Lovisenberg Diaconal University College, Norway.
Oslo and Akershus University College, Norway.
Nurs Ethics. 2019 May;26(3):767-777. doi: 10.1177/0969733017727151. Epub 2017 Sep 11.
A total of 71,000 people in Norway suffer from some form of dementia in 2013, of whom approximately 30,000 are in nursing homes. Several studies focus on the experiences of those who have close relatives and who are staying in a nursing home. Results show that a greater focus on cooperation between nursing staff and relatives is a central prerequisite for an increased level of care. Benefits of developing systematic collaboration practices include relief for nursing staff, less stress, and greater mutual understanding. Going through studies focusing on the experiences of nursing home patients' relatives, negative experiences are in the majority. In this study, relatives are invited to share positive experiences regarding the care of their loved ones; a slightly different perspective, in other words.
The aim of the study is to investigate relatives of persons with dementia's experiences with quality care in nursing homes.
The study is a part of a larger project called Hospice values in the care for persons with dementia and is based on a qualitative design where data are generated through narrative interviews. The chosen method of analysis is the phenomenological-hermeneutical method for the study of lived experiences.
Participants in the project were eight relatives of persons with dementia who were living in nursing homes, long-term residences. The sampling was targeted, enrolment happened through collective invitation. All relatives interested were included.
The Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services approve the study.
Findings show that relatives have certain expectations as to how their loved ones ought to be met and looked after at the nursing home. The results show that in those cases where the expectations were met, the relatives' experiences were associated with engagement, inclusion and a good atmosphere. When the expectations were not met, the relatives experienced powerlessness, distrust and guilt.
The results are discussed considering the concepts of trust, power and asymmetry.
When asked about experiences with quality care, the relatives spoke both of expectations met and of expectations not met. Results in this study are important knowledge for developing units where performing quality care is the overall aim.
2013 年，挪威共有 71000 人患有某种形式的痴呆症，其中约 30000 人住在养老院。有几项研究关注的是那些有近亲且住在养老院的人的经历。结果表明，更加注重护理人员与亲属之间的合作，是提高护理水平的一个核心前提。发展系统协作实践的好处包括减轻护理人员的负担、减少压力和增进相互理解。通过研究养老院患者亲属的经历，大多数结果都是负面的。在这项研究中，我们邀请亲属分享他们照顾亲人的积极体验；换句话说，这是一个略有不同的视角。
本研究旨在调查痴呆症患者亲属对养老院护理质量的体验。
本研究是一个名为“临终关怀价值观在痴呆症患者护理中的作用”的更大项目的一部分，采用定性设计，通过叙事访谈生成数据。选择的分析方法是现象学-解释学方法，用于研究生活体验。
该项目的参与者是 8 名住在养老院的痴呆症患者的亲属，这些养老院是长期居住的地方。抽样是有针对性的，通过集体邀请进行招募。所有感兴趣的亲属都被包括在内。
挪威区域伦理委员会和挪威社会科学数据服务机构批准了该研究。
研究结果表明，亲属对亲人在养老院的照顾和护理有一定的期望。结果表明，在那些期望得到满足的情况下，亲属的体验与参与、包容和良好的氛围相关联。当期望未得到满足时，亲属会感到无能为力、不信任和内疚。
结果考虑了信任、权力和不对称的概念进行了讨论。
当被问及护理质量的体验时，亲属们谈到了期望得到满足和未得到满足的情况。本研究的结果对于开发以提高护理质量为总体目标的单位非常重要。
