Exploring the support needs of parents and carers of young children with Usher syndrome

The project seeks to better understand the support needs of families of children with Usher syndrome and build some evidence to inform better services for families.

Research Outcomes:
The researchers interviewed families of children with Usher Syndrome to ask them about their support needs and find out what needs are being met and where there are gaps. They will also work to identify barriers that slow the progress of children with the condition.

The research has led to further projects looking at the needs of children with Usher syndrome and their families. Details for the two new projects, The awareness level of Australian clinicians regarding Usher syndrome and Genetic Counselling will be provided shortly.

Further, the research team has received a request from a US-based Usher Support group to submit their findings and a letter of explanation in support of their application to the Centers for Disease Control (CDC)/ and the Centers for Medicare and Medicaid Services (CMS) for an ICD-10 code specifically for Usher Syndrome (the ICD-10 code is the USA version of our Medicare billing code to be used by health professionals for billing purposes).

Publications:

Orphanet Journal of Rare Diseases: Exploring the support needs of Australian parents of young children with Usher syndrome:a qualitative thematic analysis
https://www.biomedcentral.com/epdf/10.1186/s13023-024-03125-w

Accord, the professional magazine of the Australian College of Audiology
https://accord.partica.online/accord/accord-magazine-september-2023/flipbook/1/

Usher Syndrome Study Highlights Education Need
https://mivision.com.au/2023/10/usher-syndrome-study-highlights-education-need/#:~:text=Usher%20syndrome%20is%20a%20rare,and%20sometimes%20problems%20with%20balance. 

Clinicians Unaware of Usher Syndrome Impact, Urgent Need for Multidisciplinary Education
https://www.physiciansweekly.com/clinicians-unaware-of-usher-syndrome-impact-urgent-need-for-multidisciplinary-education/ 

Awareness of Usher Syndrome and the Need for Multidisciplinary Care: A Cross-Occupational Survey of Allied Health Clinicians
https://www.dovepress.com/awareness-of-usher-syndrome-and-the-need-for-multidisciplinary-care-a--peer-reviewed-fulltext-article-JMDH

Pursuit Article, "Bringing answers to children with a little known genetic condition, A University of Melbourne collaboration is helping to uncover the real needs of children and families facing a future with Usher Syndrome" 24 May 2021.  https://pursuit.unimelb.edu.au/articles/bringing-answers-to-children-with-a-little-known-genetic-condition

Research Team

Usher Kids - Ms Emily Shepard, Ms Lauren Johansen
University of Melbourne - Associate Professor Karyn Galvin, Associate Professor Lauren Ayton
Centre for Eye Research Australia - Ms Fleur O’Hare, Ms Lisa Kearns
University of South Australia - Dr Lemuel Pelentsov

Partner organisation

Usher Kids Australia, https://usherkidsaustralia.com/