Department of Neurobiology, Care Sciences and Society (NVS), Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
Rheumatology (Oxford). 2010 Oct;49(10):1935-42. doi: 10.1093/rheumatology/keq174. Epub 2010 Jun 23.
The aim of this study was to describe women's experience of SLE-related fatigue, how they express the feeling of fatigue, impact on life and strategies developed to manage fatigue in daily living.
Seven, semi-structured focus group discussions with 33 women were audio-taped, transcribed verbatim and analysed according to qualitative content analysis.
Perceptions of SLE-related fatigue were sorted into four themes. Nature of Fatigue, involved the sensation, occurrence and character. Aspects Affected by Fatigue described emotions that arose together with fatigue as well as aspects of work, family life, social contacts and leisure activities that were affected by fatigue. Striving Towards Power and Control concluded the array of ways used to manage daily life and were categorized into the mental struggle, structure, restrict and provide. Factors Influencing the Perception of Fatigue described understanding from their surroundings and pain as strongly influencing the experience and perception of fatigue.
SLE-related fatigue was portrayed as an overwhelming phenomenon with an unpredictable character, resulting in the feeling that fatigue dominates and controls most situations in life. The choice of strategies was described as a balance with implications for how fatigue limited a person's life. Health care professionals are advised to take a more active role to empower people with SLE to find their own balance as a way to achieve a feeling of being in control.
本研究旨在描述女性对系统性红斑狼疮相关疲劳的体验,她们如何表达疲劳感,对生活的影响以及在日常生活中为管理疲劳而制定的策略。
对 33 名女性进行了 7 次半结构化焦点小组讨论,将讨论内容录音、逐字转录,并进行了定性内容分析。
对系统性红斑狼疮相关疲劳的感知分为四个主题。疲劳的本质,涉及疲劳的感觉、发生和特征。疲劳影响的方面描述了与疲劳同时出现的情绪,以及受疲劳影响的工作、家庭生活、社会联系和休闲活动等方面。争取权力和控制总结了用于管理日常生活的各种方法,并分为心理斗争、结构、限制和提供。影响疲劳感知的因素描述了来自周围环境和疼痛的理解如何强烈影响疲劳的体验和感知。
系统性红斑狼疮相关疲劳被描述为一种压倒性的现象,具有不可预测的特征,导致疲劳感主导和控制生活中的大多数情况。所选择的策略被描述为一种平衡,这对疲劳如何限制一个人的生活有影响。建议医疗保健专业人员发挥更积极的作用,赋予系统性红斑狼疮患者权力,帮助他们找到自己的平衡,从而获得控制感。