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与患有严重慢性病的人一起生活的近亲的经历。

The experiences of close relatives living with a person with serious chronic illness.

作者信息

Ohman Marja, Söderberg Siv

机构信息

Luleå University of Technology, Sweden.

出版信息

Qual Health Res. 2004 Mar;14(3):396-410. doi: 10.1177/1049732303261692.

Abstract

Living with serious chronic illness has a directly threatening effect on the life course of healthy relatives. The aim of this study was to elucidate the meaning of close relatives' experiences of living with a person with serious, chronic illness. Using a narrative approach, the authors interviewed 13 spouses and 1 daughter about the meaning of their experiences. They used a phenomenological hermeneutic method to interpret the interview text. The structural analysis revealed three major themes: A Shrinking Life, Forced to Take Responsibility, and Struggling to Keep Going. Close relatives in this study seemed to be living lives characterized by a reduced sense of individual freedom and an increased sense of responsibility for the care of the ill person. It means struggling to obtain the strength to manage their duty and an inner sense of community and of solidarity. The authors interpret the findings in the light of the works of philosophers who have described ethical demands and natural love between people.

摘要

与严重慢性病患者共同生活对健康亲属的人生轨迹有着直接的威胁。本研究旨在阐明近亲与患有严重慢性病的人共同生活的经历的意义。作者采用叙事方法,就13位配偶和1位女儿的经历意义进行了访谈。他们运用现象学诠释学方法来解读访谈文本。结构分析揭示了三个主要主题:生活萎缩、被迫承担责任以及努力坚持下去。本研究中的近亲似乎过着个人自由感降低、照顾病人的责任感增强的生活。这意味着要努力获得履行职责的力量以及内心的社区感和团结感。作者根据描述人与人之间道德要求和自然之爱的哲学家的著作来解读这些发现。

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