Through the Looking Glass: Children's Perceptions of Growing Up with Cystic Fibrosis

Abstract

This qualitative study used a grounded theory approach to explore the unfolding of the chronic illness experience for children during middle childhood. A purposive sample of 20 children (6-12 years) with cystic fibrosis (CF) were interviewed. Discovering a sense of difference was found to be the central phenomenon that described the experience of having CF during the middle childhood years. Four central themes emerged in the stories of these children: (a) puzzling out the diagnosis, (b) being teased and picked on, (c) telling others, and (d) keeping up. The study concluded that interventions must focus on the psychosocial demands made on children with CF along their course of development. By designing interventions around meaningful outcomes in their daily lives, we will help children with CF find ways to feel normal while adhering to treatment regimens, thereby helping to improve the quality of their lives.