Transition Needs of Adolescents With CHD and Their Parents

Study Questions:

What are the needs of adolescents with congenital heart disease (CHD) and their parents during transition from pediatric to adult cardiac care?

Methods:

The authors used an exploratory design with qualitative methodology. Semi-structured interviews and content analysis of the transcripts identified categories of patient and parental needs about the transition process.

Results:

Analysis of the adolescent interview content revealed three categories of patient needs: change of relationships, knowledge and information, and daily living. Analysis of the parental interviews identified two categories of needs: change of relationships and daily living. Change of relationships had similar meaning in both patient and parental groups; the provider and clinic had been a consistent part of their lives since the child’s birth, and that was about to change. Concerns about the quality and compassion of the new provider mix with feeling of loss of the pediatric-provider relationship. This study nicely elucidated the different perspectives on transition and its effects on daily living. For the patients, it meant more responsibility for managing their condition and communicating with the medical provider. For the parents, the impact was of “letting go” of their child, feeling less needed, and worrying about the safety and security of their child. Both patients and parents expressed concern about the continuity of care after transition. Both groups expressed the importance of meeting the new provider and team, seeing the new facility, and receiving assurance of the adult provider’s familiarity with the patient’s history.

Conclusions:

Coordination between pediatric cardiology and adult CHD specialists is crucial to the success of transition. As important is the recognition of the role of parents as an information source for the adolescent and of the relationship between parent and child. The most effective information is individualized, perceived as relevant, and timely.

Perspective:

Transition is an increasingly important topic in cardiology because about 90% of children with CHD will live well into adulthood. Successful transition assures continuity of care, which promotes better adult CHD outcomes. Transition deserves the attention of both pediatric cardiology and adult CHD teams.

Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Congenital Heart Disease

Keywords: Adolescent, Child, Empathy, Family Relations, Heart Diseases, Heart Defects, Congenital, Parents, Parent-Child Relations, Transition to Adult Care


< Back to Listings