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Qualitative Health Research, Vol. 17, No. 7, 884-892 (2007)
DOI: 10.1177/1049732307305883

Painful Childhood: Children Living With Juvenile Arthritis

Cornelia Guell

University of Edinburgh, United Kingdom

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.

Key Words: chronic illness • children • ethnographic research


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E. Giarelli, B. A. Bernhardt, R. Mack, and R. E. Pyeritz
Adolescents' Transition to Self-Management of a Chronic Genetic Disorder
Qual Health Res, April 1, 2008; 18(4): 441 - 457.
[Abstract] [PDF]