Exploring One's Own Human Condition: Adults Affected by Cystic Fibrosis

Abstract

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.

‘A tale of two cases:’ The health, illness, and physical activity stories of two children living with cystic fibrosis

“…Admi (1996) also found that young people with CF strive to define themselves as normal and do not dwell on death until negative events force the body into stark relief and threaten normalcy. Huyard (2008) underscored similar findings in adults with CF. If the patient has no symptoms at the time of diagnosis, the disease's label is rendered irrelevant and normalcy is not compromised.…”

Parent and Youth Priorities During the Transition to Adulthood for Youth With Special Health Care Needs and Developmental Disability

“…She found that youth with complex healthcare needs described multiple transitions that occurred simultaneously as they moved to adult-oriented services, including the need to reestablish trust in providers, assume responsibility for self-management activities in multiple realms, and learn to navigate within an adult culture where expectations were uncertain and less parent-centered. Huyard 14(pp540) interviewed adults with Cystic Fibrosis and found that they had gradually experienced a “critical internalization”, in which they learned how to manage their illness, accepting or rejecting medical advice based on their responses, and concluding that having a genetic condition was not the same as being ill.…”

The lived experience of adults with cystic fibrosis: what they would tell their younger selves about the gut

“…Knowledge and understanding developed gradually as an accumulation of learning over time, as described previously . Families, the CF team and peers with CF played important roles in informing participants learning.…”

“…Previous research has explored adults experience of living with CF , although not specifically in relation to the gut. Where this has been carried out in other chronic GI‐related conditions, patients’ perspectives have helped inform clinicians understanding and practice .…”