Understanding the lived experience of Long Covid: A rapid literature review

Long-Covid (LC), as a patient-defined illness, has rapidly emerged as both a medical and social issue since 2020, drawing headlines in the public and global domain. In the UK, people experiencing ongoing symptoms of Covid after the initial infection came together online to try to make sense and gain recognition of their condition. Academic research into LC is constantly evolving and seeks to understand the illness from the perspective of those suffering from it. We conducted a rapid literature review to explores existing studies into LC (up to August 2021), capturing the narratives of people who have adapted to live with LC. The literature largely focuses on providing an initial understanding of LC, how the illness emerged, and the fluctuating symptoms managed by those with LC. Although the literature is predominantly descriptive and has a lack of focus on the ongoing experiences of LC, narratives of making sense of, managing, and living with the illness over time are brought forward. In this briefing paper, we will present such narratives to shed light on the stories of those living with LC, and further to think more theoretically to understand the lived experiences of LC and their impact on the multifaceted aspects of LC patients’ lives

An exploration of loss and identity among people living with Long COVID

Identity loss and (re)construction forms a central debate in sociology of chronic illness. People living with chronic/persistent health conditions are often faced with both a ‘broken’ body and a disrupted self-narrative. The loss of the coherence of ongoing life and identity also lies at the heart of the lived experiences of people living with Long COVID (LC). Drawing upon a qualitative study of 80 people with self-identified LC symptoms in the UK, this paper unveils an insightful picture of how our participants lost and also sought to restore their identity as a multi-dimensional, narratively constructed and embodied entity. We found that, as a complex and still largely underexplored health condition, LC could lead to the compounded loss of not only the physical self but also a profound sense of meaning and self-worth. As reported by our participants, identity loss around LC may arise from ongoing bodily disruptions to daily routines and the lack of support and understanding to legitimise their suffering. They often experienced LC as suppressing and existential loss of meaning and being. Their dynamic responses to LC also highlighted how their longing for a narratively coherent self profoundly shaped the ongoing construction of their identity

Understanding and supporting the long-term effects of COVID-19: A report from the Qualitative Long COVID Research Network in the United Kingdom

This report provides a timely summary about fast-evolving qualitative inquiries into Long COVID (LC) in the UK. Based on a survey conducted within a national qualitative LC (QLC) research network comprising 14 teams from across the UK, we aim to explore how the novel public health challenge of LC is being examined and supported across various care settings and how it is experienced among different demographic groups. Evident in the survey findings is the diverse research foci, participant sampling and methodological approaches in response to the complex and pervasive challenges presented by LC. Whilst the multifaceted impacts, diversified lived experiences and health inequalities of LC have been increasingly illuminated by the studies included in our survey, we have also identified a range of knowledge gaps for future research to address, for example carer and healthcare professionals’ experiences, regional disparity in LC responses and international comparison. Ultimately, on behalf of our research network, we aim to enhance QLC research by pooling our findings and expertise to produce further collaborative research outputs on this topic

An exploration of loss and identity among people living with Long COVID

Identity loss and (re)construction forms a central debate in sociology of chronic illness. People living with chronic/persistent health conditions are often faced with both a ‘broken’ body and a disrupted self-narrative. The loss of the coherence of ongoing life and identity also lies at the heart of the lived experiences of people living with Long COVID (LC). Drawing upon a qualitative study of 80 people with self-identified LC symptoms in the UK, this paper unveils an insightful picture of how our participants lost and also sought to restore their identity as a multi-dimensional, narratively constructed and embodied entity. We found that, as a complex and still largely underexplored health condition, LC could lead to the compounded loss of not only the physical self but also a profound sense of meaning and self-worth. As reported by our participants, identity loss around LC may arise from ongoing bodily disruptions to daily routines and the lack of support and understanding to legitimise their suffering. They often experienced LC as suppressing and existential loss of meaning and being. Their dynamic responses to LC also highlighted how their longing for a narratively coherent self profoundly shaped the ongoing construction of their identity

“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

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

‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID

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

Policy brief: identifying mental health support gaps for people living with Long COVID

Long COVID can be both physically daunting and emotionally laden. We recognise that it is important to support the mental health of people living with Long COVID, alongside medical interventions. This policy briefing draws on 80 interviews conducted between November 2021 - March 2022 with people living with self-identified Long COVID symptoms. This is part of the qualitative workstream of the UCL CONVALESCENCE Long COVID project, which focuses on the lived experience and support for people with Long COVID from varied socio-demographical and geographical backgrounds. In this policy brief, we will highlight increasingly prevalent mental health challenges facing Long COVID communities in the UK. As such, we aim to identify gaps in current policy provision to inform Long COVID care and support in a more holistic manner, as well as to reduce burdens to NHS and public health expenses

A Guide to Long COVID and Mental Health

This guide is intended to:-Support Long COVID patients with mental health resources, tools and techniques that have helped others – though it’s worth remembering that not everything will work for everyone, and anything mentioned in this guide is intended to be used as a recommendation, not enforced prescription-Help families and friends to understand Long COVID and its invisible effects on mental health, and how to start a conversation as an emotional support networt.-Inform universities and places of work on what kind of help and support students and employees with Long COVID might need

Policy brief: identifying mental health support gaps for people living with Long COVID

Long COVID can be both physically daunting and emotionally laden. We recognise that it is important to support the mental health of people living with Long COVID, alongside medical interventions. This policy briefing draws on 80 interviews conducted between November 2021 - March 2022 with people living with self-identified Long COVID symptoms. This is part of the qualitative workstream of the UCL CONVALESCENCE Long COVID project, which focuses on the lived experience and support for people with Long COVID from varied socio-demographical and geographical backgrounds. In this policy brief, we will highlight increasingly prevalent mental health challenges facing Long COVID communities in the UK. As such, we aim to identify gaps in current policy provision to inform Long COVID care and support in a more holistic manner, as well as to reduce burdens to NHS and public health expenses

A Guide to Long COVID and Mental Health

This guide is intended to:-Support Long COVID patients with mental health resources, tools and techniques that have helped others – though it’s worth remembering that not everything will work for everyone, and anything mentioned in this guide is intended to be used as a recommendation, not enforced prescription-Help families and friends to understand Long COVID and its invisible effects on mental health, and how to start a conversation as an emotional support networt.-Inform universities and places of work on what kind of help and support students and employees with Long COVID might need