Cleary Stacey L, Morgan Prue E, Wallen Margaret, Honan Ingrid, Shields Nora, Munzel Freya E, Plummer James R, Assaad Cassandra, Karlsson Petra, Culnane Evelyn, Ding Jacqueline Y, Holmes Carlee, Dutia Iain M, Reddihough Dinah S, Imms Christine
Neurodisability & Rehabilitation, Murdoch Children's Research Institute, Parkville, VIC, Australia.
Department of Paediatrics, University of Melbourne, Parkville, VIC, Australia.
Dev Med Child Neurol. 2025 May;67(5):572-590. doi: 10.1111/dmcn.16196. Epub 2024 Dec 14.
To synthesize the experiences of 15- to 34-year-olds with cerebral palsy (CP) as they participate in key life situations of young adulthood.
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.
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.
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.
总结15至34岁脑瘫（CP）患者在参与青年期关键生活情境时的经历。
进行了一项混合方法的范围综述，并检索了六个电子数据库（2001年1月至2023年8月）。将参与重点和主题结果映射到《国际功能、残疾和健康分类》。使用收敛性综合分析框架整合结果，并通过主题综合完成数据分析。将主题映射到参与相关结构家族。
纳入了38篇出版物（32项研究；2759名参与者）。男性参与者更多（n = 1435），能够独立行走的参与者更多（n = 1319），与家人同住的参与者更多（n = 1171）。“宣称我的成年并‘过’生活”是参与的统一描述词，传达了年轻人认为在成人世界中占据一席之地所需付出的努力。环境的物理可达性是参与的重大障碍，人们对残疾的负面态度或误解也是如此。一个紧密的“支持圈”，通常是家庭成员，在此期间形成了支持基础。
患有脑瘫的年轻人旨在与同龄人一起充分参与成年生活。改善社区可达性、包容性以及更具支持性的健康环境将确保他们能够过上自己选择的生活。
