患有脑瘫的青少年参与日常生活的经历:范围综述。

IF 3.8 2区 医学 Q1 CLINICAL NEUROLOGY
Stacey L Cleary, Prue E Morgan, Margaret Wallen, Ingrid Honan, Nora Shields, Freya E Munzel, James R Plummer, Cassandra Assaad, Petra Karlsson, Evelyn Culnane, Jacqueline Y Ding, Carlee Holmes, Iain M Dutia, Dinah S Reddihough, Christine Imms
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引用次数: 0

摘要

目的:综合分析15 ~ 34岁脑瘫(CP)患者参与成年早期关键生活情境的经验。方法:采用混合方法进行范围综述,检索6个电子数据库(2001年1月至2023年8月)。参与重点和专题成果已映射到国际功能、残疾和健康分类。结果采用聚合综合分析框架进行整合,数据分析通过专题综合完成。主题被映射到参与相关构念族。结果:38篇出版物(32篇研究;共纳入2759名受试者。更多的参与者是男性(n = 1435),独立行走(n = 1319),与家人住在一起(n = 1171)。“宣告我的成年和‘过’生活”是参与的统一描述,传达了年轻人认为在成人世界中占据一席之地所必需的努力工作。环境的实际无障碍是参与的一个重大障碍,人们对残疾的消极态度或误解也是如此。在此期间,一个紧密的“支持圈”,通常是家庭成员,形成了一个支持的基础。解释:患有CP的年轻人的目标是与同龄人一起充分参与成人生活。改善社区可及性、包容性和更具支持性的卫生环境将确保他们能够过上自己选择的生活。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Experiences of participation in daily life of adolescents and young adults with cerebral palsy: A scoping review.

Aim: To synthesize the experiences of 15- to 34-year-olds with cerebral palsy (CP) as they participate in key life situations of young adulthood.

Method: A mixed-methods scoping review was undertaken and six electronic databases searched (January 2001 to August 2023). Participation foci and thematic outcomes were mapped to the International Classification of Functioning, Disability and Health. Results were integrated using a convergent integrated analysis framework, and data analysis completed through thematic synthesis. Themes were mapped to the family of Participation-Related Constructs.

Results: Thirty-eight publications (32 studies; 2759 participants) were included. More participants were male (n = 1435), walked independently (n = 1319), and lived with their families (n = 1171). 'Claiming my adulthood and "doing" life' was the unifying descriptor of participation, conveying the effortful work young people felt necessary to take their places in the adult world. The physical accessibility of the environment was a significant barrier to participation, as were people's negative attitudes or misconceptions about disability. A close-knit 'circle of support', typically family members, formed a supportive foundation during this period.

Interpretation: Young people with CP aim to participate fully in adult life, alongside their peers. Improved community accessibility, inclusion, and more supportive health environments would ensure they could live the lives they choose.

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来源期刊
CiteScore
7.80
自引率
13.20%
发文量
338
审稿时长
3-6 weeks
期刊介绍: Wiley-Blackwell is pleased to publish Developmental Medicine & Child Neurology (DMCN), a Mac Keith Press publication and official journal of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the British Paediatric Neurology Association (BPNA). For over 50 years, DMCN has defined the field of paediatric neurology and neurodisability and is one of the world’s leading journals in the whole field of paediatrics. DMCN disseminates a range of information worldwide to improve the lives of disabled children and their families. The high quality of published articles is maintained by expert review, including independent statistical assessment, before acceptance.
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