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

‘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

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

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

A Guide to Long COVID and Mental Health

A Guide to Long COVID and Mental Health 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

Biomarker Driven Antifungal Stewardship (BioDriveAFS) in acute leukaemia—a multi-centre randomised controlled trial to assess clinical and cost effectiveness: a study protocol for a randomised controlled trial

BACKGROUND: Acute leukaemias (AL) are life-threatening blood cancers that can be potentially cured with treatment involving myelosuppressive, multiagent, intensive chemotherapy (IC). However, such treatment is associated with a risk of serious infection, in particular invasive fungal infection (IFI) associated with prolonged neutropenia. Current practice guidelines recommend primary antifungal (AF) prophylaxis to be administered to high-risk patients to reduce IFI incidence. AFs are also used empirically to manage prolonged neutropenic fever. Current strategies lead to substantial overuse of AFs. Galactomannan (GM) and β-D-glucan (BG) biomarkers are also used to diagnose IFI. Combining both biomarkers may enhance the predictability of IFI compared to administering each test alone. Currently, no large-scale randomised controlled trial (RCT) has directly compared a biomarker-based diagnostic screening strategy without AF prophylaxis to AF prophylaxis (without systematic biomarker testing). METHODS: BioDriveAFS is a multicentre, parallel, two-arm RCT of 404 participants from UK NHS Haematology departments. Participants will be allocated on a 1:1 basis to receive either a biomarker-based antifungal stewardship (AFS) strategy, or a prophylactic AF strategy, which includes existing standard of care (SoC). The co-primary outcomes will be AF exposure in the 12-month post randomisation and the patient-reported EQ-5D-5L measured at 12-month post randomisation. Secondary outcomes will include total AF exposure, probable/proven IFI, survival (all-cause mortality and IFI mortality), IFI treatment outcome, AF-associated adverse effects/events/complications, resource use, episodes of neutropenic fever requiring hospital admission or outpatient management, AF resistance in fungi (non-invasive and invasive) and a Desirability of Outcome Ranking. The trial will have an internal pilot phase during the first 9 months. A mixed methods process evaluation will be integrated in parallel to the internal pilot phase and full trial, aiming to robustly assess how the intervention is delivered. Cost-effectiveness analysis will also be performed. DISCUSSION: The BioDriveAFS trial aims to further the knowledge of strategies that will safely optimise AF use through comparison of the clinical and cost-effectiveness of a biomarker-led diagnostic strategy versus prophylactic AF to prevent and manage IFI within acute leukaemia. The evidence generated from the study will help inform global clinical practice and approaches within antifungal stewardship. TRIAL REGISTRATION: ISRCTN11633399. Registered 24/06/2022