WEB INTERVENTION FOR PARENTS OF YOUTH WITH GENETIC SYNDROMES (WINGS)

The purpose of this study is to evaluate the effectiveness of an adapted, telehealth functional behavioral therapy(FBTsIDD), specifically focused on promoting appropriate communication and behavioral strategies in individuals with syndromic intellectual and developmental disorders.

Study participants will be randomly selected (like flipping a coin) to receive either (1) An adapted, telehealth functional behavioral therapy (FBTsIDD) or (2) An evidence-based positive parenting intervention (PPT) commonly used to help parents implement proactive and positive behavioral strategies in the home.

Families of children (ages 2 to 12) with a genetic syndrome and associated moderate to profound Intellectual and Developmental Disabilities (IDD).

If you agree to participate in this study, your participation may last up to 8 months. You will be asked to complete virtual study assessments at intake and then bi-monthly for the next 6 months. In addition, you will be asked to participate in weekly or biweekly virtual intervention visits with a study therapist. During these visits, you will be asked to complete various assessments to measure any improvements over the duration of the study and to use intervention strategies at home with your child.

Based on experience with interventions in individuals with syndromic IDDs, researchers believe it may be of benefit. We also hope that knowledge gained from this study may benefit others with syndromic IDD’s in the future.