Growing up and living with cystic fibrosis: everyday life and encounters with the health care and social services--a qualitative study.

摘要

The purpose of this qualitative study was to illuminate experiences of growing up and living with cystic fibrosis (CF). The patients' and their families' encounters with health care and social services were of particular interest. Four focus groups (adults with CF and parents of children with CF) were conducted. Three main themes emerged from the analysis: "From uncertainty to certainty," "A demanding but normal life," and "A wish for continuity, stability, and respect." As also documented by other studies on the chronically ill, normalization seems to be an important strategy, a strategy that seems not to be fully understood by the helpers.