Genetic disorders in children: An assessment of parental coping strategies and positive growth

the_university_of_newcastle_logo[1]Following on from our earlier study of how parents disclose a diagnosis of Fragile X syndrome to their children, we would like to further understand your experiences surrounding your child, including your emotional reaction and psychological well-being. In particular, we are interested in the support that you as a caregiver have available, and how this helped you to cope with the experience.

This is a questionnaire that you can do online. You can do this study even if you participated in the Disclosure study in 2012/2013. If you did participate in that study, you can choose to tick a box that allows us to link your data from the previous study to the current one. If you would prefer to remain anonymous that is fine.

To participate you must be 18 years or older and a parent or caregiver to at least one child with Fragile X syndrome. If you choose to complete this survey, you will be helping us to gain a greater understanding of managing the diagnosis situation. Hopefully, the findings will provide parents in the same situation with more guidance and tools. To read more and/or begin the questionnaire, please click the link below:

If you have any questions or concerns, please contact or

This project has ethics approval from the University of Newcastle’s Human Research Ethics Committee. Approval No. H-2012-0129.