Broughton Jessica, Harris Sarah, Beasant Lucy, Crawley Esther, Collin Simon M
Department of Psychology, University of Bath, 10 West, Bath, BA2 7AY, UK.
School of Social & Community Medicine, University of Bristol, Oakfield House, Oakfield Grove, Bristol, BS8 2BN, UK.
BMC Health Serv Res. 2017 Jun 2;17(1):384. doi: 10.1186/s12913-017-2337-6.
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.
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.
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.
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.
很少有研究探讨慢性疲劳综合征/肌痛性脑脊髓炎（CFS/ME）患者的治疗经历。本研究旨在通过了解在英国国民健康服务体系（NHS）的专科CFS/ME服务机构接受治疗的患者的观点来填补这一空白。
2014年6月至9月期间，对在三家NHS专科CFS/ME门诊服务机构之一完成治疗的16名成年人进行了半结构式访谈。采用持续比较技术对访谈进行主题分析，特别关注不同观点。
确定了三个主题：“专科服务之旅”；“有助于或阻碍治疗的因素”；以及“支持系统”。在这些主题中又确定了九个子主题。在形成参与者的经历方面，各种各样的因素很明显，包括个人特质如毅力和乐观，以及服务因素如灵活性和与临床医生积极、支持性的关系。参与者描述了专科服务如何发挥独特作用，这与该病症存在争议的性质有关。许多参与者在接受专科服务之前经历过缺乏认可、医疗和社会支持的情况。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面临的困难和障碍。
我们研究中CFS/ME患者的经历表明，NHS专科CFS/ME服务在患者改善生活质量的过程中发挥了至关重要的作用。这种改善是通过一个包括认可患者经历、接受改变、提供实用建议和支持以及治疗效果的过程实现的。
