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

Abstract

Background and aimLong Covid can be a stigmatising condition, 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.MethodsAn 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 analysed thematically. This study forms part of the STIMULATE-ICP Collaboration.FindingsTwenty-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.ConclusionWe have developed recommendations based on the findings. These include early signposting to services, dedicating protected time to listen to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma.Patient or Public ContributionThis study was co-produced with a Community Advisory Board (CAB) made up of twenty-three members including healthcare professionals, people with lived experience of Long Covid and other stakeholders.

Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative study

“…Extrinsic factors such as epistemic injustice may be considered analogous to gaslighting, stigma and discrimination experienced by persons with Long COVID [61, 62]. While this concept spans extrinsic (enacted stigma) and intrinsic (self-doubt, internalized stigma), we allocated epistemic injustice collectives as an extrinsic factor noting that intrinsic aspects of epistemic injustice are captured in the attitudes, beliefs, mindset and outlook as part of the ‘living strategies’ in the Framework [62].…”

People from ethnic minorities seeking help for Long Covid: a qualitative study.

“…Participants' accounts of being dismissed, disbelieved, or discredited speaks of epistemic injustice (i.e. not acknowledging or undermining people's knowledge or experiences) 58 when seeking healthcare for Long Covid 59 , especially related to racism and sexism 60 . Key recommendations from the NICE guidelines for Long Covid are to believe, listen to and legitimise people presenting with symptoms indicating Long Covid 4 .…”