June 21, 2018

Learning to live with chronic pain

Photo: Paul Swanson Photography

Fourteen year old Megan should be spending her time hanging out with friends and being a regular teenager. Instead her days are filled with pains that start in her stomach and head and intensify until all she can do is curl up in a ball on her bed in utter misery.

Chronic pain is a debilitating invisible disease that is easily ignored or excused as something else. Current information and resources aren’t always clear on how to best help and it’s heartbreaking to watch someone like Megan suffer with no solutions.

Kathy Reid, nurse practitioner at the Stollery Children’s Hospital has treated many patients like Megan and knows, first hand, the challenges they and their families face. “Right off the bat, I recognized that the kids and families didn’t have any information on chronic pain,” explained Reid. “There were books written for families, not with families.” That’s why she contacted Shannon Scott and Lisa Hartling, co-directors of Translating Emergency Knowledge for Kids (TREKK), who are experts in transforming proven research into resources for families.

Writing a resource with families dealing with chronic pain is exactly what the team decided to do with the help of a WCHRI Innovation grant. The team was able to hear directly from families within the chronic pain clinic through long hours of interviews. “Parents finally got to share what it’s like to have a child who is often told it’s all in their head,” said Reid.

The next step was reviewing the evidence for treating chronic pain. Using both the interviews and the best evidence for treatment, the narrative for Learning to Live with Chronic Pain, an eBook and audiobook was created. “These things take time,” noted Hartling. “Time and lots of resources–a lot of expertise and varied skill sets to do them really well.”

The finished result is a stunning 48 page booklet that tells Megan’s story of dealing with chronic pain and offers solutions such as breathing exercises. Families are ecstatic their stories are finally being told. “It’s humbling that our little book hit the right nerve for what people needed,” said Scott. “It’s gratifying to work with families and teens to develop resources like this and to actually see how donor donations can make a difference.”

The Learning to Live with Chronic Pain resource was supported by the Stollery Children’s Hospital Foundation’s Innovation grant through WCHRI.