Researchers at McGill University are seeking expertise from individuals who are affected by Osteogenesis Imperfecta.
Study funded by Brittle Bone Society (BBS)
Children from Shriners Hospitals for Children-Canada created a play called “The Hospital of Unhappy Surprises” about their bad hospital experiences and what they want and need to have better experiences. Through the study, the researchers hoped to better understand the hospital experiences of children with OI from around the world, expand the current play, and create a professionally animated, open-access resource for children, families, and healthcare providers. Since Autumn 2023, they recruited 18 children with OI and their siblings from the United Kingdom, United States, Canada, and other parts of Europe who participated in online interviews. The children were shown a preliminary staging of the play, invited to discuss their experiences, make suggestions for the play, and act out scenes with print-out puppets.
The Researchers are now analysing all the data and working with an Advisory Council of parents of children with OI, former OI child patients, healthcare providers, and community advocates to help edit and finalise the script. They even had a preliminary performance of the play at Shriners Hospitals for Children-Canada with professional puppeteers! Once the script is finalised, the research team will collaborate with professional artists in London, UK to create the final animated play, which will be available to children, families, and health care providers around the world.
For more information, please contact
Jenny Wang, RN, M.Ed
Research Assistant, McGill University
E-mail: yi.wen.wang@mail.mcgill.ca
Principal Investigator:
Argerie Tsimicalis, RN, PhD
Assistant Professor, McGill University
Email: Argerie.tsimicalis@mcgill.ca
