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.

Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness

“…It makes chronically ill children depend on their parents without autonomy [21]. Also, adolescents with chronic illness began to feel guilty after recognizing their parents' suffering from their chronic illness [22]. Therefore, we assert that the adolescents with chronic illness might be more affected by negative parenting style than would the adolescents without chronic illness.…”

School-related adjustment in children and adolescents with CHD

“…9,17 They tend to prefer not to tell others about their disease 17 because they fear being pitied. 9 Therefore, it is difficult to build a relationship with peers; this is a problem because establishing close and meaningful relationships with peers is an important developmental task for adolescents. 18 A lack of such intimate peer relationships may result in feelings of loneliness, defined as the negative emotional response to a discrepancy between one's desired and actual social network.…”

“…After entering school, children and adolescents with CHD realise that they differ from their peers because they may be excluded from certain physical activities such as gym class. 9 In addition, most children and adolescents lacked knowledge about their disease, because healthcare providers gave information about their disease only to their parents. 10 Feeling different from their peers and a lack of knowledge about CHD make adolescents hesitate to disclose their disease to friends in school.…”

Experiences of Thai individuals awaiting coronary artery bypass grafting: A qualitative study

“…Uncertainty has been reported in individuals who had undergone surgical repair with multiple and complex corrections (Lee & Kim, ). Moreover, uncertainty and fear about the future have been identified as the greatest concerns among patients waiting for CABG surgery (Hawley, ).…”