Remaking critical care: Place, body work and the materialities of care in the COVID intensive care unit.

In this article, we take forward sociological ways of knowing care-in-practice, in particular work in critical care. To do so, we analyse the experiences of staff working in critical care during the first wave of the COVID-19 pandemic in the UK. This moment of exception throws into sharp relief the ways in which work and place were reconfigured during conditions of pandemic surge, and shows how critical care depends at all times on the co-constitution of place, practices and relations. Our analysis draws on sociological and anthropological work on the material culture of health care and its sensory instantiations. Pursuing this through a study of the experiences of 40 staff across four intensive care units (ICUs) in 2020, we provide an empirical and theoretical elaboration of how place, body work and care are mutually co-constitutive. We argue that the ICU does not exist independently of the constant embodied work of care and place-making which iteratively constitute critical care as a total system of relations.

Turning the gaze: Digital patient feedback and the silent pathology of the NHS.

Online review and rating sites, where patients can leave feedback on their experience of the health-care encounter, are becoming an increasing feature of primary care in the NHS. Previous research has analysed how digital surveillance is re-shaping the clinical gaze, as health-care professionals are subject to increased public monitoring. Here, we draw on an empirical study of 41 GP practice staff to show how the gaze is turning, not simply from the patient to the health-care provider, but additionally to the body politic of the NHS. Drawing on focus group and interview data conducted in five UK practices, we show how discourses of online reviews and ratings are producing new professional subjectivities among health-care professionals and the extent to which the gaze extends not only to individual health-care interactions but to the health-care service writ large. We identify three counter-discourses characterising the evolving ways in which online reviews and ratings are creating new subjects in primary care practices: victimhood, prosumption versus traditional values and taking control. We show how the ways in which staff speak about online feedback are patterned by the social environment in which they work and the constraints of the NHS they encounter on a day-to-day basis.

Wild data: how front-line hospital staff make sense of patients' experiences.

Patient-centred care has become the touchstone of healthcare policy in developed healthcare systems. The ensuing commodification of patients' experiences has resulted in a mass of data but little sense of whether and how such data are used. We sought to understand how front-line staff use patient experience data for quality improvement in the National Health Service (NHS). We conducted a 12-month ethnographic case study evaluation of improvement projects in six NHS hospitals in England in 2016-2017. Drawing on the sociology of everyday life, we show how front-line staff worked with a notion of data as interpersonal and embodied. In addition to consulting organisationally sanctioned forms of data, staff used their own embodied interactions with patients, carers, other staff and the ward environment to shape improvements. The data staff found useful involved face-to-face interaction and dialogue; were visual, emotive, and allowed for immediate action. We draw on de Certeau to re-conceptualise this as 'wild data'. We conclude that patient experience data are relational, and have material, social and affective dimensions, which have been elided in the literature to date. Practice-based theories of the everyday help to envision 'patient experience' not as a disembodied tool of managerialism but as an embedded part of healthcare staff professionalism.

The Pharmaceutical Commons: Sharing and Exclusion in Global Health Drug Development.

In the last decade, the organization of pharmaceutical research on neglected tropical diseases has undergone transformative change. In a context of perceived "market failure," the development of new medicines is increasingly handled by public-private partnerships. This shift toward hybrid organizational models depends on a particular form of exchange: the sharing of proprietary assets in general and of intellectual property rights in particular. This article explores the paradoxical role of private property in this new configuration of global health research and development. Rather than a tool to block potential competitors, proprietary assets function as a lever to attract others into risky collaborative ventures; instead of demarcating public and private domains, the sharing of property rights is used to increase the porosity of that boundary. This reimagination of the value of property is connected to the peculiar timescape of global health drug development, a promissory orientation to the future that takes its clearest form in the centrality of "virtual" business models and the proliferation of strategies of deferral. Drawing on the anthropological literature on inalienable possessions, we reconsider property's traditional exclusionary role and discuss the possibility that the new pharmaceutical "commons" proclaimed by contemporary global health partnerships might be the precursor of future enclosures.

'HIV has a woman's face': vaginal microbicides and a case of ambiguous failure.

