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1.
BMC Health Serv Res ; 24(1): 406, 2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38561719

ABSTRACT

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.


Subject(s)
COVID-19 , Post-Acute COVID-19 Syndrome , Humans , Pandemics , COVID-19/epidemiology , United Kingdom/epidemiology , Delivery of Health Care , Qualitative Research
2.
Sociol Health Illn ; 46(1): 59-77, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37391994

ABSTRACT

Identity loss and (re)construction forms a central debate in sociology of chronic illness. Living with chronic/persistent health conditions may raise questions about how disruptions can touch upon and further threaten the very roots of existence, by which people reflexively perceive a coherent and stable sense of 'being-in-the-world'. Whilst medical sociologists have shown interest in 'existential loss' in chronic illness, this question remains largely underexplored. Adopting a qualitative study on Long COVID (LC) as an example, this article illuminates existential identity loss as a deeply painful experience of losing body as a fundamental medium to retain continuity and consistency of one's narratively constructed identity. Interviews with 80 LC sufferers in the UK revealed that living with persistent and often uncertain symptoms and disruptions can cause the loss of biographical resources and resilience, making it difficult to reflexively understand their own being within the world. Their dynamic responses to LC also highlighted how sufferers' longing for a narratively coherent self can profoundly shape the ongoing construction of their identity in chronic health conditions. These insights into the complicated and often hard-to-express existential pain of identity loss can also nurture more holistic understandings of and support for LC and chronic illness more broadly.


Subject(s)
COVID-19 , Post-Acute COVID-19 Syndrome , Humans , Existentialism , Chronic Disease , Qualitative Research , Pain
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