Title: CICADA-ME: Coronavirus Intersectionalities: Chronic Conditions and Disabilities And Migrants and other Ethnic minorities
Funder: Department of Health and Social Care

Abstract: Many people from minority ethnic groups, especially those with underlying (chronic) conditions/disabilities, face barriers to accessing networks of appropriate support, health and social care or vital ‘resources’, such as medicine and food. Around 50% lived in poverty in 2019; the pandemic has worsened their plight, highlighting the need for these barriers to be removed. To determine where and how best to intervene to ensure this, we need to understand the problems - and successes - these groups have experienced, especially as health and social care tries to return to normal. We also need to understand what affects their vaccine uptake and if pandemic-related service changes that are retained further exclude them. Our approach is 'intersectional'. This means we recognise everyone is affected differently by the pandemic, according to the intersection (interplay) of factors such as ethnicity, citizenship, age, gender, their work, and health or disability._x000D_ To understand this complex situation, we will survey 4,000 UK people from minority ethnic groups and for contrast 1000 white British, 3 times over 15 months. We will compare their health, social networks (who they have contact with) and how these help or hinder them, ways they cope with pandemic changes and associated access to support, care and resources. We will consider how intersectional factors affect this. _x000D_ After Survey 1 we will interview 210 more people in 5 diverse sites in England about the same topics, probing for coping strategies and ideas to inform health and social care policy and practice. Interviewees will also describe their networks using special brief questionnaires, photos and maps. We use remote working. We will find people for the study via social media, NHS clinics, charities, special patient and migrant groups, our own networks, and large databases of adults interested in health research across the UK._x000D_ We will focus on migrants from the Middle East, India, Pakistan, Poland or Africa, or whose parents were born there, as the most likely to have problems (e.g. to have limited citizenship rights or to die from COVID-19). We will look at the impact of also having a chronic condition/disability including 'long covid'. Our PPI leads will help train local community members to do some of the research. _x000D_ After surveys 2 and 3, interviewees will be invited to workshops to discuss findings and more recent changes. We will also review published and informal (e.g. blog) articles about pandemic ethnic minority and disability experiences, and data from other complementary COVID-19 surveys. All our findings will be combined. Over the 18-month study we will hold 5 participatory sessions with members of different ethnic minority communities and key informants working together to help analyse our data and co-design solutions to issues, pragmatically including ‘life hacks’ and service adaptations for rapid impact. At 16 months we will interview 15-25 key informants such as support staff and community leaders to help us put our work into immediate practice. _x000D_ Findings and solutions will be shared as they emerge at each of the 3 data waves, for early benefit. We will report changes over time in experiences, outcomes and solutions and consider how to apply our work across the UK. We aim for immediate, readily implemented, relevant useful change in UK pandemic health and social care service delivery. We include training outputs, strong networks and Co-As with direct influence on policy and practice.

Lay abstract: Two groups that experience similar societal inequities (expanded by the COVID-19 pandemic), including in social and health care, are people with chronic conditions/disabilities (PwCD) and ethnic minorities. The worst affected are both ethnic minority AND with chronic conditions/disabilities, a common group, as COVID-19 mortality statistics show. There is a largely unmet expressed need to explore this combined group’s pandemic experiences with new or worsening conditions/disabilities including post-Covid syndrome in relation to reduced services, inequalities, lifestyle changes or health neglect and vaccine uptake. We aim to contribute and inform evidence-based formal and informal strategies, guidelines, recommendations and easily adopted interventions for pandemic-related and future health and social care policy and practice, to mitigate inequities and improve the experiences, health and wellbeing outcomes of minority ethnic groups at the intersection with chronic conditions/disabilities. To do so, we will develop a rich intersectional understanding of their mental and physical health, coping, access to resources, and informal and formal social and health care support experiences, and relevant assets and strengths, longitudinally over 18 months using mixed methods. Our 4 work packages involve a new UK survey in 3 waves, parallel qualitative insights, secondary analyses of other surveys, rapid review, and outputs for immediate use developed with participatory methods, with co-create workshops involving our PPI team and other stakeholders throughout. Our survey (n=5000) samples for 1st and 2nd generation community-dwelling minority ethnic groups and white British comparators, all with/without chronic conditions/disabilities, across the UK’s 4 nations, to determine relationships between measured variables and their trajectories. After Survey Wave 1 we will interview 1st and 2nd generation ethnic minorities from Poland, India and Pakistan, sub-Saharan Africa, and the Middle East, and white British comparisons, all with and without chronic conditions/disabilities, about their pandemic experiences at 5 diverse sites in England, supporting transferability. Interviews (n=210) informed by survey analyses will include social network analysis, photovoice. We will train local lay people to help undertake these remotely; a transformative community migrant-majority research-active group will be our main London co-researcher. This group and a main co-applicant are members of an existing UKRI consortium and have undertaken complementary work at two of our sites, demonstrating the feasibility of our plans. At Waves 2 and 3 research workshops with interviewees will use video vignettes built from earlier study findings. Key informant interviews and co-create workshops will consider implementation. We will synthesise Keyword frequency analysis, Framework, discourse and narrative analyses, Latent Growth Modelling, Structural Equation Modelling, and social network analyses using tabulated evidence to decision methods, with interim findings reported at each wave for early delivery of benefits. Respondent and national UK demographic data will be compared for representativeness, and transferability explored at each stage. Data will be presented separately and combined for ethnic minorities and PwCD. We expect rapid impact from our strong networks and Co-A and collaborator existing strong pathways to influence in health and social policy and clinical practice.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE