Evid Based Nurs 1:129 doi:10.1136/ebn.1.4.129
  • Qualitative

Discovering a sense of difference was the main experience of growing up with cystic fibrosis

 Question How do children with cystic fibrosis (CF) perceive the unfolding of the chronic illness experience?


Grounded theory.


Regional CF centre in south east US.


20 children who were 6–12 years of age (mean age 9 y, 60% boys) and had been diagnosed with CF by 3 years of age.


In 30–60 minute audiotaped interviews, children were asked to visualise their experiences of growing up with CF. They were asked to describe their earliest memory and to give advice to a child newly diagnosed with CF. Field notes documented personal characteristics, emotional response, and data collection conditions. Interviews were transcribed, coded, and analysed using the constant comparison method.

Main results

The central phenomenon of growing up with CF was discovering a sense of difference. 4 main themes emerged from children's accounts. Puzzling out the meaning described many children's memories of learning from their mothers that they had CF and the surprise they felt at not being like other children. …

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