Young adults' experiences of biographical retrogression whilst living with long COVID.

During the early years (2020-2021) of the COVID-19 pandemic, relatively little attention focused on experiences of people with long-lasting symptoms, particularly young adults who were commonly understood to be invulnerable to serious effects of the virus. Drawing on narrative interviews with 15 adults in their twenties and living in the UK when they became ill with long COVID, we explore contextual factors which made their long COVID illness experience, and the wholescale disruption to their lives, challenging. We propose that existing adaptations of the concept of biographical disruption are problematic for this group, and instead suggest that 'biographical retrogression' may more accurately reflect these young adults' experiences. For many of these young adults, their illness occurred at a crucial stage in forming or solidifying (presumed) adult trajectories. Secondly, the recency of long COVID did not allow for comparison with an existing 'grand narrative' of recovery, so the future course of their illness was not just unknown for them as individuals; there was no prognostic map against which to assess their symptoms. Thirdly, the lives of people with long COVID have been disrupted in the context of global societal disruption by the same virus, rendering their experiences both topical yet invisible.

The double invisibility of Long Covid in children.

The Covid-19 pandemic has been dominated by discussions of mild and short-lasting cases or acutely serious or lethal forms of the disease; less attention has been paid to long-term Covid-19 symptoms ('Long Covid'), particularly in children. This analysis of the experiences of children and adolescents with Long Covid, and those of their parents/caregivers, argues that children with Long Covid encounter a 'double invisibility' due to the condition's limited social currency and their status as the youngest members of society. We draw on 39 narrative interviews about children's and adolescents' experiences, conducted in 2021-2022 in the United Kingdom. The occurrence of Long Covid in children challenges key aspects of a dominant pandemic narrative, some of which have persisted from the early stages of the pandemic into 2023. Analysis of our qualitative interviews demonstrates that participant experiences were shaped and undermined by the convergence of three elements of the dominant pandemic narrative: that Covid-19 is mild, and everyone recovers; that children are not badly affected by Covid-19; and that worst of the pandemic was essentially 'over' as early as 2021/2022. In the face of these characterisations of Covid-19 experience, young people and their families reported significant additional challenges in making the illness experiences of children and adolescents visible, and thus in gaining appropriate support from medical and educational professionals. We interpret this in relation to 'social currency' - the extent to which an illness elicits understanding and acceptance by wider society. Children and adolescents with Long Covid struggled to signal the severity of their condition and elicit care in the manner expected for other debilitating illnesses. This was exacerbated by assumptions and stereotypes about unwell children and adolescents, and their parents, and questioning of their candidacy as reliable, trustworthy patients.

Impact of Long Covid on the school experiences of children and young people: a qualitative study.

OBJECTIVES: To explore the impact of Long Covid (LC) on the school experiences of children and young people (CYP). DESIGN: Qualitative study using narrative interviews. PARTICIPANTS: 22 CYP (aged 10-18 years, 15 female) with LC and 15 parents/caregivers (13 female) of CYP (aged 5-18 years) with LC. SETTING: Interviews were conducted between October 2021 and July 2022 via online video call or telephone. Recruitment routes included social media, LC support groups, clinicians, community groups and snowballing. RESULTS: Three key findings were identified. Finding 1: Going to school is a valued part of CYP's lives and participants viewed educational attainment as important for their future trajectories. Returning to school full time was highlighted as a key part of regaining 'normal life'. Finding 2: Attending school (in-person or online) with LC is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives. Finding 3: School responses to CYP with LC were reported to be mixed and hampered by difficulties communicating with healthcare professionals during the pandemic and a lack of awareness of LC among healthcare and education professionals. Participants viewed supportive school responses as staff believing, understanding and taking them seriously, alongside schools offering tailored and flexible adaptations which allowed engagement with school while limiting any deterioration of symptoms. CONCLUSIONS: This study describes how LC affects the school experiences of CYP and generates recommendations for supportive school responses alongside supportive healthcare professionals. Further research could explore the approaches that facilitate a successful return to school for CYP with LC and investigate education professionals' perspectives on support they require to positively engage with returning pupils.

