Are you the parent or carer of a child living with Usher syndrome Type 1?
We are recruiting research participants to be interviewed in a University of Melbourne study exploring parent/carer support needs.
Who can participate?
Parents or carers of a child who has Usher syndrome Type 1 and who is aged 9 years and older.
What would you need to do?
Discuss your experiences and support needs in a one-hour online interview.
What is this research about?
This research is about understanding the experience of parents/carers of children with Usher syndrome in the period between birth to 5 years of age. We would like to ask parents about the experiences they had during this early period and their needs for support.
Based on the information we collate from our participating parent/carer group, we will be able to identify ways in which parents/carers can be supported more effectively.
Fleur O’Hare is a clinician-researcher from The Centre for Eye Research Australia that focus on inherited retinal diseases and will be conducting the interviews on behalf of UsherKids Australia. She has recorded this short message here to give you some more information about the project.