“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.

“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.

Publication date: Apr 01, 2024

The COVID-19 pandemic has presented significant challenges to the already over-stretched healthcare system in the United Kingdom (UK). These challenges are particularly pronounced for people living with the novel condition of Long COVID (LC) as they often face persistent and fluctuating symptoms, encountering prolonged uncertainty when seeking medical support. Despite a growing understanding of the healthcare challenges associated with LC, existing qualitative studies have predominantly focused on individual experiences rather than examining the structural aspects of healthcare. A longitudinal qualitative study with 80 participants and 12 healthcare practitioners was conducted in the UK to explore the healthcare experiences of those with LC. In total, 178 interviews (with attrition) were collected across two rounds, from November 2021 to March 2022, and from June to October 2022. Embracing a person-centred framework that recognises and nurtures interconnected individual, relational, and existential needs, we investigated healthcare experiences related to LC across primary, secondary, and specialist integrated care. Using this perspective, we identified three overarching themes. Theme 1 addresses the persistent hurdle of accessing primary care as the initial point of contact for LC healthcare; Theme 2 underscores the complexity of navigating secondary care; and Theme 3 encapsulates the distinctive challenges of developing LC integrated care. These themes are interlinked, as people with LC often had to navigate or struggle between the various systems, with practitioners seeking to collaborate across the breadth of their professional responsibilities. From a person-centred approach, we were able to identify the needs of those affected by lasting LC symptoms and comprehend how health services intricately influence these needs. The focus on healthcare systems also captures the nuanced impact that continuing healthcare struggles can have on people’s identity. As such, our findings provide evidence to inform a more effective and sustainable delivery of person-centred care for people with LC across various healthcare settings and over time.

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Concepts Keywords
Fluctuating Chronic illness
Healthcare Health services
Interviews Healthcare
June Long COVID
Person-centred care


Type Source Name
disease MESH Long COVID
disease MESH COVID-19 pandemic
disease MESH uncertainty
disease VO effective
disease VO time
pathway REACTOME Reproduction
disease MESH Chronic illness
disease VO population
disease MESH infection
disease MESH hair loss
disease IDO symptom
drug DRUGBANK Serine
drug DRUGBANK Esomeprazole
disease MESH emergency
drug DRUGBANK Etoperidone
drug DRUGBANK Methylergometrine
drug DRUGBANK Coenzyme M
drug DRUGBANK Ademetionine
disease IDO process
disease IDO blood
disease MESH blood clot
drug DRUGBANK Tropicamide
disease MESH emotional distress
disease MESH complications
disease MESH strokes
drug DRUGBANK Polyethylene glycol
drug DRUGBANK Tretamine
disease MESH joint pain
disease VO organ
disease VO Equity
disease VO efficient
disease MESH chronic fatigue syndrome
disease VO publication
drug DRUGBANK Clodronic acid
disease MESH end of life
disease VO vaccine

Original Article

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