'My cousin said to me . . .' Patients' use of third-party references to facilitate shared decision-making during naturally occurring primary care consultations.

In this paper, we explore the ways in which patients invoke third parties to gain decision-making influence in clinical consultations. The patients' role in decision-making processes is often overlooked, and this interactional practice has rarely been systematically studied. Through a contextual narrative exploration of 42 naturally occurring consultations between patients (aged 22-84) and general practitioners (GPs) in England, we seek to fill this gap. By exploring how and why patients invoke third parties during discussions about medical treatments, who they refer to, what kind of knowledge their referents possess, and how GPs respond, our main aim is to capture the functions and implications of this interactional practice in relation to decision-making processes. Patients refer to third parties during decision-making processes in most of the consultations, usually to argue for and against certain treatment options, and the GPs recognise these utterances as pro-and-contra arguments. This enables patients to counter the GPs' professional knowledge through various knowledge-sources and encourage the GPs to target their specific concerns. By attributing arguments to third parties, patients claim decision-making influence without threatening the GPs' authority and expertise, which their disadvantaged epistemic position demands. Thereby, patients become able to negotiate their role and their epistemic position, to influence the agenda-setting, and to take part in the decision-making process, without being directly confrontational. Invoking third parties is a non-confrontational way of proposing and opposing treatment options that might facilitate successful patient participation in decision-making processes, and so limit the risk of patients being wronged in their capacity as knowers.

'It feels like my metabolism has shut down'. Negotiating interactional roles and epistemic positions in a primary care consultation.

INTRODUCTION: Our aim is to explore the ways in which a patient and a general practitioner (GP) negotiate knowledge claims stemming from different epistemic domains while dealing with a mismatch between experiential and biomedical knowledge during the clinical consultation. We interpret their interaction in relation to the sociocultural context in which their negotiation is embedded and identify factors facilitating their successful negotiation (a medical error is avoided). METHODS: Based on a narrative analysis of a verbatim transcript of a complete naturally occurring primary care consultation, we explore the moment-to-moment unfolding of talk between the patient and the GP (two women). FINDINGS: The patient experiences symptoms of what she interprets as a thyroid condition, and indirectly asks for medication. She presents her case by drawing on experiential knowledge ('it feels like my metabolism has shut down') and biomedical knowledge (while suggesting a diagnosis and a diagnostic test). The GP informs her that her thyroid blood tests are normal and uses biomedical knowledge to explain why she turns down the patient's request. This stages a potential conflict between the patient's embodied experiential knowledge and the doctor's biomedical knowledge. However, during their encounter, the patient and the GP manage to co-construct the patient's illness story and make shared decisions about further actions. CONCLUSION: The transition from potential conflict to consensus is a result of the mutual efforts of two parties: a patient who persistently claims experiential as well as biomedical knowledge while at the same time deferring to the GP's professional knowledge, and a GP who maintains her epistemic authority while also acknowledging the patient's experiential and biomedical knowledge. PATIENT AND PUBLIC CONTRIBUTION: Our empirical data are sourced from a data archive and patients were not involved in the design or conduct of the study, but our study is based on a naturally occurring clinical consultation with a patient.

"I'm not the doctor; I'm just the patient": Patient agency and shared decision-making in naturally occurring primary care consultations.

OBJECTIVES: To explore interactional processes in which clinical decisions are made in situ during medical consultations, particularly the ways in which patients show agency in decision-making processes by proposing and opposing actions, and which normative dimensions and role-expectations their engagement entail. METHODS: Narrative analysis of verbatim transcripts of 22 naturally occurring consultations, sourced from a corpus of 212 consultations between general practitioners and patients in England. After thematically coding the whole dataset, we selected 22 consultations with particularly engaged patients for in-depth analysis. RESULTS: Patients oppose further actions more often than they propose actions, and they oppose more directly than they propose. When they explain why they propose and oppose something, they reveal their values. Patients' role-performance changes throughout the consultations. CONCLUSION: Assertive patients claim - and probably also achieve - most influence when they oppose actions directly and elaborate why. Patients display ambiguous role-expectations. In final concluding stages of decision-making processes, patients usually defer to GPs' authority. PRACTICE IMPLICATIONS: Clinicians should be attentive to the ways in which patients want to engage in decision-making throughout the whole consultation, with awareness of normative dimensions of both process and content, and the ways in which patient's actions are constrained by their institutional position.

