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首页> 外文期刊>Journal of applied research in intellectual disabilities: JARID >Developing Guidelines for Disclosure or Non-Disclosure of Bad News Around Life-Limiting Illness and Death to People With Intellectual Disabilities
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Developing Guidelines for Disclosure or Non-Disclosure of Bad News Around Life-Limiting Illness and Death to People With Intellectual Disabilities

机译:制定披露指南或向智力残疾人的人们享有限制疾病和死亡的坏消息的指导方针

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Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non-disclosure. Materials and methods: Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. Results: People with intellectual disabilities had wide-ranging views about disclosure. Reasons for non-disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement. Conclusion: Disclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice.
机译:背景:没有足够的证据来指导(非)披露生命疾病和死亡的坏消息的决定,对具有智力障碍的人。目的:本研究的目的是通过审查涉及披露和非披露的利益相关者的偏好(和理由),制定关于危险疾病和死亡的危险疾病和死亡的坏消息的决策指南的指导方针。材料和方法:焦点小组和访谈与109名参与者举行:智力残疾人,家庭照顾者,智力残疾专业人士和医疗医疗保健专业人员。结果:知识产权人士对披露的广泛看法。非披露原因包括:防止痛苦;对于坏消息的持票人来说太难了;坏消息的持票人缺乏知识;无法理解;没有时间的感觉;利益攸关方之间的海面相互矛盾。披露的原因包括:要知道的权利;知识帮助人员应对;需要参与。结论:披露不良消息可能会在某些情况下造成伤害,但这需要仔细评估。作者提出了现在需要在实践中进行测试的披露指南。

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