Cockerill H, Elbourne D, Allen E, Scrutton D, Will E, McNee A, Fairhurst C, Baird G
Department of Paediatric Neurosciences Evelina Childrens Hospital Guy's and St Thomas NHS Foundation Trust, London, UK; King's Health Partners, London, UK; Department of Language and Communication Science, City University, London, UK.
Child Care Health Dev. 2014 Mar;40(2):149-57. doi: 10.1111/cch.12066. Epub 2013 May 9.
Communication is frequently impaired in young people (YP) with bilateral cerebral palsy (CP). Important factors include motoric speech problems (dysarthria) and intellectual disability. Augmentative and Alternative Communication (AAC) techniques are often employed. The aim was to describe the speech problems in bilateral CP, factors associated with speech problems, current AAC provision and use, and to explore the views of both the parent/carer and young person about communication.
A total population of children with bilateral CP (n = 346) from four consecutive years of births (1989-1992 inclusive) with onset of CP before 15 months were reassessed at age 16-18 years. Motor skills and speech were directly assessed and both parent/carer and the young person asked about communication and satisfaction with it.
Sixty had died, eight had other conditions, 243 consented and speech was assessed in 224 of whom 141 (63%) had impaired speech. Fifty-two (23% of total YP) were mainly intelligible to unfamiliar people, 22 (10%) were mostly unintelligible to unfamiliar people, 67 (30%) were mostly or wholly unintelligible even to familiar adults. However, 89% of parent/carers said that they could communicate 1:1 with their young person. Of the 128 YP who could independently complete the questions, 107 (83.6%) were happy with their communication, nine (7%) neither happy nor unhappy and 12 (9.4%) unhappy. A total of 72 of 224 (32%) were provided with one or more types of AAC but in a significant number (75% of 52 recorded) AAC was not used at home, only in school. Factors associated with speech impairment were severity of physical impairment, as measured by Gross Motor Function Scale level and manipulation in the best hand, intellectual disability and current epilepsy.
In a population representative group of YP, aged 16-18 years, with bilateral CP, 63% had impaired speech of varying severity, most had been provided with AAC but few used it at home for communication.
双侧脑瘫(CP)的年轻人(YP)的沟通能力常常受损。重要因素包括运动性言语问题(构音障碍)和智力残疾。常采用辅助和替代沟通(AAC)技术。目的是描述双侧CP患者的言语问题、与言语问题相关的因素、当前AAC的提供和使用情况,并探讨家长/照顾者和年轻人对沟通的看法。
对连续四年出生(1989 - 1992年,含1992年)且15个月前发病的双侧CP儿童(n = 346)在16 - 18岁时进行重新评估。直接评估运动技能和言语能力,并询问家长/照顾者和年轻人关于沟通及对沟通的满意度。
60人已死亡,8人有其他疾病,243人同意参与,对其中224人进行了言语评估,其中141人(63%)存在言语障碍。52人(占YP总数的23%)对不熟悉的人来说基本能听懂,22人(10%)对不熟悉的人来说大多听不懂,67人(30%)甚至对熟悉的成年人来说大多或完全听不懂。然而,89%的家长/照顾者表示他们能与自己的年轻人进行一对一沟通。在128名能够独立完成问题的YP中,107人(83.6%)对自己的沟通情况感到满意,9人(7%)既不满意也不不满意,12人(9.4%)不满意。224人中共有72人(32%)获得了一种或多种类型的AAC,但在相当数量的人中(记录的52人中的75%),AAC仅在学校使用,在家中未使用。与言语障碍相关的因素包括身体损伤的严重程度(通过粗大运动功能量表水平和优势手的操作能力来衡量)、智力残疾和当前癫痫。
在一个具有代表性的16 - 18岁双侧CP的YP群体中,63%的人存在不同程度的言语障碍,大多数人已获得AAC,但很少有人在家中使用它进行沟通。