Negotiating uncertainty in clinical encounters: A narrative exploration of naturally occurring primary care consultations.

Based on a narrative analysis of 20 naturally occurring clinical consultations between general practitioners and patients in England, sourced from the One in a million data archive, we explore how they conceptualize and negotiate medical and existential uncertainty. To capture the interactional element, which is often overlooked, three consultations receive special attention. While exploring the ongoing dynamics of the moment-to-moment realization of negotiations, we relate their actions to the institutionalized positions of doctor and patient. Situating their negotiations in the sociocultural context in which their interaction is embedded reveals how consultations unfold as a result of communication between two different positions in a normatively structured system. When uncertainty prevails, both patients and GPs mainly conceptualize uncertainty indirectly. By conceptualizing uncertainty indirectly and in a depersonalized manner, GPs manage to safeguard against clinical errors without compromising their authority and credibility. Contrary to medical uncertainty, which is continuously discussed, existential uncertainty usually recedes in the background. However, as our consultations unfold it becomes evident that medical and existential dimensions of uncertainty are inextricably linked. By acknowledging that clinical uncertainty is not only an epistemic concern but also an existential one, existential aspects may usefully rise to the surface.

Modes of Interaction in Naturally Occurring Medical Encounters With General Practitioners: The "One in a Million" Study.

In this article, we qualitatively explore the manner and style in which medical encounters between patients and general practitioners (GPs) are mutually conducted, as exhibited in situ in 10 consultations sourced from the One in a Million: Primary Care Consultations Archive in England. Our main objectives are to identify interactional modes, to develop a classification of these modes, and to uncover how modes emerge and shift both within and between consultations. Deploying an interactional perspective and a thematic and narrative analysis of consultation transcripts, we identified five distinctive interactional modes: question and answer (Q&A) mode, lecture mode, probabilistic mode, competition mode, and narrative mode. Most modes are GP-led. Mode shifts within consultations generally map on to the chronology of the medical encounter. Patient-led narrative modes are initiated by patients themselves, which demonstrates agency. Our classification of modes derives from complete naturally occurring consultations, covering a wide range of symptoms, and may have general applicability.

Pathways, practices and architectures: Containing antimicrobial resistance in the cystic fibrosis clinic.

Antimicrobial resistance and the adaptation of microbial life to antibiotics are recognised as a major healthcare challenge. Whereas most social science engagement with antimicrobial resistance has focussed on aspects of 'behaviour' (prescribing, antibiotic usage, patient 'compliance', etc.), this article instead explores antimicrobial resistance in the context of building design and healthcare architecture, focussing on the layout, design and ritual practices of three cystic fibrosis outpatient clinics. Cystic fibrosis is a life-threatening multi-system genetic condition, often characterised by frequent respiratory infections and antibiotic treatment. Preventing antimicrobial resistance and cross-infection in cystic fibrosis increasingly depends on the spatiotemporal isolation of both people and pathogens. Our research aims to bring to the fore the role of the built environment exploring how containment and segregation are varyingly performed in interaction with material design, focussing on three core themes. These include, first, aspects of flow, movement and the spatiotemporal choreography of cystic fibrosis care. Second, the management of waiting and the materiality of the waiting room is a recurrent concern in our fieldwork. Finally, we take up the question of air, the intangibility of airborne risks and their material mitigation in the cystic fibrosis clinic.

The coughing body: etiquettes, techniques, sonographies and spaces.

With newfound relevance in the context of Covid-19, we focus on the coughing body, building on an in-depth qualitative study of three UK lung infection clinics treating people with cystic fibrosis. Conceptually we take our cue from Norbert Elias and the way something as physiologically fundamental as coughing becomes the focus of etiquette and technique, touching also on themes central to Mary Douglas' anthropology of pollution. This is explored through four themes. First, we show how coughing becomes a matter of biopolitical citizenship expressed through etiquettes that also displace pollution anxieties to surroundings. Second, coughing is a question of being assisted to cough through the mediation of professional skills, interventions and devices. Third, coughing is seen to be central to the sonographic soundscape of the healthcare environment whereby people learn to recognise (and sometimes misrecognise) each other through the 'sound' of the cough. Finally, coughing properly can be seen to have both a 'time and a place' including the retreat of the cough from public space into risky confined spaces. Our conclusion speculates on the way these insights shed light on aspects of life that, until the Covid-19 pandemic, lay largely hidden.

