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Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods

Nina Smyth Orcid Logo, Nisreen A. Alwan Orcid Logo, Becky Band Orcid Logo, Ashish Chaudhry, Carolyn A. Chew-Graham Orcid Logo, Dipesh Gopal Orcid Logo, Monique Jackson, Tom Kingstone, Alexa Wright, Damien Ridge

PLOS ONE, Volume: 17, Issue: 10, Start page: e0275166

Swansea University Author: Becky Band Orcid Logo

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DOI (Published version): 10.1371/journal.pone.0275166

Abstract

Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term po...

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Published in: PLOS ONE
ISSN: 1932-6203
Published: Public Library of Science (PLoS) 2022
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URI: https://cronfa.swan.ac.uk/Record/cronfa67021
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When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged &gt;18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people&#x2019;s management of Long Covid, will advise on the integration of findings to inform management of Long Covid. 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spelling 2024-09-02T16:46:39.3909384 v2 67021 2024-07-09 Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods 06b53a31f254b004de8649a376ce2fbd 0000-0001-5403-1708 Becky Band Becky Band true false 2024-07-09 HSOC Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people’s management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences. Journal Article PLOS ONE 17 10 e0275166 Public Library of Science (PLoS) 1932-6203 3 10 2022 2022-10-03 10.1371/journal.pone.0275166 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University Another institution paid the OA fee This is research supported by the Department of Health and Social Care and the National Institute for Health and Care Research (NIHR) grant NIHR203106 under the Research for Patient Benefit programme. The views expressed are those of the author(s) and not necessarily those of the National Health Service, the NIHR, or the Department of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. 2024-09-02T16:46:39.3909384 2024-07-09T15:19:44.0365654 Faculty of Medicine, Health and Life Sciences School of Psychology Nina Smyth 0000-0001-9047-6958 1 Nisreen A. Alwan 0000-0002-4134-8463 2 Becky Band 0000-0001-5403-1708 3 Ashish Chaudhry 4 Carolyn A. Chew-Graham 0000-0002-9722-9981 5 Dipesh Gopal 0000-0002-1787-7963 6 Monique Jackson 7 Tom Kingstone 8 Alexa Wright 9 Damien Ridge 10 67021__31240__1d0352fe1c574c958d75b41a2a061b35.pdf 67021.VoR.pdf 2024-09-02T16:45:00.5248010 Output 439423 application/pdf Version of Record true © 2022 Smyth et al. This is an open access article distributed under the terms of the Creative Commons Attribution License. true eng http://creativecommons.org/licenses/by/4.0/
title Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
spellingShingle Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
Becky Band
title_short Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
title_full Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
title_fullStr Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
title_full_unstemmed Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
title_sort Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
author_id_str_mv 06b53a31f254b004de8649a376ce2fbd
author_id_fullname_str_mv 06b53a31f254b004de8649a376ce2fbd_***_Becky Band
author Becky Band
author2 Nina Smyth
Nisreen A. Alwan
Becky Band
Ashish Chaudhry
Carolyn A. Chew-Graham
Dipesh Gopal
Monique Jackson
Tom Kingstone
Alexa Wright
Damien Ridge
format Journal article
container_title PLOS ONE
container_volume 17
container_issue 10
container_start_page e0275166
publishDate 2022
institution Swansea University
issn 1932-6203
doi_str_mv 10.1371/journal.pone.0275166
publisher Public Library of Science (PLoS)
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Psychology{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Psychology
document_store_str 1
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description Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people’s management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences.
published_date 2022-10-03T08:26:43Z
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