Research Study Opportunity – How do you bounce back from JIA pain?

07 February 2023

Please note: This survey has now closed and will not be receiving any further responses. Thank you to all those who participated.

Are you between 13-18 years old and living with juvenile idiopathic arthritis (JIA)? Or are you a parent or a caregiver of a 13–18-year-old with JIA? Researchers are looking for YOUR guidance on understanding what it takes to be resilient and bounce back from JIA pain.

What we know: Pain and mental health concerns are some of the top issues that many youth with JIA and their families face. In the face of these challenges; however, many families continue to describe strength and resilience.

“She handles everything that she goes through with so much strength… Her disease doesn’t define her, she defines it.”

Mother of a 16-year-old with JIA

What we WANT to know: Canadian researchers from the It Doesn’t Have to Hurt research team and Cassie + Friends have set out to better understand what it takes to be resilient so that health care providers can better support other families coping with JIA pain and mental health challenges.

What does this study involve? Researchers are looking for 319 youth and parent pairs to participate in a one-time online study. Participants will be asked questions about their/their child’s arthritis, pain, and well-being. The online survey will take about 40-60 minutes to complete, and a token of appreciation will be provided as a thank you to participants for sharing their experiences.

Who is eligible: Youth between 13-18 years of age with a diagnosis of JIA and their caregivers. Youth are eligible whether they are currently experiencing pain, have in the past, or have not experienced any at all. Youth-parent pairs must have access to the internet and wi-fi to participate. Researchers welcome English-speaking participants from around the world! The survey has been developed for international use and adapted where possible to accommodate the UK survey criteria.

Through this study, researchers hope to make managing JIA pain a little bit easier by learning how to promote resilience in families.

This study has been funded by the Canadian Institutes of Health Research and approved by IWK Health’s Research Ethics Board. It is led by researchers Yvonne Brandelli (PhD student at Dalhousie University supported by Research Nova Scotia, an IWK Graduate Scholarship, and a Dalhousie Mabel E. Goudge Award), Dr. Sean Mackinnon (Senior Instructor at Dalhousie University), Dr. Christine Chambers (Tier 1 Canada Research Chair in Children’s Pain, Professor at Dalhousie University, and Registered Psychologist), alongside a team of researchers, rheumatologists, and youth and parent partners from across Canada.

For more information and study updates, you can send them an email (itdoesnthavetohurt@iwk.nshealth.ca) or check out their research website www.itdoesnthavetohurt.ca/campaigns/jiastudy/.