学龄期脑性瘫痪儿童康复、教育、辅具情况随访

Rehabilitation, Education, and Assistive Devices Utilization of School Age Children with Cerebral Palsy: A Follow-up Study

目的对脑瘫患儿进行康复、教育及辅助器具相关情况的随访。方法对2012年至2015年本中心完成随访的80名脑瘫患儿家长进行电话随访并填写调查表。结果 69名(85.25%)继续接受康复,11名(13.75%)停止康复训练。45名(56.25%)在普通小学接受教育,15名(18.75%)在特殊小学接受教育,4名(5.00%)在养护机构,16名(20.00%)在家。患儿现阶段的困难和需求主要有继续康复、接受学校教育、希望报销多个机构康复费用等。61名(76.25%)申请过辅具,19名(23.75%)没有申请过。辅具申请过程的反馈依次是:申请过程顺利;申请过,但因种种原因没得到;申请到的辅具不合适/不好用等。59名儿童(73.75%)目前需要辅助器具,21名儿童(26.25%)不需要。当问及"目前需要的辅助器具种类"时,19人次(约20%)的回答是不了解辅具类型或不知道需要什么辅具。结论为学龄期患儿提供有质有量的康复服务和教育服务仍是相关部门需要努力的工作;极需要对残疾患儿及家长普及辅助器具相关知识及肢体残障者辅助器具的临床应用知识等,辅助器具供给单位也需要与残疾患儿及家长就辅助器具进行更多沟通,以减少资源浪费,增加资源合理利用,为残疾患儿提供更多福利。

Objective To follow up the rehabilitation, education, and assistive devices utilization of school age children with cerebral palsy. Methods From 2012 to 2015, 80 children with cerebral palsy were called their parents with telephone and filled in the questionnaires.Results 69 children（85.25%） continued to receive rehabilitation, 11 children（13.75%） stopped rehabilitation. 42 children（56.25%） received education in ordinary schools, 15 children（18.75%） received education in special schools, 4 children（5.00%） were nursed in nursing institution, 16 children（20.00%） stayed at home and did not receive any education. The main problem and needing at present were receiving rehabilitation, receiving school education, relief the rehabilitation cost of more than one institution, etc. 61 children（76.25%） ever applied for assistive devices, 19 children（23.75%） did not. The feedback of application process in order were smoothly; applied, but didn＇t get; the assistive devices that received was inappropriate. 29 children（73.75%） needed assistive devices currently, 21 children（26.25%） did not. When asked the category of needed assistive devices at present, 19 parents（20%） answered that they did not know the category of assistive devices well or they did not know which kind of assistive devices they needed. Conclusion It is important to provide quality and quantity rehabilitation and education service, popularize the knowledge of assistive devices and their clinical application for cerebral palsy children. Assistive devices providing departments should do more communication with cerebral palsy children and their parents, in order to reduce the waste of resources, and increase the rational use of resources, and provide more benefits for children with disabilities.