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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

BACKGROUND: Chronic 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...

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Autores principales: Snyder, Jeremy, Adams, Krystyna, Crooks, Valorie A, Whitehurst, David, Vallee, Jennifer
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263058/
https://www.ncbi.nlm.nih.gov/pubmed/25265935
http://dx.doi.org/10.1186/1472-6963-14-445
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author Snyder, Jeremy
Adams, Krystyna
Crooks, Valorie A
Whitehurst, David
Vallee, Jennifer
author_facet Snyder, Jeremy
Adams, Krystyna
Crooks, Valorie A
Whitehurst, David
Vallee, Jennifer
author_sort Snyder, Jeremy
collection PubMed
description BACKGROUND: Chronic 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. METHODS: This 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. RESULTS: The 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. CONCLUSIONS: By 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.
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spelling pubmed-42630582014-12-12 “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 Snyder, Jeremy Adams, Krystyna Crooks, Valorie A Whitehurst, David Vallee, Jennifer BMC Health Serv Res Research Article BACKGROUND: Chronic 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. METHODS: This 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. RESULTS: The 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. CONCLUSIONS: By 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. BioMed Central 2014-09-30 /pmc/articles/PMC4263058/ /pubmed/25265935 http://dx.doi.org/10.1186/1472-6963-14-445 Text en © Snyder et al.; licensee BioMed Central Ltd. 2014 This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Snyder, Jeremy
Adams, Krystyna
Crooks, Valorie A
Whitehurst, David
Vallee, Jennifer
“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
title “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
title_full “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
title_fullStr “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
title_full_unstemmed “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
title_short “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
title_sort “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
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263058/
https://www.ncbi.nlm.nih.gov/pubmed/25265935
http://dx.doi.org/10.1186/1472-6963-14-445
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