Exploring the self-management needs of adolescents with arthritis

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Pediatric Rheumatology

Asking the experts: Exploring the self-management needs of adolescents with

arthritis

http://www3.interscience.wiley.com/cgi-bin/abstract/117870788/ABSTRACT

email: N. Stinson (jennifer.stinson@...)

*Correspondence to N. Stinson, Centre for Nursing & Chronic Pain

Program, Department of Anaesthesia, The Hospital for Sick Children, 555

University Avenue, Toronto, Ontario M5G 1X8, Canada

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 and 3 focus-group 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.