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Accessing palliative care for multiple sclerosis: A qualitative study of a neglected neurological disease

dc.contributor.authorCheong, Wing Loongen
dc.contributor.authorMohan, Devien
dc.contributor.authorWarren, Narelleen
dc.contributor.authorReidpath, Danielen
dc.date.accessioned2023-02-15T15:50:52Z
dc.date.available2023-02-15T15:50:52Z
dc.date.issued2019-10
dc.descriptionDaniel Reidpath - ORCID: 0000-0002-8796-0420 https://orcid.org/0000-0002-8796-0420en
dc.descriptionItem not available in this repository.
dc.description.abstractBackground Despite the global consensus on the importance of palliative care for patients with multiple sclerosis (MS), many patients in developing countries do not receive palliative care. Improving access to palliative care for MS requires a contextual understanding of how palliative care is perceived by patients and health professionals, the existing care pathways, and barriers to the provision of palliative care. Objective This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia. Methods 12 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach. Results Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care. Conclusions MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.en
dc.description.ispublishedpub
dc.description.statuspub
dc.description.urihttps://doi.org/10.1016/j.msard.2019.07.009en
dc.description.volume35en
dc.format.extent86-91en
dc.identifier.citationCheong, W.L., Mohan, D., Warren, N. and Reidpath, D.D. (2019) ‘Accessing palliative care for multiple sclerosis: A qualitative study of a neglected neurological disease’, Multiple Sclerosis and Related Disorders, 35, pp. 86–91. Available at: https://doi.org/10.1016/j.msard.2019.07.009.en
dc.identifier.issn2211-0348en
dc.identifier.urihttps://eresearch.qmu.ac.uk/handle/20.500.12289/12856
dc.identifier.urihttps://doi.org/10.1016/j.msard.2019.07.009
dc.language.isoenen
dc.publisherElsevieren
dc.relation.ispartofMultiple Sclerosis and Related Disordersen
dc.titleAccessing palliative care for multiple sclerosis: A qualitative study of a neglected neurological diseaseen
dc.typeArticleen
qmu.centreInstitute for Global Health and Developmenten
refterms.accessExceptionNAen
refterms.depositExceptionNAen
refterms.panelUnspecifieden
refterms.technicalExceptionNAen
refterms.versionNAen
rioxxterms.typeJournal Article/Reviewen

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