Growing up and living with cystic fibrosis - Everyday life and encounters with the health care and social services - A qualitative study

被引:36
作者
Gjengedal, E [1 ]
Rustoen, T
Wahl, AK
Hanestad, BR
机构
[1] Univ Bergen, Dept Publ Hlth & Primary Hlth Care, Sect Nursing Sci, N-5009 Bergen, Norway
[2] Oslo Univ Coll, Fac Nursing, Oslo, Norway
关键词
cystic fibrosis; normalization;
D O I
10.1097/00012272-200304000-00007
中图分类号
R47 [护理学];
学科分类号
1011 ;
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 in important strategy, a strategy that seems not to be fully understood by the helpers.
引用
收藏
页码:149 / 159
页数:11
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