OP032: Communication practices of parents and unaffected sibling needs in families impacted by a diagnosis of Angelman syndrome

Abstract

Angelman syndrome (AS) is a rare, neurodevelopmental condition affecting approximately 1 in 15,000 individuals. To date, one study evaluated the relationship between the unaffected sibling and child with AS; however, no research has analyzed parental communication about AS with unaffected siblings and these siblings’ needs. This study aimed to understand the nature of communication between parents and unaffected siblings including if discussion about AS had occurred and the content discussed. The study also evaluated the unaffected siblings’ knowledge and perception of AS.