Nursing Education Institute, Châteaubriant-Nozay-Pouancé Hospital Group, Châteaubriant, France.
Education and Training Research Center (EA1589), University of Paris Nanterre, Nanterre, France.
Health Soc Care Community. 2022 Jan;30(1):1-10. doi: 10.1111/hsc.13376. Epub 2021 Apr 6.
The COVID-19 pandemic has focused health systems on supporting patients affected by this virus. Meanwhile in the community, many other contained patients could only use self-care strategies, especially in countries that have set up a long and strict containment such as France. The study aimed to compare coping strategies deployed by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS; a poorly recognised syndrome) to those with better known and referenced chronic conditions. An online flash survey was conducted during the containment period in partnership with French Patients Organizations including ME/CFS national association. Therefore, 'Brief COPE' version of Lazarus and Folkman's Ways of Coping Check List has been adapted to the specificity of the containment. The survey was e-distributed in France from 15 April to 11 May 2020. Differences of coping strategies were analyzed using Wilcoxon-Mann-Withney test. Amongst 637 responses, 192 were complete, presenting a wide variety of diseases, including 93 ME/CFS. The latter have significantly different coping strategies than recognised diagnosed diseases patients: similar uses of emotion focused coping but less uses of seek social support and problem-focused copings. In conclusion, coping strategies are different for those who deal with the daily experience of ME/CFS, highly disabling chronic condition with diagnostic ambiguity, low degree of medical and social recognition and without treatment. Better understanding of those strategies is needed to provide the means for health promotion researchers, managers and clinicians, to accompany those patients.
新冠疫情期间,各国卫生系统专注于为受新冠病毒影响的患者提供支持。与此同时,在社区中,许多其他被隔离的患者只能采用自我护理策略,尤其是在像法国这样长期严格执行隔离措施的国家。本研究旨在比较肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS;一种认识不足的综合征)患者与其他更为人知和参考的慢性疾病患者所采用的应对策略。本研究通过与法国患者组织合作,在隔离期间进行了一项在线快速调查,其中包括 ME/CFS 国家协会。因此,对 Lazarus 和 Folkman 的应对方式检查表的“Brief COPE”版本进行了改编,以适应隔离的特殊性。该调查于 2020 年 4 月 15 日至 5 月 11 日在法国进行了电子分发。采用 Wilcoxon-Mann-Withney 检验分析应对策略的差异。在 637 份回复中,有 192 份回复完整,涉及多种疾病,包括 93 例 ME/CFS。后者与已确诊疾病患者的应对策略有显著差异:情绪聚焦应对方式相似,但寻求社会支持和问题聚焦应对方式较少。总之,对于那些每天都在经历 ME/CFS 这种高度致残的慢性疾病、诊断存在模糊性、医疗和社会认可度低且没有治疗方法的患者来说,他们的应对策略有所不同。需要更好地了解这些策略,以便为健康促进研究人员、管理人员和临床医生提供帮助,为这些患者提供支持。