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妥瑞氏症候群:神经多样性运作化的催化剂。

Tourette Syndrome: A Catalyst for Operationalizing Neurodiversity.

机构信息

From the Department of Biomedical Education and Anatomy (A.G.); Nisonger Center Affiliate Faculty (A.G.), The Ohio State University; and Department of Neurological Sciences (M.R.), University of Nebraska Medical Center.

出版信息

Neurology. 2024 Jul 23;103(2):e209572. doi: 10.1212/WNL.0000000000209572. Epub 2024 Jun 13.

Abstract

Our goal, taking Tourette syndrome as a case example, is to introduce neurologists to, and motivate discussion on, the neurodiversity paradigm. This philosophical construct considers some neurologic conditions in diversity, instead of simply disease. Moving from philosophical idea to empirical construct draws from patient and family perspectives on (1) quality of life and discrimination, (2) disability pride, and (3) unique profiles of different patient cohorts. Listening to patient voices, attending to family, advocacy group, and societal views on neurologic disorders can strengthen precision neurology practice. Dialogs on neurodiversity, including antitherapy sentiments, offer to enhance neurologic care, patient agency, and autonomy; encourage respectful communications with patients who challenge the idea their condition is pathologic; and to set the stage for future empirical investigations and practice guidelines.

摘要

我们的目标是以图雷特综合征为例,向神经科医生介绍并促进对神经多样性范式的讨论。这个哲学概念将一些神经条件视为多样性,而不仅仅是疾病。从哲学理念到经验构建,借鉴了患者和家庭对以下方面的看法:(1)生活质量和歧视;(2)残疾自豪感;(3)不同患者群体的独特特征。倾听患者的声音,关注神经障碍患者、家属、倡导团体和社会的观点,可以加强精准神经学实践。关于神经多样性的对话,包括抗治疗情绪,有助于增强神经护理、患者代理和自主权;鼓励与挑战其病情为病理性的患者进行尊重的沟通;为未来的实证研究和实践指南奠定基础。

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