居家护理服务中的以患者为中心的痴呆症照护 - 强烈推荐但仍难以实现：一项定性访谈研究。
Person-centered dementia care in home care services - highly recommended but still challenging to obtain: a qualitative interview study.
机构信息
The Research Centre for Age-related Functional Decline and Disease, Innlandet Hospital Trust, Brumunddal, Norway.
Faculty of Health and Social Sciences, Molde University College, Molde, Norway.
出版信息
BMC Health Serv Res. 2021 Jul 22;21(1):723. doi: 10.1186/s12913-021-06722-8.
BACKGROUND
Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making.
METHODS
We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019.
RESULTS
The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: "It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff."
CONCLUSION
The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.
背景
痴呆症是导致老年人残疾和依赖的主要原因之一，痴呆症患者需要全面的医疗保健服务，最好是在自己的家中。为满足他们对健康和社会护理的需求，需要有组织良好的专为痴呆症患者设计的家庭护理服务。因此，了解痴呆症患者对家庭护理服务的体验，以及该服务是否响应他们的愿望和需求，这一点非常重要。本研究旨在探讨痴呆症患者对家庭护理服务的体验，了解服务的连续性，服务如何适应痴呆症患者，以及患者如何体验以患者为中心的护理和共同决策。
方法
我们采用了基于现象学-解释学方法的定性、探索性设计，并对 12 名来自挪威四个城市的中重度痴呆症患者进行了个体深入访谈。这些访谈于 2019 年 2 月进行。
结果
研究结果表明，参与者非常赞赏能够安全地留在自己家中的可能性，并且大多对工作人员的支持表示赞赏。他们对服务有不同的看法和理解，并体验到用户参与和个性化、定制化服务的机会有限。总结研究结果的总体主题是：“痴呆症患者很难理解和影响家庭护理服务，但这些服务为他们提供了留在家里并在工作人员的支持下感到安全的可能性。”
结论
参与者并没有完全理解他们从家庭护理服务中获得的护理和支持的组织方式，但他们适应了服务，而没有根据自己的需求或愿望要求改变服务。尽管国家和国际上都推荐以患者为中心的护理，但参与者很少参与到确定他们所接受的服务中，而且他们认为如何参与共同决策也不清楚。
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