The University of Newcastle, Australia is interested in your experiences regarding the diagnosis of your child. We are also looking at how you told your child/ren about their condition, and how they reacted. If you have not yet told your child, we are interested in what your concerns are around telling them about the syndrome.
What would you be asked to do?
If you agree to participate, you will be asked to complete a 20-30 minute online questionnaire that relates to issues regarding Fragile X syndrome. This includes the diagnosis experience (i.e. how you as the parent or caregiver were told about Fragile X syndrome and your emotional reaction) as well as the disclosure experience (i.e. how you told your child with the condition and their siblings).
Who can participate?
We are seeking people 18 and over who are either a parent or a caregiver to an individual with Fragile X syndrome.
Want to find out more?
If you want to find out more information, or would like to complete the 20-30 minute questionnaire, please follow this link:
www.wix.com/c3094005/geneticdisorders
If you have any questions or concerns, please contact Jane Goodwin (c3094005@uon.edu.au) or Dr. Linda Campbell (Linda.E.Campbell@newcastle.edu.au).
This project has ethics approval from the University of Newcastle’s Human Research Ethics Committee, Approval No. H-2012-0129.