Displacement: Critical insights from flood-affected children.

Little is known about how children and young people are affected by evacuation following flooding. Participatory research using creative methods allowed us to elicit flood stories and recovery pathways over time. We found that children's relationships with space and place were severely challenged following evacuation from home. They suffered losses, including loss of agency, friendship networks and familiar space. They experienced distress, anxiety and disillusionment with societal responses. Sustained attention by flood risk and recovery agencies is required to address children's ongoing needs following evacuation. From policymakers recognition is overdue that young people are citizens who already contribute to community flood response and so need to be more explicitly consulted and included in the development of flood risk management.

'It's learned on the job and it depends who you're with.' An observational qualitative study of how internal jugular cannulation is taught and learned.

Internal jugular cannulation may lead to serious complications. Ultrasound guidance is advocated; however, procedural complications remain a concern. Inconsistent education may be in part responsible for this. This study examined how internal jugular cannulation is taught and learned. An ethnographic approach was used in two acute hospitals. Methods comprised interviews, observations and focus groups. An inductive thematic analysis was undertaken. Three themes were identified: apprenticeship, trust and reciprocity. In apprenticeship, a new form of apprenticeship learning, necessitated by the structure of training is described. In trust the strategies by which trainers assess trainees' competence in order to allow them to gain experience is explored. In reciprocity the beneficial influence of trainees is illustrated. This study demonstrates how high-stakes procedures are learned. It provides insights into under-investigated topics such as the use of 'permitted mistakes' to stimulate reflection and the role played by trainees in promoting good practice.

Ovulation monitoring and reproductive heterosex: living the conceptive imperative?

Using biosensors, or devices that provide biological information to users about their own bodies, to map ovulation and time intercourse is a practice of rising significance in economically privileged countries. Based on an ethnographic study of ovulation biosensing, this paper explores the contradictions between device manufacturers' figurations of reproductive heterosex as a natural and pleasurable experience facilitated by fertility monitoring technology, and heterosexual women users' accounts of the pleasures and difficulties of ovulation monitoring and associated sexual encounters. Drawing on Science and Technology Studies and the concept of 'script', we examine the frameworks of action defined by makers of ovulation biosensors and how these are accepted, refused or remade by users. Within the scientific romance configured by manufacturers, reproductive heterosex emerges as exciting and fun, whilst the hard, 'technical' work of conception is done by ovulation technologies. Yet ovulation monitoring is described by many heterosexual women users as an exciting and yet anxiety-producing practice through which they come to know their bodies differently, often through online discussions with other women. Living a 'conceptive imperative', women engaging with ovulation sensing reconfigure their reproductive embodiment and shift their relationship to male partners in ways that reveal heterosexual 'baby-making' as a complex and nuanced practice worthy of critical engagement.

Ethical implications of home telecare for older people: a framework derived from a multisited participative study.

CONTEXT: Telecare and telehealth developments have recently attracted much attention in research and service development contexts, where their evaluation has predominantly concerned effectiveness and efficiency. Their social and ethical implications, in contrast, have received little scrutiny. OBJECTIVE: To develop an ethical framework for telecare systems based on analysis of observations of telecare-in-use and citizens' panel deliberations. DESIGN: Ethnographic study (observation, work shadowing), interviews, older citizens' panels and a participative conference. SETTING: Participants' homes, workplaces and familiar community venues in England, Spain, the Netherlands and Norway 2008-2011. RESULTS: Older respondents expressed concerns that telecare might be used to replace face-to-face/hands-on care to cut costs. Citizens' panels strongly advocated ethical and social questions being considered in tandem with technical and policy developments. Older people are too often excluded from telecare system design, and installation is often wrongly seen as a one-off event. Some systems enhance self-care by increasing self-awareness, while others shift agency away from the older person, introducing new forms of dependency. CONCLUSIONS: Telecare has care limitations; it is not a solution, but a shift in networks of relations and responsibilities. Telecare cannot be meaningfully evaluated as an entity, but rather in the situated relations people and technologies create together. Characteristics of ethical telecare include on-going user/carer engagement in decision making about systems: in-home system evolution with feedback opportunities built into implementation. System design should be horizontal, 'two-way'/interactive rather than vertical or 'one-way'. An ethical framework for telecare has been developed from these conclusions (Table 1).

