Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents.
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.
The Hospital for Sick Children and University of Toronto, Canada. jennifer.stinson@sickkids.ca
Jennifer N
JN
Stinson
Brian M
BM
Feldman
Ciaran M
CM
Duffy
Adam M
AM
Huber
Lori B
LB
Tucker
Patrick J
PJ
McGrath
Shirley Ml
SM
Tse
Ross
R
Hetherington
Lynn R
LR
Spiegel
Sarah
S
Campillo
Susanne
S
Benseler
Navreet
N
Gill
Meghan E
ME
White
Natalie
N
Baker
Abi
A
Vijenthira
D000328:Adult; D001171:Arthritis, Juvenile / Q000523:psychology / Q000628:therapy*; D002648:Child; D005260:Female; D017144:Focus Groups; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010290:Parents / Q000193:education*; D010353:Patient Education as Topic / Q000379:methods*; D015397:Program Evaluation; D036301:Qualitative Research; D012944:Social Support