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Perspectives from the patient: A content analysis of communication changes, impact, and strategies to facilitate communication in multiple sclerosis

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dc.contributor.authorEl-Wahsh, S.
dc.contributor.authorLayfield, C.
dc.contributor.authorBogaardt, H.
dc.contributor.authorKumfor, F.
dc.contributor.authorBallard, K.J.
dc.date.issued2022
dc.description.abstractPurpose: Communication changes in multiple sclerosis (MS) are under-explored and under-recognised. Persons with MS (PwMS) are experts in their condition and play a valuable role in informing clinicians and researchers of their condition. This study aimed to investigate the perspectives of PwMS on: (1) MS-related communication changes, (2) the impact of these communication changes across key aspects of a person’s life, including work/studies, relationships, and general quality of life, and (3) strategies used to facilitate communication in daily interactions. Method: Two-hundred and sixty PwMS were recruited internationally and completed an online questionnaire. Content analysis was used to analyse open-ended questionnaire responses. Result: One-hundred and ninety-seven (75.8%) participants reported communication changes, including language, cognitive, speech, voice, and fluency changes. Participants described a variety of personal and environmental factors that influence communication negatively, such as fatigue, stress, and heat. Communication changes were reported to impact on psychological wellbeing, interpersonal relationships, participation and identity in the workforce and career pathways, and tertiary studies. Around 40% of participants reported using a range of overt and covert strategies to manage communication changes. Only 11.2% (n=22/197) of participants who reported communication changes accessed speech-language pathology (SLP) services. Conclusion: PwMS can experience a wide spectrum of communication changes. These communication changes can have a profound and far-reaching impact on psychological wellbeing and societal participation. Engagement with SLP services is limited compared to the reported prevalence of communication changes. There is a need to raise awareness of the role of SLP in service provision for PwMS to manage communication changes. This paper discusses and provides suggestions for SLP services for PwMS with communication changes. There is a timely need to develop evidence-based interventions to support PwMS manage communication changes and reduce their impact.
dc.description.statementofresponsibilitySarah El-Wahsh, Claire Layfield, Hans Bogaardt, Fiona Kumfor, Kirrie J. Ballard
dc.identifier.citationInternational Journal of Speech-Language Pathology, 2022; 24(2):173-189
dc.identifier.doi10.1080/17549507.2021.1973101
dc.identifier.issn1754-9507
dc.identifier.issn1754-9515
dc.identifier.orcidBogaardt, H. [0000-0001-8413-533X]
dc.identifier.urihttps://hdl.handle.net/2440/145579
dc.language.isoen
dc.publisherInforma UK Limited
dc.rights© 2021 The Speech Pathology Association of Australia Limited. Published by Taylor & Francis
dc.source.urihttps://doi.org/10.1080/17549507.2021.1973101
dc.subjectMultiple sclerosis; communication changes; patient perspective; speech-language pathology; quality of life
dc.subject.meshHumans
dc.subject.meshMultiple Sclerosis
dc.subject.meshCommunication
dc.subject.meshLanguage
dc.subject.meshQuality of Life
dc.subject.meshSurveys and Questionnaires
dc.titlePerspectives from the patient: A content analysis of communication changes, impact, and strategies to facilitate communication in multiple sclerosis
dc.typeJournal article
pubs.publication-statusPublished

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