Growing up with a Chronic Health Condition: A Model of an Ordinary Lifestyle

Abstract

This descriptive exploratory study was designed to gain insight into how young people experience growing up with cystic fibrosis (CF). The retrospective longitudinal, life-history method was used to generate grounded theory from 60 accounts by 21 informants (10 with CF and 11 of their family members). Data from repeated in-depth interviews were analyzed using the constant comparative method. An ordinary lifestyle model emerged. Youngsters with CF maintained a dynamic balance between their own perceptions of the disease, others' perceptions of them, and the influence of contextual factors. The disease was found to be of little centrality to their psychosocial lives, and their illness perception followed developmental changes. Managing disease-related information was related to the perceived ability of the listeners to deal with the information and the situational context. The model was compared with competing models, and implications for health care practice and research are discussed.