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Adolescents learned self-management of arthritis by acquiring knowledge and skills and experiencing understanding from social support

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J N Stinson

Dr J N Stinson, University of Toronto and Hospital for Sick Children, Toronto, Ontario, Canada; [email protected]

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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