Barriers to healthcare access and experiences of stigma: findings from a co-produced Long Covid case-finding study

Background and aim Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them seeking help and could lead to widening health inequalities. This co-produced study with a Community Advisory Board of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. Methods An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care, and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE-ICP Collaboration. Findings Twenty-three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self-doubt among participants, sometimes reinforced by interactions with healthcare professionals. Participants questioned their deservedness of seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting, and conveying knowledge has varied credibility based on the teller’s identity characteristics and/or the level of their interpretive resources. Conclusion We have co-developed recommendations based on the findings. These include early signposting to services, dedicating protected time to listen to people with Long Covid, ...