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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

Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods
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.
1932-6203
Smyth, Nina
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Alwan, Nisreen
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Band, Rebecca
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Chaudhry, Ashish
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Chew-Graham, Carolyn A.
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Gopal, Dipesh
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Jackson, Monique
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Kingstone, Tom
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Wright, Alexa
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Ridge, Damien
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Smyth, Nina
c9720d57-5c5d-4cc1-88eb-71578a97e7ab
Alwan, Nisreen
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Band, Rebecca
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Chaudhry, Ashish
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Chew-Graham, Carolyn A.
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Gopal, Dipesh
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Jackson, Monique
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Kingstone, Tom
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Wright, Alexa
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Ridge, Damien
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Smyth, Nina, Alwan, Nisreen, Band, Rebecca, Chaudhry, Ashish, Chew-Graham, Carolyn A., Gopal, Dipesh, Jackson, Monique, Kingstone, Tom, Wright, Alexa and Ridge, Damien (2022) Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods. PLoS ONE.

Record type: Article

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 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.

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Accepted/In Press date: 12 September 2022
Published date: 3 October 2022

Identifiers

Local EPrints ID: 470552
URI: http://eprints.soton.ac.uk/id/eprint/470552
ISSN: 1932-6203
PURE UUID: ea0a6c38-b0a7-4262-8961-d6c300d7cbdf
ORCID for Nisreen Alwan: ORCID iD orcid.org/0000-0002-4134-8463
ORCID for Rebecca Band: ORCID iD orcid.org/0000-0001-5403-1708

Catalogue record

Date deposited: 12 Oct 2022 16:50
Last modified: 17 Mar 2024 03:38

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Contributors

Author: Nina Smyth
Author: Nisreen Alwan ORCID iD
Author: Rebecca Band ORCID iD
Author: Ashish Chaudhry
Author: Carolyn A. Chew-Graham
Author: Dipesh Gopal
Author: Monique Jackson
Author: Tom Kingstone
Author: Alexa Wright
Author: Damien Ridge

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