Painful childhood: Children living with juvenile arthritis

被引:30
作者
Guell, Cornelia [1 ]
机构
[1] Univ Edinburgh, Edinburgh EH8 9YL, Midlothian, Scotland
关键词
chronic illness; children; ethnographic research;
D O I
10.1177/1049732307305883
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
In this article the author explores the everyday life and coping of children living with juvenile arthritis. The author considered the children as experts on their illness who can give valuable insights into illness management from a patient's perspective. This is in contrast to most research, which lets others, such as caregivers, speak in the place of children. She used an ethnographic approach with open-ended interviews and participant observation to capture the complexity of chronic illness's impact on everyday life. Results of the study indicate that living with juvenile arthritis entails a constant taking control over one's body and achieving normality in life. These children must negotiate between their protected status of being a sick child and their immense responsibility in illness management. The author suggests that existing research on adult chronic illness has only limited relevance to understanding children's illness experience and that further research with children is needed.
引用
收藏
页码:884 / 892
页数:9
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