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It Doesn't Have to Hurt

Juvenile idiopathic arthritis and treatment-related pain

Parent perspectives of arthritis-related pain

We know that pain is a common experience in childhood arthritis, and that it is often due to both the disease itself and some of the treatments. In partnership with Cassie & Friends, we launched an online survey to better understand parents’ thoughts and feelings about their child’s treatment-related pain, and how that impacts the uptake of various treatments. The response to this survey was incredible! Over 300 families took part from around the world.

Our survey found that indeed, pain, including treatment pain is a common experience. Over 75% of families reported that their child was prescribed a treatment that involved some degree of pain (e.g., self-injections), and over 2/3 of families reported that their child experienced painful side effects. Importantly, parent perceptions of their child’s pain (i.e., if they were fearful of their child’s treatment-related pain) was associated with more difficulties following treatment plans.

We followed up with parents from this study to learn more about other ways in which their child’s treatments impacted them. Mothers’ who were interviewed described how treatments affected everything from their roles in the family, to their relationships and their well-being. Sometimes these culminated in an internal conflict, wherein mothers questioned whether the benefits of these treatments outweighed the risks. Together these studies suggest that JIA treatments have a significant impact on parents, and it’s important that parents are receiving support related to their child’s treatments, and that their expertise is incorporated in treatment decision making! We have published two papers of these studies if you want to learn more (see links below in News and Media).

Thank you to all of our partners in this study and everyone who took part! Stay tuned for our next study!

This study has been approved by the IWK Health Centre Research Ethics Board.

 


Featured News

Arthritis Research & Care: "Every little furrow of her brow makes me want to stop"

June 20th, 2021

“Every little furrow of her brow makes me want to stop”: An Interpretative Phenomenological Analysis of Mothers’ Experiences with Juvenile Idiopathic Arthritis Treatments Abstract Objective Children with juvenile idiopathic arthritis (JIA) are faced with a complex medical journey requiring consistent...

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Cassie and Friends: The impact of JIA pain and its treatments on parents

March 24th, 2021

“Every furrow of her brow makes me want to stop” If you have ever struggled to give your child an injection or to manage your child’s – or your own – emotions about their treatments, you are not alone!  In...

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The Arthritis Society: Top 10 Research Advances of 2020

January 18th, 2021

The Arthritis Society: Top 10 Research of 2020 Congratulations to Yvonne Brandelli, whose work was featured at one of The Arthritis Society's Top 10 Research Advances of 2020! Click here to read more about Yvonne's work on "How parents influence...

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When what helps hurts - Quand ce qui soulage fait mal

January 30th, 2020

Yvonne Brandelli was invited to present her research at "PAINtalks 2019" Organized by the Quebec Network of Junior Pain Investigators (QNJPI RQECD; le Réseau québécois des étudiants-chercheurs sur la douleur) Watch to learn more about the experience of pain in...

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Journal of Pediatric Psychology: Parents, Pain, and Treatment Adherence in Juvenile Idiopathic Arthritis

September 20th, 2019

A new paper, led by PhD student, Yvonne Brandelli, has been published in The Journal of Pediatric Psychology, Parent Pain Cognitions and Treatment Adherence in Juvenile Idiopathic Arthritis. Thank you to The Arthritis Society, Maritime SPOR Support Unit, and the...

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3MT: The Paradox of Arthritis Pain: When What Helps Hurts (People’s Choice Award)

March 25th, 2019

Congratulations to PhD student, Yvonne Brandelli, who was the recipient of the 2019 People’s Choice Award for Dalhousie University's 3-Minute Thesis Competition. Click here to watch Yvonne's award winning talk on YouTube.  

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It Doesn’t Have to Hurt: Take the survey to help better understand JIA pain

October 26th, 2018

Our partners at Cassie & Friends published a blog post on our research. Click here to read more.

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Research Team


Yvonne Brandelli

Co-Principal Investigator (Trainee)

Dalhousie University

Christine Chambers

Co-Principal Investigator (Supervisor)

Dalhousie University & IWK Health Centre

Jennifer Wilson

Co-Investigator

Cassie & Friends

Jennifer Stinson

Co-Investigator

The Hospital for Sick Children & University of Toronto

Adam Huber

Co-Investigator

Dalhousie University & IWK Health Centre

Perri Tutelman

Co-Investigator

Dalhousie University

Dr. Jennifer Parker

Co-Investigator

IWK Health Centre

IWK Health Centre
Centre for Pediatric Pain Research
Dalhousie University