Title: Hearing from the unheard: impact of long-COVID in minority ethnic groups in the UK (Hi-COVE)
Funder: Department of Health and Social Care

Abstract: Background: Between 1-2 million people in the UK report persistent (often multiple) symptoms (including fatigue, headache, chest pressure/tightness, breathlessness, and cognitive impairment or brain fog ), following (even a mild ) COVID-19 infection (between 14-38% experience ongoing symptoms for several months). Patients call this Long COVID (LC). The National Institute for Health Care and Excellence (NICE) guidance calls this post-acute COVID-19 syndrome . LC greatly impacts people s lives. However, patients frequently report difficulty accessing quality healthcare services. Understanding the broader social context in health, adopting a relational approach (i.e. disease/care shaped by social structures) and de-colonising health is important for good health/healthcare, yet little is known about these in relation to LC. LC research under-represents the lived experience of ethnic minorities. Health/social inequalities, systemic (hidden) racism, stigma and discrimination combine, meaning that some groups are disproportionately affected by COVID-19 (particularly Black, South Asian and Arab people). Self-reported LC in these groups is not higher than rates in White groups, but since rates are based on self-reports, these differences may be because of differing health beliefs (shaped by culture, contexts and religion) and accessing different support systems/networks (e.g. rely on personal communities, spirituality/faith). This also means that current mainstream support might not be accessible and/or match their needs. Additionally, empathy and legitimisation may be withheld for conditions like LC that are, for example, feminised, where recovery is less certain, and/or affect less well-regarded groups in society. Research Questions: For Black, South Asian or Arab people (i) what are the beliefs and perceptions about LC, presentation of symptoms, impact on daily lives, and role of wider social systems/networks, (ii) what are the support needs, treatment experiences, and the extent to which the care offered matches needs, (iii) and how can support needs be best addressed to encourage better outcomes for patients. Methodology: Adopting a lived experience (qualitative) approach, one-to-one interviews with Black, South Asian or Arab adults (N=30: multi-stranded recruitment approach: social media, engagement with relevant networks/groups/organisations and local advertisement in areas identified as disproportionately affected by COVID-19) who previously or currently self-report LC. We will hold stakeholder workshops with healthcare professionals (our collaborators from two NHS Foundation Trusts: Midlands Partnership & Guy s and St Thomas and Manchester Clinical Commissioning Group: CCG) and other relevant stakeholders from patient s personal communities and support systems/networks. Our patient involvement work (five LC patients/ Manchester CCG) informed the project scope and highlighted study importance. Timeline: Interviews and data analysis (6-9 months); stakeholder workshops and outputs dissemination (with preliminary findings - 6 months into the grant). Our patient advisory group (recruited across North/South England) will ensure involvement from LC patients at all research stages and will contribute to stakeholder workshops. Anticipated impact & Dissemination: Interactive (artwork/video) and written outputs connecting patients, healthcare/non-healthcare professionals, voluntary/community groups and commissioners/policy makers. Improvements in LC management/care in ethnic minorities through (i) increasing LC awareness/understanding; (ii) identifying broader support systems/networks; (iii) and by ensuring service provision is more culturally-sensitive. The work will inform future research evaluating tailored and culturally-sensitive healthcare and training for primary-care services.

Lay abstract: Long Covid is the name given to not recovering quickly after getting Covid-19, and experiencing ongoing symptoms such as extreme exhaustion, difficulty breathing and memory or concentration problems. These persistent symptoms affect people s physical and mental health, and cause significant disruption to daily lives and people s sense of who they are. Ethnic minority groups tend to suffer more from Covid-19, e.g. more infections, with worse severity and death rates, especially for Black, South Asian and Arab people. Although so far there is no evidence that Long Covid is higher in these groups, lack of trust in healthcare, racism, stigma, discrimination, and language barriers experienced by these groups may hinder reporting of Long Covid symptoms and care, and may mean they experience worse consequences of Long Covid. Current Covid-19 care management is not yet sufficiently informed by the needs of ethnic minorities, hindering equal access to quality healthcare. Minorities many times turn to families, alternative support systems such as local networks, religious and cultural communities, as well as traditional healers. Our research will look to understand views and experiences of underrepresented groups; alternative support systems used as well as what support they want and need from health care services. Findings will help us to imagine better healthcare services for these groups. The research has been informed by patients and the public. We will recruit Black, South Asian, and Arab participants (up to ten of each group) for interviews to explore their views and experiences of Long Covid. We will aim to include a wide variety of people to include different: ages, gender, severity of symptoms of Long Covid, including both those diagnosed with Long Covid(who may have accessed healthcare) and those who self-report Long Covid (to ensure we are inclusive of those who fall through the gaps of healthcare). Interviews will explore the following: (a) What people think about their symptoms, (b) What support and treatment people prefer, (c) How Long Covid has impacted their lives, (d) Access to support systems (friend, family, community, healthcare systems), and (e) Challenges to accessing appropriate support. Our findings will be used to start conversations with Long Covid patients, healthcare professionals and key stakeholders to design better healthcare services for underrepresented groups. Findings will be shared with different groups, including patients, healthcare professionals, community groups, non-healthcare professionals and commissioners, and policy makers. We will deliver presentations, write reports, develop short-videos and/or photo-texts with our artist-collaborator. All of which will be available to the public on a dedicated website, co-created with Long Covid patients. These findings will inform content for a training workshop to support healthcare professionals to better understand the needs of people living with Long Covid from ethnic minority backgrounds.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: INFECTION