A Psychosocial Care Model for Families Affected by Congenital Heart Disease*

Abstract

OBJECTIVES: To develop a model of family-based psychosocial care for congenital heart disease (CHD). DESIGN: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals. SETTING: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection. SUBJECTS: Geographically diverse sample of 100 parents (72 mothers and 28 fathers) of young children with CHD. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process. Three broad themes corresponding to pillars of family-based psychosocial care were identified: pillar 1) parent partnership in family-integrated medical care, pillar 2) supportive interactions focused on parent and family wellbeing, and pillar 3) integrated psychosocial care and peer support for parents and families. Each pillar was supported by subthemes corresponding to specific intervention strategies. Most parents described the need for intervention strategies across multiple pillars, with almost half reporting needs across all three pillars of psychosocial care. Parents’ preferences for psychosocial support changed over time with changes to their child’s medical status and across care settings (e.g., hospital, outpatient clinic). CONCLUSIONS: Results support a model of family-based psychosocial care that is multidimensional and flexible to meet the needs of families affected by CHD. All members of the healthcare team play an important role in providing psychosocial support. Future research incorporating components of implementation science is needed to promote uptake of these findings, with the goal of optimizing family-based psychosocial support in the hospital setting and beyond.