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Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study

BACKGROUND: The COVID-19 pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritized ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritized ethnic backgrounds, their existen...

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Autores principales: Rivas, Carol, Anand, Kusha, Wu, Alison Fang-Wei, Goff, Louise, Dobson, Ruth, Eccles, Jessica, Ball, Elizabeth, Kumar, Sarabajaya, Camaradou, Jenny, Redclift, Victoria, Nasim, Bilal, Aksoy, Ozan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9255363/
https://www.ncbi.nlm.nih.gov/pubmed/35609311
http://dx.doi.org/10.2196/38361
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author Rivas, Carol
Anand, Kusha
Wu, Alison Fang-Wei
Goff, Louise
Dobson, Ruth
Eccles, Jessica
Ball, Elizabeth
Kumar, Sarabajaya
Camaradou, Jenny
Redclift, Victoria
Nasim, Bilal
Aksoy, Ozan
author_facet Rivas, Carol
Anand, Kusha
Wu, Alison Fang-Wei
Goff, Louise
Dobson, Ruth
Eccles, Jessica
Ball, Elizabeth
Kumar, Sarabajaya
Camaradou, Jenny
Redclift, Victoria
Nasim, Bilal
Aksoy, Ozan
author_sort Rivas, Carol
collection PubMed
description BACKGROUND: The COVID-19 pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritized ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritized ethnic backgrounds, their existence before the pandemic and increase since, and the discriminations that each group faces, our interest is in understanding the interplay between being disabled AND being from a minoritized ethnic group. OBJECTIVE: The overarching aim of the Coronavirus Chronic Conditions and Disabilities Awareness (CICADA) project, building on this understanding, is to improve pandemic and longer-term support networks, and access to and experiences of care, services, and resources for these underserved groups, both during the pandemic and longer term, thereby reducing inequities and enhancing social, health, and well-being outcomes. METHODS: This mixed methods study involves three “sweeps” of a new UK survey; secondary analyses of existing cohort and panel surveys; a rapid scoping review; a more granular review; and qualitative insights from over 200 semistructured interviews, including social network/map/photo elicitation methods and two subsequent sets of remote participatory research workshops. Separate stakeholder cocreation meetings, running throughout the study, will develop analyses and outputs. Our longitudinal study design enables the exploration of significant relationships between variables in the survey data collected and to the assessment of changes in variables over time, including consideration of varying pandemic contexts. The qualitative data will provide more granular detail. We will take a strengths and assets–based approach, underpinned by the social model of disability and by intersectional considerations to challenge discrimination. Our exploration of the social determinants of health and well-being is framed by the social ecological model. RESULTS: The CICADA project was funded by the Health and Social Care Delivery Research (HSDR) Programme of the United Kingdom (UK) National Institute for Health and Care Research (NIHR) in March 2021 and began in May 2021. Further work within the project (84 interviews) was commissioned in March 2022, a substudy focusing on mental health, specifically in Northeast England, Greater Manchester, and the Northwest Coast of the United Kingdom. Data collection began in August 2021, with the last participants due to be recruited in September 2022. As of January 2022, 5792 survey respondents and 227 interviewees had provided data. From April 2022, the time of article submission, we will recruit participants for the substudy and wave 2 of the surveys and qualitative work. We expect results to be published by winter 2022. CONCLUSIONS: In studying the experiences of disabled people with impairments and those living with chronic conditions who come from certain minoritized ethnic groups, we are aiming for transformative research to improve their health and well-being. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38361
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spelling pubmed-92553632022-07-06 Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study Rivas, Carol Anand, Kusha Wu, Alison Fang-Wei Goff, Louise Dobson, Ruth Eccles, Jessica Ball, Elizabeth Kumar, Sarabajaya Camaradou, Jenny Redclift, Victoria Nasim, Bilal Aksoy, Ozan JMIR Res Protoc Protocol BACKGROUND: The COVID-19 pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritized ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritized ethnic backgrounds, their existence before the pandemic and increase since, and the discriminations that each group faces, our interest is in understanding the interplay between being disabled AND being from a minoritized ethnic group. OBJECTIVE: The overarching aim of the Coronavirus Chronic Conditions and Disabilities Awareness (CICADA) project, building on this understanding, is to improve pandemic and longer-term support networks, and access to and experiences of care, services, and resources for these underserved groups, both during the pandemic and longer term, thereby reducing inequities and enhancing social, health, and well-being outcomes. METHODS: This mixed methods study involves three “sweeps” of a new UK survey; secondary analyses of existing cohort and panel surveys; a rapid scoping review; a more granular review; and qualitative insights from over 200 semistructured interviews, including social network/map/photo elicitation methods and two subsequent sets of remote participatory research workshops. Separate stakeholder cocreation meetings, running throughout the study, will develop analyses and outputs. Our longitudinal study design enables the exploration of significant relationships between variables in the survey data collected and to the assessment of changes in variables over time, including consideration of varying pandemic contexts. The qualitative data will provide more granular detail. We will take a strengths and assets–based approach, underpinned by the social model of disability and by intersectional considerations to challenge discrimination. Our exploration of the social determinants of health and well-being is framed by the social ecological model. RESULTS: The CICADA project was funded by the Health and Social Care Delivery Research (HSDR) Programme of the United Kingdom (UK) National Institute for Health and Care Research (NIHR) in March 2021 and began in May 2021. Further work within the project (84 interviews) was commissioned in March 2022, a substudy focusing on mental health, specifically in Northeast England, Greater Manchester, and the Northwest Coast of the United Kingdom. Data collection began in August 2021, with the last participants due to be recruited in September 2022. As of January 2022, 5792 survey respondents and 227 interviewees had provided data. From April 2022, the time of article submission, we will recruit participants for the substudy and wave 2 of the surveys and qualitative work. We expect results to be published by winter 2022. CONCLUSIONS: In studying the experiences of disabled people with impairments and those living with chronic conditions who come from certain minoritized ethnic groups, we are aiming for transformative research to improve their health and well-being. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38361 JMIR Publications 2022-07-01 /pmc/articles/PMC9255363/ /pubmed/35609311 http://dx.doi.org/10.2196/38361 Text en ©Carol Rivas, Kusha Anand, Alison Fang-Wei Wu, Louise Goff, Ruth Dobson, Jessica Eccles, Elizabeth Ball, Sarabajaya Kumar, Jenny Camaradou, Victoria Redclift, Bilal Nasim, Ozan Aksoy. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 01.07.2022. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Protocol
Rivas, Carol
Anand, Kusha
Wu, Alison Fang-Wei
Goff, Louise
Dobson, Ruth
Eccles, Jessica
Ball, Elizabeth
Kumar, Sarabajaya
Camaradou, Jenny
Redclift, Victoria
Nasim, Bilal
Aksoy, Ozan
Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study
title Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study
title_full Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study
title_fullStr Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study
title_full_unstemmed Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study
title_short Lessons From the COVID-19 Pandemic to Improve the Health, Social Care, and Well-being of Minoritized Ethnic Groups With Chronic Conditions or Impairments: Protocol for a Mixed Methods Study
title_sort lessons from the covid-19 pandemic to improve the health, social care, and well-being of minoritized ethnic groups with chronic conditions or impairments: protocol for a mixed methods study
topic Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9255363/
https://www.ncbi.nlm.nih.gov/pubmed/35609311
http://dx.doi.org/10.2196/38361
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