Cronfalk Berit Seiger, Norberg Astrid, Ternestedt Britt-Marie
Department of Nursing Sciences and Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden.
Department of Nursing, Stord Haugesund University College, Haugesund, Norway.
Scand J Caring Sci. 2018 Mar;32(1):168-176. doi: 10.1111/scs.12442. Epub 2017 May 2.
In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.
为了更好地理解痴呆症患者的痛苦背景,应做出更大努力来了解和识别这类患者在养老院生活时的经历。这项定性研究的目的是,根据家庭成员的认知,进一步了解痴呆症患者在搬到养老院后如何体验和应对生活状况的变化。通过对十名家庭成员进行访谈收集定性数据,并使用内容分析法进行评估。主要研究结果表明,患有痴呆症的居民在整个病程中基本保持了完整的个性,因为他们能够保持自己的习惯和兴趣。养老院的当地环境以及居民与工作人员的关系对于获得接纳感很重要。分析过程中识别出了四个类别:处于边缘状态;归于平静;保持旧习惯和人际关系;以及对临近死亡的思考。有理由相信,旧习惯和兴趣可能会得以保留,因为这些习惯的体现深深扎根并与一个人的身份相关联,即使在经历生活中的各种变化和转变时也是如此。因此,要被接纳为原本的自己,就需要针对特定需求提供护理和服务,即以人为本。工作人员缺乏理解可能会对一个人的自尊和身份产生不利影响。因此,工作人员需要反思自己的态度和人际关系,并扩展关于如何处理诸如居民临近死亡等敏感话题的知识。要做到这一点,管理者的支持至关重要。未来的研究应侧重于为护理人员提供支持,以进一步了解居民在生命末期所经历的个体变化。