By Kathy Reid
In my clinical work with children who have chronic pain, and their families – I often hear from them how difficult it has been to understand chronic pain, to have others understand why their child has pain, and to find help within the health care system to manage this pain! In fact, in my thesis completed in my Master’s degree in 2008, parents told me that despite seeing numerous health care providers, and having a child who has had pain for two years or longer, they still didn’t understand the diagnosis and were searching for ways to help their child cope. In addition, they also told us that they wanted reading materials to better understand chronic pain.
This research led us to think about creative ways that we could meet the needs of families whose children have chronic pain. Together with Dr. Shannon Scott and her researchers at the Faculty of Nursing, University of Alberta, we obtained research funding to study their needs and how we could best meet them. In the research, our researcher interviewed parents whose child is followed in our pain clinic to determine what information they wanted in a book to help manage chronic pain – information that they wish they had known earlier! From these interviews, we were able to develop a book that tells their story – what it is like for a family to learn to live with chronic pain. These stories, which were audiotaped, were then coded for themes by the research team – and the commonality of the story emerged!
Once the themes were identified we worked with a communications team to develop the book – which is written in the form of a story. We worked with a graphic designer who completed illustrations to accompany the story. The book took form over the next several months. In addition to the story, our clinical team provided necessary definitions for medical terms to add clarity for the reader. These definitions are identified in the interactive book – the technology allows the reader to touch the symbol and the definition appears in a bubble on the page. Another feature included in the book are exercises, developed by the clinic staff, to help families identify their own values and goals, to practice mindful breathing, and to collect their thoughts.
Here’s a sample from the book
“Megan was so often in pain she rarely had the energy to do fun things teenage girls were supposed to with their friends. No shopping. No movies. No sports teams. Back when Megan was in early elementary school, she dreamed of becoming an Olympic figure skater, but she hadn’t taken lessons since sixth grade, when the headaches began. And forget about boys. “They hate me mom”, she would cry to me. “They think I’m making it up, that I’m pretending I’m sick. I’m not pretending. It hurts. Everything hurts”.
The book explains the sensitivity of the nervous system and how strategies such a cognitive behavioral therapy, coping strategies, physical activity can all help manage chronic pain.
We hope that families will find the book helpful in understanding and managing their child’s chronic pain. We have developed several versions for different platforms, including e-readers. For more information, please contact Kathy Reid at Kathy.email@example.com or Dr. Shannon Scott at firstname.lastname@example.org
Kathy Reid is a Nurse Practitioner, Stollery Pediatric Chronic Pain Program.