| Title: |
Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study |
| Authors: |
Clutterbuck, D; Ramasawmy, M; Pantelic, M; Hayer, J; Begum, F; Faghy, M; Nasir, N; Causer, B; Heightman, M; Allsopp, G; Wootton, D; Khan, MA; Hastie, C; Jackson, M; Rayner, C; Brown, D; Parrett, E; Jones, G; Clarke, R; Mcfarland, S; Gabbay, M; Banerjee, A; Alwan, NA |
| Publisher Information: |
Wiley Open Access |
| Publication Year: |
2025 |
| Collection: |
Oxford University Research Archive (ORA) |
| Description: |
Background and aimLong Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) 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 were 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 (HCPs). Participants questioned their deservedness in 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 the 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 codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with ... |
| Document Type: |
article in journal/newspaper |
| Language: |
English |
| Relation: |
https://doi.org/10.1111/hex.14037 |
| DOI: |
10.1111/hex.14037 |
| Availability: |
https://doi.org/10.1111/hex.14037; https://ora.ox.ac.uk/objects/uuid:72ede806-b0c6-4e84-b2ae-09c24a972e38 |
| Rights: |
info:eu-repo/semantics/openAccess ; CC Attribution (CC BY) |
| Accession Number: |
edsbas.666A10FB |
| Database: |
BASE |