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Autor/inn/enZigler, Christina K.; Lucas, Nicole; McFatrich, Molly; Gordon, Kelly L.; Jones, Harrison N.; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce B.
TitelExploring Communication Ability in Individuals with Angelman Syndrome: Findings from Qualitative Interviews with Caregivers
QuelleIn: American Journal on Intellectual and Developmental Disabilities, 128 (2023) 3, S.185-203 (19 Seiten)Infoseite zur Zeitschrift
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Spracheenglisch
Dokumenttypgedruckt; online; Zeitschriftenaufsatz
ISSN1944-7515
SchlagwörterGenetic Disorders; Communication Skills; Caregivers; Children; Expressive Language; Receptive Language; Pragmatics; Augmentative and Alternative Communication; Qualitative Research; Interviews
AbstractCommunication 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. (As Provided).
AnmerkungenAmerican Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: https://meridian.allenpress.com/aaidd
Erfasst vonERIC (Education Resources Information Center), Washington, DC
Update2024/1/01
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