Whitfield Kyle, LaBrie Martin
University of Alberta, Faculty of Extension, Canada.
BMJ Support Palliat Care. 2015 Apr;5 Suppl 1:A18-9. doi: 10.1136/bmjspcare-2015-000906.58.
Over time, palliative care has become "professionalised", placing a burden on health care systems to manage the suffering of individuals and families with advancing, life-limiting illness. The need to develop resources, infrastructure and policy to enhance the capacity for communities to facilitate and support individuals and families can add value to communities, enrich hospice-palliative care and reduce health care system burden.
Few examples of communities developing such capacity exist, however, this oral presentation will describe the results of one study that examined, in one rural community in western Canada, key factors that influenced their ability to address their own hospice palliative care needs. We will report on factors that helped and factors that hindered them in their initial stages of planning for better care. A follow up study that is just at its initial stages (i.e. to start in Jan./Feb., 2015) will examine the value and outcomes of a model where communities collaborate with health care providers to strengthen their hospice palliative care community level capacities. In two rural communities in western Canada, such questions asked will be: What expertise and infrastructure is required to nurture community-based palliative care initiatives? What criteria constitute community engagement and leadership in hospice palliative care development? When using a model where communities collaborate with health care providers to strengthen their hospice palliative care, what are the direct outcomes? And are these of value, and if so, in what way, and if not why not?
The two studies use multiple research methods. Both use a case study approach and framework. Results are also generated from a systematic literature review; semi-structured key informant interviews and focus group interviews.
Results from the first study reveal significant barriers to a community planning their hospice palliative care needs, such as: a lack of provincial guidelines or funds; unforeseen workload; community expectations for a hospice building versus improved care; and an overall fear of failure. Key factors supporting their planning were: improved community awareness; putting hospice palliative 'on the map' at a provincial level; substantial donations for new services etc. Although our second, follow study to determine more concrete outcomes to community leadership and collaboration with health care providers are unknown, we imagine results will speak to the need for specific and tangible resources, infrastructure and specific policy direction.
随着时间的推移，姑息治疗已变得“专业化”，这给医疗保健系统带来了负担，使其要应对患有晚期、危及生命疾病的个人和家庭的痛苦。开发资源、基础设施和政策以增强社区为个人和家庭提供便利与支持的能力，可为社区增添价值，丰富临终关怀-姑息治疗，并减轻医疗保健系统的负担。
然而，社区发展这种能力的实例很少。本次口头报告将描述一项研究的结果，该研究在加拿大西部的一个农村社区，考察了影响其满足自身临终关怀姑息治疗需求能力的关键因素。我们将报告在其规划更好护理的初始阶段，对他们有帮助的因素和有阻碍的因素。一项刚刚处于初始阶段（即2015年1月/2月开始）的后续研究，将考察社区与医疗保健提供者合作以增强其社区层面临终关怀姑息治疗能力的模式的价值和结果。在加拿大西部的两个农村社区，所提出的此类问题将是：培育基于社区的姑息治疗倡议需要哪些专业知识和基础设施？在临终关怀姑息治疗发展中，哪些标准构成社区参与和领导力？当采用社区与医疗保健提供者合作以增强其临终关怀姑息治疗的模式时，直接结果是什么？这些结果有价值吗？如果有，以何种方式有价值？如果没有，为什么没有？
这两项研究使用多种研究方法。两者都采用案例研究方法和框架。结果还来自系统的文献综述、半结构化关键信息人访谈和焦点小组访谈。
第一项研究的结果揭示了社区规划其临终关怀姑息治疗需求时存在的重大障碍，例如：缺乏省级指导方针或资金；意外的工作量；社区对临终关怀建筑与改善护理的期望；以及对失败的总体恐惧。支持其规划的关键因素有：提高社区意识；在省级层面让临终关怀姑息治疗“受到关注”；为新服务提供大量捐赠等。虽然我们关于确定社区领导力以及与医疗保健提供者合作的更具体结果的第二项后续研究尚不清楚，但我们预计结果将表明需要特定且切实的资源、基础设施和具体的政策方向。
