背景:可靠的痴呆症护理和支持服务途径对于及时诊断和减少从诊断到护理和支持的时间延迟至关重要。然而,看护者通常很难找到有关在痴呆症诊断之前和之后去哪里以及做什么的信息。在农村和地区,获得痴呆症护理和支持服务尤其具有挑战性。这种定性,叙事调查研究探索了照顾者的代理,和痴呆症患者,在他们导航区域痴呆症护理和支持服务路径中。
方法:对来自维多利亚州某个地区的10名痴呆症患者进行了半结构化访谈,澳大利亚。数据分析以吉登斯结构理论的三方框架为指导,该框架考虑了护理人员的意图,在他们的痴呆症护理和支持服务路径的导航中采取行动的能力和权力。
结果:照顾者有意向;然而,他们并不总是有能力和权力采取行动。信息在促进代理方面发挥了关键作用。健康素养很重要-作为关于在哪里查找/查找信息的知识,以及通过经验获得的知识,教育或向他人学习。如果看护人遇到障碍,他们缺乏能力和权力。这发生在缺乏信息或知识的地方,不正确的信息(如误诊),以及政府机构阻碍护理人员努力的地方。
结论:信息和知识对于痴呆症护理和支持服务途径的发展至关重要。健康素养是一种重要的资源,和照顾者将受益于痴呆症的教育/培训。护理人员机构在他们的痴呆症护理和支持服务途径中依赖于护理人员自己寻找信息并寻求知识和教育。然而,GP,当地医疗服务提供者,和痴呆症组织在帮助护理人员找到获得痴呆症护理和支持服务的信息方面发挥着重要作用。
BACKGROUND: Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways.
METHODS: Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens\' Theory of Structuration which considered the carers\' intentionality, capacity and power to act in the navigation of their dementia care and support service pathways.
RESULTS: Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers\' efforts.
CONCLUSIONS: Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.