Asking the experts: exploring the self-management needs of adolescents with arthritis

Abstract

Objective: 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.

Methods: 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.

Results: 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.

Conclusion: 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.