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作为脆性X综合征远程医疗语言干预目标的反应式育儿:对可扩展性和最佳实践的启示

Responsive Parenting as a Target for Telehealth Language Interventions in Fragile X Syndrome: Implications for Scalability and Best Practices.

作者信息

Bullard Lauren, Abbeduto Leonard

机构信息

MIND Institute, UC Davis Health, Sacramento, California.

Department of Psychiatry and Behavioral Sciences, UC Davis Health, Sacramento, California.

出版信息

Semin Speech Lang. 2021 Aug;42(4):287-300. doi: 10.1055/s-0041-1730989. Epub 2021 Jul 26.

Abstract

This review highlights the ways in which telehealth procedures can be implemented to help bridge the research-to-practice gap in supporting developmental outcomes for youth with fragile X syndrome (FXS). We review how the literature to date has informed potential treatment targets in the areas of speech and language development with a focus on understanding and supporting the dyadic relationship between the child and their biological mother, who is also impacted biologically. Notably, parental responsivity is an area that is strongly related to child language outcomes, both early and into adolescence, and thus, it is an important treatment target for subsequent interventions. To date, several parent-implemented interventions have been done in FXS across a broad age range (2-17-year-olds) all showing support not only that parents are successful in learning responsive strategies but also that there are subsequent impacts to child language development. Moreover, these interventions were successfully implemented at a distance through telehealth procedures including video teleconferencing and shared recordings of parent-child interactions. This review also addresses potential moderators of treatment gains. Implications for scaling such interventions in the future as well as best practices for incorporating telehealth procedures into future research and intervention programs are also discussed.

摘要

本综述重点介绍了如何实施远程医疗程序,以帮助弥合研究与实践之间的差距,为脆性X综合征(FXS)青年的发育成果提供支持。我们回顾了迄今为止的文献如何为言语和语言发展领域的潜在治疗目标提供信息,重点是理解和支持儿童与其亲生母亲之间的二元关系,母亲在生理上也受到影响。值得注意的是,父母的反应性是一个与儿童语言成果密切相关的领域,从幼儿期到青春期都是如此,因此,它是后续干预的一个重要治疗目标。迄今为止,已经针对广泛年龄范围(2至17岁)的FXS患儿开展了多项由父母实施的干预措施,所有这些措施都表明,不仅父母能够成功学习反应性策略,而且对儿童语言发展也有后续影响。此外,这些干预措施通过远程医疗程序(包括视频电话会议和亲子互动的共享记录)成功地在远程实施。本综述还探讨了治疗效果的潜在调节因素。还讨论了未来扩大此类干预措施规模的意义,以及将远程医疗程序纳入未来研究和干预计划的最佳做法。

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