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J Child Health Care. 2012 Jun;16(2):124-40. doi: 10.1177/1367493511430679. Epub 2012 Feb 3.

Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents.

Author information

1
The Hospital for Sick Children and University of Toronto, Canada. jennifer.stinson@sickkids.ca

Abstract

The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.

PMID:
22308541
DOI:
10.1177/1367493511430679
[Indexed for MEDLINE]

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