Do you worry about how Prader-Willi syndrome affects siblings?
We are pleased to announce the launch of an exciting new research project giving siblings and their families the opportunity to have their voices heard.
PWSA UK has commissioned the University of East Anglia to carry out a formal study into the experiences and support needs of siblings of those with PWS, who do not have the condition themselves.
The Sibs Project, which will run over six months, will explore:
1. The lived experiences of siblings growing up with a brother or sister with PWS;
2. How parents perceive the impact on the siblings who do not have PWS, and
3. How the support needs of the siblings who do not have PWS can be prioritised.
In order to do this, researchers are looking to speak to:
· Siblings who do not have PWS aged 11 years and above, either living at home with their sibling or who has left home in the last five years
· Parents or primary carers with day-to-day caring responsibility of the child with PWS and at least one other child without PWS
It is not essential that siblings without PWS and parents who take part in the study are from the same family unit.
Please click on the respective age groups below for more information:
Susan Passmore, CEO, PWSA UK, said: “When a child has very specific needs, it will inevitably have an impact on the rest of the family unit, and this is especially true of Prader-Willi syndrome, where day-to-day family life will often revolve around restricting access to food or managing challenging behaviour.
“This will inevitably have an impact on siblings without PWS, who may feel that their sibling with PWS is getting more attention than them, or find themselves subject to restrictions on their own eating habits or other activities in order to accommodate that sibling’s needs.
“We know from speaking to families within our community that this is an issue very close to their hearts, but up until now any evidence about the impact of PWS on siblings who do not have the condition has been purely anecdotal. This is why we are funding this exciting new study, so that we can better understand the experiences of siblings and, crucially, develop support services specifically for them.”
Eloise Hughes, PWSA UK’s Siblings Ambassador, said: “I think the Sibs Project is a great idea. It will help brothers and sisters understand PWS better and we can share ideas and support each other living with brothers and sisters that have PWS.”
If you meet the above criteria and would like to take part in this study, please contact Jen Dawe at
Jen.dawe@uea.ac.uk
for further information.