The case is a primary unit of knowledge production in the field of HIV research, yet the work that is done to construct cases often goes unremarked. In this paper, the case takes centre stage in an analysis of a set of apparent failures in HIV prevention research, namely a series of clinical trials to test vaginal microbicides. Returning to the genesis of the microbicide concept in the early 1990s, I examine how the discourse of women's empowerment was linked to HIV prevention in a way that mobilized a particular vision of the case, which was both politically and scientifically expedient. Drawing on an in-depth empirical study of one particular trial, I show the success of the case in mobilizing funds and interest in the research, as well its success in accounting for the failure of the pharmaceutical technology. Drawing in alternative scientific accounts of the failure of microbicides, however, a different version of events is indicated, in which what can ultimately be said to have failed is not the technology itself, but the act of casing upon which its testing was founded.

Integrating tuberculosis and HIV services in low- and middle-income countries: a systematic review.

OBJECTIVES: Given the imperative to scale up integrated tuberculosis (TB) and HIV services in settings where both are of major public health importance, we aimed to synthesise knowledge concerning implementation of TB/HIV service integration. METHODS: Systematic review of studies describing a strategy to facilitate TB and HIV service integration, searching 15 bibliographic databases including Medline, Embase and the Cochrane library; and relevant conference abstracts. RESULTS: Sixty-three of 1936 peer-reviewed articles and 70 of 170 abstracts met our inclusion criteria. We identified five models: entry via TB service, with referral for HIV testing and care; entry via TB service, on-site HIV testing, and referral for HIV care; entry via HIV service with referral for TB screening and treatment; entry via HIV service, on-site TB screening, and referral for TB diagnosis and treatment; and TB and HIV services provided at a single facility. Referral-based models are most easily implemented, but referral failure is a key risk. Closer integration requires more staff training and additional infrastructure (e.g. private space for HIV counselling; integrated records). Infection control is a major concern. More integrated models hold potential efficiencies from both provider and user perspective. Most papers report 'outcomes' (e.g. proportion of TB patients tested for HIV); few report downstream 'impacts' such as outcomes of TB treatment or antiretroviral therapy. Very few studies address the perspectives of service users or staff, or costs or cost-effectiveness. CONCLUSIONS: While scaling up integrated services, robust comparisons of the impacts of different models are needed using standardised outcome measures.

Domesticating models: On the contingency of Covid-19 modelling in UK media and policy.

Our article traces the representation of pandemic modelling in UK print media from the emergence of Covid-19 to the early stages of implementing the first UK-wide lockdown in late March 2020. Covid modelling, it is widely assumed, has shaped policy decisions and public responses to the pandemic in unprecedented ways. We analyse how the UK print media has configured modelling as a significant evidence tool in the representation of the pandemic. Interrogating assumptions about infectious disease modelling, we ask why models became the trusted tool of choice for knowing and responding to the Covid pandemic in the UK. Our analysis has yielded four different periods in the evolution of intersecting policy and media frames. Initially, modellers, policymakers and media alike emphasized uncertainty about available data, and hence the speculative character of modelled projections, thus justifying a 'wait and see' approach to government intervention. With growing public pressure for government action, policy and media frames were adjusted to emphasize the importance of timing interventions for best effect, with modelling evidence mobilized to justify inaction. This gave way to a period of crisis, as the press increasingly questioned the reliability of the existing models and policies, leading modellers and policy makers to dramatically revise their projections. Finally, with the imposition of the first UK lockdown, policy and media frames were brought back into alignment with one another, in a process of domestication through which the language of modelling became a basic resource for the discussion of the epidemic. Our epistemological microhistory thus challenges general accounts of the impacts of pandemic modelling and instead emphasizes contingency and interpretative flexibility.

Protocols and participatory democracy in a 'North-South' product development partnership.

Global product development partnerships (PDPs) for new health technologies have become an increasingly important part of the science and development landscape over the past two decades. Polarised positions are adopted by those scrutinising the power and governance of these public-private formations; on the one hand, they are seen as successful social technology innovations, on the other as regressive and imperialistic regimes of neo-colonialism. Answering recent calls for research to examine the actors, governance, context and dynamics of PDPs, this article presents a sociological case study of one particular partnership, the Microbicides Development Programme (MDP). Interviews were conducted with a cross-section of programme staff in the UK and Zambia, and discourses analysed through a Foucauldian lens of governmentality. This article suggests that two tools of government were central to MDP's cohesiveness: institutional discourses of participatory democracy and capacity building and scientific protocols. Through these material-semiotic tools, the scientific community, junior operational researchers and the funder were successfully enrolled into the programme and governed by a central body based in the UK. This article draws on Nikolas Rose's work to discuss these socio-scientific discourses as technologies of government, and provides a non-dualistic account of power and governance in a North-South PDP.