"Wrong, but useful": negotiating uncertainty in infectious disease modelling.

For infectious disease dynamical models to inform policy for containment of infectious diseases the models must be able to predict; however, it is well recognised that such prediction will never be perfect. Nevertheless, the consensus is that although models are uncertain, some may yet inform effective action. This assumes that the quality of a model can be ascertained in order to evaluate sufficiently model uncertainties, and to decide whether or not, or in what ways or under what conditions, the model should be 'used'. We examined uncertainty in modelling, utilising a range of data: interviews with scientists, policy-makers and advisors, and analysis of policy documents, scientific publications and reports of major inquiries into key livestock epidemics. We show that the discourse of uncertainty in infectious disease models is multi-layered, flexible, contingent, embedded in context and plays a critical role in negotiating model credibility. We argue that usability and stability of a model is an outcome of the negotiation that occurs within the networks and discourses surrounding it. This negotiation employs a range of discursive devices that renders uncertainty in infectious disease modelling a plastic quality that is amenable to 'interpretive flexibility'. The utility of models in the face of uncertainty is a function of this flexibility, the negotiation this allows, and the contexts in which model outputs are framed and interpreted in the decision making process. We contend that rather than being based predominantly on beliefs about quality, the usefulness and authority of a model may at times be primarily based on its functional status within the broad social and political environment in which it acts.

Ageing with telecare: care or coercion in austerity?

In recent years images of independence, active ageing and staying at home have come to characterise a successful old age in western societies. 'Telecare' technologies are heavily promoted to assist ageing-in-place and a nexus of demographic ageing, shrinking healthcare and social care budgets and technological ambition has come to promote the 'telehome' as the solution to the problem of the 'age dependency ratio'. Through the adoption of a range of monitoring and telecare devices, it seems that the normative vision of independence will also be achieved. But with falling incomes and pressure for economies of scale, what kind of independence is experienced in the telehome? In this article we engage with the concepts of 'technogenarians' and 'shared work' to illuminate our analysis of telecare in use. Drawing on European-funded research we argue that home-monitoring based telecare has the potential to coerce older people unless we are able to recognise and respect a range of responses including non-use and 'misuse' in daily practice. We propose that re-imagining the aims of telecare and redesigning systems to allow for creative engagement with technologies and the co-production of care relations would help to avoid the application of coercive forms of care technology in times of austerity.

Policy, practice and decision making for zoonotic disease management: water and Cryptosporidium.

Decision making for zoonotic disease management should be based on many forms of appropriate data and sources of evidence. However, the criteria and timing for policy response and the resulting management decisions are often altered when a disease outbreak occurs and captures full media attention. In the case of waterborne disease, such as the robust protozoa, Cryptosporidium spp, exposure can cause significant human health risks and preventing exposure by maintaining high standards of biological and chemical water quality remains a priority for water companies in the UK. Little has been documented on how knowledge and information is translated between the many stakeholders involved in the management of Cryptosporidium, which is surprising given the different drivers that have shaped management decisions. Such information, coupled with the uncertainties that surround these data is essential for improving future management strategies that minimise disease outbreaks. Here, we examine the interplay between scientific information, the media, and emergent government and company policies to examine these issues using qualitative and quantitative data relating to Cryptosporidium management decisions by a water company in the North West of England. Our results show that political and media influences are powerful drivers of management decisions if fuelled by high profile outbreaks. Furthermore, the strength of the scientific evidence is often constrained by uncertainties in the data, and in the way knowledge is translated between policy levels during established risk management procedures. In particular, under or over-estimating risk during risk assessment procedures together with uncertainty regarding risk factors within the wider environment, was found to restrict the knowledge-base for decision-making in Cryptosporidium management. Our findings highlight some key current and future challenges facing the management of such diseases that are widely applicable to other risk management situations.

Uncertainties in the governance of animal disease: an interdisciplinary framework for analysis.

Uncertainty is an inherent feature of strategies to contain animal disease. In this paper, an interdisciplinary framework for representing strategies of containment, and analysing how uncertainties are embedded and propagated through them, is developed and illustrated. Analysis centres on persistent, periodic and emerging disease threats, with a particular focus on cryptosporidiosis, foot and mouth disease and avian influenza. Uncertainty is shown to be produced at strategic, tactical and operational levels of containment, and across the different arenas of disease prevention, anticipation and alleviation. The paper argues for more critically reflexive assessments of uncertainty in containment policy and practice. An interdisciplinary approach has an important contribution to make, but is absent from current real-world containment policy.

