Hearing from the unheard: impact of long-COVID in minority ethnic groups in the UK (Hi-COVE)

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.