Stevenson C J, Pharoah P O, Stevenson R
Department of Public Health, University of Liverpool, UK.
Dev Med Child Neurol. 1997 May;39(5):336-42. doi: 10.1111/j.1469-8749.1997.tb07441.x.
Service provision for those with cerebral palsy (CP) becomes fragmented after adolescence. Young people with CP in two age groups, their carers and associates, were interviewed, and use of health and social services was investigated. Leisure activities were also compared with a matched control group of able-bodied young people. Use of health and social services decreased when the children with CP left school, thereby increasing the demands upon carers. Carers expressed anxieties about the provision of services, and frustration in obtaining information about help. Findings from the questionnaires showed the young people with CP in both age groups to be socially less active than the controls. Among the subjects, the older age group was socially less active than the younger age group. Communication is poor both between the agencies providing care and between the agencies and the young person or carer. There is a need to identify those with responsibility for coordinated-care planning for adolescents with CP.
为脑瘫患者提供的服务在其青春期后变得零散。对两个年龄组的脑瘫青少年及其照顾者和相关人员进行了访谈,并对健康和社会服务的使用情况进行了调查。还将休闲活动与一组年龄匹配的健全青少年对照组进行了比较。脑瘫儿童离开学校后,健康和社会服务的使用减少,从而增加了照顾者的负担。照顾者对服务的提供表示担忧,并在获取帮助信息方面感到沮丧。问卷调查结果显示,两个年龄组的脑瘫青少年在社交方面都不如对照组活跃。在这些受试者中,年龄较大的组在社交方面比年龄较小的组更不活跃。提供护理的机构之间以及机构与青少年或照顾者之间的沟通都很差。有必要确定那些负责为患有脑瘫的青少年制定协调护理计划的人员。