BACKGROUND:Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England. METHODS:Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views. RESULTS:Three themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society. CONCLUSIONS:The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.

译文

背景:很少有研究探讨患者对CFS / ME的治疗经验。这项研究旨在通过捕获英国NHS专家CFS / ME服务所治疗患者的观点来填补这一空白。
方法:在2014年6月至9月期间,对三名门诊NHS专家CFS / ME服务之一中完成治疗的16名成年人进行了半结构式访谈。访谈采用恒定比较技术进行主题分析,尤其要注意对比观点。
结果:确定了三个主题:“专业服务之旅”; “有助于或阻碍治疗的事情”;和“支持系统”。在这些主题中,确定了9个子主题。形成参与者体验的因素很明显,包括毅力和乐观情绪等个人特征,以及灵活性和与临床医生之间的积极支持关系等服务因素。参与者描述了专家服务如何发挥独特作用,这与疾病的争议性质有关。许多参与者在参加专科服务之前经历了缺乏验证以及医疗和社会支持的经历。患者转诊前的生活经历以及他们对出院的担忧,凸显了CFS / ME患者在我们社会中继续经历的艰辛和障碍。
结论:本研究中CFS / ME患者的经验表明,NHS专家CFS / ME服务在患者改善生活质量的旅程中起着至关重要的作用。这种改善是通过一个过程来实现的,该过程包括验证患者的经历,接受变更,实用的建议和支持以及治疗效果。

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