Where does it hurt? Canuck Place Children’s Hospice Research Initiative studies pain in children - Canuck Place Children's Hospice
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Children can be expressive, especially when they are in pain. But when non-verbal children with serious illness are experiencing pain, how do parents, caregivers and clinicians know where it hurts?
That is what the Canuck Place Children’s Hospice Research Initiative (CPCH RI) in Vancouver is trying to determine – through the novel lens of patient-family research faculty.
The Pain and Irritability of Unknown Origin (PIUO) study is one of many projects being undertaken by CPCH RI, which was established in 2023. Funded by the Canadian Institutes of Health Research (CIHR) as part of the CHILD-BRIGHT Network, it aims to develop evidence-based guidelines for managing these difficult-to-assess symptoms often found in pediatric palliative care.
Dr. Hal Siden, the scientific director at CPCH RI, says the conditions and care for children and families, as well as the trajectory of illnesses, are unique.
He notes that while the field of pediatric palliative care has grown significantly since its early days as a ‘cottage industry,’ dedicated research support remains limited globally, with perhaps only a dozen centres having fully committed research teams.
A key focus of the Canuck Place Children’s Hospice Research Initiative is understanding and addressing the complex needs of non-verbal children.
“How do you interpret pain signals? Are they just angry? Are they irritated? Are they bored? Or does something truly hurt?” says Dr. Siden, underscoring the difficulties in assessing their symptoms.
Dr. Siden’s lab is pioneering a model of patient-oriented research that engages family partners – parents and caregivers of children with life-threatening illnesses not only as participants, but as co-creators of knowledge. Their lived experience having children with complex medical needs helps guide research priorities, shapes study design, improves recruitment and accessibility, and brings meaning to data interpretation.
CPCH RI prioritizes the meaningful involvement of families in the research process by integrating families into the initiative. Two parent partners, Candice Barrans and Laesa Kim, are team members of CPCH RI.
Ms. Barrans plays a key role in bridging the gap between academic research and the everyday realities of families. She also co-leads parent journal clubs that demystify complex academic findings, providing accessible resources and fostering deeper understanding.
“The ‘demystifying’ we offer parents is more about providing them with access to resources they may not otherwise be able to view, or even if they could, may be overwhelmed by the volume of information, or get lost in the medical or academic language,” says Ms. Barrans.
Involving families in pediatric palliative care research ensures studies are more honest, services more responsive, and outcomes more meaningful.
These journal clubs create a unique space where parents are recognized as knowledgeable collaborators, drawing on their extensive experience within the medical system.
The value of this collaborative approach is evident in the CPCH RI’s research digest. Parent-authored commentaries on academic literature have become the most read publications, demonstrating the profound impact and value placed on family perspectives within the pediatric palliative care community.
Ms. Barrans says this fulfills a crucial need for parents to use a difficult experience to better the system for other families and make impactful change.
As a CPCH RI family liaison, Ms. Kim aims to ensure that research is not only informed by but also driven by the realities faced by Canuck Place families.
She consults on study questions, design and recruitment, consistently advocating for the patient and family perspective. Her contributions extend to co-investigating studies and leading interviews, bringing a unique lens to data interpretation.
“When I’ve interviewed families, for example, I can nod along with their experience and genuinely say, ‘I get that,’” says Ms. Kim, emphasizing the rapport and richer data that this shared understanding can foster.
Ms. Kim is also instrumental in shaping the implementation of the PIUO study, a crucial step in translating research findings into tangible improvements in community clinics.
Listening to families in research ensures we ask the right questions, measure what matters, and build care that honours their values, cultures, choices, and dignity.
A key element of this work is the Parent Monitoring Board, comprised of parents who participated in the initial phase of the PIUO study. Their insights are invaluable in guiding how the new pain pathway will impact patients and families.
Ms. Kim highlights the profound sense of helplessness that families often experience when dealing with PIUO.
“These families want their child’s struggles – and their own – validated and understood, and to work with their health-care teams as partners,” she says.
The PIUO study aims to empower community pediatricians with the tools and support needed to navigate this challenging journey alongside families.
“Ensuring our community pediatricians across B.C. are trained and supported in caring for various complex conditions, such as PIUO, is an essential step in improving equitable health care in our province,” says Ms. Kim.
A great step, with support and leadership from patient-partner researchers.
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A version of this story was first published in
Globe and Mail
on June 20, 2025.
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