残疾儿童及其家庭的需求。
Needs of disabled children and their families.
作者信息
Milner J, Bungay C, Jellinek D, Hall D M
机构信息
St George's Hospital, London.
出版信息
Arch Dis Child. 1996 Nov;75(5):399-404. doi: 10.1136/adc.75.5.399.
Abstract
In the new NHS those who provide services for disabled children need to measure and demonstrate their effectiveness, but there are no easily available outcome measures for use by child development centres and teams. The development of an alternative approach, using a series of statements of good practice, is described. Parents of children with cerebral palsy were asked to participate in semistructured interviews, to ascertain the value and relevance of these quality statements. Parents were most concerned about the standard of news breaking and early follow up, the sharing of information, and the supply and repair of equipment. The findings were used to modify the quality checklist and it is proposed that this should form the basis of a "charter for disabled children and their families'.
摘要
在新的国民医疗服务体系中，为残疾儿童提供服务的机构需要衡量并证明其服务成效，但儿童发展中心和团队却没有现成可用的成果衡量指标。本文描述了一种使用一系列良好实践声明的替代方法的开发过程。研究邀请了脑瘫患儿的家长参与半结构化访谈，以确定这些质量声明的价值和相关性。家长们最关心的是消息告知和早期跟进的标准、信息共享以及设备供应和维修。研究结果被用于修改质量检查表，并提议以此作为“残疾儿童及其家庭宪章”的基础。
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