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[照顾阿尔茨海默病患者的家庭成员的生活经历:初步结果]

[The lived experience of family member caring for a person affected by Alzheimer's disease: preliminary results].

作者信息

Vellone E, Micci F, Sansoni J, Sinapi N, Cattel C

机构信息

DAI, Centro Medicina dell'Invecchiamento, Università Cattolica del S. Cuore, Roma.

出版信息

Prof Inferm. 2000 Jul-Sep;53(3):132-41.

Abstract

The aim of this article is to report the preliminary results from a phenomenological study on the lived experience of Alzheimer's caregivers. Eight caregivers involved in caring for two years at list were interviewed. The analysis of interviews by Giorgi's method showed a multidimensional reality synthesizable in eight spheres of themes: Illness, Patient, Caring, Caregiver's Life and Health, Coping, Spouse/Family, Others, Feelings. Illness has a great impact on the caregivers' life and causes the loss of the affected person even before his/her death. Caring is very hard and emotionally involving. Caregivers mainly complain the lack of support from the National Health System. The continuous involvement in caring produces also health problems, depression, and negative effects within the family. Others are considered as bad. The most common feelings are fear for possible accidents to the patients and remorses. Some caregivers have good coping style putting their faith in God, valuing the closeness of the family and living daily. The utility of the eight spheres of themes are discussed in order to guide the practice toward the caregivers.

摘要

本文旨在报告一项关于阿尔茨海默病照料者生活经历的现象学研究的初步结果。采访了至少参与照料两年的八位照料者。采用 Giorgi 方法对访谈进行分析,结果显示存在一个多维现实,可归纳为八个主题领域:疾病、患者、照料、照料者的生活与健康、应对、配偶/家庭、他人、情感。疾病对照料者的生活产生了巨大影响,甚至在患者去世之前就导致了其情感上的失去。照料工作非常艰巨且涉及情感投入。照料者主要抱怨国家医疗系统缺乏支持。持续参与照料还会引发健康问题、抑郁以及家庭内部的负面影响。他人被认为是不好的。最常见的感受是担心患者可能发生意外以及懊悔。一些照料者有良好的应对方式,他们信仰上帝,重视家庭的亲密关系并过好每一天。文中讨论了这八个主题领域的作用,以便为针对照料者的实践提供指导。

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