The journey through school for children with cystic fibrosis : an interpretive phenomenological analysis

Abstract

This study set out to explore the experiences of children making their way through school with a diagnosis of Cystic Fibrosis. Cystic Fibrosis is a chronic illness which requires a rigorous treatment regimen and for which there is no cure. It is a recessively inherited disorder which affects multiple organ systems and involves a life expectancy of approximately 40 years. It is the most common life-threatening disorder in the Caucasian race (Wennstrom et al., 2011) and the incidence in Ireland is the world’s highest (Farrell, 2008). The aim of the study was to explore identity construction among these children with a view to establishing whether or not they consider themselves to be disabled and to have a disability. This involved accessing their self-theories in relation to a series of issues, the main focus being each child’s fundamental sense of self. Such a focus was considered an appropriate goal in view of the fact that learning who one is and where one fits into the world is a core preoccupation among school-age children (Erikson, 1968, 1982). In addition, the construct of identity has particular relevance in the context of a chronic illness. Issues relating to identity and to disability were ascertained by drawing on the relevant literatures in psychology and sociology. Given that the focus was on the children’s life-worlds, the methodology chosen for this study was Interpretative Phenomenological Analysis. Using a set of questions devised on foot of the literature review and covering five domains of enquiry, four children, recruited through the Cystic Fibrosis Association of Ireland and living in different parts of the country, comprised the research sample. Analysis of their responses revealed that the identity construction process is complex and that the issue of disability remains an empirical question requiring additional investigation.