The research team at Shriners Hospitals for Children Canada just published “Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions” in the JMIR Pediatrics and Parenting. The people behind the article were Maia Siedlikowski, Lianna Curiale, Dr. Frank Rauch and Argerie Tsimicalis.

Sisom (DHealth) is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic conditions express their symptoms. Recently, the co-design of the Sisom OI paper prototype was launched by seeking the perspectives of end users, including children with OI and their clinicians.

The co-design process provided children with OI the space to not only contribute to the development of the end product but also eloquently describe their experiences. These findings, based on the descriptions given by the children themselves, offer us a unique understanding of what it means to grow up with OI.

You can read the article here.