'I can't cope with multiple inputs': Qualitative study of the lived experiences of 'brain fog' after Covid-19

Callan, C.; Ladds, E.; Hussain, L.; Pattinson, K.; Greenhalgh, T.

Objective To explore the lived experience of brain fog i.e the wide variety of neurocognitive symptoms that can follow Covid-19. Design and setting UK wide longitudinal qualitative study comprising online interviews and focus groups with email follow-up. Method 50 participants were recruited from a previous qualitative study of the lived experience of long Covid (n = 23) and online support groups for people with persistent neurological problems following Covid-19 (n = 27). In remotely held focus groups, participants were invited to describe their cognitive symptoms and comment on others accounts. Individuals were followed up by email 4-6 months later. Data were audiotaped, transcribed, anonymised and coded in NVIVO. They were analysed by an interdisciplinary team with expertise in general practice, clinical neuroscience, the sociology of chronic illness and service delivery, and checked by three people with lived experience of brain fog. Results 84% of participants were female and 60% were White British ethnicity. Most had never been hospitalised for Covid-19. Qualitative analysis revealed the following themes: mixed views on the appropriateness of the term brain fog; rich descriptions of the experience of neurocognitive impairments (especially executive function, attention, memory and language), accounts of how the illness fluctuated, and in some but not all cases, resolved, over time; the profound psychosocial impact of the condition on relationships, personal and professional identity; self-perceptions of guilt, shame and stigma; strategies used for self-management; challenges accessing and navigating the healthcare system; and participants search for physical mechanisms to explain their symptoms. Conclusion These qualitative findings complement research into the epidemiology and underlying pathophysiological mechanisms for neurological symptoms after Covid-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with the illness in its personal, social and occupational context as well as specialist services that are accessible, easily navigable, comprehensive, and interdisciplinary.