Functional Participation of Individuals with Skeletal Dysplasias

In summary, this study recruits individuals of any age with any skeletal dysplasia. Participants complete an online survey regarding challenges and symptoms of daily functional tasks including mobility, self-care, public transport use, leisure activities, speech and comprehension, and then complete the WeeFIM/FIM, a standardised assessment of function, with a trained assessor over the phone or zoom. This study then has multiple sub-studies planned. The first sub-study already completed has involved in-depth interviews with individuals with skeletal dysplasias to explore their experience with the NDIS. Further sub-studies involving interviews with individuals with skeletal dysplasias are planned to explore symptoms and challenges with 1. daily mobility, 2. Self-care tasks, and 3. Public transport use.