Background: Mental health conditions are a top medical complication of pregnancy and childbirth and are associated with a range of adverse maternal and child outcomes. Approximately one in seven to one in four birthing people experience symptoms of a mental health condition during pregnancy or postpartum, yet few are diagnosed or treated. There remain critical knowledge gaps and significant challenges to adequately addressing maternal mental health. Improving capacity to address maternal mental health through evidence-based prevention and intervention efforts designed, implemented and evaluated with patient engagement and involvement can reduce maternal morbidity/mortality and improve child outcomes.
Proposed Solution to the Problem: The project team’s solution is to convene a stakeholder group of patients, caregivers, providers, community members and researchers to understand the needs of birthing people; specifically, improving the capacity to address maternal mental health and using that knowledge to collaboratively determine a future patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) agenda. Incorporating the voices of all stakeholders will increase patient-centeredness in future maternal mental health research. In a phased approach, a fully formed PCOR/CER research agenda can be disseminated efficiently and effectively to target audiences and decision makers, leading to better research project receptivity and implementation of future PCOR/CER evidence-based findings in maternal mental health research.
Objectives: The project team’s work will begin at Henry Ford Health (HFH) in Detroit, Michigan with mid- and long-term goals that entail creating sustained engagement of perinatal patients, providers and researchers in the design, implementation and dissemination of PCOR/CER on maternal mental health. To accomplish these goals, the project team will focus on these short-term objectives:
- Gather patients, researchers, providers and community to understand patient needs and inform development of PCOR/CER questions.
- Convene a stakeholder team of 22 patients, caregivers, researchers, providers and community members.
- Train all stakeholders to facilitate a shared understanding of patient-centeredness.
- Through storytelling as well as nominal group processes, identify issues that matter to stakeholders.
- Use results from this process to collaboratively generate and prioritize a PCOR/CER agenda.
- Determine tailored dissemination strategies for the PCOR/CER agenda for each stakeholder group.
Activities: Through storytelling, the project team seeks to leverage the voices and lived experiences of patients with maternal mental health conditions, sharing these narratives and building capacity for future maternal mental health research. Stories will be displayed and performed for the broader community in a storytelling symposium and further insights around maternal mental health experiences and elicited emotions, narratives and discourse will be gathered through a storytelling survey. Subsequently, with the aid of a diverse stakeholder group the project team will develop a high-quality, patient-centered, maternal mental health-focused PCOR/CER agenda for dissemination.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include: 1) hold a storytelling symposium to share perspectives, build relationships and invite community input on improving maternal mental health; 2) establish a sustainable, collaborative stakeholder team of researchers, providers, patients, family and community members focused on addressing maternal mental health; and 3) develop PCOR/CER agenda and dissemination and implementation plan to further patient-engaged maternal mental health research.
Medium-term outcomes (0-2 years post-project period) include: 1) develop and submit PCOR/CER grant applications based on the co-created research agenda; 2) continue regular stakeholder team meetings in order to continuously evaluate changing needs of the population; 3) publish and present findings from the proposed project.
Long-term outcomes (3+ years post-project period) include: 1) sustained engagement of perinatal patients, their families, associated community partners (e.g., doulas, community health workers, non-HFH patients, organizations serving pregnant and parenting women and their families), providers, and researchers in the design, implementation and dissemination of PCOR/CER in maternal mental health.
Patient and Stakeholder Engagement Plan/Project Collaborators: The project team plans to recruit stakeholders that represent a variety of experiences with maternal mental health to bring multiple viewpoints. Stakeholders will be engaged from the onset of the award in several capacities. During storytelling the project team will engage 10 participants with maternal mental health experience, including six patients/caregivers, two providers, and two community stakeholders. The storytelling symposium, co-designed by the stakeholder team, will be a public event. To create diverse representation, the target recruitment for the stakeholder team is 22 members: eight patients/caregivers, four researchers, four providers, three community stakeholders, and one PCOR expert. The stakeholder team will be expected to attend eight interactive/collaborative meetings wherein tangible deliverables will be co-designed.