‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19
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Abstract
To explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow COVID-19.
Design and setting
A UK-wide longitudinal qualitative study comprising online focus groups with email follow-up.
Method
50 participants were recruited from a previous qualitative study of the lived experience of long COVID-19 (n=23) and online support groups for people with persistent neurocognitive symptoms following COVID-19 (n=27). In remotely held focus groups, participants were invited to describe their neurocognitive 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 people with lived experience of brain fog.
Results
Of the 50 participants, 42 were female and 32 white British. 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 symptoms (especially executive function, attention, memory and language), accounts of how the illness fluctuated—and progressed 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 mechanisms of neurocognitive symptoms after COVID-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with their experience of neurocognitive symptoms in its personal, social and occupational context as well as specialist services that include provision for neurocognitive symptoms, are accessible, easily navigable, comprehensive and interdisciplinary.
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SciScore for 10.1101/2021.08.07.21261740: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Ethics IRB: Ethical approval was granted from the East Midlands – Leicester Central Research Ethics Committee (IRAS Project ID: 283196; REC ref 20/EM0128) on 4th May 2020 and subsequent amendments.
Consent: After a brief explanation and affirmation of understanding and consent, participants were invited to tell the story of their neurocognitive symptoms, with conversational prompts to maintain the narrative and elicit information about the impact on an individual’s life and any interaction between symptoms [28].Sex as a biological variable not detected. Randomization not detected. Blinding not detected. Power Analysis not detected. Table 2: Resources
Software and Algorithms Sentences Resources Data management … SciScore for 10.1101/2021.08.07.21261740: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Ethics IRB: Ethical approval was granted from the East Midlands – Leicester Central Research Ethics Committee (IRAS Project ID: 283196; REC ref 20/EM0128) on 4th May 2020 and subsequent amendments.
Consent: After a brief explanation and affirmation of understanding and consent, participants were invited to tell the story of their neurocognitive symptoms, with conversational prompts to maintain the narrative and elicit information about the impact on an individual’s life and any interaction between symptoms [28].Sex as a biological variable not detected. Randomization not detected. Blinding not detected. Power Analysis not detected. Table 2: Resources
Software and Algorithms Sentences Resources Data management and analysis: Focus groups were audiotaped with consent, transcribed in full, de-identified and entered onto NVIVO software version 12; contemporaneous notes were also entered. NVIVOsuggested: (NVivo, RRID:SCR_014802)Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:Strengths and limitations of the study: To our knowledge, this is the largest and most in-depth qualitative study of neurocognitive symptoms of long Covid published in the academic literature to date. The research team included both clinicians and social scientists. Our participants spanned a wide range of ages, ethnic and social backgrounds, and illness experiences – including, importantly, the under-researched majority who were never hospitalised. The majority of our participants became infected in the first wave of the pandemic, meaning they are among the earliest cohort of patients to experience long Covid, with email follow-up almost 12 months post-infection giving an insight into the natural history of the condition. We oversampled men and people from non-White ethnic groups to partially correct an initially skewed sample. The use of multiple linked sociological theories allowed to produce a rich theorisation of the lived experience of the illness and draw on that theorisation to produce principles and practical proposals for improving services. We included experts by experience (people with The study does have some limitations. The entirely UK-based sample included a high proportion of people recruited from a support group for those with neurological symptoms (hence, likely to be more severely affected), and was not fully corrected for some demographic skews. In particular we may not have fully captured the perspectives of some minority ethnic groups or diversity in oc...
Results from TrialIdentifier: No clinical trial numbers were referenced.
Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
Results from scite Reference Check: We found no unreliable references.
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