Abstract
This study explores the lived experience of adolescents who had chronic conditions, along with experience of their parents. Accumulated narrative data by semi-structured interviews were analyzed using the modified grounded theory approach adapting Corbin & Strauss' Chronic Illness Trajectory Framework. Eighteen adolescents (12-19 years old; 11 of congenital heart disease, 7 of insulin-dependent diabetes) and their parents were interviewed. For 6 cases, the adolescent, the father, and the mother was interviewed separately. Findings of the qualitative analysis for the chronic condition trajectories of families showed the core category "adolescents and parents find the meaning of life in the suffering they share". Five phases of the chronic condition trajectory were extracted: (1) serious crossroads, (2) nejire (feeling trapped in a vicious circle), (3) coming to grips with their suffering, (4) meshing of the adolescent and the parents lives, and (5) spinning the future. The narratives in this study show that adolescents and their parents tend to go through multiple phases in their illness trajectories. Through this process, some of them find "the meaning of life" in their suffering that they share. This research suggests that adolescents and their parents not only endure suffering and have sympathy for each other, but that at least for some, ultimately they find comfort, ease, and happiness. Nurses need to understand the structure of such families' illness trajectories, and be knowledgeable about each phase. Moreover, nurses need to assess adolescents and their parents to determine which phase they are experiencing in their trajectories. Through such assessment, nurses can better interpret and appropriate such families' experiences, and thus they can provide more appropriate and effective nursing support.
