Exploring one's own human condition: adults affected by cystic fibrosis.
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.
Huyard
Caroline
C
Groupe de Sociologie Politique et Morale, Ecole des Hautes Etudes en Sciences Sociales, Paris, France.
D000223:Adaptation, Psychological; D000328:Adult; D003550:Cystic Fibrosis / Q000503:physiopathology / Q000523:psychology*; D005260:Female; D005602:France; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D012649:Self Concept