Caring through distancing: Spatial boundaries and proximities in the cystic fibrosis clinic.

This paper re-examines relations between proximity, distance and care, focusing on practices of 'distancing' in the cystic fibrosis (CF) clinic. While care is often thought of in terms of proximity, literature on 'landscapes of care' highlights the potential for 'care at a distance'. We extend this literature to examine practices of social distancing, specifically the act of maintaining a 'space between' bodies in communal areas - a practice currently brought to the fore by the COVID-19 pandemic. Using the CF clinic as a case study, we examine how distancing can be understood as an emplaced practice of care, shaped by - and shaping - architectures and materialities in particular contexts. We explore these issues drawing on data from Pathways, practices and architectures: containing antimicrobial resistance in the cystic fibrosis clinic, a UK AHRC funded study (AH/R002037/1) examining practices in three cystic fibrosis clinics using visual and ethnographic methods. Clinical staff practices of maintaining distancing were often regarded by patients as 'care-ful', part of personalised 'care in place', embroiling a wider care assemblage including ancillary staff, materialities and architectures. Patients also actively participate in distancing as an 'ethic of care', using strategies of 'holding back' and 'looking out' in confined spaces. Yet our findings also highlight tensions between care, proximity and distance in circulation spaces and communal areas, including transient spaces where the assemblage of care breaks down. The article concludes by considering wider implications for healthcare design and for the COVID-19 pandemic.

Air care: an 'aerography' of breath, buildings and bugs in the cystic fibrosis clinic.

With significant relevance to the Covid-19 pandemic, this paper contributes to emerging 'aerographic' research on the socio-materialities of air and breath, based on an in-depth empirical study of three hospital-based lung infection clinics treating people with cystic fibrosis. We begin by outlining the changing place of atmosphere in hospital design from the pre-antibiotic period and into the present. We then turn to the first of three aerographic themes where air becomes a matter of grasping and visualising otherwise invisible airborne infections. This includes imagining patients located within bodily spheres or 'cloud bodies', conceptually anchored in Irigaray's thoughts on the 'forgetting of the air' and Sloterdijk's immunitary 'spherology' of the body. Our second theme explores the material politics of air, air conditioning, window design and the way competing 'air regimes' come into conflict with each other at the interface of buildings, bodies and the biotic. Our final theme attends to the 'cost of air', the aero-economic problem of atmospheric scarcity within modern high-rise, deep-density healthcare architectures.

Materializing architecture for social care: Brick walls and compromises in design for later life.

This article reports on an ethnography of architectural projects for later life social care in the UK. Informed by recent debates in material studies and "materialities of care" we offer an analysis of a care home project that is sensitive to architectural materials that are not normally associated with care and well-being. Although the care home design project we focus on in this article was never built, we found that design discussions relating to a curved brick wall and bricks more generally were significant to its architectural "making". The curved wall and the bricks were used by the architects to encode quality and values of care into their design. This was explicit in the design narrative that was core to a successful tender submitted by a consortium comprising architects, developers, contractors, and a care provider to a local authority who commissioned the care home. However, as the project developed, initial consensus for the design features fractured. Using a materialized analysis, we document the tussles generated by the curved wall and the bricks and argue that mundane building materials can be important to, and yet marginalized within, the relations inherent to an "architectural care assemblage." During the design process we saw how decisions about materials are contentious and they act as a catalyst of negotiations that compromise "materialities of care."

Affecting care: Maggie's Centres and the orchestration of architectural atmospheres.

