Abstract
BACKGROUND: Although heart transplantation has been offered for 2 decades to prolong the lives of children with end-stage heart disease, we know little about how these children view their lives, how they deal with their complicated medical regimen, and how the transplantation affects their quality of life. OBJECTIVES: To examine the quality of life of school-aged heart transplant recipients and to identify the key factors they believe affect their quality of life. DESIGN: Focused ethnography. PARTICIPANTS AND SETTING: Eleven children (7 girls, 4 boys) between the ages of 6 and 12 years (mean 9.1 years) who had received a transplant at least 6 months earlier were recruited from a large children's hospital. DATA COLLECTION AND ANALYSIS: Semistructured interviews were conducted in private locations. Data were analyzed using content analysis and constant comparison. RESULTS: The children described their quality of life as "mostly good," yet reported that life was "easy and not easy." Ten factors that affected the children's quality of life were Doing Things/Going Places, Favorite School Activities, Hard Things About School, Being With Friends and Family, Doing Things/Going Places With Friends and Family, Interactions With Friends and Family, Taking Care of My Heart, My Body, The Transplant Team, and Other Health Problems. Based on similarities in meaning, these factors were combined into 3 themes: Doing What Kids Do, Being With Friends and Family, and Being a Heart Transplant Kid. The themes and factors can provide useful direction for interventions aimed at improving the quality of life for children after heart transplantation.