Ellen Goldstein1, Kendra Nervik2, Shelbey Hagen3, Florence Hilliard4, Alyssa Turnquist5, Ludmila N Bakhireva6, Ryan McDonald7, Pilar N Ossorio8, Jamie Lo9, Aleksandra E Zgierska10. 1. Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, 1100 Delaplaine Ct, Madison, WI 53715, United States of America. Electronic address: egoldstein5@wisc.edu. 2. Department of Sociology, University of Wisconsin, 8128 William H. Sewell Social Sciences Building, 1180 Observatory Drive, Madison, WI 53706-1393, United States of America. Electronic address: nervik@wisc.edu. 3. Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, 1100 Delaplaine Ct, Madison, WI 53715, United States of America. Electronic address: shelbey.hagen@fammed.wisc.edu. 4. Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, 1100 Delaplaine Ct, Madison, WI 53715, United States of America. Electronic address: florence.hilliard@wisc.edu. 5. Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, 1100 Delaplaine Ct, Madison, WI 53715, United States of America. Electronic address: alyssa.turnquist@fammed.wisc.edu. 6. College of Pharmacy Substance Use Research and Education (SURE) Center, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 09 5360, Albuquerque, NM 87131, United States of America; Department of Family and Community Medicine, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 09 5360, Albuquerque, NM 87131, United States of America; Division of Epidemiology, Biostatistics, and Preventive Medicine, Department of Internal Medicine, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 09 5360, Albuquerque, NM 87131, United States of America. Electronic address: lbakhireva@salud.unm.edu. 7. Department of Obstetrics & Gynecology, University of Wisconsin School of Medicine and Public Health, McConnell Hall, 1010 Mound Street, Madison, WI 53715, United States of America. Electronic address: rcmcdonald@wisc.edu. 8. University of Wisconsin Law School, 975 Bascom Mall, Rm. 9103, Madison, WI 53706-1399, United States of America; University of Wisconsin, Morgridge Institute for Research, 330 N. Orchard St, Madison, WI 53715, United States of America. Electronic address: pnossorio@wisc.edu. 9. Department of Obstetrics & Gynecology, Oregon Health & Science University, 3181 SW Sam Jackson Park Road, L466, Portland, OR 97239, United States of America. Electronic address: loj@ohsu.edu. 10. Department of Family and Community Medicine, Pennsylvania State University College of Medicine, 700 HMC Crescent Road, Hershey, PA 17033, United States of America. Electronic address: azgierska@pennstatehealth.psu.edu.
Abstract
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.
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.
Authors: Min Wu; Linda L Lagasse; Trecia A Wouldes; Amelia M Arria; Tara Wilcox; Chris Derauf; Elana Newman; Rizwan Shah; Lynne M Smith; Charles R Neal; Marilyn A Huestis; Sheri Dellagrotta; Barry M Lester Journal: Matern Child Health J Date: 2013-04