“I can’t cope with multiple inputs”: Qualitative study of the lived experience of ‘brain fog’ after Covid-19

Abstract

AbstractObjectiveTo explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow Covid-19.Design and settingUK-wide longitudinal qualitative study comprising online interviews and focus groups with email follow-up.Method50 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.Results84% 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.ConclusionThese 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.SummaryStrengths and Limitations of StudyTo our knowledge, this is the largest and most in-depth qualitative study of the lived experience of brain fog in survivors of Covid-19.The research team was interdisciplinary and interprofessional, and included consultation with patient experts by experience, who helped with data interpretation and peer review.Oversampling from men and non-white ethnic groups allowed partial correction of an initially skewed sample.The sample was drawn entirely from the UKResidual skews in the samples, particularly regarding minority ethnic groups and occupational classes, limited our ability to capture the full range of experiencesFunding statementThis research is funded from the following sources: National Institute for Health Research (BRC-1215-20008), ESRC (ES/V010069/1), and Wellcome Trust (WT104830MA). Funders had no say in the planning and execution of the study or writing up of the paper. KTSP is supported by the National Institute for Health Research Biomedical Research Centre based at Oxford University Hospitals NHS Foundation Trust and the University of Oxford.Competing Interests StatementEL and TG provided evidence on long Covid for House of Lords Select Committee TG was on the oversight group for the long Covid guideline at the National Institute for Health and Clinical Excellence, and at the time of writing is on the UK’s National Long Covid Task Force.KP and CC have no competing interests to declare.