Access to Care
Community-informed cardiac care and support
Congenital heart disease (CHD) is the most common birth defect. Receiving a prenatal CHD diagnosis is stressful for parents and requires additional doctors’ visits, careful monitoring, birth planning, and can require multiple surgeries into childhood. There is a lot to digest and a lack of support outside the doctor’s office can add additional stressors, impacting the health of the whole family.
Parents of children who’ve gone through these experiences offer valuable advice and comfort to families facing a new diagnosis. Leveraging that support, Erica Sood, PhD, pediatric psychologist, Nemours Children’s Cardiac Center and Center for Healthcare Delivery Science, worked with parents to develop a program called HEARTPrep — an innovative, virtually-delivered psychosocial intervention for parents of babies with CHD.
The parents served as study team members and worked to identify unmet needs, make recommendations for psychosocial and neurodevelopmental care, and develop interventions to improve outcomes. The program, made possible by a Delaware Clinical and Translational Research (DE-CTR) ACCEL grant known to develop partnerships between community members and researchers, is currently being piloted at Nemours Children’s Hospital, Delaware.