Project Summary

Background: The increase in opioid use over the past decade by mothers is part of a larger national crisis. Mothers using opioids frequently struggle with concurrent mental illnesses, like depression and anxiety, and are at significant risk of adverse outcomes. Getting the right help is complicated by women’s caregiving roles, stigma, and lack of access to resources. Data highlight the impact of opioid use on families and communities, yet there is a significant lack of family-friendly treatment options. This suggests mothers themselves are not engaged in the development of healthcare options that consider their unique role and challenges.

Proposed Solution: The project team’s goal is to create an active, informed online community of (a) mothers with mental illnesses using opioids and (b) researchers, as well as an online and in-person infrastructure, resources, and tools to support future collaborative efforts in research and knowledge sharing. The team will build on social media initiatives developed by the PCORI-funded Maternal Mental Health Research Collaborative and expertise in community-engaged research. The project is enhanced by strong conceptual foundations and an active, productive researcher-patient partnership. It will have an emphasis on the inclusion of mothers’ lived experience to inform the project’s strategies, content, and messaging.

Objectives: The project team’s objectives include: to engage mothers with mental illnesses using opioids and researchers in the research4moms.com online community; to develop and provide Research 101 and Mothers 101 online learning modules for mothers and researchers, respectively; and to create in-person, tailored Community Engagement Studios (CES) with mothers and researchers. Longer-term objectives are: to increase the number of relevant, effective treatments for mothers with mental illness using opioids; and to improve their health outcomes through the sharing of knowledge coproduced by mothers and researchers.

Activities: The project team will develop an online social media awareness/community engagement strategy with an emphasis on reducing stigma; implement, evaluate, and refine social media engagement strategies to build the community; develop, pilot, and launch Research 101 and Mothers 101; adapt and pilot the Community Engagement Studio (CES) model for mothers and researchers; and finalize the tailored CES Implementation Guide. The team will share project deliverables and recommendations regarding online and in-person engagement strategies, tools, and resources to engage others with similar interests in coproducing research.

Outcomes: Project success will be measured in benchmarks achieved in the anticipated timeframes. Community engagement outcomes will be measured using social media analytics, measured in visits, shares, likes, and clicks. Feedback will be solicited from online community members, those who access the learning modules, and Community Engagement Studio participants. Project deliverables include a social media/community engagement strategy for building online patient communities; Research 101 and Mothers 101 online learning modules; and a tailored CES Implementation Guide.

Stakeholders and Collaborators: The team will engage its partners through social media activities and existing networks, the Brandeis University Institute for Behavioral Health, Opioid Policy Research Collaborative, and National Research Center on Parents with Disabilities, Dartmouth clinical and research sites, and the University of Massachusetts Medical School Systems and Psychosocial Advances Research Center. The team will actively support mothers to share their lived experience through the project’s online platforms, including the creation of social media and blog content. Researchers and mothers will be encouraged to collaborate online, contribute to the development of Research 101 and Mothers 101, and to the Community Engagement Studios. Mothers and researchers will review project products and recommendations to ensure usability and replicability.

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Project Information

Joanne Nicholson, PhD
Brandeis University^
$249,868

Key Dates

24 months
2018

^Trustees of Dartmouth College was the original organization affiliated with this project.

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Last updated: March 4, 2022