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多发性硬化症患者的解放程序决策经验

The Liberation Procedure Decision-Making Experience for People With Multiple Sclerosis.

作者信息

Murray Cynthia L, Ploughman Michelle, Harris Chelsea, Hogan Stephen, Murdoch Michelle, Stefanelli Mark

机构信息

Memorial University, St. John's, Newfoundland and Labrador, Canada.

Coalition of Persons With Disabilities, St. John's, Newfoundland and Labrador, Canada.

出版信息

Glob Qual Nurs Res. 2014 Oct 8;1:2333393614551413. doi: 10.1177/2333393614551413. eCollection 2014 Jan-Dec.

Abstract

Despite the absence of scientific evidence demonstrating the efficacy of the "liberation procedure" in treating multiple sclerosis (MS), thousands of MS patients worldwide have undergone the procedure. The study objective was to explore the experience of liberation procedure decision making for individuals with MS. Fifteen adults in Newfoundland and Labrador, Canada, each participated in an in-depth interview. The data analysis revealed three groups of people: "waiters," "early embracers," and "late embracers." Using van Manen's hermeneutic phenomenological approach, we identified three themes each in the stories of the early and late embracers and four themes in the waiters' stories. A characteristic of the late embracers and waiters was skepticism, whereas desperation set the embracers apart from the waiters. With a deeper understanding of the experience, nurses can be more attuned to the perspectives of MS patients while helping them make informed decisions about undergoing the liberation procedure.

摘要

尽管缺乏科学证据证明“解放疗法”在治疗多发性硬化症(MS)方面的疗效,但全球仍有成千上万的MS患者接受了该疗法。本研究的目的是探索MS患者在决定是否接受解放疗法时的经历。加拿大纽芬兰与拉布拉多省的15名成年人参与了深度访谈。数据分析揭示了三类人群:“观望者”、“早期接受者”和“晚期接受者”。采用范曼的诠释现象学方法,我们在早期和晚期接受者的故事中分别识别出三个主题,在观望者的故事中识别出四个主题。晚期接受者和观望者的一个特点是持怀疑态度,而绝望则使接受者与观望者区分开来。通过更深入地了解这种经历,护士在帮助MS患者就是否接受解放疗法做出明智决定时,能够更好地理解他们的观点。

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