PWSA Blog

Kasey Bedard, Ph.D., BCBA-D, IBA Shares Findings from Research Study Funded by PWSA | USA

PWSA | USA is excited to share the findings from a grant funding opportunity, awarded to and studied by Kasey Bedard, Ph.D., BCBA-D, IBA. This grant assisted Kasey with her work on PWS Smart-Start, a behavior-analytic caregiver training program. Kasey gives a brief overview of her results below.

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Contributed by Kasey Bedard

The purpose of this grant was to develop and pilot test PWS Smart-Start. PWS Smart-Start is a behavior-analytic caregiver training program developed specifically for caregivers of children with PWS aged three to 14. PWS Smart Start is based on the principles and techniques of behavior analysis and provides parents and caregivers with knowledge, skills, and strategies to more effectively address the behavioral challenges identified by caregivers and physicians to be most detrimental to child development and wellbeing.

This multi-faceted program includes the following modules:

(1) Introduction to ABA and Behavior in PWS,
(2) Defining and Tracking Behavior,
(3) Behavioral Principles,
(4) Prevention,
(5) Reinforcement,
(6) Delayed Reinforcement Systems,
(7) Scheduling,
(8) Planned Ignoring,
(9) Functional Communication,
(10), Teaching Skills,
(11) Self-Calming Strategies for Tantrums,
(12) Food Security and
(13) Generalization and Maintenance.

Thirty-four families of children with PWS received the PWS Smart-Start training using online live video-coaching across a 10-week period. Results indicated statistically significant decreases in parental stress and burnout following the training. Additionally, significant improvements were seen in parenting practices, the quality of the parent-child relationship, and family quality of life. Statistically significant decreases were also shown across a variety of child behavioral challenges, including food seeking, tantrums, skin picking, aggression, repetitive behaviors, ritualistic behaviors, and rigidity. Most notably, parents reported that they liked the program, that it covered topics important for families of children with PWS, that it gave them new tools empowering them to better support their children, and that it lead to positive changes for their families.

These preliminary results indicate that caregiver-implemented behavior analytic interventions have the potential to not only support children with PWS through behavioral challenges, but also to reduce caregiver stress and burnout, and to improve a variety of aspects of family life.

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