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肌萎缩侧索硬化症患者及其家属使用补充和替代医学的经验:一项定性研究。

Experience of complementary and alternative medicine in patients with amyotrophic lateral sclerosis and their families: A qualitative study.

作者信息

Kim Sungha, Chung Seung Eun, Lee Sanghun, Park Jeonghwan, Choi Sunmi, Kim Sungchul

机构信息

a Korean Medicine Life Science, University of Science and Technology , Daejeon .

b Korea Medicine Fundamental Research Division , Korea Institute of Oriental Medicine , Daejeon .

出版信息

Amyotroph Lateral Scler Frontotemporal Degener. 2016;17(3-4):191-7. doi: 10.3109/21678421.2015.1125504. Epub 2016 Jan 6.

Abstract

The purpose of this study was to explore the life experience related to complementary and alternative medicine (CAM) use among patients with amyotrophic lateral sclerosis (ALS). Data were collected though semi-structured interviews of nine patients with ALS and seven family members, who have used CAM. Audio recordings of the interviews were transcribed verbatim and checked for accuracy. The Giorgi's method of phenomenology was used for data analysis. Five constituents forming the units of meaning were: facing the limits of conventional medicine; getting to know CAM; recognizing the ineffectiveness of CAM; using CAM for symptomatic treatment; and seeking new CAM endlessly for complete cure. The study results provide an in-depth understanding of experience with CAM among patients with ALS and their family members. Healthcare providers must give accurate information about the efficacy of CAM as well as its safety and possible adverse effects and should offer patient-centred treatment through active communication throughout the process of diagnosis and treatment.

摘要

本研究的目的是探讨肌萎缩侧索硬化症(ALS)患者使用补充和替代医学(CAM)的生活经历。通过对9名使用过CAM的ALS患者和7名家庭成员进行半结构化访谈收集数据。访谈录音逐字转录并检查准确性。采用 Giorgi 的现象学方法进行数据分析。构成意义单元的五个要素是:面对传统医学的局限性;了解CAM;认识到CAM的无效性;使用CAM进行对症治疗;以及无休止地寻找新的CAM以实现完全治愈。研究结果深入了解了ALS患者及其家庭成员使用CAM的经历。医疗保健提供者必须提供有关CAM疗效、安全性和可能的不良反应的准确信息,并应在整个诊断和治疗过程中通过积极沟通提供以患者为中心的治疗。

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