This article presents research on the architecture of Maggie's Centres, a series of buildings for those with cancer, their families and friends. In particular, we explore the way in which their architectural atmospheres are spoken of by architects who have designed individual Maggie's Centres, in interviews with staff members and volunteers in the buildings and in focus groups with visitors to their sites. We bring together qualitative research from two separate projects, and present findings from interviews, across the UK and internationally, with 66 visitors, 22 staff members and 7 architects of Maggie's Centres. How our research participants discussed the atmospheres of their Maggie's Centres is broken down into an analysis of, respectively, how building materials are used in these buildings; how colour and light are experienced in the buildings, and how the shape of the buildings in themselves affect the ways in which people use the spaces. These separate aspects of the buildings combine to become what can be described as the generators of architectural atmospheres. We discuss how architects, staff members, volunteers and visitors translated their intuition of intangible atmospheres into a recognition of architectural qualities, and linked these to questions of care. Maggie's Centres, we argue, are emotionally charged buildings that shape the ways in which care is staged, practiced and experienced in everyday ways, through the orchestration of architectural atmospheres. We use the example of Maggie's Centres as a comparison with how social scientists have characterised the design of mainstream hospital settings, in order to draw out the implications for questions of healing and recovery from illness, and how buildings may hold the potential to affect care.

Substance use, sleep and intervention design: insights from qualitative data.

Background: Alcohol and other drug use is associated with poor sleep quality and quantity, but there is limited qualitative research exploring substance users' experiences of sleep and few psychosocial sleep interventions for them. Aim: To inform the development of psychosocial interventions to improve sleep amongst people reporting drug/alcohol problems. Method: Qualitative data were collected during a sleep survey. Of the 549 drug/alcohol users completing the survey, 188 (34%) provided additional information about their sleep using a free text box. Responses were analysed via Iterative Categorisation. Findings were reviewed with reference to the Behaviour Change Wheel (BCW). Results: All data were categorised inductively under five headings: (i) sleep quality; (ii) nature of sleep problems; (iii) sleep and substances; (iv) factors improving sleep quality; (v) factors undermining sleep quality. Substance use undermined sleep, but poor sleep often persisted after substance use had ceased. Sleep problems were diverse; as were the causes of, and strategies for dealing with, those problems. Causes and strategies had biological, psychological, social and environmental roots. Conclusions: The BCW facilitated the identification of intervention components that might improve the sleep of people who use substances. These components relate to education, training, enablement, modelling, service provision, guidelines and environment.

Envisioning bodies and architectures of care: Reflections on competition designs for older people.

Architects shape future dwellings and built environments in ways that are critical for aging bodies. This article explores how assumptions about aging bodies are made manifest in architectural plans and designs. By analysing entries for an international student competition Caring for Older People (2009), we illustrate the ways in which aged bodies were conceived by future architectural professionals. Through analysing the architectural plans, we can discern the students' expectations and assumptions about aging bodies and embodiment through their use of and reference to spaces, places and things. We analyse the visual and discursive strategies by which aged bodies were represented variously as frail, dependent, healthy, technologically engaged and socially situated in domestic and community settings, and also how architects inscribed ideas about care and embodiment into their proposals. Through our analysis of these data we also attend to the non-representational ways in which design and spatiality may be crucial to the fabrication of embodied practices, atmospheres and affects. We end by reflecting on how configurations and ideologies of care can be reproduced through architectural spaces, and conclude that a dialogue between architecture and sociology has the potential to transform concepts of aging, embodiment and care.

'Essentially it's just a lot of bedrooms': architectural design, prescribed personalisation and the construction of care homes for later life.

This article draws on ethnographic data from a UK Economic and Social Research Council (ESRC) funded study called 'Buildings in the Making'. The project aims to open up the black box of architectural work to explore what happens between the commissioning of architectural projects through to the construction of buildings, and seeks to understand how ideas about care for later life are operationalised into designs. Drawing on recent scholarship on 'materialities of care' and 'practising architectures', which emphasise the salience of material objects for understanding the politics and practices of care, we focus here on 'beds'. References to 'beds' were ubiquitous throughout our data, and we analyse their varied uses and imaginaries as a 'way in' to understanding the embedded nature of architectural work. Four themes emerged: 'commissioning architectures and the commodification of beds'; 'adjusting architectures and socio-spatial inequalities of beds'; 'prescribing architectures and person-centred care beds'; and 'phenomenological architectures and inhabiting beds'. We offer the concept prescribed personalisation to capture how practising architectures come to reconcile the multiple tensions of commodification and the codification of person centred care, in ways that might mitigate phenomenological and serendipitous qualities of life and living in care settings during later life.

