Background & Aims

Children with disabilities are underrepresented across storytelling platforms rendering their health care experiences, including their pain experiences invisible. Moreover, children are navigating health care systems with scarce access to patient educational material further exacerbating their feelings of stress, anxiety, and isolation. The aim of this arts-based knowledge translation project was to collaboratively create a children’s novel depicting the orthopedic surgical journeys of children including healthy children who sustain a first-time fracture, and ones whose rare condition, osteogenesis imperfecta (OI), contributes to countless ones.

Methods

The iterative and collaborative process of creating, The Dream Machine was conducted with Shriners Hospitals for Children®-Canada, a university-affiliated, non-for-profit, hospital located in Canada. The process entailed collaborating with the children’s author, scientist, and illustrator; sharing existing resources, ongoing and published research; consulting children, families, and clinicians; and sharing preliminary drafts for feedback. During this process, the children’s author, became a parent of a child injured from a sports accident and treated at the hospital. Moreover, the opportunity to offer resources to support children’s surgical journey, became apparent, Hence, 31 individuals interpreted the story, shared their disciplinary knowledge, and offered resources related to the story as supplemental material. Further, animated videos were produced offering additional insight into the creation of the book and how to draw the characters.

Results

The Dream Machine depicts Ashling who has broken her bones a hundred times. She was born with OI, a rare bone disease that makes her bones very fragile and brittle. As a result, Ashling suffers from chronic pain and is often hospitalized. Ashling, 16, sees her sister Skylar, 8, fall and break her leg during ski training. For the first time, Skylar experiences what Ashling goes through on a regular basis. Ashling helps Skylar overcome her pain in the same way she usually does: by using her dream machine, a machine that conjures up stories from imaginary worlds to distract her from the pain. The novel is supplemented with 24 topics related to pain management; importance of social support; surgical experience; rehabilitation process; roles of health care team members; celebrating strengths and resilience; sharing experiences with siblings and peers; and bringing the story into the classroom.

Conclusions

The Dream Machine, serves as exemplar of patient engagement, knowledge mobilization, and transectorial partnerships, in the production of child-centric resources for patient education. The book further seeks to defy conventional norms by broadening the scope and depth of children’s literature to include the experiences of children with rare conditions and render visible the acute and chronic pain experiences of children. Currently, the hospital has purchased 1000 copies to begin the process of distributing the book for free to their patients and integrating the book into practice, as a standard of care. Policies and procedures have been drafted, electronic charting of distribution being created, and system-wide integration being planned. An online learning platform that renders The Dream Machine accessible to children experiencing partial to full loss of sight or colour blindness; have limited cognitive load or memory; experience inattention; or have dyslexia, is in progress.

References

Amarante, C., Reed, D., & Tsimicalis, A., (2022). The Dream Machine, La machine à rêves, and forthcoming, La máquina de los sueños. Tellwell Publishing.

Presenting Author

Sofia Addab

Poster Authors

Sofia Addab

BSc, MSc

Shriners Hospitals for Children-Canada

Lead Author

E-mail

Kelly Thorstad

MSc(A)N

Shriners Hospitals for Children-Canada

Lead Author

E-mail

Candace Amarante

PhD

Equitas-International Centre for Human Rights Education

Lead Author

E-mail

Argerie Tsimicalis

RN

Ingram School of Nursing, McGill University; Shriners Hospitals for Children-Canada

Lead Author

E-mail

Topics

  • Education