We need 319 youth and parents to help us understand how we can best support kids and families to be RESILIENT in the face of Juvenile Arthritis. Take the survey to share your experiences now: JIA Survey

If you’re like many youth and parents in our community, managing the pain and mental health issues that can come along with a Juvenile Arthritis diagnosis are some of your top priorities.

You may even wonder at times, how will we cope?

A few years ago, we partnered with the It Doesn’t Have to Hurt research team at the Centre for Pediatric Pain Research to explore how pain can affect parents. The results of the studies were astounding, showing that:

• 83% of children had experienced pain in the past month.
• Parents were suffering the effects of pain too – from dips in their overall well-being to their relationships with their child.

But what took researchers most by surprise, was that despite all of these difficult experiences surrounding JIA pain, so many parents described how easily their child bounced back – something we call 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

 

“My daughter knows now that she has ups and downs. She knows her meds keep her in a good place. She knows when she stops physio she’s in trouble. … She knows getting out and doing things make her feel better and isolation at home is way more depressing… She is very involved in after school activities and spends lots of time with her friends who understand her pain and help her.” – Mother of a 17-year-old

Clearly, resilience and the ability to bounce back from JIA pain are important concepts within our community. Fast-forward to 2 years into a global pandemic, where if ever there was a time to learn about how to foster resilience in our youth, here it is!

What we know

A few studies have shown us that certain personality traits or attitudes within an individual are helpful to promoting resilience (e.g., having an accepting attitude towards the pain and diagnosis), while others can get in the way (e.g., fearing pain, coping by avoiding things). With that said, there is still a lot left to learn. There are lots of personality traits and attitudes that haven’t been explored. We have yet to learn how parent resilience impacts youth and vice versa, and we have little knowledge about how all of this applies to youth with JIA in particular.

What we want to find out

Our goal is to better understand resilience in the context of JIA pain by learning from you.

The purpose of this study, funded by the Canadian Institutes of Health Research and approved by IWK Health’s Research Ethics Board, is to better understand what it is within youth with JIA and their parents that helps to foster resilience and mental well-being.

This research, in partnership with Cassie & Friends, is led by researchers Yvonne Brandelli (PhD student at Dalhousie University supported by Research Nova Scotia), Dr. Sean Mackinnon (Senior Instructor at Dalhousie University), Dr. Christine Chambers (Registered Psychologist and Tier 1 Canada Research Chair), alongside a team of researchers, rheumatologists, and youth and parent partners from across Canada.

How can you help?

We are asking 319 youth with JIA (13-18 years old) and a caregiver to fill out an online survey. We want to know about your experiences with your/your child’s arthritis, pain, and well-being. The online survey will take about 40-60 minutes to complete and you will receive a $15 online gift card as a thank you for sharing your experiences. Additionally, if both youth and parents participate, you can enter a draw to win a pair of Apple Airpods.

Through this survey, we hope to make yours and family’s JIA journey a little easier by better learning how we can help promote resilience in families. We are excited to have your input in this study and to share what we learn with you on our website and at our upcoming Virtual Education Series.

To access this survey visit: JIA Survey

For more information and study updates, check out their research website itdoesnthavetohurt.ca, follow them on Twitter (@YvonneBrandelli, @SeanPMackinnon, @DrCChambers), and follow the Centre for Pediatric Pain Research on Facebook.