Dalhousie University researcher studies resilience of kids with juvenile arthritis

It's a painful condition often associated with older people, but a researcher at Dalhousie University in Halifax is hoping to look at what makes children resilient when they are the ones diagnosed with arthritis.

Yvonne Brandelli, a PhD student in clinic psychology, is hoping that by hearing directly from the children, she can help their doctors and therapists get a more realistic look at how they're coping.

"There is a lot of pain associated with the disease and a lot of research around pain is focused on some of the tough parts. It's focused on how much it hurts," said Brandelli.

"But there's a lot less research that's actually looking at how do people continue to thrive and bounce back despite this diagnosis."

Brandelli estimates one in every 1,000 children is diagnosed with juvenile idiopathic arthritis, also referred to as JIA. Despite that, she said many people are unaware of the condition.

"I was really shocked," Brandelli said of when she learned about juvenile arthritis for the first time, motivating her to focus her research on the field. "I'm ultimately hoping to figure out what exactly is contributing to the wellbeing of individuals to thrive despite this diagnosis."

Brandelli is now trying to get the word out internationally that she needs the help of over 300 teens with the condition. They must be willing to fill out a survey and get their parents or caregivers to contribute as well.

She's specifically targeting 13 to 18-year-olds so they can answer the questions independently and honestly.

One aspect she wants to focus on is whether the kids feel pressure to be "perfect."

"There's the perfectionism that sometimes we put on ourselves to push through the pain and continue to do things that are important to us," she said. "There are other aspects where we feel like we have to be perfect at things we do, which obviously isn't achievable for anybody."

Brandelli's goal is to see if clinical experts are asking the right questions when they meet with their young patients. She's wondering if they can adjust their language to get a more authentic response from the kids.

"With that information we can better target our interventions that currently exist, whether it's in the rheumatology clinic, whether it's working with a mental health professional, better ways to support individuals to continue to live the life that's important to them."

Brandelli is being supervised by Dr. Christine Chambers and her Centre for Pediatric Pain Research at the IWK Health Centre in Halifax. She's also partnered with Cassie and Friends, a Canadian charity that supports kids with juvenile arthritis.

Brandelli hopes to finish her report next spring, and work with the two organizations to get the results out to experts in the field.

"There's a lot more work to be done," she said.

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