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炎症性肠病患者的疲劳体验:一项探索性研究。

The experience of fatigue in people with inflammatory bowel disease: an exploratory study.

机构信息

Florence Nightingale School of Nursing & Midwifery, King's College London, UK.

出版信息

J Adv Nurs. 2013 Sep;69(9):1987-99. doi: 10.1111/jan.12060. Epub 2012 Dec 6.

Abstract

AIMS

To explore fatigue, the impact it has on daily life and the strategies used to ameliorate the symptom, as described by people with inflammatory bowel disease.

BACKGROUND

Fatigue is the most troublesome symptom during remission of inflammatory bowel disease. Fatigue affects people's daily functioning, impacting on quality of life. There is limited understanding of the nature of and the ways fatigue in inflammatory bowel disease is experienced and managed in everyday adult life.

DESIGN

An epistemological interpretive approach to understand participants' self-reported experiences of disease-related fatigue.

METHODS

A convenience sample of 46 participants was recruited from the Crohn's and Colitis UK member database. Five focus group interviews (November 2008-February 2009) were conducted, audio-recorded, transcribed, and analysed using an inductive thematic framework.

FINDINGS

Five themes were identified: the experience of fatigue, causes of fatigue, managing fatigue, consequences of fatigue, and seeking support. Fatigue had a debilitating effect on the social and emotional well-being of participants and limited their employment opportunities. People used a range of strategies to cope and reported that fatigue-related issues seemed to be poorly understood by clinicians and were not addressed in medical consultations.

CONCLUSION

Fatigue was an inextricable part of daily life for some people with inflammatory bowel disease. Specialist nurses and medical colleagues need to address the personal, social, and economic consequences of fatigue, whilst further nursing research would improve understanding of the impact of fatigue and help develop appropriate intervention strategies for people with inflammatory bowel disease.

摘要

目的

探讨炎症性肠病患者所描述的疲劳、疲劳对日常生活的影响以及缓解疲劳症状的策略。

背景

在炎症性肠病缓解期,疲劳是最麻烦的症状。疲劳会影响人们的日常功能,降低生活质量。人们对炎症性肠病患者的疲劳性质和管理方式的理解有限,对其在日常生活中的体验和管理方式知之甚少。

设计

采用一种认识论解释方法来理解参与者对疾病相关疲劳的自我报告体验。

方法

从英国克罗恩病和结肠炎协会会员数据库中招募了 46 名方便样本参与者。2008 年 11 月至 2009 年 2 月期间进行了五次焦点小组访谈,对访谈进行录音、转录,并采用归纳主题框架进行分析。

结果

确定了五个主题:疲劳体验、疲劳原因、疲劳管理、疲劳后果和寻求支持。疲劳对参与者的社会和情感幸福感产生了衰弱影响,并限制了他们的就业机会。人们采用了多种策略来应对,并报告说临床医生似乎对疲劳相关问题理解不足,在医疗咨询中也没有解决这些问题。

结论

对于一些炎症性肠病患者来说,疲劳是日常生活中不可避免的一部分。专科护士和医疗同事需要解决疲劳对个人、社会和经济的影响,同时进一步的护理研究将有助于提高对疲劳影响的理解,并帮助为炎症性肠病患者开发适当的干预策略。

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