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患有先天性风疹的多重残疾儿童:对家庭和社区的影响。

The multihandicapped child with congenital rubella: impact on family and community.

作者信息

Appell M W

出版信息

Rev Infect Dis. 1985 Mar-Apr;7 Suppl 1:S17-21. doi: 10.1093/clinids/7.supplement_1.s17.

DOI:10.1093/clinids/7.supplement_1.s17
PMID:3890103
Abstract

In 1967, a hospital-based education program was created to provide services to multihandicapped children with congenital rubella syndrome (CRS). Since then 214 children have been enrolled, including 126 (59%) with laboratory-documented congenital rubella infection. An assessment of the ongoing training and life needs of those children with CRS enrolled in the program and the concomitant impact on families and community facilities has documented the general failure of the children to progress toward independence in spite of extensive educational programs and support services. The human and economic costs of these severe rubella-caused disabilities already have been enormous and will continue to be so for many years because even in adulthood these victims will require 24-hr supervision and care. The extensive rubella-vaccination effort made since 1969 has resulted in a progressive decline in the percentage of children requiring enrollment in this program whose disabilities are due to congenital rubella. The last such enrollee was born in 1981.

摘要

1967年,一个以医院为基础的教育项目设立,旨在为患有先天性风疹综合征(CRS)的多重残疾儿童提供服务。自那时起,已有214名儿童登记在册,其中126名(59%)有实验室记录的先天性风疹感染。对该项目中登记的患有CRS的儿童当前的培训和生活需求以及对家庭和社区设施的相应影响进行的评估表明,尽管有广泛的教育项目和支持服务,但这些儿童普遍未能在实现独立方面取得进展。这些由风疹导致的严重残疾所带来的人力和经济成本已经巨大,并且在许多年内仍将如此,因为即使到了成年,这些受害者仍需要全天候的监督和护理。自1969年以来广泛开展的风疹疫苗接种工作已使因先天性风疹而残疾并需要登记参加该项目的儿童比例逐步下降。最后一名此类登记儿童出生于1981年。

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