Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy

MacLean, Alice; Hunt, Kate; Brown, Ashley; Dowrick, Anna; Fokkens, Andrea; Grob, Rachel; Law, Susan; Locock, Louise; Marcinow, Michelle; Smith, Lorraine; Urbanowicz, Anna; Verheij, Nientke; Wild, C.

doi:10.1016/j.ssmqr.2022.100207

Cited by 18 publications

(46 citation statements)

References 17 publications

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“…All but two of the included studies were published in 2022 or 2023, yet the complexity of this question remains a concern. Studies defined Long COVID using clinical guidelines and criteria (such as those of the WHO and the UK National Institute for Health and Care Excellence),32 39 42 43 as well as on the basis of self-identification, noting the role of patient advocacy in the naming of Long COVID 33 35–37 40 41 44 45. The term Long COVID was generally used, though studies also acknowledged other labels such as ‘post-COVID syndrome’, ‘Post-Acute Sequelae of COVID-19’ and ‘long haulers’ 30 32–35 38–45.…”

Section: Resultsmentioning

confidence: 99%

“…One study required a formal Long COVID diagnosis from a clinician 45. A handful of studies determined eligibility through self-identification or did not define Long COVID in their reported eligibility criteria 33 37 40 43…”

Section: Resultsmentioning

confidence: 99%

“…Other studies generated qualitative data via electronic health records (n=200)39 and open-ended responses from a larger observational online survey (n=169) 44. Studies used interpretive or descriptive thematic analysis methods, with half of the included studies developing sociologically informed theoretical frameworks 31 33 36 37 39–42…”

Section: Methodsmentioning

confidence: 99%

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Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

Harrison,

Rhodes,

Lancaster

2024

BMJ Open

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ObjectivesTo investigate the lived experiences of Long COVID.DesignCritical interpretive synthesis of qualitative research.Data sourcesPubMed and Web of Science databases were searched on 14 September 2023.Eligibility criteriaOriginal peer-reviewed qualitative studies describing the experiences of Long COVID were eligible for inclusion.Data extraction and synthesisWe used established qualitative synthesis methods to search, screen and manually code the included studies. Critical interpretation methods were used to analyse the data and develop synthetic constructs.Results68 articles were identified in the first phase of sampling, with 16 studies and 879 participants included in the final synthesis. The analysis of these studies was organised into three thematic constructions of Long COVID: (1) the illness, (2) the patient and (3) recovery. Long COVID was diversely characterised across study approaches, designs and findings but was underpinned by shared diagnostic logics, which shaped the identification and measurement of symptoms. The boundaries between different constitutions of Long COVID in qualitative accounts of illness experience were often imprecise. Slippages between different definitions of Long COVID had implications for patient experiences in relation to diagnosis, help-seeking and care, and expectations of recovery.ConclusionsLong COVID is a site of multiple and diverse qualitative interpretation. Accounts of lived experience emphasise the constitutions of illness, patienthood and recovery as situated and emergent. The ongoing context-based negotiation of Long COVID is a defining qualitative feature of the condition. Approaches to researching, diagnosing and developing health interventions must be as adaptive as the varieties of Long COVID lived experience.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

Harrison,

Rhodes,

Lancaster

2024

BMJ Open

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“…10,62 It can result in poor patient experience and may harm progress in understanding the mental health aspects of Long Covid. 63 In the corpus, HCPs both forwarded the overpsychologisation narrative and challenged it. In one example, an HCP challenged the narrative, stating that "Kids with long Covid are treated terribly.…”

Section: Healthcare Professionals and Testimonial Injusticementioning

confidence: 99%

A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People

Connor,

Kranert,

Mckelvie

et al. 2024

Preprint

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Long Covid is the continuation or development of symptoms related to a SARSCoV2 infection. Those with Long Covid may face epistemic injustice, where they are unjustifiably viewed as unreliable evaluators of their own illness experiences. Media articles both reflect and influence perception and subsequently how people regard children and young people (CYP) with Long Covid, and may contribute to epistemic injustice.? We aimed to explore how the UK media characterises Long Covid in CYP through examining three key actor groups: parents, healthcare professionals, and CYP with Long Covid, through the lens of epistemic injustice. A systematic search strategy resulted in the inclusion of 103 UK media articles. We used an adapted corpus-assisted Critical Discourse Analysis in tandem with thematic analysis. Specifically, we utilised search terms to locate concordances of key actor groups. In the corpus, parents highlighted minimisation of Long Covid, barriers to care, and experiences of personal attacks. Mothers were presented as also having Long Covid. Fathers were not mentioned once. Healthcare professionals emphasised the rarity of Long Covid in CYP, avoided pathologizing Long Covid, and overemphasised psychological components. CYP rarely were consulted in media articles but were presented as formerly very able. Manifestations of Long Covid in CYP were validated or invalidated in relation to adults. Media characterisations contributed to epistemic injustice. The disempowering portrayal of parents promote stigma and barriers to care. Healthcare professionals' narratives often contributed to negative healthcare experiences and enacted testimonial injustice, where CYP and parent’s credibility was diminished due to unfair identity prejudice, in their invalidation of Long Covid. Media characterisations reveal and maintain a lack of societal framework for understanding Long Covid in CYP. The findings of this study illustrate the discursive practices employed by journalists that contribute to experiences of epistemic injustice. Based on our findings, we propose recommendations for journalists.

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“…Various theoretical frames have been used to explore both the complexity of dilemmas facing LC healthcare and the potential solutions for these. Researchers have employed lenses such as "candidacy" 15 , "legitimation" 16 , "epistemic injustice"8 and "sick role" 17 to capture both the challenges and the agency of LC sufferers' interactions with healthcare. To enhance the understandings of LC sufferers' needs and how these are supported, undermined and overlooked in healthcare systems, we argue that adopting a person-centred lens is valuable.…”

Section: Introductionmentioning

confidence: 99%

“They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens

Fang,

Baz,

Sheard

et al. 2023

Preprint

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Background Long COVID (LC) has presented significant challenges to healthcare, as people with persistent and fluctuating symptoms often face prolonged uncertainty when seeking medical support. Negative experiences with healthcare systems and trauma from previous health conditions may further compound this uncertainty. Despite an increasingly rich picture of LC healthcare challenges being captured, qualitative studies on LC so far have primarily focused on individual experiences rather than examining the structural aspects of healthcare Methods To better understand the healthcare experiences of those with LC, we conducted a longitudinal qualitative study with 80 participants and over 10 healthcare practitioners in the UK. We collected a total of 178 interviews (with some attrition) across two rounds, from November 2021 to March 2022, and from June to October 2022. Results Adopting a framework of person-centredness that acknowledges and supports interconnected individual, relational, and existential needs in healthcare, we explored LC healthcare experiences across primary, secondary, and specialist integrated care. Through this approach, we identified three overarching themes. Theme 1 focuses on the continued hurdle of accessing primary care as the first point of contact for LC healthcare; theme 2 highlights the complexity of navigating secondary care; and theme 3 captures the unique challenges of propagating LC integrated care. These themes were interconnected, with individuals often bouncing between systems and practitioners cooperating across their remits. Conclusion Using a person-centred lens allowed us to identify the multifaceted needs of LC sufferers and understand how these needs shape individual health and healthcare experiences in a nuanced way, considering their identity as a key source shaping their healthcare needs. The study aimed to explore how person-centred care can be delivered more effectively and sustainably across different healthcare settings and over time to better meet the needs of LC sufferers.

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Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy

Cited by 18 publications

References 17 publications

Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People

“They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens

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