Department of Nursing, Karlstad University, Karlstad, Sweden.
J Clin Nurs. 2013 Jun;22(11-12):1672-81. doi: 10.1111/jocn.12028. Epub 2012 Nov 7.
To explore the role of relatives in the patient participation process for persons with dementia living in special care units in Norwegian nursing homes, with focus on everyday life.
Studies exploring the experience of relatives of persons with dementia as to their role in the patient participation process are limited.
The study had an explorative grounded theory design.
Data collection was carried out by interviews with twelve close relatives. Simultaneously, data analysis was performed with open, axial and selective coding.
The relatives' role in the patient participation process was experienced as transitions between different roles to secure the resident's well-being, which was understood as the resident's comfort and dignity. This was the ultimate goal for their participation. The categories 'being a visitor', 'being a spokesperson', 'being a guardian' and 'being a link to the outside world' described the different roles. Different situations and conditions triggered different roles, and the relatives' trust in the personnel was a crucial factor.
The study has highlighted the great importance of relatives' role in the patient participation process, to secure the well-being of residents living in special care units. Our findings stress the uttermost need for a high degree of competence, interest and commitment among the personnel together with a well functioning, collaborative and cooperative relationship between the personnel and the relatives of persons with dementia. The study raises several important questions that emphasise that more research is needed.
Relatives need to be seen and treated as a resource in the patient participation process in dementia care. More attention should be paid to initiating better cooperation between the personnel and the relatives, as this may have a positive impact both on the residents' and the relatives' well-being.
探索亲属在挪威养老院特殊护理单元中参与痴呆症患者护理过程中的作用，重点关注日常生活。
探索痴呆症患者亲属在患者参与过程中的体验的研究有限。
本研究采用探索性扎根理论设计。
通过对 12 名近亲进行访谈收集数据。同时，通过开放式、轴向式和选择性编码进行数据分析。
亲属在患者参与过程中的角色被体验为在不同角色之间的转变，以确保居民的福祉，这被理解为居民的舒适和尊严。这是他们参与的最终目标。“访客”、“代言人”、“监护人”和“与外界的联系”这几个类别描述了不同的角色。不同的情况和条件引发了不同的角色，而亲属对人员的信任是一个关键因素。
本研究强调了亲属在特殊护理单元中参与患者参与过程的重要性，以确保居民的福祉。我们的研究结果强调了人员必须具备高度的能力、兴趣和承诺，以及人员与痴呆症患者亲属之间的良好协作关系。该研究提出了几个重要问题，强调需要进一步研究。
亲属在痴呆症护理中的患者参与过程中需要被视为一种资源。应更加关注促进人员与亲属之间更好的合作，因为这可能对居民和亲属的福祉产生积极影响。
