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

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ∼18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. "Vanguard patients" collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced "rejected" candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was "validated" had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of "co-experting" through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.

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

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ∼18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. “Vanguard patients” collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced “rejected” candidacy(feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was “validated” had more positive experiences;they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of “co-experting” through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.

Health inequalities, ethnic minorities and COVID19: interactive theatre workshop drawing on a qualitative interview study.

BACKGROUND: The COVID19 pandemic revealed and deepened existing inequalities. These were exacerbated by institutional and interpersonal racism and poorly conceived public health messaging. As a result, people from minority ethnic backgrounds in the UK were disproportionately affected. We conducted a creative interdisciplinary session to support interactive reflection and discussion on these inequalities between the actors and the audience, who was comprised of public health scientists and NHS practitioners, to come up with practical ways to address ethnicity-based health inequalities going forward. METHODS: We prepared a 45 min interactive scenario drawing on forum theatre approaches, which are based on the Theatre of the Oppressed: a set of dramatical techniques created by Augusto Boal. To understand what to include the interactive scenario we carried out a workshop built on a narrative interview study with 70 adults who had Covid between March, 2020, and November, 2021. We adopted a maximum variation sampling strategy focusing on people from minority ethnic backgrounds (45 of total sample). Interviews were done remotely and recorded via video or audio. Study participants were invited to tell their story in their own words, alongside semi-structured prompting. After thematic analysis, the research team worked with theatre practitioners from the Performing Medicine company to create scenarios from verbatim interview content. The format allows audience members to watch scenarios and interact directly with actors, giving advice on how to improve the situation. The study was approved by Berkshire Ethics Committee. Informed verbal and written consent were obtained from all participants. FINDINGS: Five themes from analysis explored in the workshop emerged: (1) existing racialised disadvantages that impacted COVID-19 exposure: employment, housing, and caring responsibilities; (2) unequal access to care, welfare, and support; (3) fears about the health-care system regarding quality of care and vaccine safety; (4) perceptions that the media and public health messaging blamed minority ethnic groups for spreading infection; and (5) increases in acts of direct racism. These informed the development of a 45-minute interactive scenario, which will be performed at the 10th UK Public Health Science conference. INTERPRETATION: There is an urgent need to re-evaluate public health messaging and care for people from minority ethnic backgrounds. This theatre workshop will support reflection to refine workshop content for further dissemination. FUNDING: UK Economic and Social Research Council.

Practising in a pandemic: A real time study of primary care practitioners' experience of working through the first year of COVID-19.

This article presents reflections on the lessons learnt from developing and initiating a rapid research project in 4 weeks during the first year of the COVID-19 pandemic. The article highlights the importance of selecting methods appropriate to rapid research, discusses the challenges of data collection in a shifting context, and the importance of the research team being prepared to cede some degree of control over the data collection process. To protect staff and patients and prevent the spread of COVID-19, general practice shifted to remote service delivery and consultations occurred via the telephone or online platforms. In the study, submissions were collected from those working in general practice to capture their experiences of the first year of the COVID-19 pandemic. Participants could choose how to submit their narratives, with some preferring to be interviewed and others contributing self-recorded submissions. This article offers practical reflections in response to the challenges of carrying out rapid research during a pandemic, including the importance of constructing a research team which can respond to the demands of the study, as well as the benefits of an expedited ethical review process. The study highlighted the importance of selecting appropriate methods to facilitate the rapid collection of data. In particular, the authors reflect on the differences between participants' response to interviews, written submissions, and audio diaries. Open approaches to data collection were found to encourage participation and reflexivity and also generated rich narrative accounts. Rapid research has progressed our understanding of general practice's experience of the first year of COVID-19.

A longitudinal qualitative study of the UK general practice workforce experience of COVID-19.

BACKGROUND: The COronaVIrus Disease 2019 (COVID-19) pandemic has led to significant re-organisation of general practice in the United Kingdom and around the world. The general practice workforce has led changes to their services, often dealing with high levels of uncertainty. The way in which many practitioners consult has shifted significantly, and there has been an increase in the number of phone and online consultations. We know very little about how those working in general practice experienced the service reorganisation introduced in the first year of the COVID-19 pandemic. AIM: The aim of this project was to describe the changes in the delivery of general practice in the United Kingdom in the first year of the COVID-19 pandemic. Furthermore, to explore primary care practitioners' and managers' experiences of change within general practice during this time and investigate shifts in perceptions of professional identities. METHOD: We conducted a longitudinal qualitative study that captured narrative accounts from 17 primary care practitioners and managers across England and Scotland. Each participant submitted narrative accounts in the first year of the COVID-19 pandemic using self-recorded or written contributions, or via an interview if preferred. These were analysed using a grounded theory approach, with thematic coding used to construct common themes. FINDINGS: Participants' narratives describe the challenges COVID-19 presented to general practice. Responses mirror the shifts in the pandemic and its management - from an initial sense of autonomy but uncertainty, to a period of stability and patients' increasing frustration. The re-organisation of general practice has affected practitioners' views of their work and their role as clinicians. Participants' narratives were framed profoundly by the importance of their relationships with patients. This analysis of practitioners' and managers' narratives highlights the need for further exploration of how to support the general practice workforce's well-being longer term in a context of increased demand and significant change.