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“We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms
BACKGROUND: The “long tail” of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%–30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the r...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
CMA Impact Inc.
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10270655/ https://www.ncbi.nlm.nih.gov/pubmed/37311595 http://dx.doi.org/10.9778/cmajo.20220205 |
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author | Goodridge, Donna Lowe, Thomas N. Cai, Shuang Herriot, Flinn N. Silverberg, Rachel V. Heynen, Michael Hall, Kelly C. Peters, Jaimie Butcher, Scotty Oyedokun, Taofiq |
author_facet | Goodridge, Donna Lowe, Thomas N. Cai, Shuang Herriot, Flinn N. Silverberg, Rachel V. Heynen, Michael Hall, Kelly C. Peters, Jaimie Butcher, Scotty Oyedokun, Taofiq |
author_sort | Goodridge, Donna |
collection | PubMed |
description | BACKGROUND: The “long tail” of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%–30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the realities faced by these patients. We sought to describe the lived experience of patients living with persistent post-COVID-19 symptoms. METHODS: We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms. We collected data from in-depth, semistructured virtual focus groups in February and March 2022. We used thematic analysis to analyze the data and met with several participants twice for respondent validation. RESULTS: The study included 41 participants (28 females) from across Canada with a mean age of 47.9 years and mean time since initial SARS-CoV-2 infection of 15.8 months. Four overarching themes were identified: the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity. INTERPRETATION: Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the ability of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society. |
format | Online Article Text |
id | pubmed-10270655 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | CMA Impact Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-102706552023-06-16 “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms Goodridge, Donna Lowe, Thomas N. Cai, Shuang Herriot, Flinn N. Silverberg, Rachel V. Heynen, Michael Hall, Kelly C. Peters, Jaimie Butcher, Scotty Oyedokun, Taofiq CMAJ Open Research BACKGROUND: The “long tail” of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%–30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the realities faced by these patients. We sought to describe the lived experience of patients living with persistent post-COVID-19 symptoms. METHODS: We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms. We collected data from in-depth, semistructured virtual focus groups in February and March 2022. We used thematic analysis to analyze the data and met with several participants twice for respondent validation. RESULTS: The study included 41 participants (28 females) from across Canada with a mean age of 47.9 years and mean time since initial SARS-CoV-2 infection of 15.8 months. Four overarching themes were identified: the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity. INTERPRETATION: Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the ability of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society. CMA Impact Inc. 2023-06-13 /pmc/articles/PMC10270655/ /pubmed/37311595 http://dx.doi.org/10.9778/cmajo.20220205 Text en © 2023 CMA Impact Inc. or its licensors https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: https://creativecommons.org/licenses/by-nc-nd/4.0/ |
spellingShingle | Research Goodridge, Donna Lowe, Thomas N. Cai, Shuang Herriot, Flinn N. Silverberg, Rachel V. Heynen, Michael Hall, Kelly C. Peters, Jaimie Butcher, Scotty Oyedokun, Taofiq “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms |
title | “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms |
title_full | “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms |
title_fullStr | “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms |
title_full_unstemmed | “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms |
title_short | “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms |
title_sort | “we’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-covid-19 symptoms |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10270655/ https://www.ncbi.nlm.nih.gov/pubmed/37311595 http://dx.doi.org/10.9778/cmajo.20220205 |
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