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

Journal Article (Journal Article)


To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood.


A qualitative pilot study.


The physician practices of the pediatric cardiology service of a large university medical center.


Eight parents of adolescents and young adults with congenital heart disease.


Each parent was separately interviewed with use of a semistructured interview guide.


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 through-out their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique.


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.

Full Text

Duke Authors

Cited Authors

  • Sparacino, PS; Tong, EM; Messias, DK; Foote, D; Chesla, CA; Gilliss, CL

Published Date

  • May 1997

Published In

Volume / Issue

  • 26 / 3

Start / End Page

  • 187 - 195

PubMed ID

  • 9176686

Electronic International Standard Serial Number (EISSN)

  • 1527-3288

International Standard Serial Number (ISSN)

  • 0147-9563

Digital Object Identifier (DOI)

  • 10.1016/s0147-9563(97)90055-8


  • eng