Growing Up With Congenital Heart Disease: A Qualitative Research Study of Parents’ and Clinicians’ Experiences and Perspectives

Background

Families of children with congenital heart disease (CHD) may experience a range of challenges, such as interactions with the medical system, parental stress, and the child’s physical activity (PA) participation. The aim of this study is to explore how those with CHD and their families experience childhood based on parents’ and clinicians’ experiences and perspectives. The ultimate goal is to identify lacking supports (if any) and when children and their parents may be most amendable to receive them.

Methods

We recruited parents/guardians of children with CHD and clinicians involved in care provision for children with CHD. Participants completed life story interviews, with key events from parent/guardian interviews mapped to a timeline. Data were analysed using reflexive thematic analysis.

Results

Twelve parents of 11 children with CHD, with diagnoses spanning from mild to complex, and 12 clinicians (42% paediatric cardiologists, 33% nurses, and 25% other) were interviewed. Three themes were identified: (1) overwhelmed—the relationship between parents and the health care system, (2) trauma and resilience—the emotional side to raising a child with CHD, and (3) PA … more than just fun. Subthemes explored challenges of education, communication, and living away from the hospital, traumatic experiences, the need for parental support, different approaches to PA counselling, providing role models, barriers to successful PA promotion, and tools for improvement.

Conclusions

This study highlights the need for changes to how and when information is communicated to families of children with CHD and an increase in the number and types of support mechanisms available.