Anne Wheeler, PhD RTI International Adapting the Parents and Infants Inter(X)action Intervention for Angelman Syndrome
$195,400
Most caregivers of an individual with Angelman syndrome spend a lot of time and money getting a diagnosis of AS once symptoms begin. As more is known about AS and new therapies offer potential help for those symptoms, there is an increasing effort to reduce the “diagnostic odyssey” for parents and to identify babies with AS as early as possible. Researchers are currently working on ways to diagnose AS through newborn screening, which would mean infants are diagnosed long before a parent might normally be concerned. It is important that caregivers are offered opportunities to help their infant using strategies that are targeted for children with AS.
A team of researchers at RTI International have developed Parents and Infants Interaction Intervention (PIXI) to help parents cope with a new diagnosis in their infants and to provide strategies that parents can use to improve outcomes for the children. PIXI is delivered in two phases during the infant’s first year of life. The first phase focuses on parent support, education about the condition, and early child development and methods for observing and interacting with their baby. In phase II, the interventionist uses coaching techniques to help caregivers learn and implement strategies to support their child’s unique developmental needs. Both phases use a standardized format and instructions, borrowing some ideas and strategies from programs that help babies and parents; all sessions are offered remotely.
This study will conduct several activities to gather information from the community that will help us identify what changes need to be made to PIXI to best help children with AS and their caregivers. We will ask parents to tell us about their experiences with their child’s first year of life and ask clinicians and other researchers about what we should include in the intervention. Once we have made all of the needed changes, we will test the PIXI program with three to five infants with AS and their parents to see whether the program helps. Information from this pilot study will help gather evidence to allow us to get additional funding to be able to offer the program to more families.