TY - JOUR
T1 - A socioecological framework for engaging substance-using pregnant persons in longitudinal research
T2 - Multi-stakeholder perspectives
AU - Goldstein, Ellen
AU - Nervik, Kendra
AU - Hagen, Shelbey
AU - Hilliard, Florence
AU - Turnquist, Alyssa
AU - Bakhireva, Ludmila N.
AU - McDonald, Ryan
AU - Ossorio, Pilar N.
AU - Lo, Jamie
AU - Zgierska, Aleksandra E.
N1 - Funding Information:
Research reported in this publication was supported by the HEALthy Brain and Child Development (HBCD) Study funded by the National Institutes of Health (NIH) Helping to End Addiction Long-term (HEAL) Initiative ( https://heal.nih.gov/ ) and ( National Institute on Drug Abuse (NIDA) and National Institute of Neurological Disorders and Stroke (NINDS) ) under award numbers: R34DA050237 , R34DA050254 , R34DA050263 , R34DA050270 , R34DA050341 . The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Publisher Copyright:
© 2021 Elsevier Inc.
PY - 2021/9/1
Y1 - 2021/9/1
N2 - 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.
AB - 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.
KW - High-risk pregnancy
KW - Maternal-infant research
KW - Opioids
KW - Recruitment
KW - Retention
KW - Substance use
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U2 - 10.1016/j.ntt.2021.106997
DO - 10.1016/j.ntt.2021.106997
M3 - Article
C2 - 34023390
AN - SCOPUS:85110334129
SN - 0892-0362
VL - 87
JO - Neurobehavioral toxicology
JF - Neurobehavioral toxicology
M1 - 106997
ER -