Adolescents With Congenital Heart Disease and Their Parents: Needs Before Transfer to Adult Care

Abstract

Background: Patients with congenital heart disease (CHD) are in need of lifelong healthcare. For adolescents with CHD, this transfer to adult-care clinic can be difficult.

Objective: The aim was to identify and describe the needs of adolescents with CHD and their parents during the transition before transfer to adult cardiologic healthcare.

Methods: This study has an exploratory design with a qualitative approach, where 13 adolescents with CHD and their parents (n = 12) were individually interviewed. The interviews were analyzed with content analysis.

Results: The analysis of the adolescents' interviews resulted in 3 categories: change of relationships, knowledge and information, and daily living. The theme that emerged depicting the meaning of the categories found was Safety and control, indicating needs of continuity, knowledge, and taking responsibility. Analysis of the parents' answers gave 2 categories: change of relationship and daily living. The theme that emerged was safety and trust, indicating needs of continuity and shifting responsibility.

Conclusions: The transition must be carefully planned to ensure that adolescents can master new skills to manage the transfer to adult cardiologic healthcare. A structured program may facilitate and fulfill the needs of the adolescents and their parents, taking into consideration the aspects of trust, safety, and control. However, the content and performance of such a program must also be examined. We plan to undertake an extensive research project in the area, and this study will be a baseline for further research.