Rivas, Carol; Kumar, Nora Sarabajaya; Collins, Lorna; Anand, Kusha; Fang-Wei, Wu; Goff, Louise; Eccles, Jessica; ... Aksoy, Ozan; + view all Rivas, Carol; Kumar, Nora Sarabajaya; Collins, Lorna; Anand, Kusha; Fang-Wei, Wu; Goff, Louise; Eccles, Jessica; Ball, Elizabeth; Camaradou, Jennifer; Redclift, Victoria; Nasim, Bilal; Aksoy, Ozan; - view fewer (2022) Lessons from the COVID-19 pandemic to improve the health and social care and wellbeing of minoritised ethnic groups with chronic conditions or impairments: protocol for the mixed methods intersectional asset-based study CICADA. JMIR Research Protocols , 11 (7) , Article e38361. 10.2196/38361.

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Abstract

BACKGROUND: The pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritised ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritised 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 minoritised ethnic group. OBJECTIVE: The overarching aim of the 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 under-served groups, both during the pandemic and longer term, reducing inequities and enhancing social, health and wellbeing 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 semi-structured interviews including social network/map/photo elicitation methods, and two subsequent sets of remote participatory research workshops. Separate stakeholder co-creation meetings, running through the study, will develop analyses and outputs. Our longitudinal study design enables us to explore significant relationships between variables in the survey data we collect, and also changes in variables with 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 wellbeing 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 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, focussing on mental health specifically in North-East England, Greater Manchester and the North-West Coast. Data collection began in August 2021, with the last participants due to be recruited in September 2022. As of January 2022, 5,792 survey respondents and 227 interviewees had provided data. From April 2022, the time of article submission, we will recruit participants for the sub-study 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 minoritised ethnic groups, we are aiming for transformative research to improve their health and wellbeing. CLINICALTRIAL: INTERNATIONAL REGISTERED REPORT: DERR1-10.2196/38361.

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