The first six months of the coronavirus pandemic have understandably focused on the numbers: testing, treatment effects and vaccine trials, rates of infection, death and excess mortality, comparisons between ethnic groups, nations, care settings and geographical locations. We need these numbers to illuminate what is going on and to show how different policies and treatments are working. But to understand what the illness means to people, and to elucidate the rationale for how care and communities might change, we also need the narratives, the stories of those coping, grieving, recovering and struggling as a result of this pandemic.
The coming months provide a critical opportunity to capture and learn from people’s narratives. We need to document and understand experiences of living through COVID-19 during such exceptional times. To achieve this we are interviewing people who have had COVID-19. We want to know how they make sense (or struggle to make sense) of what has happened to them and their perspectives on what could have been different.
People from several ethnic minority communities are disproportionately affected by COVID. This is a complex picture, being slowly revealed as the impact of co-morbidities, household composition, occupational risks, structural and institutional racism, discrimination and other factors, become clearer. To reflect this unfair burden of illness, our study is seeking to hear from with Black, South Asian and other ethnic minority communities as a priority.
We will use the interviews to develop an online platform as part of the Healthtalk.org website. This will form a record of people’s experiences of the COVID-19 pandemic in the UK. The website will have extracts from people’s interviews giving examples of the medical aspects of COVID-19, such as symptoms, testing and treatment. It will also have information about the broader impact of COVID-19 on other aspects of people’s lives.
This information will help inform and support people and their families. We will also use this information to develop resources to train health and social care staff, and support policy makers in improving health service delivery.
We are currently recruiting participants who have had COVID-19, particularly those from Black, Asian and other minority ethnic communities. If you or someone who know would like to learn more about joining the research you can contact the team via the study email address: firstname.lastname@example.org. You can also visit our website.
Anna Dowrick is a qualitative researcher at the Nuffield Department of Primary Care Health Sciences