Are you a father of a child with a genetic syndrome?

You are invited to participate in this study as a father or male caregiver of a child diagnosed with a diagnosed neurogenetic disorder (such as 22q11.2 deletion syndrome, Velo-cardio-facial syndrome, DiGeorge syndrome/sequence, Fragile X, Down syndrome, Prader-Willi syndrome, Tuberous Sclerosis, etc.).

This study is about how your child has impacted the lives of fathers and male caregivers. We are interested in how fathers/male caregivers have coped, and how the resources that are available to them have helped or hindered the experience. The aim of this study is to gain a broader understanding of issues facing fathers and male caregivers to children with diagnosed neurogenetic disorders. We hope that the results of the study may improve health care processes and models associated with these conditions.

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.

What would you be asked to do?

The survey will take approximately an hour to complete. There are no correct or wrong answers to any of the questions. If you do not wish to answer a particular question, it is okay not to answer and move on to the next question. Please take your time in thinking about each question before recording your response.

Who can participate?

We are seeking people 18 and over who are either a parent or a caregiver to an individual with a genetic developmental disability.

Want to find out more?

If you want to find out more information, or would like to complete the questionnaire, please click here or go to You will be provided with an information statement about the study, you can then choose whether you would like to proceed to the survey or to discontinue.