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Exploring One's Own Human Condition: Adults Affected by Cystic FibrosisEcole des Hautes Etudes en Sciences Sociales, Paris, France Drawing on a sample of 11 interviews in France with adults affected by cystic fibrosis, and applying grounded-theory analysis, I describe illness-related learning processes in the case of persons affected by a genetic disorder with early onset. Three outcomes might be of interest to health professionals. First, the diagnosis of genetic disease does not imply that the patients consider themselves to be ill. The meaning of being affected by a genetic disorder has to be understood. Second, these patients gain a particular knowledge of their illness that helps them undertake or avoid certain actions to achieve goals they consider important, through a process I call "critical internalization." Third, these patients exhibit similarities with Freidson's classical medical practitioner's clinical mind, although health is not at all their main priority.
Key Words: illness experience • health education • cystic fibrosis • genetic disease • learning process • chronic illness • health behavior
Qualitative Health Research, Vol. 18, No. 4,
535-544 (2008) |
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