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首页> 外文OA文献 >“I Knew What Was Going To Happen If I Did Nothing and So I Was Going To Do Something”: Faith, Hope, and Trust In The Decisions Of Canadians With Multiple Sclerosis To Seek Unproven Interventions Abroad
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“I Knew What Was Going To Happen If I Did Nothing and So I Was Going To Do Something”: Faith, Hope, and Trust In The Decisions Of Canadians With Multiple Sclerosis To Seek Unproven Interventions Abroad

机译：“我知道如果我什么也不做，那么我会做些什么。”：信念，希望和信任，对患有多发性硬化症的加拿大人寻求未经证实的干预措施的加拿大人的决定

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BackgroundChronic cerebrospinal venous insufficiency (CCSVI) treatment is an unproven intervention aimed at relieving some of the symptoms of multiple sclerosis (MS). Despite limited evidence of the efficacy and safety of this intervention, Canadians diagnosed with MS have been traveling abroad to access this procedure as it is not available domestically outside of limited clinical trials. This paper discusses the experiences of Canadians with MS seeking CCSVI treatment abroad.MethodsThis paper presents a secondary analysis of 15 interviews with participants who had gone abroad for CCSVI treatment. Interviews were conducted over the phone between October 2012 and December 2012. All interviews were digitally recorded and transcribed verbatim. Transcripts were hand coded for: 1) why CCSVI treatment was sought and where it was obtained; 2) the role of having hope for a cure in seeking CCSVI; 3) the impact of MS on everyday life; and 4) the role other people played in the decision to go abroad.ResultsThe authors identified loss of faith, hope, and trust as themes emerging from the transcripts. The participants experienced a loss of faith with the Canadian health system and especially the neurologists who were responsible for their care and the classification of MS as a neurological disease. Access to CCSVI treatment abroad generated hope in these participants, but they were cautious in their expectations, focusing on symptom management rather than a cure. Trust in their caregivers abroad was generated through the recommendations of other MS sufferers and the credentials of their caregivers abroad.ConclusionsBy deciding to seek an unproven intervention abroad, these individuals took on responsibility for their care from the Canadian health system. While evidence of the efficacy of CCSVI treatment is limited, the participants felt that they were making a rational care decision, focusing on the empowerment and renewed hope generated by seeking this intervention. Health professionals and policy makers globally should consider the causes of loss of faith in their domestic care systems and balance the benefits of empowerment and renewed hope against concerns that unproven interventions may create new health risks.
机译：背景慢性脑脊髓静脉功能不全（CCSVI）治疗是一种未经证实的干预措施，旨在缓解多发性硬化症（MS）的某些症状。尽管该干预措施的有效性和安全性的证据有限，但诊断为MS的加拿大人仍在国外旅行以使用此程序，因为在有限的临床试验之外国内尚无此程序。本文讨论了加拿大人在国外寻求CCSVI治疗的经验。方法本文对15名接受国外CCSVI治疗参与者的访谈进行了二次分析。在2012年10月至2012年12月之间通过电话进行了采访。所有采访均进行了数字记录并逐字记录。笔录的手写内容如下：1）为什么要寻求CCSVI治疗以及在何处获得治疗； 2）希望治愈CCSVI的作用； 3）MS对日常生活的影响； （4）其他人在出国决定中扮演的角色。结果作者认为，失去信心，希望和信任是成绩单中出现的主题。参与者对加拿大卫生系统失去了信心，尤其是负责他们的护理以及将MS归类为神经系统疾病的神经科医生。在国外获得CCSVI治疗为这些参与者带来了希望，但是他们对期望持谨慎态度，侧重于症状管理而非治疗。通过其他MS患者的建议以及他们在国外的照护者的信任，他们对他们在国外的照护者产生了信任。结论通过决定在国外寻求未经证实的干预措施，这些人承担了加拿大卫生系统的照料责任。尽管CCSVI治疗效果的证据有限，但参与者感到他们正在做出合理的护理决定，重点在于增强能力和寻求这种干预所产生的新希望。全球卫生专业人员和政策制定者应考虑其家庭护理系统丧失信心的原因，并在增强权能和重新产生希望之间的平衡与未经证实的干预措施可能造成新的健康风险的担忧之间取得平衡。

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