作为一名成年肌肉萎缩症患者的近亲。

Being the next of kin of an adult person with muscular dystrophy.

作者信息

Boström Katrin, Ahlström Gerd, Sunvisson Helena

机构信息

Swedish Institute for Disability Research, Orebro University, Center for Rehabilitation Research, Orebro County Council.

出版信息

Clin Nurs Res. 2006 May;15(2):86-104; discussion 105-6. doi: 10.1177/1054773805285706.

DOI:10.1177/1054773805285706

PMID:16638828

Abstract

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

摘要

一种慢性疾病会以各种方式影响家庭中的所有成员。本研究的目的是阐明当成年家庭成员患有肌肉萎缩症时其亲属（N = 36）的经历。亲属关系包括伴侣（36%，n = 14）、父母（18%，n = 7）、子女（21%，n = 8）、兄弟姐妹（15%，n = 6）以及其他亲属（3%，n = 1）。采用了潜在内容分析，其中涉及对访谈文本的解读。研究结果通过浮现出的主题展示了与患有肌肉萎缩症的人亲近的意义：家庭的暴露；义务与爱之间的跨度；保持警惕、给予保护和支持；以及努力追求平凡生活。本研究表明，医护人员需要理解当家庭成员患有进行性疾病时亲属所讲述的变化的意义。