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脑瘫的早期识别与沟通:为新生儿随访项目探寻协作方法

Early identification and communication in cerebral palsy: Navigating a collaborative approach for neonatal follow-up programmes.

作者信息

Church Paige Terrien, Banihani Rudaina, Thomas Karen, Luther Maureen, Agnew Brenda, Makino Amber, Lam-Damji Sophie, Fehlings Darcy

机构信息

Beth Israel Deaconess Medical Center, Department of Neonatology, Boston, Massachusetts, USA.

Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.

出版信息

Acta Paediatr. 2025 Feb;114(2):292-298. doi: 10.1111/apa.17458. Epub 2024 Oct 14.

Abstract

AIM

This article will provide a clinical case demonstrating the implementation of early identification and review the tools and findings and the diagnostic approach. We will review highlighted literature on the subject of communicating a diagnosis. While improved function is a critical goal, the process of communicating the diagnosis of CP can be challenging for both parents and providers. It aims to provide insights on the evidence supporting early identification and discusses strategies for effective communication of crucial information.

METHODS

The article reviews the literature on communication of a diagnosis.

RESULTS

Thirteen articles were identified relating to the communication of a diagnosis of CP and parent experience. We examine this evidence, leveraging the knowledge of an interdisciplinary team and incorporating feedback from parents.

CONCLUSION

Strategies for effective communication include engagement with families, community therapy teams and all medical providers. Consistent, individualised, collaborative communication is critical. Awareness of ableism and use of balanced, value-neutral terminology is recommended.

摘要

目的

本文将提供一个临床案例,展示早期识别的实施情况,并回顾相关工具、结果及诊断方法。我们将回顾关于诊断传达主题的重点文献。虽然功能改善是一个关键目标,但对父母和医疗服务提供者而言,传达脑瘫诊断的过程可能具有挑战性。其目的是提供关于支持早期识别的证据的见解,并讨论有效传达关键信息的策略。

方法

本文回顾了关于诊断传达的文献。

结果

确定了13篇与脑瘫诊断传达及家长经历相关的文章。我们利用跨学科团队的知识并纳入家长的反馈来审视这一证据。

结论

有效沟通的策略包括与家庭、社区治疗团队及所有医疗服务提供者合作。持续、个性化、协作性的沟通至关重要。建议意识到能力主义并使用平衡、价值中立的术语。

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本文引用的文献

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