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

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.