Critical care work during COVID-19: a qualitative study of staff experiences in the UK.

OBJECTIVE: To understand National Health Service (NHS) staff experiences of working in critical care during the first wave of the COVID-19 pandemic in the UK. DESIGN: Qualitative study using semistructured telephone interviews and rapid analysis, interpreted using Baehr's sociological lens of 'communities of fate'. PARTICIPANTS: Forty NHS staff working in critical care, including 21 nurses, 10 doctors and advanced critical care practitioners, 4 allied health professionals, 3 operating department practitioners and 2 ward clerks. Participants were interviewed between August and October 2020; we purposefully sought the experiences of trained and experienced critical care staff and those who were redeployed. SETTING: Four hospitals in the UK. RESULTS: COVID-19 presented staff with a situation of extreme stress, duress and social emergency, leading to a shared set of experiences which we have characterised as a community of fate. This involved not only fear and dread of working in critical care, but also a collective sense of duty and vocation. Caring for patients and families involved changes to usual ways of working, revolving around: reorganisation of space and personnel, personal protective equipment, lack of evidence for treating COVID-19, inability for families to be physically present, and the trauma of witnessing extreme patient acuity and death on a large scale. The stress and isolation of working in critical care during COVID-19 was mitigated by strong teamwork, camaraderie, pride and fulfilment. CONCLUSION: COVID-19 has changed working practices in critical care and profoundly affected staff physically, mentally and emotionally. Attention needs to be paid to the social and organisational conditions in which individuals work, addressing both practical resourcing and the interpersonal dynamics of critical care provision.

Re-framing microbicide acceptability: findings from the MDP301 trial.

Microbicides are most usually conceptualised within a disease prevention framework and studies usually define acceptability in terms of product characteristics, willingness to use and risk reduction. This starting point has led to assumptions about microbicides which, rather than being challenged by empirical studies, have tended to foreclose the data and subsequent conceptual models. Few studies take an emic ('insider') perspective or attempt to understand how microbicides fit into the broader context of women's and men's everyday lives. As part of the integrated social science component of the MDP301 Phase III microbicide trial, in-depth interviews were conducted with female trial participants in South Africa, Zambia, Tanzania and Uganda. Women's experiences of the gel challenge several assumptions that have commonly been reiterated about microbicides. Our analysis suggests that current definitions and conceptual frameworks do not adequately account for the range of meanings that women attribute to gel. Even within the context of a clinical trial, it is possible to obtain a richer, ethnographic and cross-cultural concept of acceptability based on women's practice and emic interpretations. We now need to move beyond limited notions of acceptability and consider how microbicides fit into a more holistic picture of women's and men's sexuality and sexual health.

Men's involvement in the South African family: engendering change in the AIDS era.

The literature on the South African family and its response to the HIV/AIDS epidemic is rife with accounts of men that reflect a deficit model of male involvement. Few acknowledge the historical, economic and social complexities of male involvement in family life. As the South African family undergoes demographic, social and economic transformation there is a need to describe the range of roles played by all household members, including men. This paper examines data collected over two and a half years from a small sample of households affected by HIV/AIDS in rural KwaZulu Natal, South Africa. Non-participant observations were made during outreach visits by research staff to twenty households caring for at least one adult with disease symptoms indicative of TB or AIDS. We find that men are positively involved with their families and households in a wide range of ways. They care for patients and children, financially support immediate and extended family members and are present at home, thereby enabling women to work or support other households. As the qualitative data demonstrate, however, such activities are often not acknowledged. The dominant perception of both female respondents and research assistants continues to be that men are not caring for their families because they are irresponsible and profligate. We consider reasons why this disjuncture exists and how more men might be encouraged to fulfil such roles and activities as their families and households suffer the social and economic impacts of HIV/AIDS.

HIV and dyadic intervention: an interdependence and communal coping analysis.

BACKGROUND: The most common form of HIV transmission in sub-Saharan Africa is heterosexual sex between two partners. While most HIV prevention interventions are aimed at the individual, there is mounting evidence of the feasibility, acceptability, and efficacy of dyadic interventions. However, the mechanisms through which dyadic-level interventions achieve success remain little explored. We address this gap by using Lewis et al's interdependence model of couple communal coping and behaviour change to analyse data from partners participating in an HIV prevention trial in Uganda and Zambia. METHODS AND FINDINGS: We conducted a comparative qualitative study using in-depth interviews. Thirty-three interviews were conducted in total; ten with couples and twenty-three with staff members at the two sites. The Ugandan site recruited a sero-discordant couple cohort and the Zambian site recruited women alone. Spouses' transformation of motivation is strong where couples are recruited and both partners stand to gain considerably by participating in the research; it is weaker where this is not the case. As such, coping mechanisms differ in the two sites; among sero-discordant couples in Uganda, communal coping is evidenced through joint consent to participate, regular couple counselling and workshops, sharing of HIV test results, and strong spousal support for adherence and retention. By contrast, coping at the Zambian site is predominantly left to the individual woman and occurs against a backdrop of mutual mistrust and male disenfranchisement. We discuss these findings in light of practical and ethical considerations of recruiting couples to HIV research. CONCLUSIONS: We argue for the need to consider the broader context within which behaviour change occurs and propose that future dyadic research be situated within the framework of the 'risk environment'.

Critically engaging: integrating the social and the biomedical in international microbicides research.

Randomized controlled trials and critical social theory are known not to be happy bedfellows. Such trials are embedded in a positivist view of the world, seeking definitive answers to testable questions; critical social theory questions the methods by which we deem the world knowable and may consider experiments in the biomedical sciences as social artifacts. Yet both of these epistemologically and methodologically divergent fields offer potentially important advances in HIV research. In this paper, we describe collaboration between social and biomedical researchers on a large, publicly funded programme to develop vaginal microbicides for HIV prevention. In terms of critical engagement, having integrated and qualitative social science components in the protocol meant potentially nesting alternative epistemologies at the heart of the randomized controlled trial. The social science research highlighted the fallibility and fragility of trial data by demonstrating inconsistencies in key behavioural measurements. It also foregrounded the disjuncture between biomedical conceptions of microbicides and the meanings and uses of the study gel in the context of users' everyday lives. These findings were communicated to the clinical and epidemiological members of the team on an ongoing basis via a feedback loop, through which new issues of concern could also be debated and, in theory, data collection adjusted to the changing needs of the programme. Although critical findings were taken on board by the trialists, a hierarchy of evidence nonetheless remained that limited the utility of some social science findings. This was in spite of mutual respect between clinical epidemiologists and social scientists, equal representation in management and coordination bodies, and equity in funding for the different disciplines. We discuss the positive role that social science integrated into an HIV prevention trial can play, but nonetheless highlight tensions that remain where a hierarchy of epistemologies exists alongside competing paradigms and priorities.

Group-based citizenship in the acceptance of indoor residual spraying (IRS) for malaria control in Mozambique.

In 2006, the Mozambican Ministry of Health expanded its existing Indoor Residual Spraying (IRS) programme into Manhiça District in the south of the country. Widespread household coverage is required to have a significant impact on malaria transmission, making acceptability fundamental to success. Between 2006 and 2008 we conducted anthropological research in order to understand acceptability of IRS in the context of the implementation process, policy debates, local and regional politics and historical processes. In the first phase of this qualitative study, conducted between January and April 2006, 73 interviews and 12 focus groups were conducted with key stakeholders from 14 locales in and around the town of Manhiça: householders, community leaders, health care professionals, sprayers, and District officials. Analysis revealed IRS to be broadly acceptable despite very low levels of perceived efficacy and duration of effect. In contrast to previous studies which have linked acceptance to a reduction in mosquitoes, nuisance biting and malaria, we found people's compliance with the programme to be founded on a sense of group-based citizenship. The involvement of local governmental leaders in the intervention appears to have led many to accept spraying as part of their civic duty, as decreed by post-war decentralisation policy in rural areas. We discuss the implications of this 'passive' form of compliance for the acceptability and sustainability of malaria control and other public health programmes.

Assessing the accuracy of adherence and sexual behaviour data in the MDP301 vaginal microbicides trial using a mixed methods and triangulation model.

