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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


Campbell, JA and van der Mei, I and Taylor, BV and Palmer, AJ and Henson, GJ and Laslett, LL and Simpson-Yap, S and Claflin, SB, 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, Journal of Neurology, Neurosurgery and Psychiatry ISSN 0022-3050 (2023) [Refereed Article]

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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 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 (AMSLS) 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 pre-pandemic 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 post-pandemic, we also recommend a detailed investigation of WFH for PwMS including providing tailored employment assistance.

Item Details

Item Type:Refereed Article
Keywords:multiple sclerosis, qualitative research, COVID-19, working from home, social isolation
Research Division:Biomedical and Clinical Sciences
Research Group:Neurosciences
Research Field:Neurology and neuromuscular diseases
Objective Division:Health
Objective Group:Evaluation of health and support services
Objective Field:Evaluation of health outcomes
UTAS Author:Campbell, JA (Dr Julie Campbell)
UTAS Author:van der Mei, I (Professor Ingrid van der Mei)
UTAS Author:Taylor, BV (Professor Bruce Taylor)
UTAS Author:Palmer, AJ (Professor Andrew Palmer)
UTAS Author:Henson, GJ (Mr Glen Henson)
UTAS Author:Laslett, LL (Dr Laura Laslett)
UTAS Author:Simpson-Yap, S (Dr Steve Simpson JR)
UTAS Author:Claflin, SB (Dr Suzi Claflin)
ID Code:155777
Year Published:2023
Deposited By:Menzies Institute for Medical Research
Deposited On:2023-03-16
Last Modified:2023-03-16

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