Grindrod Andrea, Rumbold Bruce
Palliative Care Unit, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Melbourne, VIC, Australia.
J Appl Res Intellect Disabil. 2017 Nov;30(6):1125-1137. doi: 10.1111/jar.12372. Epub 2017 May 24.
There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services.
A mixed-methods approach was used. Quantitative data were gathered through a survey of disability support staff working in government-managed community living services in the Australian state of Victoria. These quantitative data informed the collection of qualitative data through focus groups and research interviews. A public health palliative care framework provided the basis for developing an organizational change model from the consolidated data.
There is a strong relationship between organizational structure and culture, and both influence end-of-life practice in community living services. Barriers to good practice arise from the differing attitudes of paid carers involved, and from uncoordinated approaches reflecting misaligned service systems in the disability and palliative care fields. Organizational reorientation is crucial to achieving sustainable change that will support healthy dying.
End-of-life care requires the collaboration of disability and palliative care services, but for care to achieve palliative care goals, the collaboration must be led by disability services. We outline here an organizational model we have developed from public health principles to manage end-of-life care in community living services.
残疾领域已达成广泛共识，即应向智障人士提供与当代姑息治疗所倡导的质量一致的临终关怀。然而，在将姑息治疗策略应用于智障人士的临终关怀时，尤其是残疾社区生活服务中的智障人士，会遇到各种障碍。
采用了混合方法。通过对澳大利亚维多利亚州政府管理的社区生活服务中残疾支持人员的调查收集定量数据。这些定量数据为通过焦点小组和研究访谈收集定性数据提供了依据。一个公共卫生姑息治疗框架为从整合数据中开发组织变革模型提供了基础。
组织结构与文化之间存在密切关系，两者都会影响社区生活服务中的临终实践。良好实践的障碍源于相关付费护理人员的不同态度，以及反映残疾和姑息治疗领域服务系统不一致的不协调方法。组织重新定位对于实现支持安详离世的可持续变革至关重要。
临终关怀需要残疾服务和姑息治疗服务的协作，但为了使护理达到姑息治疗目标，协作必须由残疾服务主导。我们在此概述一个基于公共卫生原则开发的组织模型，用于管理社区生活服务中的临终关怀。
