Show simple item record

dc.contributor.authorHynes, Sinéad M.
dc.contributor.authorGhahari, Setareh
dc.contributor.authorForwell, Susan J.
dc.date.accessioned2019-03-29T09:30:36Z
dc.date.issued2019-03-26
dc.identifier.citationHynes, Sinéad M., Ghahari, Setareh, & Forwell, Susan J. (2019). “Waiting for Science to Catch up with Practice”: an examination of 10-year YouTube trends in discussions of chronic cerebral spinal venous insufficiency treatment for multiple sclerosis. Informatics for Health and Social Care, doi: 10.1080/17538157.2019.1582052en_IE
dc.identifier.issn1753-8165
dc.identifier.urihttp://hdl.handle.net/10379/15072
dc.description.abstractObjective: The objective of this longitudinal study examined, first, whether people with multiple sclerosis who previously advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI) through YouTube continued reporting benefits. Second, it examined a new cohort reporting on CCSVI treatment, and third, whether perspectives have changed. Method: YouTube videos from August 2011 to January 2019 related to CCSVI were retrieved. Once retrieved, all videos were compiled, classified and analyzed. Categorical data were reported and a pre-determined code-book was used to code videos. Data from the videos were extracted and analyzed using discourse analysis. Results: 1293 videos related to CCSVI were uploaded by 54 people with multiple sclerosis who met the inclusion criteria. YouTube videos uploaded by people with multiple sclerosis have shifted in volume and message. The initial surge in interest in CCSVI treatment has diminished, but there still exists strong advocates for its use. There appears to be an inconsistency between positive results, actual improvements in symptoms, and the overall messages reported. Very little long-term data was available as the procedure is relatively new. Conclusion: Practitioners may be faced with pressure to provide unproven treatments in the future and should be understanding but evidence-driven when supporting multiple sclerosis therapies.en_IE
dc.description.sponsorshipThis research is funded in part by a National MS Society Post-doctoral Fellowship Award No. MB 0016.en_IE
dc.formatapplication/pdfen_IE
dc.language.isoenen_IE
dc.publisherTaylor & Francisen_IE
dc.relation.ispartofInformatics For Health & Social Careen
dc.subjectcerebral spinal venousen_IE
dc.subjectsclerosisen_IE
dc.subjectsocial mediaen_IE
dc.subjectchronicen_IE
dc.subjectinsufficiencyen_IE
dc.subjectCCSVIen_IE
dc.subjecthealthen_IE
dc.subjectdecision-makingen_IE
dc.subjectmultipleen_IE
dc.title“Waiting for Science to Catch up with Practice”: an examination of 10-year YouTube trends in discussions of chronic cerebral spinal venous insufficiency treatment for multiple sclerosisen_IE
dc.typeArticleen_IE
dc.date.updated2019-03-27T11:52:22Z
dc.identifier.doi10.1080/17538157.2019.1582052
dc.local.publishedsourcehttps://doi.org/10.1080/17538157.2019.1582052en_IE
dc.description.peer-reviewedpeer-reviewed
dc.contributor.funderNational Multiple Sclerosis Societyen_IE
dc.description.embargo2020-03-26
dc.internal.rssid16091950
dc.local.contactSinéad Hynes, Nui Galway. - Email: sinead.hynes@nuigalway.ie
dc.local.copyrightcheckedYes
dc.local.versionACCEPTED
nui.item.downloads0


Files in this item

Attribution-NonCommercial-NoDerivs 3.0 Ireland
This item is available under the Attribution-NonCommercial-NoDerivs 3.0 Ireland. No item may be reproduced for commercial purposes. Please refer to the publisher's URL where this is made available, or to notes contained in the item itself. Other terms may apply.

The following license files are associated with this item:

Thumbnail

This item appears in the following Collection(s)

Show simple item record