Voices of Women With Lived Experience of Substance Use During Pregnancy: A Qualitative Study of Motivators and Barriers to Recruitment and Retention in Research.

Despite concerns about negative neurocognitive effects of in utero substance exposure on child and brain development, research in this area is limited. This study gathered perspectives of persons with lived experience of substance use (eg, alcohol, prescription and illicit opioids, and other illicit substances) during a previous pregnancy to determine facilitators and barriers to research engagement in this vulnerable population. We conducted structured, in-depth, individual interviews and 2 focus groups of adult persons with lived experience of substance use during a previous pregnancy. Questions were developed by clinical, research, bioethics, and legal experts, with input from diverse stakeholders. They inquired about facilitators and barriers to research recruitment and retention, especially in long-term studies, with attention to bio-sample and neuroimaging data collection and legal issues. Interviews and focus groups were audio-recorded, transcribed, and analyzed using inductive coding qualitative analysis methods. Ten participants completed in-depth interviews and 7 participated in focus groups. Three main themes emerged as potential barriers to research engagement: shame of using drugs while pregnant, fear of punitive action, and mistrust of health care and research professionals. Facilitative factors included trustworthiness, compassion, and a nonjudgmental attitude among research personnel. Inclusion of gender-concordant recovery peer support specialists as research team members was the most frequently identified facilitator important for helping participants reduce fears and bolster trust in research personnel. In this qualitative study, persons with lived experience of substance use during a previous pregnancy identified factors critical for engaging this population in research, emphasizing the involvement of peer support specialists as research team members.

Patients' View of Their Primary Care Telemedicine During the COVID-19 Pandemic and Implications for Future Integration: A Multimethod Study.

INTRODUCTION: Telemedicine has become an integral part of primary care since the COVID-19 pandemic. This paper reports patients' assessments of their early telemedicine visits. METHODS: Adult primary care patients who had a telemedicine visit were identified from electronic medical records of a large Midwestern health system and randomly invited to participate in semistructured interviews. Participants compared telemedicine visits (audio and video) to face-to-face visits on measures of satisfaction and answered open-ended questions about the technology, primary care relationships, and ongoing use of telemedicine. Interviews were recorded and responses transcribed for qualitative analysis. RESULTS: The quantitative results revealed participants valued convenience and judged telemedicine visits "about the same" as office visits on satisfaction measures. Participants were largely willing to have another telemedicine visit but were concerned with the technological challenges and lack of physical examination. The qualitative analysis found most participants reported that telemedicine care was best with a known clinician. Further, they judged telemedicine to be best for follow-ups and simple or single problems and believed it should be balanced with face-to-face visits. CONCLUSIONS: Participants expect telemedicine will continue and have clearly articulated their telemedicine preferences. These preferences include telemedicine with a known clinician, the visits that they judged most appropriate for telemedicine, the need to balance telemedicine with face-to-face visits, and assured technologic access. The need for quality measures beyond patient satisfaction and the role of team-based telemedicine care emerged as areas for further research.

Recruitment and retention of pregnant women in prospective birth cohort studies: A scoping review and content analysis of the literature.

Longitudinal cohort studies present unique methodological challenges, especially when they focus on vulnerable populations, such as pregnant women. The purpose of this review is to synthesize the existing knowledge on recruitment and retention (RR) of pregnant women in birth cohort studies and to make recommendations for researchers to improve research engagement of this population. A scoping review and content analysis were conducted to identify facilitators and barriers to the RR of pregnant women in cohort studies. The search retrieved 574 articles, with 38 meeting eligibility criteria and focused on RR among English-speaking, adult women, who are pregnant or in early postpartum period, enrolled in birth cohort studies. Selected studies were birth cohort (including longitudinal) (n = 20), feasibility (n = 14), and other (n = 4) non-interventional study designs. The majority were from low-risk populations. Abstracted data were coded according to emergent theme clusters. The majority of abstracted data (79%) focused on recruitment practices, with only 21% addressing retention strategies. Overall, facilitators were reported more often (75%) than barriers (25%). Building trusting relationships and employing diverse recruitment methods emerged as major recruitment facilitators; major barriers included heterogeneous participant reasons for refusal and cultural factors. Key retention facilitators included flexibility with scheduling, frequent communication, and culturally sensitive practices, whereas participant factors such as loss of interest, pregnancy loss, relocation, multiple caregiver shifts, and substance use/psychiatric problems were cited as major barriers. Better understanding of facilitators and barriers of RR can help enhance the internal and external validity of future birth/pre-birth cohorts. Strategies presented in this review can help inform investigators and funding agencies of best practices for RR of pregnant women in longitudinal studies.

A socioecological framework for engaging substance-using pregnant persons in longitudinal research: Multi-stakeholder perspectives.

OBJECTIVE: Understanding the impact of substance use during pregnancy on fetal development and child health is essential for designing effective approaches for reducing prenatal substance exposures and improving child outcomes. Research on the developmental impacts of prenatal substance exposure has been limited by legal, ethical, and practical challenges. This study examined approaches to engage substance-using (with an emphasis on opioids) pregnant persons in longitudinal research, from multi-stakeholder perspectives. METHODS: The present study solicited the expertise of 1) an advisory group of community stakeholders, including people with lived experienced of opioid/substance use; and 2) an online survey with content experts. Qualitative analysis examined facilitators and barriers to recruiting and retaining substance-using pregnant persons through a socioecological lens at the individual, interpersonal, organizational, community, and policy levels. RESULTS: Stakeholders (N = 19) prioritized stigma, loss of confidentiality, legal consequences, and instability (e.g., homelessness and poverty) as important barriers that prevent substance-using persons from enrolling in research studies. Of 70 survey respondents, most self-identified as researchers (n = 37), followed by clinicians (n = 19), and 'others' (n = 14). Survey respondents focused on retention strategies that build trusting relationships with participants, including incentives (e.g., transportation and childcare support), participant-friendly study design, and team-related factors, (e.g., attitudes and practices). CONCLUSION: The stakeholder input and survey data offer key insights strengthening our understanding of facilitators and barriers to research participation, and ways to overcome barriers among substance-using pregnant persons. A socioecological framework can be used to identify and address these factors to increase recruitment and long-term retention of high-risk populations.