New Study Helps Understand Childhood Arthritis Experiences to Improve Care
October 19, 2023 (Vancouver) Arthritis can affect people of all ages. Juvenile Idiopathic Arthritis (JIA) is the most common rheumatic disease in children and causes short and long-term disability. A new study conducted by an Arthritis Research Canada’s team of scientists aimed to understand the experiences of youth with JIA and their parents managing this disease to help improve patient and family-centred care.
This qualitative study collected and analyzed data from interviewing children between 12 and 18 years of age and their parents. The research found that arthritis impacted different areas of the participants’ lives, from their ability to perform physical activities to affecting the child and parent’s mental health.
As for taking care of arthritis, this study found that previous experiences – such as fear of needles and medication side effects- affected how parents and youth approach management decisions. Additionally, when arthritis is very severe, urgency can override other considerations.
Lastly, the mutual respect and trust with their rheumatology team was fundamental for both children and parents, as well as being able to be part of the treatment decision-making process and advocating for themselves.
“For parents and youth with arthritis, living life well and fully is the central focus, and managing arthritis happens within that,” said Dr. Deborah Marshall, senior scientist at Arthritis Research Canada. “Therefore, it was critical to understand parent and youth experiences. The findings reinforce the need to incorporate what matters most to children and their families in their life context when determining how to manage JIA.”
To learn more about this study, click here.
ABOUT ARTHRITIS RESEARCH CANADA:
Arthritis Research Canada is the largest clinical arthritis research institution in North America. Our mission is to transform the lives of people living with arthritis through research and engagement. Arthritis Research Canada’s scientific director, Dr. Diane Lacaille is leading a team of over 100 researchers, trainees and staff whose life-changing research is creating a future where people living with arthritis have the knowledge and tools to triumph over pain and disability. Arthritis Research Canada is now conducting arthritis research from coast to coast with centres in British Columbia, Alberta, Quebec, and Nova Scotia and scientists affiliated with seven major universities: University of British Columbia, Simon Fraser University, University of Calgary, Université Laval, McGill University, Université de Montréal, and Dalhousie University. Arthritis Research Canada is leading research aimed at preventing arthritis, facilitating early diagnosis, finding new and better treatments, and improving quality of life.
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