The lived experience of Long COVID in ethnic minorities in the UK: A Qualitative Systematic Review

Problem

A proportion of those who suffered from COVID-19 infection developed Long COVID, denoting persistent somatic symptoms in those who have recovered from SARS-CoV-2 infection. People from ethnic minority backgrounds in the UK have shouldered a disproportionate burden in the pandemic, and through implicit biases in disparities in health and social care, contribute to a ‘dual stigma’. There is a lack of research synthesising the existing literature on the experiences of Long COVID in ethnic minorities. This review provides a first insight into the lived experiences of COVID post infection and how it impacts health, wellbeing, and health-seeking behaviour among people from ethnic minority backgrounds.

Approach

This review aims to explore the lived experiences of people from ethnic communities living with Long COVID, to better understand the differential impact of Long COVID on people’s health, wellbeing, and socio-economic circumstances. Comprehensive searches of eight databases were conducted between January 1st, 2020, to July 27th, 2021. The start date was selected with the intention of preceding the dates of the first confirmed cases of COVID-19 in the UK such that no studies would be excluded. Systematic literature searchers were performed in MEDLINE, EMBASE, PsycINFO, ASSIA, CINAHLPlus, AMED, and Web of Science, to July 27th, 2021. Furthermore, COVID-19 specific databases were searched: EPPI Centre living systematic map of the evidence, CORD-19, and The World Health Organization COVID-19 Research Database.

Findings

Our main findings are two-fold. First, our findings highlighted the dearth of information on how specific dimensions of ethnicity may affect the mechanisms of differential exposure, vulnerability, and consequences, of Long COVID. Second, from the current evidence base, ethnic minorities with Long COVID reported a range of negative healthcare experiences when accessing health care services. Illness narratives from ethnic minorities reported feelings of disinterest and support from clinicians whom they consulted for their heterogeneous symptoms. One consequence of this has been an increased experience of self-advocacy which in turn helped many to develop resiliency through self-management strategies in light of perceived suboptimal clinician response.

Consequences

Currently, Long COVID research is largely western centric carrying the risk of creating a false impression of a homogenous groups that do not reflect subtle nuances and fluid racial and ethnic identities. Public health intervention research must prioritise inclusion and engagement of ethnic minorities at all stages through community participatory research. Our findings also suggest that ethnic minorities with Long COVID wanted to be listened to, understood, and acknowledged by the doctors they consulted. For doctors to achieve a deeper understanding of people with Long COVID, integrating cultural humility into their daily practice can help to acknowledge the unique elements of individual identity. This encompasses acknowledging patient testimonies, how patients define themselves, validating their experiences, developing partnerships, and practicing self-reflection.