Western Hub: Empowering institutional change through storytelling and advocacy

During 2021 National Pain Awareness Week, SKIP’s Western Canada Hub hosted an event where patient partners/advocates, and health professionals shared their stories with an audience that reached as far as Australia. These presenters painted a clear picture of pain in Canada, and a powerful reflection of the policies and practices that need to change to improve pain management for children. One of the many ways SKIP’s Western Canada Hub is working towards institutional education and change.

Pain takes many forms, but it isn’t always easy to see or describe. SKIP’s Western Canada Hub, located in the Stollery Children’s Hospital in Edmonton, Alberta, works to improve pain management for children within the institution and beyond. In November 2021, they partnered with the Women & Children’s Health Research Institute to host a unique virtual event. Four patient partners and two health professionals shared their stories through photos (known as a Pecha Kucha). The storytellers used photos to offer their perspectives and lived experiences with pain in whatever way felt most comfortable to them. The outcome? A clear picture of pain in Canada, and a powerful reflection of the policies and practices that need to change to improve pain management for children.  

This event, titled Our Reflections on Children’s Pain, was co-hosted by Dr. Samina Ali, Professor of Pediatrics and Emergency Medicine at the University of Alberta, and Dr. Elise Kammerer, SKIP Knowledge Broker at the Western Canada Hub. Patient partners, parents, health professionals, and more tuned in for the storytelling session, with some joining from as far away as Australia. “Sharing experiences and stories can make a critical impact on how we approach pain management.” Says Elise, “Storytelling is an important piece of advocacy to instigate institutional change.”

Raising awareness about children’s pain and informing people about existing options to manage that pain is critical. Every child will experience pain to some degree, at some point. Yet 75% of parents say they don’t know how to manage children’s pain. Rebecca Liedtke is an advocate for improving management of children’s pain and presented at this event. She shared her experience interpreting and advocating for her son Levi’s pain throughout his cancer treatment.

“This event gave me the opportunity to share my story as a caregiver to a child who experiences pain on a daily basis. As parents and caregivers, we know how to advocate for our children and how to interpret their pain best,” said Rebecca, who is also a pre-medical student, a member of the Stollery Hospital Family and Patient Advisory group and is partnering with SKIP’s Western Hub to focus on reducing procedural pain in Stollery’s emergency department. For Rebecca, the greatest impact of SKIP’s event was informing parents and caregivers about the options available to improve their child’s experience and reduce pain as much as possible. Knowing that information, Rebecca explains, is what enables parents to be active advocates for their kids.

“It is vital that health professionals communicate what is available for comfort and procedural pain management. Most families don't know what options are available for their children. The more that is communicated, the more comfortable families and caregivers will be in asking for pain management. This will result in families feeling empowered as partners in their child's medical experience.”

Health professionals also shared their stories and experiences in managing children’s pain, including, Kathy Reid, a clinical nurse specialist at Stollery Children’s Hospital with 15 years of experience in chronic pain. Kathy is now retired from Alberta Health Services (AHS) and works as a research coordinator at the Faculty of Nursing, University of Alberta.  At the time of this event, she was working with AHS creating new policies and procedures to manage chronic and acute pain for children. Kathy’s story highlighted treatment options and the struggles of implementing research related to children’s pain. “We have all the research, but we need to do a better job of translating the knowledge into actually changing the practice for kids and families,” said Kathy. “If people don’t see pain as important then culture’s not going to change. That’s why stories matter. They show the journey and the personal connection people have with pain.”

These events are critical educational opportunities to support institutions in reaching new milestones for improving children’s pain management. “Events like this, are part of the Stollery’s dedication to engage and learn from patient partners and health professionals to create meaningful change. With the momentum from this event, SKIP’s Western Hub has developed new education materials for residents and nurses working in the emergency department at the Stollery, which are now being distributed across the province. Additionally, we have conducted critical needs assessments with families at the Stollery. All these projects are leading to the Stollery’s work towards achieving ChildKind Certification,” shares Elise.

From knowledge sharing events, to education tools, to policy work SKIP is working to address children’s pain management on every level. Through the work of SKIP’s Western Canada Hub we have been able to engage our network to motivate vital change in Alberta and beyond.