BACKGROUND: Accurate data on adherence and sexual behaviour are crucial in microbicide (and other HIV-related) research. In the absence of a "gold standard" the collection of such data relies largely on participant self-reporting. The Microbicides Development Programme has developed a mixed method/triangulation model for generating more accurate data on adherence and sexual behaviour. METHODOLOGY/PRINCIPAL FINDINGS: Data were collected from a random subsample of 725 women using structured case record form (CRF) interviews, coital diaries (CD) and in-depth interviews (IDI). Returned used and unused gel applicators were counted and additional data collected through focus group discussions and ethnography. The model is described in detail in a companion paper [1]. When CRF, CD and IDI are compared there is some inconsistency with regard to reporting of sexual behaviour, gel or condom use in more than half. Inaccuracies are least prevalent in the IDI and most prevalent in the CRF, where participants tend to under-report frequency of sex and gel and condom use. Women reported more sex, gel and condom use than their partners. IDI data on adherence match the applicator-return data more closely than the CRF. The main reasons for inaccuracies are participants forgetting, interviewer error, desirability bias, problems with the definition and delineation of key concepts (e.g. "sex act"). Most inaccuracies were unintentional and could be rectified during data collection. CONCLUSIONS/SIGNIFICANCE: The CRF--the main source of self-report data on behaviour and adherence in many studies--was the least accurate with regard to measuring sexual behaviour, gel and condom use. This has important implications for the use of structured questionnaires for the collection of data on sexual behaviour and adherence. Integrating in-depth interviews and triangulation into clinical trials could increase the richness and accuracy of behavioural and adherence data.

A mixed methods and triangulation model for increasing the accuracy of adherence and sexual behaviour data: the Microbicides Development Programme.

BACKGROUND: The collection of accurate data on adherence and sexual behaviour is crucial in microbicide (and other HIV-related) research. In the absence of a "gold standard" the collection of such data relies largely on participant self-reporting. After reviewing available methods, this paper describes a mixed method/triangulation model for generating more accurate data on adherence and sexual behaviour in a multi-centre vaginal microbicide clinical trial. In a companion paper some of the results from this model are presented [1]. METHODOLOGY/PRINCIPAL FINDINGS: Data were collected from a random subsample of 725 women (7.7% of the trial population) using structured interviews, coital diaries, in-depth interviews, counting returned gel applicators, focus group discussions, and ethnography. The core of the model was a customised, semi-structured in-depth interview. There were two levels of triangulation: first, discrepancies between data from the questionnaires, diaries, in-depth interviews and applicator returns were identified, discussed with participants and, to a large extent, resolved; second, results from individual participants were related to more general data emerging from the focus group discussions and ethnography. A democratic and equitable collaboration between clinical trialists and qualitative social scientists facilitated the success of the model, as did the preparatory studies preceding the trial. The process revealed some of the underlying assumptions and routinised practices in "clinical trial culture" that are potentially detrimental to the collection of accurate data, as well as some of the shortcomings of large qualitative studies, and pointed to some potential solutions. CONCLUSIONS/SIGNIFICANCE: The integration of qualitative social science and the use of mixed methods and triangulation in clinical trials are feasible, and can reveal (and resolve) inaccuracies in data on adherence and sensitive behaviours, as well as illuminating aspects of "trial culture" that may also affect data accuracy.

'To help them is to educate them': power and pedagogy in the prevention and treatment of malaria in Tanzania.

OBJECTIVES: Acknowledging that mothers are often the primary caregivers at the household level, malaria control efforts have emphasized educating women in its early recognition. This fails to consider the context in which knowledge will be transformed into action, as women lack decision-making responsibility and financial resources. We examine the knowledge and power dynamics of provider-patient interactions and the implications for malaria treatment of educating mothers during consultations. METHODS: We conducted in-depth interviews in Tanga, Tanzania, with 79 household participants over 2 years to explore knowledge and perceptions of febrile illness, its treatment and prevention. We also interviewed 55 clinicians at government and private healthcare facilities about their patients' knowledge and treatment-seeking behaviour. We analysed our data using a grounded theory approach. RESULTS: Informants had good knowledge of malaria aetiology, symptoms and treatment. Healthcare workers reported that mothers were able to give them sufficient information about their child for accurate diagnosis. However, health staff continued to see mothers who present 'late' as uneducated, intellectually incapable and lazy. Whilst evidence shows that decisions about treatment do not rest with mothers, but with male family members, it is women who continue to be blamed and targeted by health education. CONCLUSIONS: Aggressive didactic teaching methods used by health staff may be disempowering those already equipped with knowledge, yet unable to control treatment decisions within the household. This may lead to further delays in presentation at a healthcare facility. We propose a rethinking of health education that is context-sensitive, acknowledges class and gendered power relations, and targets men as well as women.