Background: Mothers with intellectual and developmental disabilities (IDD) are highly vulnerable to perinatal complications and adverse birth outcomes, exacerbated by co-occurring behavioral health (BH) conditions. There is a significant need for empirically based, tailored treatment to support the reproductive health of this “hidden” group of women. Accessible, useful resources to support research participation for this population are scarce.
Proposed Solution to the Problem: The project team will leverage the Maternal Mental Health Research Collaborative and their Virtual Community Engagement Studio model to build capacity for patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) by providing tailored online research and data literacy resources for mothers with IDD/BH for the Bridges to Research platform. They will develop resources with mothers, stakeholders at the Countway Library of Harvard Medical School and community experts.
Objectives: The project team’s goal is to increase mothers’ research/data literacy to support their engagement in PCOR/CER. Aims include: (1) to specify and pilot resource review procedures with continuing and new stakeholders comprising the Bridges to Research Co-Design Team; (2) to compile recommendations related to mothers’ research/data literacy, resource accessibility and adaptation through community stakeholder review of existing resources and facilitated discussion of resource gaps and needs; and (3) to develop content specifications for three modules on design, implementation and dissemination for the Bridges to Research platform tailored to mothers with IDD/BH.
Activities: The project includes three overlapping phases, with activities in each phase informing concurrent and subsequent activities. A Co-Design Team with diverse stakeholders and partners will support individual review of resources, implement six Virtual Community Engagement Studio (VCES) group sessions, develop recommendations and content specifications for the Bridges to Research platform and evaluate the co-design process.
Projected Outcomes and Outputs: The project team will bring mothers and stakeholders together to build relationships, identify research literacy content gaps and priorities, and contribute to project deliverables. They will develop tailored, accessible content specifications for the Bridges to Research platform to actively support mothers with IDD/BH in PCOR/CER.
Outputs and deliverables include a standardized resource review protocol; specifications for tailoring research/data literacy resources; and content specifications for three Bridges to Research modules on research design, implementation and dissemination.
Short-term outcomes during the project period: The project team will bring diverse mothers and stakeholders together to identify research content priorities, elaborate essential research/data literacy skills, and contribute to the specification of Bridges to Research online modules on research design, implementation and dissemination.
Medium-term outcomes (0-2 years post-project period): Ongoing implementation of the Bridges to Research platform with content related to community engagement activities and PCOR/CER opportunities for mothers with IDD/BH and diverse stakeholders.
Long-term outcomes (3+ years post-project period): Active support of mothers with IDD/BH in research engagement, and PCOR/CER targeting this vulnerable population.
Patient and Stakeholder Engagement Plan: The project team will reach mothers with IDD/BH and stakeholders through their active network of partners and online communities. The Co-Design Team, including mothers, will meet bi-weekly. The Stakeholder Engagement co-leads are community experts with experience as patients, family members and service providers. The project team will compensate stakeholders for over 100 hours of resource review in each project year. They will bring a new stakeholder group to the project, health science librarians, in the emerging role of informationists on the research team.
Project Collaborators: The proposed Bridges to Research project will enhance the community engagement efforts and sustainable work of the Maternal Mental Health Research Collaborative and the Massachusetts Partnership for Parents with I/DD.F The project team’s partnership with the Countway Library and co-design activities build on Countway’s ongoing efforts to engage with the larger community and contribute to and support biomedical research. All our activities include and support mothers with IDD/BH.