Resources
Children’s Books
OI Colour OI Learn
Grounded in research evidence about pediatric pain and osteogenesis imperfecta, our team developed a colouring book to help children with OI learn about their condition while having fun.
The Dream Machine
Dr. Argerie Tsimicalis collaborated with author Canada Amarante and graphic illustrator Dave Reed to tell the story of Aishling who has osteogenesis imperfecta type III help her sister Skylar recover from a ski accident. The book will be available in French and English this Spring.
Comic Book
Point Guard
The Réseau de santé buccodentaire et osseuse (RSBO) created a comic collection to raise awareness about oral and bone health research. As a member of the Art & Science committee at RSBO, Dr. Tsimicalis co-created her own comic strip with artist Daniel Ha. She shares strategies for communicating with sick children.
Virtual Reality
Using Virtual Reality to Help Children Cope during Medical Procedures
Our team is developing evidence-based tools to help healthcare professionals from different fields use and imple,emt VR into practice. This initiative stemmed from the Réseau de Santé Buccodentaire et Orale (RSBO) infrastructure grant, which aimed to fill an important gap in VR use in practice across Québec.
Games
Bones and Fractures Memory Game
Do you want to learn about all the bones in the human body? What about the most common fractures in osteogenesis imperfecta?
We developed a memory game to help you learn about all the bones in the human body and common fractures in osteogenesis imperfecta.
Kits
The OI Splint Kit
Our team at the Shriners Hospitals for Children-Canada collaborated with Carter Brown, a youth with OI, and his mother Jennifer Brown, to develop an OI Splint Kit, which includes the tools, materials, and information needed to properly splint someone during emergency fractures.
Transitioning Tools
OI Transfer Tool
The OI Transfer Summary Tool is a portable, clinically meaningful, person-focused tool to help improve the transition experience for adolescents and young adults living with osteogenesis imperfecta. The project was led by Argerie Tsimicalis and nursing trainee Jaimie Carrier who experienced a difficult transition to adult care for her childhood onset condition. They convened a task force at the Shriners Hospital in Montreal composed of OI experts, namely a primary care nurse practitioner, two clinical nurse specialists, a pediatrician scientist, two registered nurses, two physiotherapists, an occupational therapist, a social worker, an administrative decision maker, and two former patients of the child healthcare system. The tool covers the following topics: insurance information, psychosocial needs, activities of daily living, transportation, family history, immunization, major surgeries and hospitalizations, pain management, radiographies, medical equipment and follow-up needs.
OI Good2Go Passport
The MyHealth Passport is an extension of a transitional care program called Good2Go, launched in 2009, by Dr. Miriam Kaufman from The Hospital for Sick Children in Toronto, Canada. The initial vision of the program was to prepare adolescents with chronic health conditions to leave the pediatric health care system with the skills and knowledge to advocate for themselves, maintain health promoting behaviours, and use adult health services. This vision led to the creation of the MyHealth Passport which is a free, easy-to-use, online tool allowing individuals with chronic health conditions to be proactive with their health care, across all ages, on a global scale. Individuals with osteogenesis imperfecta (OI) may receive care from health care providers, emergency responders, good Samaritans, and laymen who are unaware that they may sustain a fracture due to the slightest movement. In such situations, those with OI could benefit from a portable tool to help them communicate their rare condition to others. Hence, our trainee Sunny Jeong collaborated with our team at the Shriners Hospital to develop a Good2Go passport for youth with osteogenesis imperfecta. Our work was published in the Journal of Clinical Nursing: https://doi.org/10.1016/j.ijotn.2018.11.005
OI Individualized School Plan
Children with osteogenesis imperfecta (OI) experience extensive fear of fractures and situations that may cause a fracture. Efforts to optimally support their integration into an inclusive school setting is warranted to ease their fears, support their learning, foster peer relations, adapt new skills, and cope with varying challenges. Hence, our team led by Argerie Tsimicalis and student trainees Galil Osman and Jessica Chemtov gathered a a Task Force comprised of healthcare providers, teachers, and patients. Together, we synthesized existing literature related to school integration for children with OI, devised guidelines, strategies, and recommendations for optimal school integration for children with OI, and created a tool to foster the integration of children into primary and secondary school settings. Varying items were prioritized to foster an inclusive school setting for children with OI. Further research will be needed to pilot the tool, solicit ongoing feedback, plan and evaluate a full-scale implementation and evaluation. Efforts to foster school inclusivity will require ongoing, sustainable collaborations and partnerships between the children’s health care and school systems.
Pamphlets
The Quality of Life of Children with Osteogenesis Imperfecta and their Families
The Pain Experienced by Children and Adolescents with Osteogenesis Imperfecta
The Pain Experienced by Adults with Osteogenesis Imperfecta
How Patients with OI Reduce and Cope with their Pain
La qualité de vie des enfants atteints de l'OI et leurs familles
Songs
I’ve Got Pains
Our team led and published a series of studies on the pain experienced by children and adults with osteogenesis imperfecta (OI). At the time, graduate student Karl Williams, the sibling of a former Shriners patient, wrote and recorded a song based on our research. The song is called: “I’ve Got Pains”. The song has now been animated by Stephanie Smith and will be available soon.
OI Will Rise Again
Karl Williams composed another song reflecting the different experiences of youth with osteogenesis imperfecta (OI).
The animated video is coming soon!
Mobile Applications
