Dr. Stevens holds the Signy Hildur Eaton Chair in Pediatric Nursing Research at the Hospital for Sick Children.
Asking the experts: Exploring the self-management needs of adolescents with arthritis
Article first published online: 28 DEC 2007
Copyright © 2008 by the American College of Rheumatology
Arthritis Care & Research
Volume 59, Issue 1, pages 65–72, January 2008
How to Cite
Stinson, J. N., Toomey, P. C., Stevens, B. J., Kagan, S., Duffy, C. M., Huber, A., Malleson, P., McGrath, P. J., Yeung, R. S. M. and Feldman, B. M. (2008), Asking the experts: Exploring the self-management needs of adolescents with arthritis. Arthritis & Rheumatism, 59: 65–72. doi: 10.1002/art.23244
- Issue published online: 28 DEC 2007
- Article first published online: 28 DEC 2007
- Manuscript Accepted: 15 JUN 2007
- Manuscript Received: 24 JAN 2007
- Canadian Arthritis Network
- Canadian Nurses Foundation/Hospital for Sick Children/Canadian Institutes of Health Research Doctoral Fellowship
- Hospital for Sick Children Clinician Scientist Training Fellowship
- Premier's Research Excellence award
- Canadian Institutes for Health Research and the Montreal Children's Foundation (Fast Foundation)
- Sessenwein Research award from McGill University
To explore the self-management needs of adolescents with juvenile idiopathic arthritis and the acceptability of a Web-based program of self-management aimed at improving quality of life.
A descriptive qualitative design was used. A convenience sample of 36 adolescents (male and female) who varied in age, disease onset subtype, and disease severity were recruited from 4 Canadian tertiary care pediatric centers. Individual (n = 25) and 3 focus-group (n = 11) interviews were conducted with adolescents using semistructured interview guides. After each interview session, the audiotaped interview data were transcribed verbatim. NUD*IST 6.0 was used to assist with the sorting, organizing, and coding of the data. Data were organized into categories that reflected emerging themes.
Adolescents articulated how they developed effective self-management strategies through the process of “letting go” from others who had managed their illness (health care professionals, parents) and “gaining control” over managing their illness on their own. The 2 strategies that assisted in this process were gaining knowledge and skills to manage the disease and experiencing understanding through social support. Five further subthemes emerged around skills to manage the disease, including knowledge and awareness about the disease, listening to and challenging care providers, communicating with the doctor, managing pain, and managing emotions.
Adolescents were united in their call for more information, self-management strategies, and meaningful social support to better manage their arthritis. They believed that Web-based interventions were a promising avenue to improve accessibility and availability of these interventions.