FAQs
Who are we?
This research is being conducted by Kristina Micallef Pule and Professor Brian Hughes.
Kristina is a Master’s student at the University of Galway.
Brian is a Professor of Psychology at the University of Galway. He is also the parent of a 19-year-old young man who has PWS.
What is the aim of the study?
Our study aims to look at the experiences and well-being of parents and siblings of people who have PWS. We want to gather information about family life and the challenges that arise for family members.
What commitment is required?
The study involves an online questionnaire to be filled out by one or both parents in the family.
How long is the questionnaire?
The questionnaire contains seven sections and should take 20 to 25 minutes to complete.
Will I get the chance to speak to the researchers?
Yes! We will be happy to speak to any and all participants. If you wish to avail of the opportunity, we will organise sessions for you to speak with us and tell us your stories. (But of course, you are not obliged to do this.)
Can I change my mind if I decide I no longer wish to participate?
Yes, absolutely. You can withdraw your participation at any stage and without needing to given an explanation.
How long will the questionnaire be available?
The questionnaire will be available until June, 2024.
How can I sign up?
We would be delighted for you to participate. You can do so by clicking here.
Fam-PWS 2024 