Family members and caretakers of individuals with PWS know that those individuals are often the friendliest people in a room, particularly when they are young children eager to give a hug.
However, people with intellectual or developmental delays often suffer from social isolation, loneliness, depression, and anxiety, all of which can contribute to poor health.
An FPWR-funded project will recruit young adults for a group intervention aimed at improving social skills, perceptions and thinking, and managing a range of social and emotional issues.
Individuals with PWS can have varying degrees of impaired social skills, social cognition and self-awareness. These can cause anxiety, oversensitivity to perceived threats, quickness to anger and other behaviors that can lead to social isolation, loneliness and depression.
Young adults with PWS are at particularly high risk as they transition out of school and leave the built-in social support, services and structure provided in that environment. Parents often struggle with developing a schedule of meaningful, enjoyable and rewarding daily activities for adults with PWS.
'Improving Social Functioning in Prader-Willi Syndrome' Study
Dr. Elisabeth Dykens at Vanderbilt University is undertaking an FPWR-funded project that will recruit 50 young adults (ages 16-26) with PWS into an intensive, 10-week group intervention aimed at improving social skills, perceptions and thinking, and to help manage anxiety, depression, mental health problems and relationships with family, friends and caretakers.
The study will be run virtually, with no travel required. The goal is to develop a program that can be extended widely to impact young adults with PWS. More details on the project, titled "Improving social functioning in Prader-Willi syndrome," can be found here. Information on participating in this and other studies can be found on our Clinical Trials Opportunities page. To stay informed about opportunities to participate in this and/or other research studies, please be sure to fill out the Email Subscribe form on our Get Involved page — you'll get updates including our quarterly Clinical Trials Alert.
About Dr. Dykens
Dr. Dykens has been an active member of the PWS research community for more than 25 years, focusing on ways to reduce stress and improve quality of life for those with intellectual disabilities and their families. Along with Elizabeth Roof, the group at Vanderbilt works with hundreds of individuals with PWS, and the university has been a site for several clinical trials and research studies in PWS.
Dr. Dykens was also an instrumental member of the organizing committee for the PWS Mental Health Research Strategy Workshop organized and sponsored by FPWR in March 2015. The workshop brought together leading experts from around the world with the goal of identifying, prioritizing and making recommendations on needed resource development, collaborations and research initiatives to address mental wellness for those with PWS.