Objectives: To identify parents' preferences for goals and structure of intervention programs to support the psychosocial needs of families impacted by congenital heart disease (CHD).
Study design: Information about parent priorities for psychosocial programs was obtained in this mixed-methods study conducted at a pediatric hospital in the Mid-Atlantic region of the US. Participants were parents (N = 34; 20 mothers, 14 fathers) of children with CHD between the ages of 1 and 3 years who had cardiac surgery at less than 6 months of age. Qualitative data were excerpts from semistructured interviews. Quantitative data were participant choices regarding their ideal psychosocial program resulting from a card sort.
Results: Parents reported that psychosocial interventions should support partnership in their child's care, promote self-care, facilitate communication with providers, prepare parents for challenges after hospitalization, provide education about child neurodevelopment, and help parents engage social support. Parents reported needing formalized support across care, brief intervention models, in-person individualized or small group support, and involvement of multidisciplinary providers and peer mentors in the delivery of interventions.
Conclusions: Parents of children with CHD need psychosocial interventions that empower them to act as primary caregivers and effective advocates for their child. Individualized, formalized, and multidisciplinary approaches to psychosocial care are necessary to best accommodate the dynamic stressors related to parenting a child with CHD and may mitigate the impact of parent mental health problems on child outcomes.
Keywords: congenital heart disease; multidisciplinary care; parental mental health; pediatric cardiac intensive care; psychosocial intervention.
Copyright © 2019 Elsevier Inc. All rights reserved.