This project aims to evaluate a parent training program (PWS Smart Start) for helping caregivers develop the skills they need to address challenging behavior and skill deficits common among children with Prader-Willi Syndrome. This project begins to lay the foundation for behavior analytic services for children with PWS, with the end goal of demonstrating the effectiveness of PWS Smart-Start specifically and, in general, the value of behavior analytic services that can be shared with key stakeholders for a variety of purposes, including promotion of insurance coverage for ABA.
Dr. Theresa Strong, Director of Research Programs, shares details on this project in this short video clip.
Lay Abstract
This project aims to evaluate a parent training program (PWS Smart Start) for helping caregivers develop the skills they need to address challenging behavior and skill deficits common among children with Prader-Willi Syndrome. This study will introduce 80 families (two groups of 40 caregivers) to the parent training program, and evaluate the outcomes on caregiver learning, child behavior, and the health, wellness, and stress levels of children and caregivers. PWS-Smart Start was developed using the science of Applied Behavior Analysis (ABA). Evidence-based behavior analytic practice has been shown to be very effective in helping parents of children with other developmental disabilities acquire the skills they need to help their children; however, very little work has been done to extend this intervention to children with PWS and their families. Due to the rare nature of PWS and the lack of effective interventions, parents, and caregivers are often left with insufficient strategies for handling their child’s behavior. It is imperative to develop behavioral interventions to support caregivers by reducing caregiver burden and burnout and to help children develop the skills necessary to succeed socially and academically. This project begins to lay the foundation for behavior analytic services for children with PWS, with the end goal of demonstrating the effectiveness of PWS Smart-Start specifically and, in general, the value of behavior analytic services that can be shared with key stakeholders for a variety of purposes, including promotion of insurance coverage for ABA. Additionally, this intervention has the potential for international usefulness as it can be delivered worldwide using remote technologies.