ArticleBMC health services research2014
"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.
Article in BMC health services research, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed, 29 citations in OpenAlex.
- "I didn't have to prove to anybody that I was a good candidate": a case study framing international bariatric tourism by Canadians as circumvention tourism.BMC health services research · 2018Article
- Reflections on translation: Views of participants in a multisite Canadian CCSVI clinical trial.Neurology. Clinical practice · 2018Review
- Resilience, trust, and civic engagement in the post-CCSVI era.BMC health services research · 2018Article
- Caught in a no-win situation: discussions about CCSVI between persons with multiple sclerosis and their neurologists - a qualitative study.BMC neurology · 2017Article
- How Medical Tourism Enables Preferential Access to Care: Four Patterns from the Canadian Context.Health care analysis : HCA : journal of health philosophy and policy · 2017Article
- "Ensure that you are well aware of the risks you are taking…": actions and activities medical tourists' informal caregivers can undertake to protect their health and safety.BMC public health · 2017Article
- Public Funding and Open Access to Research: A Review of Canadian Multiple Sclerosis Research.Journal of medical Internet research · 2017Review
- Predictors of chronic cerebrospinal venous insufficiency procedure use among older people with multiple sclerosis: a national case-control study.BMC health services research · 2015Article
- Social Media Representation of Chronic Cerebrospinal Venous Insufficiency Intervention for Multiple Sclerosis.International journal of MS careArticle
- Perspectives About Time Frames in Stem Cell Research for Multiple Sclerosis: "Time Is Brain".International journal of MS careArticle
- An Integrative Review of Patients' Experience in the Medical Tourism.Inquiry : a journal of medical care organization, provision and financingReview
- "I Will Respect the Autonomy of My Patient": A Scoping Review of Shared Decision Making in Multiple Sclerosis.International journal of MS careArticle
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.