Researchers from an international collaboration, including the University of Newcastle, are "... interested in your experiences regarding the diagnosis of your child, including your emotional reaction and psychological well-being.
We are also looking at how you told your child/ren about their genetic 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.
This is a 20-30 minute questionnaire, conducted as a collaboration among the University of Newcastle, Australia; University of Tel Aviv, Israel; Duke University, USA; and the Children’s Hospital of Philadelphia, USA."
- Overview of the project, contacts for enquiries and links to the appropriate online questionnaire (there is a category for parents/carers of those with Down syndrome)