The PRETEND Program: Evaluating the Feasibility of a Remote Parent-Training Intervention for Children With Prader-Willi Syndrome

Author:

Zyga O, Russ SW, Dimitropoulos A

Scientific Notation:

American Journal on Intellectual and Developmental Disabilities

Publication Link:

https://www.aaiddjournals.org/doi/abs/10.1352/1944-7558-123.6.574

Abstract:

Research has shown that children with Prader-Willi syndrome (PWS) have social-cognitive challenges and decreased quality parent-child interactions. However, given the low prevalence rate, developing interventions for children with PWS is faced with the significant challenge of enrolling enough participants for local studies. To better understand the feasibility and acceptability of telehealth, the current study delivered a 6-week remote parent training intervention to 15 primary caregivers of a child with PWS (ages 3-6). Behavioral Intervention Rating Scale results indicate good acceptability (5.64/6.00) and satisfaction (4.75/5.00) with the intervention. These results are one of the first to support the use of telehealth in conducting parent training in rare disorders, such as PWS.

FPWR Grant:

Evaluating the Parent-focused Remote Education To Enhance Development (PRETEND) Program in PWS