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.