‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19
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 qua...
Autores principales: | , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2022
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8844964/ https://www.ncbi.nlm.nih.gov/pubmed/35149572 http://dx.doi.org/10.1136/bmjopen-2021-056366 |
_version_ | 1784651578581450752 |
---|---|
author | Callan, Caitriona Ladds, Emma Husain, Laiba Pattinson, Kyle Greenhalgh, Trisha |
author_facet | Callan, Caitriona Ladds, Emma Husain, Laiba Pattinson, Kyle Greenhalgh, Trisha |
author_sort | Callan, Caitriona |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8844964 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-88449642022-02-16 ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 Callan, Caitriona Ladds, Emma Husain, Laiba Pattinson, Kyle Greenhalgh, Trisha BMJ Open General practice / Family practice 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. BMJ Publishing Group 2022-02-11 /pmc/articles/PMC8844964/ /pubmed/35149572 http://dx.doi.org/10.1136/bmjopen-2021-056366 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/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/. |
spellingShingle | General practice / Family practice Callan, Caitriona Ladds, Emma Husain, Laiba Pattinson, Kyle Greenhalgh, Trisha ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 |
title | ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 |
title_full | ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 |
title_fullStr | ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 |
title_full_unstemmed | ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 |
title_short | ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 |
title_sort | ‘i can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after covid-19 |
topic | General practice / Family practice |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8844964/ https://www.ncbi.nlm.nih.gov/pubmed/35149572 http://dx.doi.org/10.1136/bmjopen-2021-056366 |
work_keys_str_mv | AT callancaitriona icantcopewithmultipleinputsaqualitativestudyofthelivedexperienceofbrainfogaftercovid19 AT laddsemma icantcopewithmultipleinputsaqualitativestudyofthelivedexperienceofbrainfogaftercovid19 AT husainlaiba icantcopewithmultipleinputsaqualitativestudyofthelivedexperienceofbrainfogaftercovid19 AT pattinsonkyle icantcopewithmultipleinputsaqualitativestudyofthelivedexperienceofbrainfogaftercovid19 AT greenhalghtrisha icantcopewithmultipleinputsaqualitativestudyofthelivedexperienceofbrainfogaftercovid19 |