Telecare and older people: who cares where?

'Telecare solutions' are seen as a potential means of addressing the future care needs of ageing societies in Western economies. The development of these remote care systems runs in parallel with policies aimed at 'ageing in place'; and is targeted at supporting the perceived care needs of frail older people within the home. Drawing on ethnographic and deliberative panel data from European Community funded research, we consider how these developments contribute to a reshaping of the place and experience of care for older people. We do so by addressing the ways in which remote care systems can, firstly, act to change the experience of home; and secondly, re-order the place of care-work and responsibilities to care as new actors become enrolled within the care network and existing care-givers take on differing roles and responsibilities. Finally, we consider how this paper contributes to conceptual debates around institution and extitution - that is, the de-territorialisation of the physical structure of the institution and its re-manifestation through new spaces and times that seek to end interior and exterior distinctions.

Animal disease and human trauma: the psychosocial implications of the 2001 UK foot and mouth disease disaster.

The 2001 UK foot and mouth disease (FMD) crisis is commonly understood to have been a nonhuman animal problem, an economic industrial crisis that was resolved after eradication. By using a different lens, a longitudinal ethnographic study of the health and social consequences of the epidemic, the research reported here indicates that 2001 was a human tragedy as well as an animal one. In a diary-based study, it can be seen that life after the FMD crisis was accompanied by distress, feelings of bereavement, fear of a new disaster, loss of trust in authority and systems of control, and the undermining of the value of local knowledge. Diverse groups experienced distress well beyond the farming community. Such distress remained largely invisible to the range of "official" inquiries into the disaster. That an FMD epidemic of the scale of 2001 could happen again in a developed country is a deeply worrying prospect, but it is to be hoped that contingency plans are evolving along with enhanced understanding of the human, animal, and financial cost.

Future patients? Telehealthcare, roles and responsibilities.

Increasing use of information and communication technologies is said to be transforming health care. Telehealthcare enables medical consultations to be conducted between patients and health professionals across different locations. Such technologies imply new relationships between patients and health professionals. This study aimed to understand how policy and practice in relation to telehealthcare suggests new conceptualisations of 'the patient'. In-depth semistructured interviews (n = 38) were conducted with key informants from across the UK, known to have involvement or interest in telehealthcare from a variety of perspectives: health professionals (n = 11), patient advocates (n = 7), telemedicine experts (n = 6), policy-makers (n = 4), administrators (n = 4), researchers (n = 3) and technologists (n = 3). Interviews were conducted either in person or over the telephone, and were audio-recorded. Data were analysed thematically with ongoing cross-validation of data interpretation between members of the research team. The results indicated divergent views about the role of the patient, although accounts of patients becoming 'educated self-managers', taking on a more active role in their healthcare, were predominant. Beliefs about the impact of telehealthcare on patients were focused on perceived 'priorities' such as access, location of services, confidentiality and choice; however, there remains little understanding of the trade-offs that patients are willing to make in the context of technologically mediated health care. The results also highlight ideas around how patients relate to technologies; the extent to which technologies might fragment care and medicine in new or unexpected ways, and participation and absence of patients in decision-making about policies and services. The results of this study have important implications for the ways in which relationships between health professionals and patients are managed in practice, and raise important questions for public participation in service development.

Different public health geographies of the 2001 foot and mouth disease epidemic: 'citizen' versus 'professional' epidemiology.

