Prenatal Opioid Exposure Research Brief April 2022

Stakeholder Perspectives on Advancing Understanding of Prenatal Opioid Exposure and Brain Development From the iOPEN Consortium of the Healthy Brain and Child Development Study
Jennifer L. DiPietro, Kristen L. Mackiewicz Seghete, Elizabeth E. Krans, Kasey Edwards Snider, Reina Bower, Kea Parker, Janie Gullickson, Alexandra S. Potter, Hugh Garavan, Tessa C. Vatalaro, Moriah E. Thomason, Elinor L. Sullivan and Alice M. Graham

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INTRODUCTION

There is very limited research regarding the effects of opioid use during pregnancy on fetal and childhood development, despite increases of opioid use disorder and neonatal opioid withdrawal syndrome. The Healthy Brain and Child Development Study (HBCD) will fill this gap by examining brain and behavioral development from birth through the first decade of life to help inform medical practice and health policy. Due to the size and complexity of this study, an 18-month planning phase was started at 28 sites across the nation. One part of the Phase I initiative involved the development of Stakeholder Advisory Committees to guide the next stage of research. Phase I stakeholder meetings were conducted at Oregon Health and Science University, New York University Langone Medical Center, the University of Pittsburgh, and the University of Vermont. Despite differences in the structure of the stakeholder meetings by site, the overall goals for the meetings included forming relationships, gathering information, and learning about research engagement. Documents from each meeting were reviewed for common research themes and suggestions for improving research approaches. Key discussion themes included research interest, research priorities, barriers and challenges, and research strategies.


KEY FINDINGS

  • Overall, there was excitement about the research, especially the opportunity to include voices of people with lived experience (people who have used opioids during pregnancy); collaboration between providers, peer support specialists, patients, and others; and excitement around contributing to research that could bring about new findings in addiction medicine and child development.
     
  • Sites found that there is mistrust between people with substance use disorder and the medical system due to legal barriers, past trauma, and feeling judged by providers. This could be helped by including people with lived experience on the research team, forming connections, communicating clearly, training the research team in implicit bias, and practicing trauma-informed care.

IMPLICATIONS FOR POLICY RESEARCH AND PRACTICE
As HBCD focuses on understanding the brain and behavioral development of children exposed to opioids during pregnancy and their parent’s ability to care for them, it is important that stakeholder input, especially from people with lived experience, informs the study design. Data show that the quality of research and clinical care improves when the perspectives of patients are considered in research development. These initial stakeholder meetings included people with lived experience, healthcare providers, and people making decisions at individual or policy levels that impact pregnant people who use substances and their children. Phase II of the HBCD study will provide an opportunity to expand stakeholder groups that will evolve with the needs of the study over time at each site. For example, membership could expand to include other individuals with lived experience as appropriate (e.g., partners of pregnant people with opioid use disorder, adult children of parents that used opioids during pregnancy). In conclusion, these stakeholder meetings provided very valuable information for structuring upcoming studies; however, researchers would have benefitted from more time and more opportunities for in-person connection. Additionally, ongoing dialogue and relationship building with stakeholders is needed, particularly people with lived experience. Lastly, research and funding agencies must be flexible in timelines and methods to allow for incorporation of stakeholder input.


REFERENCE
DiPietro JL, Mackiewicz Seghete KL, Krans EE, et al. Stakeholder Perspectives on Advancing Understanding of Prenatal Opioid Exposure and Brain Development From the iOPEN Consortium of the Healthy Brain and Child Development Study. Original Research. Frontiers in Psychology. 2021;12 doi:10.3389/fpsyg.2021.698766

SUGGESTED CITATION
DiPietro, JL, Mackiewicz Seghete, KL, Krans, EE, et al. Stakeholder Perspectives on Advancing Understanding of Prenatal Opioid Exposure and Brain Development From the iOPEN Consortium of the Healthy Brain and Child Development Study. Center for Parenting and Opioids Research Brief. 2022


ABOUT THE AUTHORS
Jennifer DiPietro, Kristen Mackiewicz Seghete, Alice Graham, Kea Parker, and Elinor Sullivan represent Oregon Health and Science University in Portland, Oregon.
Kasey Snider represents Project Nurture Providence in Portland, Oregon.
Reina Bower represents the Mental Health Addiction Association of Oregon in Portland, Oregon.
Elizabeth Krans represents the University of Pittsburgh in Pittsburgh, Pennsylvania.
Alexandra Potter and Hugh Garavan represent the University of Vermont in Burlington, Vermont.
Tessa Vatalaro and Moriah Thomason represent New York University in New York, New York.

ACKNOWLEDGEMENTS
We would like to thank Kathleen Dillon for her assistance with organization of stakeholder meetings.