The dilemmas of parents of adolescents and young adults with congenital heart disease

OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood. DESIGN: A qualitative pilot study. SETTING: The physician practices of the pediatric cardiology service of a large university medical center. SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease. INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide. RESULTS: Our study has identified seven themes—the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family, and coping—with which parents have struggled throughout their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique. CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is “normal” for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions.