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J N Stinson
Dr J N Stinson, University of Toronto and Hospital for Sick Children, Toronto, Ontario, Canada; jennifer.stinson@sickkids.ca
QUESTION
What are the self-management needs of adolescents with juvenile idiopathic arthritis (JIA) and the acceptability of a web-based self-management programme?
DESIGN
Descriptive exploratory qualitative study.
SETTING
4 rheumatology clinics in paediatric tertiary care centres in Canada.
PARTICIPANTS
36 adolescents 12–20 years of age (mean age 15 y, 67% women) who had JIA. Exclusion criteria were major cognitive impairment and comorbid medical or psychiatric illness.
METHODS
Adolescents participated in individual semi-structured interviews lasting 20–40 minutes (n = 25) or focus groups lasting 40–75 minutes (n = 11). Interviews were audiotaped, transcribed verbatim, and analysed for themes using an iterative process.
MAIN FINDINGS
Adolescents developed self-management strategies by “letting go” of parents or care providers who had previously managed their disease. 2 main strategies were acquiring knowledge and skill to manage the disease and experiencing understanding through social support. (1) Acquiring knowledge and skill to manage the disease involved …
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