Optimizing Reproductive and Preconception Health for Women with Chronic Conditions
Maternal morbidity and mortality in the U.S. are worsening, especially among Black and Native American populations. One important preventive strategy is assuring the reproductive health and well-being of women living with chronic conditions. Preconception and reproductive care can help improve women’s health and maternal and infant health outcomes for those who wish to become a parent. There are serious gaps in research about who should deliver this care as well as how and when, particularly for Black and Native American women who bear a disproportionate risk for health disparity.
Project Objectives: We aim to 1) Increase understanding about how Black and Native American women with chronic conditions think about their reproductive health decision-making and ways to optimize their health prior to conception; 2) Identify patient-centered, patient-designed strategies to identify testable and sustainable preconception and reproductive health practices; and 3) Set building blocks in place to support future collaborative action to drive the research roadmap forward.
Activities: We will engage 40 Black and Native American reproductive age women with one or more chronic conditions as patient stakeholders to help us understand their recommendations and priorities about how to best implement preconception care/reproductive wellness. We will also convene a 10-15 person provider/researcher stakeholder group, seeking their input and ultimately bringing both groups together for collective conversation and idea sharing.
Patient and Stakeholder Engagement Plan: We will engage a group of diverse Black and Native American women who have one or more chronic conditions. We will coordinate opportunities for the women to build community, to share, and to document their stories and experiences. We will coordinate opportunities for patient stakeholders to review themes and ideas shared by fellow stakeholders, including the researcher and clinician stakeholders, and then identify potential solutions and priorities for intervention. Our team will create opportunities for all stakeholders to think side-by-side about implementation strategies and sustainability creating a roadmap for future studies using a research justice approach.
Project Collaborators: This is a partnership between the School of Medicine, the School of Social Work, Healthy Start Pembroke, the American Indian Center, and a variety of faculty and clinicians across North Carolina.
Project Team: Dr. Rachel Urrutia-Peragallo and Dr. Sarah Verbiest are the Co-Principal Investigators. Dr. Kristin Tully, Dr. Crystal Cene and Katherine Bryant are Co-Investigators. Erica Little, Melissa Richardson, Shaunette Howard, Erica Chambers, and Qua Lynch Adkins are Community Co-Investigators. Marina Pearsall is the Project Manager focusing on the patient stakeholders. Kia Barbee provides business management support.
Timeline: This is a one-year project that began January 1, 2021 and ends on December 31, 2021. The total amount of the award is $100,000 with the majority of the funds being used to support patient stakeholder time and engagement.
Projected Outcomes and Outputs: Together, we will produce a research roadmap guided by Research Justice and Behavioral Change Wheel frameworks and create an ongoing communication pipeline among all stakeholders. Researcher and clinician stakeholders will hopefully plan future research projects that align with patient priority areas with ongoing input and involvement from patient stakeholders. We will share findings in a wide variety of ways.
Funder: This project is funded through at Patient-Centered outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN-20209).
Questions? Interested in getting involved? Want to receive our e-newsletter? Email Marina Pearsall at firstname.lastname@example.org
Interested in learning more about research? PCORI has a series of great materials. Click here to view PCORI’s Research Fundamentals Videos and Frequently Asked Questions and here for their interactive PDF. Click here to read a blog about the Eight Principles of Patient-Centered Care.