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一项来自美国全州范围内针对智障人士难忘医疗保健决策的调查的内容分析。

A content analysis from a US statewide survey of memorable healthcare decisions for individuals with intellectual disability.

作者信息

Fisher Kathleen M, Green Michael J, Orkin Fredrick K, Chinchilli Vernon M

机构信息

College of Nursing and Health Professions, Drexel University, Mail Stop 501, 245 North 15th Street, Philadelphia, PA19102-1101, USA.

出版信息

J Intellect Dev Disabil. 2009 Sep;34(3):258-65. doi: 10.1080/13668250903083332.

DOI:10.1080/13668250903083332
PMID:19681006
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2862000/
Abstract

BACKGROUND

Little is known about surrogate healthcare decision-making for individuals with intellectual disability (ID). This study examined healthcare decision-making by residential-agency directors to learn their process and the extent to which the individual is included.

METHOD

Content analysis of qualitative data from a mailed survey of residential-agency directors in a large US northeastern state.

RESULTS

Narrative comments of 102 directors (65% of respondents) are reported. Three themes emerged: (a) Identifying someone else's "best interest" is challenging; (b) Perceptions of the healthcare community, especially related to quality of life, can influence care provided; and (c) Surrogate decision-making is a team effort.

CONCLUSIONS

With knowledge of how decisions are made, the healthcare community can better interact with the complex array of service agencies and persons who determine care for this vulnerable population.

摘要

背景

对于智障人士的替代医疗决策,人们了解甚少。本研究调查了寄宿机构负责人的医疗决策情况,以了解他们的决策过程以及个人参与的程度。

方法

对美国东北部一个大州的寄宿机构负责人邮寄调查的定性数据进行内容分析。

结果

报告了102位负责人(占受访者的65%)的叙述性评论。出现了三个主题:(a)确定他人的“最大利益”具有挑战性;(b)对医疗界的看法,尤其是与生活质量相关的看法,会影响所提供的护理;(c)替代决策是团队的努力。

结论

了解决策是如何做出的后,医疗界可以更好地与决定为这一弱势群体提供护理的一系列复杂服务机构和人员进行互动。

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本文引用的文献

1
Proxy healthcare decision-making for persons with intellectual disability: perspectives of residential-agency directors.代理智障人士的医疗决策:住宿机构主管的观点。
Am J Intellect Dev Disabil. 2009 Nov;114(6):401-10. doi: 10.1352/1944-7558-114.6.401.
2
Ethics consultation in dual diagnosis of mental illness and mental retardation: medical decisionmaking for community-dwelling persons.精神疾病与智力障碍双重诊断中的伦理咨询:针对社区居民的医疗决策
Camb Q Healthc Ethics. 2008 Spring;17(2):239-46. doi: 10.1017/S0963180108080274.
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The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service.护士在事故与急救护理服务中与成年智障患者沟通并获得有效同意所面临的挑战。
J Clin Nurs. 2007 Sep;16(9):1678-86. doi: 10.1111/j.1365-2702.2006.01642.x. Epub 2007 Apr 24.
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The limitations of "vulnerability" as a protection for human research participants.“脆弱性”作为对人类研究参与者的一种保护措施的局限性。
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Public Health Rep. 2004 Jul-Aug;119(4):401-8. doi: 10.1016/j.phr.2004.05.004.
8
Evaluation of qualitative research studies.定性研究的评估
Evid Based Nurs. 2003 Apr;6(2):36-40. doi: 10.1136/ebn.6.2.36.
9
Health care decision-making by adults with mental retardation.患有智力障碍的成年人的医疗保健决策。
Ment Retard. 2003 Apr;41(2):78-87. doi: 10.1352/0047-6765(2003)041<0078:HCDMBA>2.0.CO;2.
10
The ethics of surrogate decision making.替代决策的伦理问题。
West J Med. 2002 Mar;176(2):127-9.