Exploring health-related experiences of children and young people with congenital heart disease

OBJECTIVE: To determine the health-related experiences of children with congenital heart disease. DESIGN: Qualitative, semi-structured interviews. PARTICIPANTS: A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. RESULTS: The main themes identified included: physical limitations of their condition; restrictions; attitudes of others; choices about information; coping with life and privacy. CONCLUSIONS: This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.