Helgesen Ann Karin, Athlin Elsy, Larsson Maria
Karlstad University, Sweden; Østfold University College, Norway
Karlstad University, Sweden.
Nurs Ethics. 2015 Jun;22(4):404-16. doi: 10.1177/0969733014538886. Epub 2014 Jul 28.
Research concerning relatives' participation in the everyday care related to persons living in special care units for persons with dementia is limited.
To examine relatives' participation in their near one's everyday care, the level of burden experienced and important factors for participation, in this special context.
The study had a cross-sectional design, and data collection was carried out by means of a study-specific questionnaire.
A total of 233 relatives from 23 different special care units participated.
The study was approved by the Norwegian Social Science Data Services.
A great majority of relatives reported that they visited weekly and were the resident's spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden.
This study indicated that relatives were able to make a difference to their near one's everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident's preferences, information concerning these issues is of utmost importance.
This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident's well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents' life history and preferences is available and used should be implemented in practice.
关于亲属参与痴呆症患者特殊护理单元中患者日常护理的研究有限。
在这种特殊背景下，考察亲属对其亲人日常护理的参与情况、所经历的负担程度以及参与的重要因素。
本研究采用横断面设计，通过特定研究问卷进行数据收集。
来自23个不同特殊护理单元的233名亲属参与了研究。
该研究获得了挪威社会科学数据服务中心的批准。
绝大多数亲属报告称他们每周探访且是患者的代言人，但很少真正参与有关患者日常护理的决策。很少有人将参与视为负担。
本研究表明，亲属能够凭借其生活经历方面的专业知识、对患者的深入了解以及与患者的情感纽带，对亲人的日常生活产生影响并确保护理质量。由于了解患者是提供符合其偏好的个性化护理的前提条件，有关这些问题的信息至关重要。
本研究促使人们思考作为代言人意味着什么，以及在这个角色中日常护理是否被忽视。尽管亲属对所提供的护理感到满意，但其中一半人认为他们的参与对患者的幸福至关重要。这表明亲属能够凭借其生活经历方面的专业知识、对患者的深入了解以及与患者的情感纽带提供重要的额外帮助。在实践中应建立良好的常规做法，确保有关患者生活史和偏好的书面信息可得并得到利用。
