Communication needs of twins with Angelman syndrome: a qualitative approach

Abstract

Families of children with low incidence, severe disabilities have unique needs, which may not be revealed through traditional assessment. Qualitative studies, using multiple data sources allow professionals a more realistic view from families’ perspectives. Nine year old twins with Angelman syndrome and their families participated in this qualitative study. Information from previous ethnographic interviews of family members revealed three domains. These domains then framed additional data collection using results from a questionnaire, parent interview, and observations at home. Two overarching themes were identified: current differences between the twins and ways each encounters communication and learning. These data will be used to address goals and intervention. Results demonstrate how qualitative approaches allow identification of children’s preferences and family’s priorities.