I have had rheumatoid arthritis almost my entire life, but growing up I didn't know anyone else with RA, especially other kids and teens.
I often felt singled out, especially during gym class. It was the days before the internet and I had no one to go to for information and new ideas but my parents, doctor and occasional occupational therapist. As an awkward and self-conscious teen, I had many friends, but none who understood having a chronic illness or frequent pain and limitations. Even as a young adult, I've found that almost everything available on rheumatoid arthritis and arthritis in general is geared toward older adults or young children with Juvenile Rheumatoid Arthritis. Teens and college students are generally lumped in with adults or children, but there isn't much out there specifically for that age group.
That's why a recent study about the self-management needs of teens with RA struck me. The study, published in the January issue of Arthritis Care & Research, looked at what teens need for developing independence and self-management of their RA and if web-based programs might be acceptable.
For the study, self-management was defined as one's ability to manage symptoms, treatment, physical and psychological issues and lifestyle changes required to live with a chronic illness.
This was a very small study, about 36 Canadian students with Juvenile Idiopathic Arthritis (JIA), ages 12-20.
The research showed that the students were clear about describing the physical and psychosocial aspects of living with JIA on their daily lives and they were gradually learning to take control over the management of their arthritis from their parents and health care providers. They also wanted more disease information, disease management information, strategies to deal with social and psychological issues and social support including social and communication skills training. They saw the internet as a way to help them self-manage their disease.
The authors recommended communication skills and assertiveness training to enhance students' ability to actively participate in treatment decisions. They also recommended peer support such as monitored discussion boards, video clips of teens modeling self-management and problem solving. The researchers had not already developed web-based content for self-management. That will be left to a future study.
Reading the report made me think about this site.
Are there any teenagers or parents of teens with RA using this website?
If so, have you reached out to each other?
What pieces of this website do you find interesting and helpful?
What kinds of articles, links, information or chats are looking for?
How can we help teens and young adults with RA make positive connections with each other?
Please share your thoughts and ideas.
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Published On: February 22, 2008