University of Sydney, Lidcombe, NSW, Australia.
J Appl Res Intellect Disabil. 2012 Nov;25(6):571-83. doi: 10.1111/jar.12000. Epub 2012 Sep 21.
The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services.
Focus groups and individual interviews were conducted, guided by grounded theory methodology.
The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner.
End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.
本研究旨在基于社区生活服务人员的经验，探索智力障碍者临终关怀和死亡的现状。
采用扎根理论方法，进行了焦点小组和个人访谈。
临终关怀和死亡的现状包括五个关键的“问题”：死亡知识、伦理价值观、关怀的地点、关怀的方式和死后关怀。这些问题与“伙伴”有关，包括临终者、其他客户、同事、家属、外部卫生服务和验尸官。
临终关怀代表了所涉及的护理问题和护理伙伴之间的复杂相互作用。尽管存在这种复杂性，工作人员仍致力于提供临终关怀。
