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Proposed updated description of cerebral palsy

利益相关者 框架(结构) 多学科方法 脑瘫 焦点小组 国际功能、残疾和健康分类 心理学 过程(计算) 感知 知识管理 工程伦理学 医学教育 医学 政治学 计算机科学 公共关系 社会学 康复 社会科学 工程类 结构工程 神经科学 精神科 人类学 操作系统
作者
Bernard Dan,Peter Rosenbaum,Lucinda Carr,Martin Gough,John Coughlan,Nonyelum Nweke
出处
期刊:Developmental Medicine & Child Neurology [Wiley]
标识
DOI:10.1111/dmcn.16274
摘要

Abstract ‘Cerebral palsy’ (‘CP’) is a widely used descriptive label for a spectrum of motor impairments caused by non‐progressive brain injury or malformation occurring during early development. Advances in research have significantly refined our understanding of CP, including insights into its genetic, inflammatory, and neurophysiological underpinnings. Research across global contexts, including low‐ and middle‐income countries, has expanded knowledge of clinical features. Shifting societal perceptions, driven by individuals with lived experience, have further influenced how CP is understood, challenging ableist attitudes and promoting inclusive frameworks. Additionally, increased recognition of the needs and experiences of adults with CP has highlighted the importance of further developing appropriate services. The primary aim of this paper is to propose an updated description of CP, developed through a collaborative, multidisciplinary process, as a preliminary formulation that integrates stakeholder perspectives at this stage of the process. By framing it as a foundation for further discussion and refinement, the manuscript emphasizes the output itself rather than the process of its development. A comprehensive stakeholder analysis and mapping approach ensured broad representation, including individuals with CP, families, clinicians, researchers, advocacy groups, and others. Data were collected through surveys, interviews, focus groups, and workshops, facilitating a global dialogue that combined the expertise of those with lived experience with that of clinicians. The proposed updated description offers a preliminary framework to guide clinical practice, research, and policy, fostering a shared understanding of CP. The description is intended to serve as a preliminary framework to guide clinical practice, research, and policy, emphasizing a shared understanding of CP. The proposed updated description thus lays the foundation for continued refinement, emphasizing the importance of collaboration in advancing the care and inclusion of individuals with CP.
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