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Biographical ruptures and flows in the family experience and trajectory of children with cystic fibrosis

Abstract

Biographical disruption (BD) became a core concept of sociological studies on the chronic illness experience by showing how this event can be strongly affected by ruptures in the ways of living and organizing the biographical trajectory through narratives. Critical reviews have pointed out that the widespread use of this concept was not sufficiently attentive to its analytical limits, e.g. addressing experiences of children with genetic diseases, when biographic flows (BF) rather than BD would be probably found. In this paper, we employed the concepts of BD and BF to analyze the relationships between the illness trajectories of children with cystic fibrosis (CF) and the experiences of their parents, taking into account the narratives about their histories and family contexts, drawn from semi-structured interviews with 10 children with CF and 14 family members. The results pointed to potentialities and limits of the concepts of BD and BF for the analysis undertaken in this study. We conclude that both concepts can be applied to the analysis of family experience involving child genetic diseases, provided that this occurs in a critical and sensitive way to subjects and contexts investigated, keeping in mind the more broader theoretical concerns.

Key words
Illness behavior; Medical sociology; Personal narratives; Genetic diseases; Child

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