse sample. Analysis was conducted using an inductive thematic approach. RESULTS: 60 women participated in 10 focus groups and 11 interviews. Five themes emerged: challenges in committing time and resources to a research study; utility of compensation and resources; fears that research procedures would negatively impact child; concerns regarding data privacy and children's consent; and benefits for their family, community, and society. Black participants voiced concern about historical discrimination in science and mistrust of research, but also wanted to increase Black representation in research for future generations. Spanish-speaking participants expressed hesitancy related to fear of child injury and misuse of data. Women felt their partners would be reluctant to participate, but that incentives such as parental education would be motivating. Participants liked the flexibility of remote data collection in easing logistical challenges to participation but also expressed importance of personal study contact for facilitating access to resources, enhancing trust in the research process, and motivating retention. Participants also expressed the importance of transparency in data collection procedures and communication on study progress. CONCLUSIONS: Leveraging technological advances in remote data collection may reduce some challenges to recruitment of women and families to birth cohort studies. However, building and maintaining trust among communities with engagement, transparency, and communication is critical for recruitment of underrepresented populations.

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