Parents, we hear you! Help us prepare your child and YOU for JIA and JIA treatment-related pain.

If you are like most parents in our community, pain, medications (giving medications, side effects, etc) and associated mental health issues are some of your TOP concerns for your child with arthritis.  

And while you recognize treatments are critical, you and your family may sometimes find them hard – or even unbearable – to follow.

It is estimated that almost half of newly diagnosed children with JIA have difficulty following their entire treatment plan. There are many reasons why this may be – perhaps it’s because the medications don’t immediately seem to be working, maybe more education is needed, or maybe it’s because these treatments can be painful.

Our goal is to answer these pain-related questions by learning from you.

In order to better understand how pain impacts your child’s JIA treatment experiences, and learn how to better prepare your child for treatment-related pains, we have partnered with the It Doesn’t Have to Hurt research team at the Centre for Pediatric Pain Research on a new study for parents of children with JIA that will act as a first step towards developing programs that can help.

The purpose of this study, funded by the IWK Health Centre, is to better understand how pain – a common experience for children with arthritis – contributes to your child’s treatment experiences, from weekly needle pokes to physical activity and even medication side effects.

This research is led by It Doesn’t Have to Hurt researchers Yvonne Brandelli (PhD student at Dalhousie University supported by The Arthritis Society and the Maritime SPOR Support Unit) and Dr. Christine Chambers (Registered Psychologist and Tier 1 Canada Research Chair), alongside a team of researchers, rheumatologists, and parent partners.

How can you help?

We are asking parents and caregivers who have a child (0-17 years) with JIA to fill out a brief online survey. We want to know about your experiences with your child’s pain, treatment plans, what you do to make these treatments easier for your child, and what other information you’d like to know about managing your child’s arthritis pain. The online survey will take about 20 minutes to complete and you can enter a draw to win 1 of 5 $100 online gift cards.

Through this survey, we hope to make your child’s and family’s JIA journey a little easier by better understanding, preparing for and minimizing pain. We are excited to have your input in this study – our parent experts – and to share what we learn with you on our website and at our next Family Days.

To access this survey visit: JIA Survey

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