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Parent Perspectives on Family-Based Psychological Interventions for Congenital Heart Disease

Authors: Colette Gramszlo, Allison Karpyn, Abigail Demianczyk, Amanda Shillingford, Erin Riegel, Anne Kazak, Erica Sood

November 2019

Parents of children with congenital heart disease (CHD) want individualized, formal psychosocial support during their children’s in-hospital stays, according to a new study published in theĀ Journal of Pediatrics. The study by researchers from Nemours Children’s Health System outlines ways to optimize mental health for parents and mitigate the impact of stress on long-term outcomes for children and families. “The post-surgical recovery period for children with CHD is an incredibly stressful time for parents. Uncertainty, communication challenges, and limited opportunities to engage in self-care can impact their mental health,” said Erica Sood, PhD, senior author and pediatric psychologist within the Nemours Cardiac Center at Nemours/Alfred I. duPont Hospital for Children. “This research helps us understand how we can deliver the psychosocial supports parents need during stressful hospitalizations and after hospital discharge.” CHD is the most common birth defect, often requiring extensive cardiac surgery in a child’s first year of life. Children with CHD are at high risk for neurodevelopmental and behavioral impairments, and researchers say promoting parental mental health can support positive outcomes for children with CHD and their families. Using qualitative and quantitative methods to determine parental preferences for the goals and structure of psychosocial programs, researchers interviewed 34 parents (20 mothers and 14 fathers) of 21 young children with CHD. Parents indicated that they want their child’s medical team to support their psychosocial needs at each stage of care. Parents wanted psychosocial support to meet their unique needs through individualized programs delivered by nurses, physicians, psychologists, social workers, and peer mentors.

Authors: Colette Gramszlo, Allison Karpyn, Abigail Demianczyk, Amanda Shillingford, Erin Riegel, Anne Kazak, Erica Sood