This 8-week telehealth (remote) intervention program focuses on building play skills, emotional understanding and regulation, and social skills in Prader-Willi syndrome.
What is the goal of this research?
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To examine social, cognitive, and emotional behavior in children with Prader‐Willi Syndrome (PWS) and compare them to children with Autism Spectrum Disorder (ASD) and/or typically developing children in order to better understand strengths and challenges in social communication in PWS.
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To evaluate the feasibility of a play-based remote intervention program designed to 1) increase children’s individual play skills and overall social-cognitive skills, and 2) increase learning and play between parents and children.
Who can participate?
We are currently recruiting children 6-9 years of age with PWS and their parent/primary caregiver.
What will happen if my child and I participate?
If you and your child decide to participate, your child will undergo remote assessments that will measure their play, social, and emotional abilities. This remote assessment visit for your child will take approximately 30 minutes to complete. Prior to this time, you (the parent or caregiver) will be asked to report on your child’s social, emotional, and behavioral functioning via parent- report surveys that will take approximately 1-2 hours to complete.
You and your child may be asked to participate in the PRETEND program. This program involves 1) your child participating in weekly individual play sessions (15-20 minutes each) for 8 weeks via remote videoconferencing, 2) you (the parent or caregiver) participating in 4 remote parent-training sessions (30-35 minutes each) with content focused on building strategies to structure play, engage your child in play, decrease problem behaviors, and build emotional, social, imagination and communication skills in your child, and 3) you (the parent or caregiver) and your child completing remotely recorded joint-play sessions together.
At the end of the 8-week intervention period, even if you have not participated in the intervention, you and your child will be asked to complete another set of remote assessments and reports relating to your child’s social, emotional, and behavioral abilities. We again expect the child assessment to take approximately 30 minutes to complete, and the parent surveys to take approximately 1-2 hours to complete.
Why should you participate?
There is no guaranteed benefit to you or your child by participating in this research study. Your participation in this research may aid in understanding of how interventions could positively impact the development of play skills and other related social-cognitive skills, how social functioning in PWS could relate to other disorders, and whether play-based interventions would be beneficial to the PWS community.
For more information, please contact Dr. Anastasia Dimitropoulos and the PRETEND Research Team at neurodevelopmentresearchlab@gmail.com or 216‐368‐3471.
