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

Publication ,  Journal Article
Zigler, CK; Lucas, N; McFatrich, M; Gordon, KL; Jones, HN; Berent, A; Panagoulias, J; Evans, P; Reeve, BB
Published in: American journal on intellectual and developmental disabilities
May 2023

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.

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Published In

American journal on intellectual and developmental disabilities

DOI

EISSN

1944-7558

ISSN

1944-7515

Publication Date

May 2023

Volume

128

Issue

3

Start / End Page

185 / 203

Related Subject Headings

  • Rehabilitation
  • Quality of Life
  • Humans
  • Communication
  • Child
  • Caregivers
  • Angelman Syndrome
  • 52 Psychology
  • 39 Education
  • 32 Biomedical and clinical sciences
 

Citation

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Zigler, C. K., Lucas, N., McFatrich, M., Gordon, K. L., Jones, H. N., Berent, A., … Reeve, B. B. (2023). Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers. American Journal on Intellectual and Developmental Disabilities, 128(3), 185–203. https://doi.org/10.1352/1944-7558-128.3.185
Zigler, Christina K., Nicole Lucas, Molly McFatrich, Kelly L. Gordon, Harrison N. Jones, Allyson Berent, Jennifer Panagoulias, Paula Evans, and Bryce B. Reeve. “Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers.American Journal on Intellectual and Developmental Disabilities 128, no. 3 (May 2023): 185–203. https://doi.org/10.1352/1944-7558-128.3.185.
Zigler CK, Lucas N, McFatrich M, Gordon KL, Jones HN, Berent A, et al. Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers. American journal on intellectual and developmental disabilities. 2023 May;128(3):185–203.
Zigler, Christina K., et al. “Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers.American Journal on Intellectual and Developmental Disabilities, vol. 128, no. 3, May 2023, pp. 185–203. Epmc, doi:10.1352/1944-7558-128.3.185.
Zigler CK, Lucas N, McFatrich M, Gordon KL, Jones HN, Berent A, Panagoulias J, Evans P, Reeve BB. Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers. American journal on intellectual and developmental disabilities. 2023 May;128(3):185–203.

Published In

American journal on intellectual and developmental disabilities

DOI

EISSN

1944-7558

ISSN

1944-7515

Publication Date

May 2023

Volume

128

Issue

3

Start / End Page

185 / 203

Related Subject Headings

  • Rehabilitation
  • Quality of Life
  • Humans
  • Communication
  • Child
  • Caregivers
  • Angelman Syndrome
  • 52 Psychology
  • 39 Education
  • 32 Biomedical and clinical sciences