Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Adults with 22q Research

An investigation into the adaptive living skills, sleep problems and mental health of adults with 22q11.2 Deletion Syndrome (a parental perspective)

NUI GalwayParticipant Information Sheet

The central aim of this research project is to investigate the adaptive living skills, sleep problems and mental health in adults with 22q11.2 Deletion Syndrome using a parental perspective.

Even if your adult son or daughter does not have any difficulty with adaptive living skills, sleep or mental health, you are still invited to take part as your information can tell us a lot about why these difficulties present in some adults and not in others. If you wish to participate in this study, you are asked to complete the following questionnaire online. The questionnaire will take approximately 10-15 minutes to complete and it can be completed in stages.

As this questionnaire involves information about your adult son or daughter with 22q11.2 Deletion Syndrome, I ask that you invite them to complete the questions with you, if possible, regarding adaptive living skills, sleep and mental health. It is perfectly fine for you to answer these questions on your adult son or daughter's behalf also. I also ask that only 1 parent from the household complete the questionnaire.

I will be expected to present all related information to my academic supervisors, Dr. Geraldine Leader and Dr. Arlene Mannion. You or your adult son or daughter will not be identified in the study and both your identities will be kept completely confidential, and will not be shared with anyone else.

Thank you for participating in this research.

If you have any questions about this research, my contact details are below.



Contact Information:

Andrea Curtin.



MSc Applied Behaviour Analysis Student.



Irish Centre for Autism and Neurodevelopmental Research (ICAN),

School of Psychology,

National University of Ireland, Galway.



Telephone: 00353 85 7026641



Email: a.curtin6@nuigalway.ie


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