Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers

Author:

Zigler Christina K.1,Lucas Nicole1,McFatrich Molly1,Gordon Kelly L.2,Jones Harrison N.3,Berent Allyson4,Panagoulias Jennifer4,Evans Paula4,Reeve Bryce B.5

Affiliation:

1. Christina K. Zigler, Nicole Lucas, and Molly McFatrich, Duke University School of Medicine

2. Kelly L. Gordon, Duke Health

3. Harrison N. Jones, Duke University School of Medicine

4. Allyson Berent, Jennifer Panagoulias, and Paula Evans, The Foundation for Angelman Syndrome Therapceutis (FAST)

5. Bryce B. Reeve, Duke University School of Medicine

Abstract

Abstract Communication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these individuals. Following best practices for concept elicitation studies, we conducted individual qualitative interviews with caregivers and clinicians to elicit meaningful aspects of communication for individuals with AS. Caregivers were able to discuss their child's specific communication behaviors within a large number of expressive, receptive, and pragmatic functions via numerous symbolic and non-symbolic modalities. These results aligned well with published literature on communication in AS and will be used to inform the design of a novel caregiver-reported measure. Future studies on communication in individuals with AS should focus on gathering quantitative data from large samples of diverse caregivers, which would allow for estimations of the frequency of specific behaviors across the population.

Publisher

American Association on Intellectual and Developmental Disabilities (AAIDD)

Subject

Psychiatry and Mental health,Neurology (clinical),Arts and Humanities (miscellaneous),Developmental and Educational Psychology,Neuropsychology and Physiological Psychology,General Medicine,Pediatrics, Perinatology and Child Health

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