Please use this identifier to cite or link to this item: https://hdl.handle.net/1959.11/53533
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dc.contributor.authorCampbell, Julie Aen
dc.contributor.authorShaw, Sally Nen
dc.contributor.authorMainsbridge, Caseyen
dc.contributor.authorTaylor, Bruce Ven
dc.contributor.authorClaflin, Suzi Ben
dc.date.accessioned2022-10-27T04:11:50Z-
dc.date.available2022-10-27T04:11:50Z-
dc.date.issued2022-03-
dc.identifier.citationMultiple Sclerosis and Related Disorders, v.59, p. 1-6en
dc.identifier.issn2211-0356en
dc.identifier.issn2211-0348en
dc.identifier.urihttps://hdl.handle.net/1959.11/53533-
dc.description.abstract<p><i>Background:</i> Effective communication is essential for high-quality multiple sclerosis (MS)-related healthcare, but significant knowledge and practice gaps remain in this area. The aim of this study was to explore facilitators and barriers of communication about MS reported by members of the MS community.</p> <p> <i>Methods:</i> We conducted an exploratory mixed method study analysing self-reported facilitators and barriers to communication among MS community members participating in a free international online course about MS (called Understanding MS) who commented on an optional discussion board. We quantitatively compared commenters with course participants who did not comment and, among commenters, compared health information consumers (people with MS, caregivers) and suppliers (healthcare providers, service providers, researchers) using chi square and t-tests. We evaluated free text discussion board responses for emergent themes, comparing and contrasting consumer and supplier responses.</p> <p> <i>Results:</i> We found that the sociodemographic characteristics of commenters (<i>n</i> = 262) were similar to course participants overall including age, sex and MS community role. However, among commenters, consumers (<i>n</i> = 152) were about 9 years older than suppliers (<i>n</i> = 57) on average (mean age consumers 52.9 years; suppliers 44.0 years <i>p</i><0.001), and were less likely to have a university degree (<i>p</i> = 0.004) or live in Australia (the course host country representing almost 60% of the cohort; <i>p</i><0.001). Nonetheless, consumers and suppliers listed similar facilitators for communication about MS: honesty, kindness/empathy/compassion, openness, and effective listening. Consumers further prioritized clarity and patience. Consumers were also more likely to list barriers to communication, commonly listing the following barriers: encountering a lack of knowledge about MS, the invisible symptoms of MS, uncertainty about the appropriate amount of communication, and concern about being perceived as complaining and/or burdening others. Finally, consumers also discussed communication as a means to educate others about MS.</p> <p> <i>Conclusions:</i> Effective communication remains a challenge in the MS community, particularly between health information suppliers and health information consumers. The results of this exploratory study highlight areas that should be considered when developing communication strategies for MS community members. A larger confirmatory study of MS health information consumers and suppliers that uses focus groups and individual interviews could be conducted to further explore these emerging themes.</p>en
dc.languageenen
dc.publisherElsevier BVen
dc.relation.ispartofMultiple Sclerosis and Related Disordersen
dc.titleAn exploratory study regarding communication facilitators and barriers reported by a cohort of multiple sclerosis (MS) community members from the international massive open online course 'Understanding MS'en
dc.typeJournal Articleen
dc.identifier.doi10.1016/j.msard.2021.103473en
dc.identifier.pmid35092944en
local.contributor.firstnameJulie Aen
local.contributor.firstnameSally Nen
local.contributor.firstnameCaseyen
local.contributor.firstnameBruce Ven
local.contributor.firstnameSuzi Ben
local.profile.schoolSchool of Educationen
local.profile.emailcmainsbr@une.edu.auen
local.output.categoryC1en
local.record.placeauen
local.record.institutionUniversity of New Englanden
local.publisher.placeNetherlandsen
local.identifier.runningnumber103473en
local.format.startpage1en
local.format.endpage6en
local.peerreviewedYesen
local.identifier.volume59en
local.contributor.lastnameCampbellen
local.contributor.lastnameShawen
local.contributor.lastnameMainsbridgeen
local.contributor.lastnameTayloren
local.contributor.lastnameClaflinen
dc.identifier.staffune-id:cmainsbren
local.profile.roleauthoren
local.profile.roleauthoren
local.profile.roleauthoren
local.profile.roleauthoren
local.profile.roleauthoren
local.identifier.unepublicationidune:1959.11/53533en
local.date.onlineversion2021-12-23-
dc.identifier.academiclevelAcademicen
dc.identifier.academiclevelAcademicen
dc.identifier.academiclevelAcademicen
dc.identifier.academiclevelAcademicen
dc.identifier.academiclevelAcademicen
local.title.maintitleAn exploratory study regarding communication facilitators and barriers reported by a cohort of multiple sclerosis (MS) community members from the international massive open online course 'Understanding MS'en
local.relation.fundingsourcenoteThe authors would like to thank Multiple Sclerosis Ltd. (Australia), who have funded the Understanding MS online course until December 2022, and the study participants.en
local.output.categorydescriptionC1 Refereed Article in a Scholarly Journalen
local.search.authorCampbell, Julie Aen
local.search.authorShaw, Sally Nen
local.search.authorMainsbridge, Caseyen
local.search.authorTaylor, Bruce Ven
local.search.authorClaflin, Suzi Ben
local.uneassociationNoen
local.atsiresearchNoen
local.sensitive.culturalNoen
local.year.available2021en
local.year.published2022en
local.fileurl.closedpublishedhttps://rune.une.edu.au/web/retrieve/6d3d7c34-6bde-49a8-acaf-fc328633331den
local.subject.for2020520304 Health psychologyen
local.subject.for2020420302 Digital healthen
local.subject.for2020420318 People with disabilityen
local.subject.seo2020200401 Behaviour and healthen
local.subject.seo2020200509 Women's and maternal healthen
Appears in Collections:Journal Article
School of Education
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