Wiese M, Stancliffe R J, Dew A, Balandin S, Howarth G
Faculty of Health Sciences, University of Sydney, Lidcombe, NSW, Australia.
J Intellect Disabil Res. 2014 Jul;58(7):679-90. doi: 10.1111/jir.12065. Epub 2013 Jul 21.
The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death.
Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients.
There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered.
The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients' understanding, and when conversations about the end of life should occur.
本研究的目的是探讨社区生活工作人员与智障人士谈论了什么以及做了什么，以帮助他们理解死亡。
以扎根理论方法为指导，对22名曾与客户谈论过任何与死亡相关话题的工作人员进行了焦点小组访谈和一对一访谈。
几乎没有证据表明工作人员在死亡前后与客户交谈或为帮助客户理解生命终结做过什么。在死亡前，工作人员以有限的方式帮助客户理解为死亡做准备时确定愿望的方式，以及通过观察死亡过程了解死亡的样子。在有人死亡后，工作人员对客户理解死亡的不可避免性以及如何通过仪式纪念死者并缅怀他们提供的帮助有限。
这些发现对于智障人士为何对生命终结只有部分理解、支持客户理解所需的工作人员技能以及何时应该进行关于生命终结的对话具有启示意义。
