Faculty and Alumni Publish Children’s Book
Assistant Professor Dr. Karen Juckes and USask nursing alumna Megan Hewson publish children’s book to raise awareness about chronic pain.
Inspired by the lived experiences of participants from the Improving Pain in Saskatchewan (IPSK) community-based participatory research project, Rikki’s Invisible Pain is a children’s book that showcases the experiences of children living with complex (also called chronic) pain.
Among the research team behind the book are University of Saskatchewan (USask) College of Nursing alumna and Assistant Professor Dr. Karen Juckes (PhD)(BSN’84, MN'21) and nursing alumna Megan Hewson (BSN’18).
Meet Rikki. Rikki is an elementary school student who loves horses, riding bikes and collecting rocks. Yet Rikki has a secret: they are also someone who lives with complex pain. While Rikki may be a character in the new children’s picture book, the struggles that Rikki feels are very real. The book reveals the challenges of living with complex pain, from the physical limitations to judgement from classmates, who are unaware. As the story progresses, Rikki's teacher creates a safe space for sharing about the condition, and Rikki feels better for the chance to improve understanding about their world. As the book’s ending notes, Rikki finally feels seen and heard.
In addition to Dr. Juckes and Hewson, the book is authored by others from IPSK including Nikki Cooke, a person with lived experience (PWLE) and an inclusive education teacher from Regina, Heather Lewis, a hospital school teacher with Regina General Hospital, Ross McCreery, a PWLE from Regina, and Alex Schmidt, a Grade 3/4 teacher in Regina. The illustrator is Chad Geran.
Juckes says the team was inspired to write the book after hearing repeatedly from children, parents, and young adults that one of the hardest parts of living with complex pain is the feeling of missing out and the lack of understanding from others, particularly at school.
"Our overall goal in writing the story was to give children with complex pain a voice,” said Juckes.
“Given that one in five children live with chronic pain lasting three months or more, we hope that children and teens with complex pain will receive validation from the book and find it helpful in explaining their pain to others. It is also hoped the book will create increased awareness and understanding about complex pain in childhood among peers, teachers, and healthcare providers," adds Juckes.
Since publication, Rikki’s Invisible Pain has been shared through numerous presentations and conferences, including the 2023 International Symposium on Pediatric Pain, the Canadian Pain Forum in 2024, and the Canadian Pain Society Conference in 2025.
The book has also been shared at a teachers’ conference in Regina and with USask nursing students during their pediatric clinical rotation.
The team is in the process of distributing the book across the province to teachers, healthcare providers, child life specialists, and people with lived experience.
The book will be available in schools, hospitals, outpatient clinics, and community agencies so it can be passed along to children and families.
Juckes says the response to the book has been overwhelmingly positive and that the team has heard from children requesting a copy of the book to share at school.
"The most rewarding part of writing the book was the opportunity to capture the experiences of children living with complex pain and bringing these experiences to life," said Juckes.
Members of the writing team checked in with PWLE from IPSK throughout the writing process. In total, the IPSK team interviewed 152 participants including people with lived experience, healthcare providers, decision makers, and community organizations. This diverse group of individuals were interviewed to gain perspectives on gaps and opportunities for improved pain management in Saskatchewan. The book ultimately responds to one of the recommendations to emerge from the project on increasing awareness and education about pediatric complex pain.
Rikki’s Invisible Pain is available online in both English and French.
The writing team thanks IPSK Lead Investigator Dr. Susan Tupper (PhD) and IPSK Co-Investigator Dr. Krista Baerg (MD), as well as funders the Saskatchewan Health Research Foundation and Saskatchewan Center for Patient Oriented Research.