This project centers on better understanding the social-cognitive characteristics of Prader-Willi syndrome (PWS) in early childhood and providing education and training to parents of children with PWS to optimize learning and joint engagement between parent and child. There are two goals of this research:
1. To examine social, cognitive and emotional behavior in children with Prader-Willi syndrome (PWS) and compare them to children without PWS in order to understand strengths and challenges in early social communication in PWS.
2. To evaluate the feasibility of a parent education program (Parent‐focused Remote Education To ENhance Development, PRETEND) designed to optimize learning and play between parents and children with PWS while decreasing problem behaviors.
Children 3-5 years of age with PWS and their parent/primary caregiver will be invited to enroll in the PRETEND program. The goal of the program is to first characterize children with respect to these developmental domains and individualize the parent-training program to each parent-child’s needs. PRETEND sessions will be delivered via telehealth (video conferencing) and focus on building strategies to structure play, engage the child with PWS in pretend play, decrease problem behaviors and build emotional, social, imagination and communication skills. Children of program participants are predicted to make gains in social behavior after participating in PRETEND.
For more information about enrolling in the PRETEND study, please contact the PRETEND team at firstname.lastname@example.org or 216‐368‐3471.
Preliminary Characterization of Parent-Child Interaction in Preschoolers With Prader-Willi Syndrome: The Relationship Between Engagement and Parental Stress. Zyga, O., Dimitropoulos, A. (2020) American Journal on Intellectual and Developmental Disabilities: January 2020, Vol. 125, No. 1, pp. 76-84.
The PRETEND Program: Evaluating the Feasibility of a Remote Parent-Training Intervention for Children With Prader-Willi Syndrome. Zyga O, Russ SW, Dimitropoulos A. American Journal on Intellectual and Developmental Disabilities. 2018 Nov;123(6):574-584. doi: 10.1352/1944-7558-123.6.574.
Anastasia Dimitropoulos, PhD
Case Western Reserve University