Wark Stuart, Hussain Rafat, Müller Arne, Ryan Peta, Parmenter Trevor
School of Rural Medicine, University of New England, Armidale, NSW, Australia.
ANU Medical School & Research School of Population Health, Australian National University, Canberra, ACT, Australia.
J Appl Res Intellect Disabil. 2017 Nov;30(6):1151-1159. doi: 10.1111/jar.12408. Epub 2017 Aug 29.
Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations.
Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed.
Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of "isolation," "support from doctors," "general health support access" and "internal staffing issues."
Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.
智障人士预期寿命的增加导致对临终关怀服务的需求更大。然而，关于获得临终关怀支持存在哪些明显障碍，尤其是农村和城市地区的比较情况，相关知识有限。
对来自四个农村地区和两个城市地区的35名直接护理人员进行了焦点小组访谈。使用了半结构化访谈指南，重点关注医疗服务的获取。所有焦点小组数据均独立转录，然后进行主题分析。
频率分析确定了262条与医疗服务获取相关的陈述。主题分析确定了“孤立”、“医生的支持”、“一般健康支持的获取”和“内部人员配备问题”四个关键领域。
农村和城市地区都迫切需要改善临终服务的获取。为残疾人和普通医护人员开发专业培训和支持模式可能有助于减少一些已确定的障碍。