Conceptualising 'materialities of care': making visible mundane material culture in health and social care contexts.

'Materialities of care' is outlined as a heuristic device for making visible the mundane and often unnoticed aspects of material culture within health and social care contexts, and exploring interrelations between materials and care in practice. Three analytic strands inherent to the concept are delineated: spatialities of care, temporalities of care and practices of care. These interconnecting themes span the articles in this special issue. The articles explore material practice across a range of clinical and non-clinical spaces, including hospitals, hospices, care homes, museums, domestic spaces, and community spaces such as shops and tenement stairwells. The collection addresses fleeting moments of care, as well as choreographed routines that order bodies and materials. Throughout there is a focus on practice, and relations between materials and care as ongoing, emergent and processual. We conclude by reflecting on methodological approaches for examining 'materialities of care', and offer some thoughts as to how this analytic approach might be applied to future research within the sociology of health and illness.

Development and early validation of a patient-reported outcome measure to assess sleep amongst people experiencing problems with alcohol or other drugs.

Study Objectives: To develop a patient-reported outcome measure to assess sleep amongst people experiencing problems with alcohol or other drugs. Methods: Item development included secondary analyses of qualitative interviews with drug or alcohol users in residential treatment, a review of validated sleep measures, focus groups with drug or alcohol users in residential treatment, and feedback from drug or alcohol users recruited from community and residential settings. An initial version of the measure was completed by 549 current and former drug or alcohol users (442 in person and 107 online). Analyses comprised classical test theory methods, exploratory and confirmatory factor analysis, measurement invariance assessment, and item response theory (IRT). Results: The initial measure (30 items) had good content and face validity and was named the Substance Use Sleep Scale (SUSS) by addiction service users. After seven items were removed due to low item-factor loadings, two factors were retained and labeled: "Mind and Body Sleep Problems" (14 items) and "Substance-Related Sleep Problems" (nine items). Measurement invariance was confirmed with respect to gender, age, and administration format. IRT (information) and classical test theory (internal consistency and stability) indicated measure reliability. Standard parametric and nonparametric techniques supported convergent and discriminant validity. Conclusions: SUSS is an easy-to-complete patient-reported outcome measure of sleep for people with drug or alcohol problems. It can be used by those concerned about their own sleep, and by treatment providers and researchers seeking to better understand, assess, and potentially treat sleep difficulties amongst this population. Further validity testing with larger and more diverse samples is now required.

Sleep waves and recovery from drug and alcohol dependence: Towards a rhythm analysis of sleep in residential treatment.

This paper reports on a study of sleep amongst men and women who are living in residential rehabilitation centres in the UK and who are receiving support for their recovery from addiction to alcohol and other forms of substance use. Conceptually and methodologically, the paper draws on the work of the French sociologist Lefebvre and, in particular, his rhythmanalysis. We argue that this approach offers a useful way of exploring sleep in terms of biological, experiential, temporal, spatial and social rhythms. It also has the potential to facilitate interdisciplinary dialogue. Empirical data comprising qualitative interviews with 28 individuals, sleep diaries, and actigraphy reports (which measure movement as a proxy for sleep) are examined in combination to generate insights into the challenges associated with sleep in recovery from substance misuse. We examine how sleep in recovery involves an alignment of the spatiotemporal rhythms of rehabilitation and the multiple embodied rhythms of individuals. Institutionalised routines reproduce and impose ideas of day/night sleep cycles which are presumed to accord with 'natural' circadian rhythms. Although study participants very much want to achieve these 'natural hegemonies' of sleep, alignment of individual and institutional rhythms is difficult to achieve. We develop the notion of 'sleep waves' as an analytic to capture the multifaceted elements of sleep and to argue that sleep waves recur but are also shaped by complex networks of rhythms, rituals and routines. Sleep waves can become relatively stabilised in rehabilitation settings, but the anticipation of moving on disturbs rhythms and generates anxieties which can affect recovery.