University of South Wales, Pontypridd, UK.
School of Health Sciences, University of Southampton, Southampton, UK.
J Appl Res Intellect Disabil. 2021 Mar;34(2):594-605. doi: 10.1111/jar.12827. Epub 2020 Nov 30.
Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered.
This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES-SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all.
Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death.
Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.
人们对可预防的成年智障人士死亡给予了相当多的关注。然而，这些死亡的模式及其对服务的影响却较少被关注。
本文是一项针对特定智障成人人群死亡的更大规模横断研究的一部分。VOICES-SF 的数据来自智障人士服务提供商，涵盖了他们支持的所有 18 个月以上成年智障人士群体的死亡个案，共有 149 位逝者。
只有 34.2%的死亡是可以预见的，且往往是突然发生或紧随短期疾病之后。本研究确定了四种临终轨迹，并根据疾病持续时间、服务使用、护理结果、症状控制和死亡原因进行了分类。
认识到该人群的大多数死亡都是不可预见的，意味着需要更好地为预期外的临终做好准备，并提高对临终的预期。需要对智障人士的临终现象进行描述性流行病学研究。
