Connect and Empower Caregivers: Improving Outcomes for Black Children with Medical Complexity
Organization: Wake Forest University Health Sciences
Primary Contact: Michelle White
Grant Amount: $471,049 for 20 months
Date Awarded:
Purpose
Black children comprise 14% of all children in the US but represent 22% of children with medical complexity (CMC)—those who have multiple chronic conditions and receive care from many different clinicians and specialists. Black CMC are hospitalized and visit the emergency room more often than other CMC.
Caregivers of Black CMC experience barriers to accessing care for their children due to systemic racism and disability-based discrimination. Research shows that Black patients and caregivers experience poorer communication with clinicians, including less patient-centered language, engagement in decision-making, and respect. Unfortunately, Black caregivers are underrepresented in the development of interventions designed to improve care for CMC and reduce the need for acute care.
The project team will (1) adapt an existing health care communication coaching and resource navigation program to the needs of Black caregivers of CMC using human-centered design, and (2) conduct a feasibility study to determine if the adapted intervention has the potential to be successful in promoting Black caregiver self-efficacy and reducing acute care use by Black CMC.
The academic project team will partner with community organizations to recruit Black caregivers for the study and center their voices at all stages of the project.
This grant builds on project activities supported by the Foundation from August 2025 through April 2026, when the principal investigator was at Duke University. To learn more, view the grant awarded to Duke University.