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

Autor:	Christina K. Zigler, Nicole Lucas, Molly McFatrich, Kelly L. Gordon, Harrison N. Jones, Allyson Berent, Jennifer Panagoulias, Paula Evans, Bryce B. Reeve
Rok vydání:	2023
Předmět:	Psychiatry and Mental health Neuropsychology and Physiological Psychology Arts and Humanities (miscellaneous) Pediatrics Perinatology and Child Health Developmental and Educational Psychology Neurology (clinical) General Medicine
Zdroj:	American Journal on Intellectual and Developmental Disabilities. 128:185-203
ISSN:	1944-7558 1944-7515
Popis:	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.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_________::dc76053b24392b96ee339cb2cbe480f8 https://doi.org/10.1352/1944-7558-128.3.185 Zobrazit plný text záznamu