A life less ordinary: growing up and coping with congenital heart disease

There is growing evidence to suggest that advances in the surgical treatment of congenital heart disease should be accompanied by assessments and interventions which attend to the psychosocial needs of adolescents. As yet, these needs are imperfectly understood. We interviewed 37 adolescents using a semi-structured protocol based on Leventhal’s Illness Representation model. In-depth analysis of the resulting data was conducted using the well established ‘framework’ method. Five key themes emerged from this analysis: difficulty coping with the presence of disease, physical limitation, social exclusion, discrimination and bullying, and hopes for life improvement. Together, these themes develop a wider picture of the experience of congenital heart disease through childhood and adolescence. They identify an opportunity for health professionals to meet the educational and psychological, as well as the physiological, needs of this particular patient group as part of an overall approach to improving their quality of life.