Cheshire Anna, Ridge Damien, Clark Lucy V, White Peter D
University of Westminster, London, United Kingdom.
Queen Mary University of London, London, United Kingdom.
Qual Health Res. 2021 Jan;31(2):298-308. doi: 10.1177/1049732320969395. Epub 2020 Nov 11.
Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement ( = 9) and deterioration ( = 10) after a guided self-help intervention, and analyzed via "constant comparison." The meaning of recovery differed between participants-expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the "sick role," with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of "normality."
对于慢性疲劳综合征/肌痛性脑脊髓炎患者而言，康复意味着什么鲜为人知，这是一种了解甚少、使人衰弱的慢性健康状况。为探讨这一问题，我们对那些在接受引导式自助干预后报告病情改善（n = 9）和恶化（n = 10）的患者进行了半结构式访谈，并通过“持续比较”进行分析。参与者对康复的理解各不相同——对改善的期望以及患病角色（和相关耻辱感）的呈现是关键影响因素。虽然有些人将康复视为完全摆脱症状，但许多人将其定义为摆脱“患病角色”，功能优先。其他人重新定义了康复，不愿回归可能导致其患病的生活方式，或者认为这个概念并无帮助而予以摒弃。康复并不总是意味着消除所有症状。相反，它是一个联系点，一方面是完全康复的机会有限这一现实，另一方面是强烈渴望摆脱疾病并重新获得“正常”感。
