Growing up with a chronic disease: Life histories of adolescents and young adults with cystic fibrosis

This descriptive exploratory study was designed to gain insights on the experience of growing up with a chronic health disease, such as cystic fibrosis (CF), from the insider\u27s perspective of adolescents and young adults with CF. Based on topical life histories of these informants the aims of the study were to describe and analyze: the centrality of the disease in the lives of the young individuals with CF, the way they constructed others\u27 perception of them, and the ways they managed disease related information and medical regimens. The retrospective, longitudinal, life history method was used in this study to generate grounded theory from data provided by ten adolescents and young adults with CF aged 16 to 25 years, and ten of their kin. A series of in-depth repeated interviews with each informant comprised the major source of data, complemented by medical records and personal documents. The constant comparative method of data analysis was employed in this study to analyze the data with the assistance of the microcomputer program, The Ethnograph. The illness perception of the young individuals with CF was found to follow developmental changes from childhood to adulthood. Four major strategies of managing disease related information emerged: visibility, direct telling, silent telling and concealment. The choice of a specific strategy was related to the audience\u27s ability to deal with the information and the situational context. An ordinary model emerged from the present analysis proposing that individuals with chronic health conditions lead ordinary lives. Their disease was of little centrality and relevance to their psycho-social lives and became central only during defined episodes, such as hospitalization or the death of a friend with CF. The emerged ordinary model was compared to three competing models: Goffman\u27s deviance model, the medical model and the minority group model. The ways young individuals with CF managed disease related information and medical regimens were based on a dynamic balance between their own perceptions of the disease, others\u27 perceptions of them and the influence of contextual factors