Gotts Zoe M, Newton Julia L, Ellis Jason G, Deary Vincent
Faculty of Health and Life Sciences, Northumbria University, Newcastle-Upon-Tyne, UK.
Institute of Cellular Medicine, Medical School, Newcastle University & Newcastle Hospitals NHS Foundation Trust, UK.
Br J Health Psychol. 2016 Feb;21(1):71-92. doi: 10.1111/bjhp.12136. Epub 2015 Feb 26.
Sleep disturbances are common in chronic fatigue syndrome (CFS), and one of the key symptom complaints, yet it has been neglected by previous qualitative research. The aim was to explore the specific role of sleep in patients' experience of their illness.
A qualitative semi-structured interview format facilitated a detailed and open exploration of sleep, and the extent to which its management and problems were linked to the lived experience of CFS.
Eleven semi-structured interviews were conducted with individuals with CFS. Data were transcribed verbatim and analysed thematically, to explore and describe patients' experience of their sleep, and its impact on their condition.
Sleep emerged as a key aspect of the illness experience, and its management and effect on daytime functioning was a central pre-occupation for all 11 participants; all of them saw sleep as playing a critical role in their illness through either maintaining or exacerbating existing symptoms. Exploration of individual experiences presented three overarching themes: (1) sleep pattern variability over illness course and from day to day; (2) effect of sleep on daytime functioning; and (3) attempts at coping and sleep management.
Each patient with CFS has a unique experience of sleep. Despite the differing narratives regarding the role of sleep in CFS, all participants held the belief that sleep is a vital process for health and well-being which has had a direct bearing on the course and progression of their CFS. Also, every participant regarded their sleep as in some way 'broken' and in need of management/repair. Patients' insights demonstrate sleep-specific influences on their CFS, and the impact of disturbed sleep should be a consideration for clinical and research work.
What is already known on this subject? Sleep disturbances are common in CFS, and one of the key symptom complaints, yet it has been neglected by previous qualitative research. Ontology of CFS is a matter of dispute, with models ranging from the biological to the psychological competing to explain symptomatology in this illness. A qualitative study has the potential to add some clarity to the debate by making the patients' lived experience of the condition, and their own understanding of it, the focus of research. What this study adds? Coping and attempts at managing sleep problems in CFS adds to the 'illness burden' experienced by patients. Disturbed sleep is universally seen by patients with CFS as impacting on other daytime symptoms. Broken sleep may contribute to a biopsychosocial cycle that serves to maintain this illness.
睡眠障碍在慢性疲劳综合征（CFS）中很常见，是主要的症状诉求之一，但以往的定性研究却忽视了这一点。本研究旨在探讨睡眠在患者疾病体验中的具体作用。
采用定性半结构式访谈形式，以便对睡眠及其管理和问题与CFS实际体验的关联程度进行详细且开放的探究。
对11名慢性疲劳综合征患者进行了半结构式访谈。数据逐字转录并进行主题分析，以探究和描述患者的睡眠体验及其对病情的影响。
睡眠成为疾病体验的一个关键方面，其管理以及对日间功能的影响是所有11名参与者的核心关注点；他们都认为睡眠通过维持或加重现有症状在其疾病中起着关键作用。对个体经历的探究呈现出三个总体主题：（1）病程中及每日睡眠模式的变化；（2）睡眠对日间功能的影响；（3）应对和睡眠管理的尝试。
每位慢性疲劳综合征患者都有独特的睡眠体验。尽管关于睡眠在慢性疲劳综合征中的作用存在不同的说法，但所有参与者都认为睡眠是健康和幸福的重要过程，直接影响慢性疲劳综合征的病程和进展。此外，每位参与者都认为自己的睡眠在某种程度上“出了问题”，需要管理/修复。患者的见解表明睡眠对其慢性疲劳综合征有特定影响，睡眠障碍的影响应在临床和研究工作中予以考虑。
关于该主题已知的内容有哪些？睡眠障碍在慢性疲劳综合征中很常见，是主要的症状诉求之一，但以往的定性研究却忽视了这一点。慢性疲劳综合征的本体论存在争议，从生物学模型到心理学模型都在竞相解释该疾病的症状学。定性研究有可能通过将患者对病情的实际体验及其自身理解作为研究重点，为这场争论增添一些清晰度。本研究增加了什么？慢性疲劳综合征患者应对和管理睡眠问题的尝试增加了患者所经历的“疾病负担”。慢性疲劳综合征患者普遍认为睡眠障碍会影响其他日间症状。睡眠紊乱可能导致一个生物心理社会循环，维持这种疾病。
