Zigler Christina K, Lucas Nicole, McFatrich Molly, Gordon Kelly L, Jones Harrison N, Berent Allyson, Panagoulias Jennifer, Evans Paula, Reeve Bryce B
Christina K. Zigler, Nicole Lucas, and Molly McFatrich, Duke University School of Medicine.
Kelly L. Gordon, Duke Health.
Am J Intellect Dev Disabil. 2023 May 1;128(3):185-203. doi: 10.1352/1944-7558-128.3.185.
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.
沟通障碍对患有天使综合征（AS）的个体及其家庭的生活质量有重大影响，但现有的定性研究工作有限，无法为旨在评估这些个体沟通能力的测量工具提供必要内容。遵循概念引出研究的最佳实践，我们对照顾者和临床医生进行了个体定性访谈，以引出与AS个体沟通相关的有意义方面。照顾者能够通过多种符号和非符号方式，在大量表达、接受和语用功能范围内讨论其孩子的特定沟通行为。这些结果与已发表的关于AS沟通的文献非常吻合，并将用于为一项新的照顾者报告测量工具的设计提供信息。未来关于AS个体沟通的研究应侧重于从大量不同照顾者样本中收集定量数据，这将有助于估计特定行为在总体中的出现频率。
