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
BackgroundThe 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 back...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2022-07-01
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| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2022/7/e38361 |
| _version_ | 1797734937724452864 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Carol Rivas |
| collection | DOAJ |
| description |
BackgroundThe 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.
ObjectiveThe 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.
MethodsThis 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.
ResultsThe 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.
ConclusionsIn 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 |
| first_indexed | 2024-03-12T12:51:19Z |
| format | Article |
| id | doaj.art-92d9d744759e434ea0cb420697d70ea3 |
| institution | Directory Open Access Journal |
| issn | 1929-0748 |
| language | English |
| last_indexed | 2024-03-12T12:51:19Z |
| publishDate | 2022-07-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Research Protocols |
| spelling | doaj.art-92d9d744759e434ea0cb420697d70ea32023-08-28T22:34:45ZengJMIR PublicationsJMIR Research Protocols1929-07482022-07-01117e3836110.2196/38361Lessons 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 StudyCarol Rivashttps://orcid.org/0000-0002-0316-8090Kusha Anandhttps://orcid.org/0000-0002-3432-3495Alison Fang-Wei Wuhttps://orcid.org/0000-0002-8640-8351Louise Goffhttps://orcid.org/0000-0001-9633-8759Ruth Dobsonhttps://orcid.org/0000-0002-2993-585XJessica Eccleshttps://orcid.org/0000-0002-0062-1216Elizabeth Ballhttps://orcid.org/0000-0001-8739-090XSarabajaya Kumarhttps://orcid.org/0000-0001-7935-3914Jenny Camaradouhttps://orcid.org/0000-0002-5742-2840Victoria Redclifthttps://orcid.org/0000-0002-8204-2153Bilal Nasimhttps://orcid.org/0000-0001-6558-659XOzan Aksoyhttps://orcid.org/0000-0003-2170-6099 BackgroundThe 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. ObjectiveThe 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. MethodsThis 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. ResultsThe 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. ConclusionsIn 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)DERR1-10.2196/38361https://www.researchprotocols.org/2022/7/e38361 |
| spellingShingle | 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 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 JMIR Research Protocols |
| 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 |
| url | https://www.researchprotocols.org/2022/7/e38361 |
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