Navigating complexity: understanding the experiences, motivations and challenges of conducting research with perinatal individuals who use opioids and other substances

Despite increased opioid use (OU) among individuals of child-bearing age, pregnant and postpartum individuals with OU, and the experiences of these individuals and scientists with related expertise, are notably absent in scientific literature and discourse. The HEALthy Brain and Child Development (HBCD) Study, a large, longitudinal, U.S.-based consortium project, aims to understand how brain and child development is shaped by various adversities and protective factors, including prenatal exposure to opioids and other substances. Given the persistent challenges of engaging pregnant and postpartum individuals with OU in longitudinal research, this qualitative study, conducted during the pilot phase of HBCD, aimed to better understand barriers, motivators, and best practices to recruitment and retention of this underrepresented population.

Participants included perinatal individuals with opioid use disorder (OUD) (n = 6) and researchers with expertise in perinatal substance use (n = 22). Semi-structured interviews were conducted and thematically analyzed to identify effective strategies for recruitment, engagement, and retention in longitudinal research. Knowledge and comfort with neurodevelopmental research procedures was also explored.

Key themes emerging from both participant groups included the centrality of trust and nonjudgmental relationships between research teams and participants, transparency about research aims and procedures, and meaningful connections to emotional, educational, and logistical supports. Respondents emphasized the value of research staff continuity, flexible study designs, and opportunities for participants to share their stories and receive feedback. Although participants generally expressed comfort with infant neuroimaging and biospecimen collection, misunderstandings about these methods underscored the need for thorough, accessible education.

Findings highlight the importance of responsive, ethically grounded research practices to strengthen research on opioid use in a manner responsive to the needs of affected populations. Successful engagement requires creative and adaptable study designs, ancillary supports, and research staff who foster trusting relationships and help participants feel heard and valued.