"I've never not had it so I don't really know what it's like not to": Nondifference and biographical disruption among children and young people with cystic fibrosis

Citation

Williams B, Corlett J, Dowell J, Coyle J & Mukhopadhyay S (2009) "I've never not had it so I don't really know what it's like not to": Nondifference and biographical disruption among children and young people with cystic fibrosis. Qualitative Health Research, 19 (10), pp. 1443-1455. https://doi.org/10.1177/1049732309348363

Abstract
The relevance of biographical disruption and loss of self for children and young people is unclear, particularly in cases of congenital illness such as cystic fibrosis, where no prior period of wellness, stability, or perceived normality might exist. We explored the meaning, importance, and forms of maintenance of ideas of normality among 32 children and young people with cystic fibrosis. We examine the ways in which normalcy is produced, maintained, and threatened, and discuss the implications for the applicability and relevance of these traditional sociological concepts. Analysis of children's and young people's accounts resulted in a conceptualization of four forms of normalcy based on personal and social definitions and audiences. Biographical disruption appeared relevant but in a more nuanced form than its usual conceptualization when applied to adult populations. Maintaining normality within the family resulted in continual biographical revision in anticipation of future illness trajectory and life course.

Keywords
adolescents; children; chronic illness; cystic fibrosis; sociology; Cystic fibrosis

Journal
Qualitative Health Research: Volume 19, Issue 10