Barriers to healthcare access and experiences of stigma

Findings from a coproduced Long Covid case‐finding study

Bibliographic Data

ID19508704
AuthorsDonna Clutterbuck (0000-0001-5622-3076, School of Primary Care Population Sciences and Medical Education University of Southampton Southampton UK, corresponding author), Mel Ramasawmy (0000-0002-4864-8565, Institute of Health Informatics University College London London UK), Marija Pantelic (0000-0002-7239-645X, Brighton and Sussex Medical School University of Sussex Falmer UK), Jasmine Hayer (PPIE Co‐applicant for STIMULATE‐ICP London UK), Fauzia Begum (University Hospitals of Derby and Burton NHS Foundation Trust Derbyshire UK), Mark Faghy (0000-0002-8163-7032, Clinical Exercise and Rehabilitation Research Centre University of Derby Derby UK), Mark A Faghy, Nayab Nasir (Department of Health and Social Care Office for Health Improvement and Disparities UK), Barry Causer (Merton Public Health, Merton Council London UK), Melissa Heightman (0000-0002-7507-2119, University College London Hospitals NHS Trust London UK), Gail Allsopp (0000-0002-3199-9377, Royal College of General Practitioners London UK), Dan Wootton (0000-0002-5903-3881, Clinical Infection Microbiology and Immunology University of Liverpool Liverpool UK), Asad Khan (0000-0002-3232-3328, Manchester University NHS Foundation Trust), M Asad Khan (Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Claire Hastie (0000-0003-2075-2130, Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Monique Jackson (Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Clare Rayner (0000-0002-5167-6903, Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Darren A Brown (0000-0002-4956-243X, Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Emily Parrett (Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Geraint Jones (0000-0003-0551-8768, Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Rowan Philip Clarke (0000-0002-9520-5353), Rowan Clarke (Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Sammie Mcfarland (0009-0005-6549-9249, Member of the Community Advisory Board as person with lived experience of Long Covid Southampton UK), Mark Gabbay (0000-0002-4116-6782, NIHR Applied Research Collaboration North West Coast Liverpool UK), Amitava Banerjee (0000-0001-8741-3411, Institute of Health Informatics University College London London UK), Nisreen A Alwan (0000-0002-4134-8463, School of Primary Care Population Sciences and Medical Education University of Southampton Southampton UK, corresponding author)
Year2024
Volume27
Issue2
Pagese14037-e14037
Publication date2024-04-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.14037
PMID38634418
OpenAlexW4394920441
LanguageEN
Citations received16
References cited43

BACKGROUND AND AIM: Long 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. 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 (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. CONCLUSION: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening 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 CONTRIBUTION: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders

Credibility · Disadvantaged · Disease · Health care · Injustice · Mental health · Political science · Psychiatry · Amyotrophic Lateral Sclerosis Research · Intensive Care Unit Cognitive Disorders · Long-Term Effects of COVID-19 · Medicine · Nursing · Psychology · Social Psychology