Background: The proposed project sits at the intersection of behavioral health (i.e., mental health and/or substance use disorders) with two PCORI priority areas: intellectual and developmental disabilities (IDD), and maternal morbidity and mortality. Women with IDD are vulnerable to perinatal complications and adverse birth outcomes, which may be exacerbated by behavioral health conditions (BH) and compromised by the lack of tailored, effective treatments. Researchers must be supported in developing skills to engage with this target population.
Proposed Solution to the Problem: The project team will leverage its online Maternal Mental Health Research Collaborative (MMHRC) with the Disabled Parenting Project (DPP) community to build out the infrastructure and resources for PCOR/CER with this target population. Lessons learned have the potential to inform telehealth interventions and mHealth applications, multiplying the potential impact of the proposed project.
Objectives: Specific aims include: (a) engaging mothers with IDD/BH in online communities (research4moms.com and disabledparenting.com) optimizing accessibility/diversity/inclusivity; (b) collaborating with mothers, stakeholders, and researchers in virtual Ideas Lab sessions to identify research priorities and advance PCOR/CER strategies; and (c) implementing tailored Virtual Community Engagement Studios with mothers, stakeholders, and researchers.
Activities: Proposed activities include developing strategies for extending virtual reach and engagement to a diverse, inclusive population of mothers and stakeholders. The five virtual Ideas Lab sessions with mothers with IDD/BH, stakeholders, and researchers will be facilitated by Knowinnovation, Inc. in Year 1. The team will implement two Virtual Community Engagement Studios in Year 2. Project activities, reviewed and evaluated by stakeholders, will inform project deliverables and outcomes.
Projected Outcomes and Outputs: Project deliverables include: (a) a Virtual Community Engagement Strategy 3.0, aligned with the language, needs and preferences of mothers with IDD/BH; (b) a Community Engaged Research Seminar Syllabus to strengthen the skills of researchers and trainees; and (c) a Virtual Community Engagement Studio Toolkit 3.0, building on existing PCORI-funded tools and prior experiences, to engage this new target population. Medium-term outcomes include implementing the Community Engaged Research Seminar. Lessons learned in engaging with mothers and stakeholders will inform the ongoing work of the National Research Center for Parents with Disabilities and the Opioid Policy Research Collaborative (OPRC), and other PCORI-funded initiatives.
Patient and Stakeholder Engagement Plan: The team engages many thousands of mothers and stakeholders through its virtual community efforts via the MMHRC and the DPP. The team will invite and support stakeholder participation in all project activities, knowing that the dedicated project team has a successful track record in engaging stakeholders through its extensive relationship networks.
Project Collaborators: Collaborators include the MMHRC and DPP communities, the Parent Advisory Board of the National Research Center for Parents with Disabilities, the OPRC, the Brandeis Institute for Behavioral Health and Lurie Institute for Disability Policy, and the Massachusetts Collaborative for Supporting Parents with Intellectual Disabilities. Knowinnovation, Inc. will collaborate in Ideas Lab planning and implementation.
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Joanne Nicholson, PhD
Last updated: January 20, 2023