额颞叶痴呆及类似病症患者的尊严——一项关于家庭照料者观点的定性研究
Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers.
作者信息
Sagbakken Mette, Nåden Dagfinn, Ulstein Ingun, Kvaal Kari, Langhammer Birgitta, Rognstad May-Karin
机构信息
Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo and Akershus University College, Oslo, Norway.
The Norwegian Centre for Migration and Minority Health (NAKMI), Oslo, Norway.
出版信息
BMC Health Serv Res. 2017 Jun 23;17(1):432. doi: 10.1186/s12913-017-2378-x.
BACKGROUND
Frontotemporal dementia (FTD) constitutes on average 10-15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant. From the perspective of close relatives, this study aims to develop knowledge related to dignified or undignified care of patients with FTD and similar conditions.
METHODS
A qualitative, descriptive, and explorative design were employed to address the aims of this study. We interviewed nine relatives of people with FTD and similar conditions living in nursing homes, and two relatives of people living at home but attending day center 5 days a week.
RESULTS
Relatives described the transition from being a close relative to someone who had little influence or knowledge of what constituted the care and the daily life of their loved ones. According to relatives' descriptions, patients are deprived of dignity in various ways: through limited interaction with peers and close relatives, limited confirmation of identity through staff who know them well, lack of possibilities for making autonomous decisions or entertaining meaningful roles or activities. Examples provided from the day care centres show how dignity is maintained through identity-strengthening activities conducted in different places, under various kinds of supervision and care, and together with people representing different roles and functions.
CONCLUSIONS
Maintaining a link with the world outside the institution, through closer cooperation between the institution and family members, and/or by the use of day care centres, seems to facilitate prevention of many of the factors that may threaten dignified care.
背景
额颞叶痴呆（FTD）在较年轻人群（≤65岁）的痴呆症中平均占10 - 15%，但也会影响老年人。这些患者表现出社交行为下降，和/或语言失语、冷漠以及洞察力丧失，且呈渐进性。在入住不同类型的机构护理前后，维护尊严似乎都非常重要，但相关研究较少。从近亲的角度来看，本研究旨在增进对FTD及类似病症患者尊严护理或非尊严护理的认识。
方法
采用定性、描述性和探索性设计来实现本研究的目标。我们采访了9位居住在养老院的FTD及类似病症患者的亲属，以及2位居家但每周有5天参加日间护理中心的患者的亲属。
结果
亲属们描述了从作为近亲到对其亲人的护理和日常生活几乎没有影响力或了解的转变过程。根据亲属的描述，患者在多种方式上被剥夺了尊严：与同龄人及近亲的互动有限，熟悉他们的工作人员对其身份确认不足，缺乏自主决策或参与有意义角色或活动的机会。日间护理中心提供的例子表明，尊严是如何通过在不同场所、在各种监督和护理下以及与代表不同角色和职能的人一起开展的强化身份活动得以维护的。
结论
通过机构与家庭成员之间更密切的合作，和/或利用日间护理中心，与机构外的世界保持联系，似乎有助于预防许多可能威胁尊严护理的因素。
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