Bergman Mette, Graff Caroline, Eriksdotter Maria, Fugl-Meyer Kerstin S, Schuster Marja
Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Neurogeriatrics, Karolinska Institutet, 141 57, Huddinge, Sweden.
Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Clinical Geriatrics, Karolinska Institutet, 141 57, Huddinge, Sweden.
Med Health Care Philos. 2016 Sep;19(3):341-9. doi: 10.1007/s11019-016-9696-3.
Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease (AD). The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses' lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses' lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them trapped at home, both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended "lived space" with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective.
仅有少数研究探讨早发性阿尔茨海默病（AD）患者配偶的生活世界。本研究旨在探究配偶在其伴侣被诊断为AD时的生活世界，重点关注配偶的生活体验。该研究采用解释现象学框架。进行了十次深度访谈。结果表明，配偶的生活世界随诊断结果而改变。他们体验到一种受禁锢的生存状态，额外的责任、恐惧和担忧使他们在身体和精神上都被困在家里。在对自由的渴望中，新的策略和态度帮助配偶与伴侣创造出一个扩展的“生活空间”。研究结果强调了关注配偶生活世界并在此基础上提出临床建议的重要性。最重要的是，生活世界视角对我们如何理解护理具有启示意义。我们希望挑战所有不同的医疗保健专业人员，并邀请他们从生活世界视角讨论护理的深层意义以及在与脆弱他人接触时的专业定义。
