The life experiences of Korean children and adolescents with complex congenital heart disease: A qualitative study

Abstract

This exploratory study analyzed the life experiences of Korean children and adolescents with complex congenital heart disease in a sociocultural context and undertook in-depth interviews. Participants were 10 patients who ranged in age from 14 to 22 years, who were recruited at a hospital in Seoul, Korea. Our content analysis showed that the participants were initially unaware of the true nature of their conditions. After entering school, they realized that they were different from peers because of their physical limitations and their parents' overprotectiveness. Generally, health providers tend to convey information about congenital heart disease to parents, and not the patients. Therefore, most of our participants lacked knowledge about their disease and its management, and tended to have feelings of isolation and guilt. Healthcare providers of children and adolescents should provide disease and management information not only to parents, but also to patients, and should set aside specific times for communication with patients with complex congenital heart disease.