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为唐氏综合征患儿寻求精准言语治疗服务。

Pursuing Precision Speech-Language Therapy Services for Children with Down Syndrome.

作者信息

McDaniel Jena, Yoder Paul J

机构信息

Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, Tennessee.

Department of Special Education, Vanderbilt University, Nashville, Tennessee.

出版信息

Semin Speech Lang. 2016 Nov;37(4):239-251. doi: 10.1055/s-0036-1587708. Epub 2016 Oct 4.

Abstract

The behavioral phenotype of individuals with Down syndrome (DS) offers one avenue for developing speech-language therapy services that are tailored to the individual's characteristics that affect treatment response. Behavioral phenotypes are patterns of behavioral strengths and weaknesses for specific genetic disorders that can help guide the development and implementation of effective interventions. Nonetheless, individual differences within children with DS must be acknowledged and addressed because behavioral phenotypes are probabilistic, not deterministic. Developing precision speech-language therapy services to maximize learning opportunities and outcomes for children with DS calls for increased collaboration among clinicians and researchers to address the needs, challenges, and opportunities on three interconnected themes: (1) moving effective interventions from research to practice, (2) making evidence-based, child-specific treatment intensity decisions, and (3) considering child motivation and temperament characteristics. Increased availability of intervention materials and resources as well as more specific recommendations that acknowledge individual differences could help narrow the research-practice gap. Clear descriptions of disciplined manipulations of treatment intensity components could lead to more effective intervention services. Last, addressing motivation and temperament characteristics, such as the personality-motivation orientation, in children with DS may help maximize learning opportunities. Focused attention and collaboration on these key themes could produce substantial, positive changes for children with DS and their families in the coming decade.

摘要

唐氏综合征(DS)患者的行为表型为开发针对影响治疗反应的个体特征的言语治疗服务提供了一条途径。行为表型是特定遗传疾病的行为优势和劣势模式,有助于指导有效干预措施的开发和实施。尽管如此,由于行为表型是概率性的,而非决定性的,所以必须承认并解决DS患儿之间的个体差异。为了最大限度地为DS患儿提供学习机会并取得更好的治疗效果,开发精准的言语治疗服务需要临床医生和研究人员加强合作,以应对三个相互关联主题下的需求、挑战和机遇:(1)将有效的干预措施从研究转化为实践;(2)做出基于证据的、针对儿童个体的治疗强度决策;(3)考虑儿童的动机和气质特征。增加干预材料和资源的可用性,以及承认个体差异的更具体建议,可能有助于缩小研究与实践之间的差距。对治疗强度组成部分进行规范操作的清晰描述可能会带来更有效的干预服务。最后,关注DS患儿的动机和气质特征,如性格-动机取向,可能有助于最大限度地增加学习机会。在未来十年,对这些关键主题的集中关注与合作可能会给DS患儿及其家庭带来实质性的积极变化。

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