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本文引用的文献

1
Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence.肌痛性脑脊髓炎和慢性疲劳综合征患者获得医疗护理的情况:呼吁建立卓越中心。
Mod Clin Med Res. 2017 Apr;1(1):28-35. doi: 10.22606/mcmr.2017.11005. Epub 2017 Apr 13.
2
Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome.肌痛性脑脊髓炎和慢性疲劳综合征的居家患者与非居家患者
Chronic Illn. 2016 Dec;12(4):292-307. doi: 10.1177/1742395316644770. Epub 2016 Apr 28.
3
Energy Conservation/Envelope Theory Interventions to Help Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.节能/包膜理论干预措施对肌痛性脑脊髓炎/慢性疲劳综合征患者的帮助
Fatigue. 2013 Jan 14;1(1-2):27-42. doi: 10.1080/21641846.2012.733602. Epub 2012 Aug 8.
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Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document.起搏作为改善肌痛性脑脊髓炎/慢性疲劳综合征能量管理的策略:共识文件。
Disabil Rehabil. 2012;34(13):1140-7. doi: 10.3109/09638288.2011.635746. Epub 2011 Dec 19.
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Narrative Identities and the Management of Personal Accountability in Talk about ME: A Discursive Psychology Approach to Illness Narrative.叙述认同与个人责任的管理:从话语心理学角度探讨疾病叙事
J Health Psychol. 2001 Mar;6(2):247-59. doi: 10.1177/135910530100600210.
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Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.适应性起搏疗法、认知行为疗法、分级运动疗法和慢性疲劳综合征专科医疗的比较(PACE):一项随机试验。
Lancet. 2011 Mar 5;377(9768):823-36. doi: 10.1016/S0140-6736(11)60096-2. Epub 2011 Feb 18.
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Frequency and content analysis of chronic fatigue syndrome in medical text books.医学教科书中慢性疲劳综合征的频率与内容分析
Aust J Prim Health. 2010;16(2):174-8. doi: 10.1071/py09023.
8
U.S. healthcare providers' knowledge, attitudes, beliefs, and perceptions concerning Chronic Fatigue Syndrome.美国医疗保健提供者对慢性疲劳综合征的知识、态度、信念和看法。
BMC Fam Pract. 2010 Apr 21;11:28. doi: 10.1186/1471-2296-11-28.
9
Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.研究电子数据采集(REDCap)——一种用于提供转化研究信息学支持的元数据驱动方法和工作流程。
J Biomed Inform. 2009 Apr;42(2):377-81. doi: 10.1016/j.jbi.2008.08.010. Epub 2008 Sep 30.
10
Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome.运用多种知识来源以达成对慢性疲劳综合征的临床理解。
Ann Fam Med. 2008 Jul-Aug;6(4):340-8. doi: 10.1370/afm.867.

忽视慢性病:对负面医疗经历的定性分析

Dismissing chronic illness: A qualitative analysis of negative health care experiences.

作者信息

McManimen Stephanie, McClellan Damani, Stoothoff Jamie, Gleason Kristen, Jason Leonard A

机构信息

a Center for Community Research , DePaul University , Chicago , Illinois , USA.

出版信息

Health Care Women Int. 2019 Mar;40(3):241-258. doi: 10.1080/07399332.2018.1521811. Epub 2019 Mar 4.

DOI:10.1080/07399332.2018.1521811
PMID:30829147
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6567989/
Abstract

In the US, medical training is inadequate regarding the symptomatology, prognosis, and treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). As a result, many physicians lack the appropriate level of knowledge about effective methods for ME and CFS symptom reduction and often suggest inappropriate treatments, such as increased exercise or psychiatric services. The authors' purpose in this study was to analyze negative patient experiences with health care professionals. Patients with ME and CFS who reported experiencing a dismissive physician attitude were asked to detail the encounter via open-ended response on an international, online survey. Participant responses were thematically coded and analyzed using processes outlined by Patton. Emergent themes related to perceived physician attitudes and how they impact patient wellbeing are described and their implications discussed. Additionally, we highlight suggestions for how the health care system can effectively approach this often marginalized patient group.

摘要

在美国,医学培训在肌痛性脑脊髓炎(ME)和慢性疲劳综合征(CFS)的症状学、预后及治疗方面存在不足。因此,许多医生对减轻ME和CFS症状的有效方法缺乏适当的了解,并且常常建议不恰当的治疗方法,如增加运动量或提供精神科服务。作者开展本研究的目的是分析患者与医护人员接触时的负面经历。患有ME和CFS且报告曾遭遇医生轻视态度的患者被要求通过国际在线调查中的开放式回答详细描述此次接触。参与者的回答按照帕顿概述的流程进行主题编码和分析。文中描述了与感知到的医生态度及其对患者幸福感的影响相关的新出现主题,并讨论了其影响。此外,我们还强调了关于医疗保健系统如何有效应对这个常被边缘化的患者群体的建议。