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Abstract
Objective 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.
- COVID-19
- infectious diseases
- occupational & industrial medicine
- qualitative research
Data availability statement
Data are available upon reasonable request. Deidentified participant focus group data may be available from the corresponding author, using the correspondence contact details. This is subject to the correct ethical approvals and data sharing approvals and data governance structures being in place.
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
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Data availability statement
Data are available upon reasonable request. Deidentified participant focus group data may be available from the corresponding author, using the correspondence contact details. This is subject to the correct ethical approvals and data sharing approvals and data governance structures being in place.
Footnotes
Twitter @LaddsEmma, @trishgreenhalgh
Contributors el and TG conceptualised and designed the study. el, LH, CC and KP conducted focus groups. el and CC led data analysis, with input from LH, TG and KP and produced a first draft of the results section. el and CC wrote the first draft of the paper, which was refined by all authors. LH provided research assistant support and conducted some interviews. Sharon Taylor and Clare Rayner provided expertise by experience and knowledge of patient-led research. CC presented findings to long COVID-19 patient participants with assistance from el and TG. All authors contributed to refinement of the paper and provided additional references. el is the corresponding author and guarantor and affirms that the manuscript is an honest, accurate and transparent account of the study being reported, that no important aspects of the study have been omitted and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.
Funding This 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 role in the planning and execution of the study or writing up of the paper. KP 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 el and TG provided evidence on long COVID-19 for House of Lords Select Committee. TG was on the oversight group for the National Institute for Health and Clinical Excellence guideline on managing the long-term effects of COVID-19, and at the time of writing was on the UK’s National Long COVID Taskforce.
KP and CC have no competing interests to declare.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.