Best Practices for Engaging Pregnant and Postpartum Women at Risk of Substance Use in Longitudinal Research Studies: a Qualitative Examination of Participant Preferences

Abstract

There are significant barriers in engaging pregnant and postpartum women that are considered high-risk (e.g., those experiencing substance use and/or substance use disorders (SUD)) into longitudinal research studies. To improve recruitment and retention of this population in studies spanning from the prenatal period to middle childhood, it is imperative to determine ways to improve key research engagement factors. The current manuscript uses a qualitative approach to determine important factors related to recruiting, enrolling, and retaining high-risk pregnant and postpartum women. The current sample included 41 high-risk women who participated in focus groups or individual interviews. All interviews were analyzed to identify broad themes related to engaging high-risk pregnant and parenting women in a 10-year longitudinal research project. Themes were organized into key engagement factors related to the following: (1) recruitment strategies, (2) enrollment, and (3) retention of high-risk pregnant and parenting women in longitudinal research studies. Results indicated recruitment strategies related to ideal recruitment locations, material, and who should share research study information with high-risk participants. Related to enrollment, key areas disclosed focused on enrollment decision-making, factors that create interest in joining a research project, and barriers to joining a longitudinal research study. With regard to retention, themes focused on supports needed to stay in research, barriers to staying in research, and best ways to stay in contact with high-risk participants. Overall, the current qualitative data provide preliminary data that enhance the understanding of a continuum of factors that impact engagement of high-risk pregnant and postpartum women in longitudinal research with current results indicating the need to prioritize recruitment, enrollment, and retention strategies in order to effectively engage vulnerable populations in research.

Voices of Women With Lived Experience of Substance Use During Pregnancy

“…Facilitators included trusting relationships between researchers and participants, involvement of peer support specialists as study team members, a respectful and nonjudgmental environment, and material and other benefits (eg, referral to needed services). These findings are concordant with those previously published 1,14,26,27. The following is a discussion of the key findings and corresponding recommendations.…”

“…These findings are concordant with those previously published. 1,14,26,27 The following is a discussion of the key findings and corresponding recommendations.…”

Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort

“…In addition, our understanding of how to best meet the needs of gender and sexual minority groups and effectively engage them in research is still evolving. Employing participantcentered, culturally sensitive practices that foster trust between researchers and participants, and anticipating and overcoming logistical burdens can improve research engagement, particularly among populations historically underrepresented in research [9,16,22,23]. This is of particular concern for the NIH Helping to End Addiction Long-term® (HEAL) HEALthy Brain and Child Development (HBCD) study [15], which focuses on young children whose parents may need to bring their other children to the study visits, especially since the HBCD's assessments can be long and its brain magnetic resonance imaging (MRI) is best acquired during a child's evening/nighttime sleep when childcare support volunteers are harder to recruit.…”

“…Persistently low enrollment rates are common in research, causing extended enrollment periods and delays in research completion [ 19 ]. Even with a representative sample enrolled at baseline, external validity can be challenged in longitudinal research by attrition, which is anticipated to be higher among participants from disadvantaged social backgrounds, minority groups, or who are pregnant, younger, low-income, less educated, in unstable marital partnerships, have mental illness, or use substances [ 9 , 16 ]. Groups historically underrepresented in research include racial, ethnic, sexual, and gender and other minority groups; geographically isolated groups (e.g., rural populations or residential racial segregation); vulnerable populations, including the elderly, pregnant people, children, individuals with disabilities, limited English proficiency [ 20 ], and fewer economic resources.…”

COVID testing hesitancy among pregnant patients: Lessons learned from the COVID-19 pandemic about the unique needs and challenges of medically complex populations

“…However, it was unclear whether barriers to COVID testing among this population were similar to or different from those of non-pregnant individuals and communities. Additionally, there was also a need to identify the rami cations of test refusal for pregnant patients, particularly among those populations who faced poor obstetric outcomes and high infant mortality rates [21,22].…”