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脑瘫幼儿家长在物理治疗和职业治疗方面的经历与需求。

Parents' experiences and needs regarding physical and occupational therapy for their young children with cerebral palsy.

作者信息

Kruijsen-Terpstra Anne J A, Verschuren Olaf, Ketelaar Marjolijn, Riedijk Larisa, Gorter Jan Willem, Jongmans Marian J, Boeije Hennie

机构信息

Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Rembrandtkade 10, 3583 TM Utrecht, The Netherlands; Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands.

Faculty of Social Sciences, Department of Methodology and Statistics, Utrecht University, PO Box 80140, 3508 TC Utrecht, The Netherlands.

出版信息

Res Dev Disabil. 2016 Jun-Jul;53-54:314-22. doi: 10.1016/j.ridd.2016.02.012. Epub 2016 Mar 11.

Abstract

OBJECTIVE

To explore the experiences and needs of parents of young children (aged 2-4 years) with cerebral palsy (CP) regarding their child's physical and occupational therapy process in a rehabilitation setting.

METHODS

A qualitative design was used involving semi-structured interviews with 21 parents of young children with CP. Interviews were conducted until informational redundancy was achieved.

RESULTS

Three major themes were identified: Information, communication and partnership. A fourth, overarching theme emerged: The process of parent empowerment. Experiences and needs differed between parents and changed over time.

CONCLUSION

This study suggests that various themes play a key role in the experiences and needs of parents of young children with CP. The identified themes provide important insights into how and why service providers might change their approach.

PRACTICE IMPLICATIONS

Becoming empowered is a dynamic process for parents, in which both parents and service providers play a role. Service providers should continually adapt their role to parents' needs of information, communication and partnership, and they should support and facilitate parents in becoming empowered. For that, service providers should be educated on the process of parent empowerment, on ways to facilitate this process and on the importance of involving and interacting with parents. This allows families of young children with CP to be provided with services that best suit their needs.

摘要

目的

探讨脑瘫(CP)幼儿(2至4岁)家长在康复环境中对其孩子物理治疗和作业治疗过程的体验与需求。

方法

采用定性设计,对21名脑瘫幼儿的家长进行半结构化访谈。访谈持续进行直至获得信息冗余。

结果

确定了三个主要主题:信息、沟通与伙伴关系。第四个总体主题浮现出来:家长赋权过程。家长之间的体验和需求存在差异且随时间变化。

结论

本研究表明,各种主题在脑瘫幼儿家长的体验和需求中发挥着关键作用。所确定的主题为服务提供者如何以及为何可能改变其方法提供了重要见解。

实践意义

赋权对家长来说是一个动态过程,在此过程中家长和服务提供者都发挥作用。服务提供者应不断根据家长对信息、沟通和伙伴关系的需求调整自身角色,并应支持和促进家长实现赋权。为此,应就家长赋权过程、促进该过程的方法以及与家长互动和合作的重要性对服务提供者进行培训。这使得脑瘫幼儿家庭能够获得最符合其需求的服务。

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