Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods

Abstract

Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people’s management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences.

People from ethnic minorities seeking help for long COVID: a qualitative study

“…Qualitative methodology was used to understand experiences of Long Covid, enabling exploration of lived experiences 35 , which are crucial to informing care and management of health conditions 4,36 . Further details can be found in the study protocol 37 . Ethical approval was obtained from the University of Westminster (ETH2223-1313).…”

“Top notes of gluten-free oatcakes, middle notes of humid sheets and a base note of despair” – Stories of Long Covid in ‘The Guardian’

“…Importantly, they can often neither afford the specialized care that Long Covid requires, nor stay home until full recovery (Beccia et al 2022, 8). In this, The Guardian follows a general trend in UK-based sociological and public health research to under-represent the Long Covid experiences of ethnic minorities, whose experiences might differ due to, e.g., discrimination or barriers to seeking and accessing healthcare (Baz et al 2021;Pietrzak-Franger 2021;Smyth et al 2022). Additionally, possible lack of (media) literacy and access to technology, as well as language barriers, mean that many asylum seekers or migrants will not only be under-represented in media depictions, they also may not be able to benefit from the type of peer-to-peer support that has evolved around Long Covid.…”