Using qualitative free-text data to investigate the lived experience of the COVID-19 pandemic for a large cohort of Australians with different multiple sclerosis related disability levels.

Autor:	Campbell JA; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia Julie.Campbell@utas.edu.au., van der Mei I; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia., Taylor BV; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia., Palmer AJ; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia., Henson GJ; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia., Laslett LL; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia., Simpson-Yap S; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia.; The University of Melbourne School of Population and Global Health, Melbourne, Victoria, Australia., Claflin SB; Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania, Australia.
Jazyk:	angličtina
Zdroj:	Journal of neurology, neurosurgery, and psychiatry [J Neurol Neurosurg Psychiatry] 2023 Dec; Vol. 94 (12), pp. 975-983. Date of Electronic Publication: 2023 Oct 26.
DOI:	10.1136/jnnp-2022-330755
Abstrakt:	Background: No large-scale qualitative studies have investigated the lived experience of people living with multiple sclerosis (PwMS) during the pandemic according to their disability level. We used qualitative research methods to investigate the lived experience of a large cohort of Australians living with differing multiple sclerosis (MS)-related disability levels during the COVID-19 pandemic. We also provided useful contextualisation to existing quantitative work. Methods: This was a retrospective survey-based mixed-methods cohort study. A quality-of-life study was conducted within the Australian MS Longitudinal Study during the pandemic. Disability severity was calculated using the Patient Determined Disease Steps. Qualitative free-text data regarding COVID-19 impacts was collected/analysed for word frequency and also thematically (inductively/deductively using sophisticated grounded theory) using NVivo software. We also triangulated word frequency with emerging themes. Results: N=509 PwMS participated providing n=22 530 words of COVID-19-specific data. Disability severity could be calculated for n=501 PwMS. The word 'working' was important for PwMS with no disability, and 'support' and 'isolation' for higher disability levels. For PwMS with milder disability, thematic analysis established that multitasking increased stress levels, particularly if working from home (WFH) and home-schooling children. If not multitasking, WFH was beneficial for managing fatigue. PwMS with severe disability raised increased social isolation as a concern including prepandemic isolation. Conclusions: We found negative impacts of multitasking and social isolation for PwMS during the pandemic. WFH was identified as beneficial for some. We recommend targeted resourcing decisions for PwMS in future pandemics including child-care relief and interventions to reduce social isolation and suggest that these could be incorporated into some form of advanced care planning. As the nature of work changes postpandemic, we also recommend a detailed investigation of WFH for PwMS including providing tailored employment assistance. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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