Fragile X Care Adults and Ageing | Webinar presentation, 13 July 2023

Presentation from “Fragile X Syndrome Research Roundup” webinar 1 of 2, 13 July 2023. A/Prof Mary-Ann O’Donovan introduces “Fragile X Care | Adults & Ageing” - the first national study of adults living with Fragile X syndrome. This 3-year project will be undertaken by Fragile X Association of Australia in collaboration with Centre for Disability Studies (research affiliate of University of Sydney). The objectives of the study are to:
1. Explore the need for and effectiveness of supports for the ADULTS, particularly those in residential care / group home settings
2. Explore the need for and effective supports for CARERS of the adults living at home, in particular supports for future care planning and transition in later life
3. Produce best practice EDUCATIONAL AND FUNCTIONAL INFORMATION RESOURCES & STRATEGIES for disability / aged care providers and the varied support workforce
4. Create a COMMUNITY OF PRACTICE for ongoing knowledge transfer
5. Generate recommendations and advocate for POLICY AND PRACTICE CHANGE
The Fragile X Care | Adults & Ageing project will commence in early 2024. Members of the Fragile X community and carers of adults living with Fragile X syndrome are encouraged to take part in this research study. You can get involved in a range of ways - such as survey, interview, focus group etc. More detail will be available on the website of Fragile X Association of Australia website in early 2024.
If you have any queries about this research study, contact us at: [e-mail]
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