Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Jointly Managing Arthritis: Information Needs of Children with Juvenile Idiopathic Arthritis (JIA) and Their Parents.
Stinson4, Jennifer, Feldman5, Brian M., Duffy3, Ciaran, Huber2, Adam, Tucker1, Lori, McGrath2, Patrick, Tse5, Shirley M.
This study explores the information needs of children with JIA and their parents in order to develop a web-based program of disease-specific information, management skills, and social support aimed at improving their quality of life.
A qualitative study design was used. A purposive sample of children (n=41, 73% female) between 8 and 11 years of age diagnosed with JIA and one of their parents (n=48), was recruited from four Canadian tertiary care centers (Vancouver, Toronto, Montreal, Halifax). Parent-child dyad interviews (n=29) and 4 separate child and parent focus group interviews were conducted using semi-structured interview guides. Audio-taped interviews were transcribed verbatim. Nvivo 8.0 (QSR, 2009) was used to assist with sorting, organizing and coding data. The thematic analysis was a collaborative and iterative process. Data were organized into categories that reflected the emerging themes.
Preliminary findings uncovered two major themes: "Living with Arthritis" and "Jointly Managing Arthritis". Major subthemes for "Living with Arthritis" were: pain, maintaining friendships, communicating about the disease, and worry/distress. Two further sub-themes were found under worry/distress: parents expressed concern about their child's future, and children wondered "why me?" Two sub themes were identified under "Jointly Managing Arthritis" where managing JIA was viewed as being a joint responsibility between the parent and child. The first sub theme, "desire for information and disease management strategies", highlighted the need for further information on JIA, medications, tests and procedures, managing pain and emotions, and advocacy and communication strategies. The second sub theme was staying strong and seeking social support. Participants explained that staying strong as a family was essential, and they also wanted the opportunity to connect with others with JIA to help them feel that they are not alone. Finally, children and their parents felt that a web-enabled program of JIA information, disease management strategies and opportunities for social support would be the ideal way to meet their information needs.
In order to jointly manage JIA, children and their parents expressed the need for disease-specific information, management strategies, and social support. Web-enabled treatments are a promising avenue to improve the accessibility and availability of JIA information and disease management strategies for children and their parents. Findings from this study will be used to develop and test an on-line program to help children and their parents jointly manage arthritis.
To cite this abstract, please use the following information:
Stinson, Jennifer, Feldman, Brian M., Duffy, Ciaran, Huber, Adam, Tucker, Lori, McGrath, Patrick, et al; Jointly Managing Arthritis: Information Needs of Children with Juvenile Idiopathic Arthritis (JIA) and Their Parents. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :1408