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唐氏综合征:对诊断信息披露的不满是否不可避免?

Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable?

作者信息

Cunningham C C, Morgan P A, McGucken R B

出版信息

Dev Med Child Neurol. 1984 Feb;26(1):33-9. doi: 10.1111/j.1469-8749.1984.tb04403.x.

Abstract

A survey of a representative sample of 62 parents of Down's syndrome infants revealed a high level (58 per cent) of dissatisfaction with the procedure for disclosing the diagnosis and with the immediate counselling services. From the replies and previous reports, a 'model procedure' was set up in one Area Health Authority to test the hypothesis that dissatisfaction is inevitable. Parents receiving the 'model procedure' reported 100 per cent satisfaction, compared with 20 per cent in a control group. It was concluded that dissatisfaction is not inevitable but results directly from organisational difficulties in not providing the necessary service.

摘要

一项对62位唐氏综合征患儿家长的代表性样本的调查显示,家长对诊断结果告知程序以及即时咨询服务的不满程度很高(58%)。根据这些回复以及之前的报告,一个地区卫生局制定了一套“标准程序”,以检验不满情绪不可避免这一假设。接受“标准程序”的家长报告称满意度为100%,而对照组的满意度为20%。研究得出结论,不满并非不可避免,而是直接源于未能提供必要服务所导致的组织困难。

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