Lived experience of patients with Long COVID: a qualitative study in the UK

Thomas, Callum; Faghy, Mark A; Owen, Rebecca; Yates, James; Ferraro, Francesco; Bewick, Tom; Haggan, Kate; Ashton, Ruth

doi:10.1136/bmjopen-2022-068481

Cited by 18 publications

(17 citation statements)

References 51 publications

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“…Some findings from this study show similarities with other Long Covid studies. Most notably, the varying range of symptoms experienced, [4][5][6][7][8] the lack of Long Covid awareness among some population groups, 7,43,44 self-doubt regarding Long Covid as a cause for symptoms, 7 symptoms as a barrier to accessing care, 43 problems accessing primary care, 6,10,45 experiences of symptoms being dismissed, 10,46,47 seeking support outside the NHS and making behavioural changes, 6,11,[45][46][47][48] as well as stigma 6,47,48 and discrimination 45 which can all act as barriers to obtaining support, care and treatment for symptoms. Parallels can also be drawn with Ireson et al 46 who suggest the experiences of people living with Long Covid, equate to epistemic injustice.…”

Section: Discussionmentioning

confidence: 99%

“…1,[4][5][6][7][8] These symptoms can have wide ranging negative social impacts that include inhibiting ability to engage in employment and creating financial burdens. 4,[9][10][11] Health inequalities exist between different population groups in England. 12,13 Inequalities were evident prior to COVID-19 but the pandemic has exacerbated them and increased their visibility.…”

Section: Introductionmentioning

confidence: 99%

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

Clutterbuck,

Ramasawmy,

Pantelic

et al. 2024

Preprint

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Clutterbuck,

Ramasawmy,

Pantelic

et al. 2024

Preprint

View full text Add to dashboard Cite

show abstract

“…1,[4][5][6][7][8] It can have wideranging negative social impacts that include inhibiting the ability to engage in employment and creating financial burdens. 4,[9][10][11] Health inequalities exist between different population groups in England. 12,13 Inequalities were evident before COVID-19 but the pandemic has exacerbated them and increased their visibility.…”

Section: Introductionmentioning

confidence: 99%

“…Long Covid can cause varying symptoms and impact on daily life, including, but not limited to, fatigue, breathlessness, headache, cognitive dysfunction, chest pain, muscle/joint pains, cough, disturbed sleep and neuropsychiatric symptoms 1,4–8 . It can have wide‐ranging negative social impacts that include inhibiting the ability to engage in employment and creating financial burdens 4,9–11 …”

Section: Introductionmentioning

confidence: 99%

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case‐finding study

Clutterbuck,

Ramasawmy,

Pantelic

et al. 2024

Health Expectations

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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 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 coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders.

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“…There is a growing body of research on the lived experience of PwLC [18 19] including their self-reported barriers to accessing healthcare [13 14]. Until recently, however [15], none have focussed on community rehabilitation.…”

Section: Introductionmentioning

confidence: 99%

Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish General Practitioners’ and people living with Long COVID: a qualitative study

Cooper,

Duncan,

Hart-Winks

et al. 2023

Preprint

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ObjectivesTo explore the experience of accessing Long COVID community rehabilitation from the perspectives of people with Long COVID and General Practitioners (GPs).DesignQualitative descriptive study employing one-to-one semi-structured virtual interviews analysed using the framework method.SettingFour NHS Scotland territorial health boards.ParticipantsEleven people with Long COVID (1 male, 10 female; aged 40-65 [mean 53], and 13 GPs (5 male, 8 female).ResultsFour key themes were identified: i) The lived experience of Long COVID; ii) The challenges of an emergent and complex chronic condition; iii) Systemic challenges for Long COVID service delivery, and iv) Perceptions and experiences of Long COVID and its management, including rehabilitation.ConclusionsThere are several patient, GP, and service-level barriers to accessing community rehabilitation for Long COVID. There is a need for greater understanding by the public, GPs, and other potential referrers of the role of community rehabilitation professionals in the management of Long COVID. There is also a need for community rehabilitation services to be well promoted and accessible to the people with Long COVID for whom they may be appropriate. Service providers need to consider availability and accessibility of Long COVID rehabilitation and ensure adequate interprofessional communication and collaboration to enhance the experience for people with Long COVID.Strengths and limitations of this studyThis is the first study to explore the issue of accessing Long COVID community rehabilitation from the perspectives of potential service users and referrers in the Scottish context.One researcher conducted all interviews, ensuring consistency in their conductData were analysed and interpreted by multiple researchers, including people with Long COVIDThe small sample size, largely drawn from health boards with a similar approach to Long COVID rehabilitation, limits generalisability

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Lived experience of patients with Long COVID: a qualitative study in the UK

Cited by 18 publications

References 51 publications

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

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

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case‐finding study

Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish General Practitioners’ and people living with Long COVID: a qualitative study

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