智障人士生命的最后几个月：一项基于英国人口的智障社区服务中的死亡与临终研究。
Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.
作者信息
Todd Stuart, Bernal Jane, Shearn Julia, Worth Rhian, Jones Edwin, Lowe Kathy, Madden Phil, Barr Owen, Forrester Jones Rachel, Jarvis Paul, Kroll Thilo, McCarron Mary, Read Sue, Hunt Katherine
机构信息
Care Sciences, University of South Wales, Pontypridd, UK.
Learning Disability Wales, Cardiff, UK.
出版信息
J Appl Res Intellect Disabil. 2020 Nov;33(6):1245-1258. doi: 10.1111/jar.12744. Epub 2020 May 31.
BACKGROUND
Population-based data are presented on the nature of dying in intellectual disability services.
METHODS
A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF.
RESULTS
The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.
CONCLUSION
Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.
背景
呈现了基于人群的数据，涉及智力残疾服务中的死亡性质。
方法
对英国的智力残疾服务提供者样本进行了为期18个月的回顾性调查，这些提供者为超过12000人提供支持。获取了该人群中222例死亡的核心数据。对于158例（71%）死亡，受访者返回了补充并修改后的VOICES-SF版本。
结果
观察到的死亡率为每年每1000名受支持人员中有12.2例死亡，但只有略多于三分之一的死亡是护理人员预期的。死亡模式、日常护理地点和外部支持的可用性对临终结局产生了相当大的影响。
结论
在智力残疾服务中，死亡并非常见事件。智力残疾者面临的一个主要不利因素是他们的死亡相对难以预料。生活在支持性居住环境中的智力残疾者，即使其死亡是可预期的，结局也较差。
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