Recently, there have been calls for health geographers to add critical and theoretical debate to 'post-medical' geographies, whilst at the same time informing 'new' public health strategies (Soc. Sci. Med. 50(9)1273; Area 33(4) (2002) 361). In this paper we reflect on how, alongside 'professional epidemiologies', 'citizen epidemiologies' can have credibility in informing public health policy and practice. We do this by drawing on mixed method and participatory research that used a citizens' panel to articulate the health and social outcomes of the 2001 foot and mouth disease disaster. We consider the difficulties of creating dialogue between on the one hand, time-limited, discrete, theoretical, visible and by implication legitimate, 'professional' knowledge and on the other, ongoing, holistic, experiential and often hidden 'citizen' knowledge of the foot and mouth disease epidemic. Despite significant evidence that in disaster and crisis situations, people need to be actively involved in key 'recovery' decisions (see for example At Risk Natural Hazards, People's Vulnerability, and Disasters, Routledge, London; A New Species of Trouble, Norton, New York), lay accounts, which may in themselves provide valuable evidence about the impact of the disaster, are often ignored. If health geographers are to critically inform 'new' public health policy then we need to consider research approaches that give voice to citizens' understanding of health outcomes as well as those of professionals. If 'new' public health is concerned with the material character of health inequalities, with fostering 'healthy' living and working environments, the promotion of community participation and individual empowerment (Area 33(4) (2002) 361), then we argue that situated, negotiated, everyday geographies of lay epidemiologies can and should inform public health policy.

Access, boundaries and their effects: legitimate participation in anaesthesia.

The distribution of work, knowledge and responsibilities in the delivery of anaesthesia has attained particular significance recently as attempts to meet the demands of the European Working Times Directive intensify existing pressures to reorganise anaesthetic services. Using Lave and Wenger's (1991) notions of 'legitimate peripheral participation' in 'communities of practice' (and Wenger 1998) to analyse ethnographic data of anaesthetic practice we illustrate how work and knowledge are currently configured, and when knowledge may legitimately be taken as the basis for action. The ability to initiate action, to prescribe healthcare interventions, we suggest, is a critical element in the organisation of anaesthetic practices and therefore central to any attempts to reshape the delivery of anaesthetic services.

Communication between anesthesiologists, patients and the anesthesia team: a descriptive study of induction and emergence.

PURPOSE: Although the importance of communication skills in anesthetic practice is increasingly recognized, formal communication skills training has hitherto dealt only with limited aspects of this professional activity. We aimed to document and analyze the informally-learned communication that takes place between anesthesia personnel and patients at induction of and emergence from general anesthesia. METHODS: We adopted an ethnographic approach based principally on observation of anesthesia personnel at work in the operating theatres with subsequent analysis of observation transcripts. RESULTS: We noted three main styles of communication on induction, commonly combined in a single induction. In order of frequency, these were: (1) descriptive, where the anesthesiologists explained to the patient what he/she might expect to feel; (2) functional, which seemed designed to help anesthesiologists maintain physiological stability or assess the changing depth of anesthesia and (3) evocative, which referred to images or metaphors. Although the talk we have described is nominally directed at the patient, it also signifies to other members of the anesthetic team how induction is progressing. The team may also contribute to the communication behaviour depending on the context. Communication on emergence usually focused on establishing that the patient was awake. CONCLUSION: Communication at induction and emergence tends to fall into specific patterns with different emphases but similar functions. This communication work is shared across the anesthetic team. Further work could usefully explore the relationship between communication styles and team performance or indicators of patient safety or well-being.

Psychosocial effects of the 2001 UK foot and mouth disease epidemic in a rural population: qualitative diary based study.

OBJECTIVES: To understand the health and social consequences of the 2001 foot and mouth disease epidemic for a rural population. DESIGN: Longitudinal qualitative analysis. SETTING: North Cumbria, the worst affected area in Britain. SAMPLE: Purposive sample of 54 respondents divided in six demographically balanced rural occupational and population groups. MAIN OUTCOME MEASURES: 3071 weekly diaries contributed over 18 months; 72 semistructured interviews (with the 54 diarists and 18 others); 12 group discussions with diarists RESULTS: The disease epidemic was a human tragedy, not just an animal one. Respondents' reports showed that life after the foot and mouth disease epidemic was accompanied by distress, feelings of bereavement, fear of a new disaster, loss of trust in authority and systems of control, and the undermining of the value of local knowledge. Distress was experienced across diverse groups well beyond the farming community. Many of these effects continued to feature in the diaries throughout the 18 month period. CONCLUSIONS: The use of a rural citizens' panel allowed data capture from a wide spectrum of the rural population and showed that a greater number of workers and residents had traumatic experiences than has previously been reported. Recommendations for future disaster management include joint service reviews of what counts as a disaster, regular NHS and voluntary sector sharing of intelligence, debriefing and peer support for front line workers, increased community involvement in disposal site or disaster management, and wider, more flexible access to regeneration funding and rural health outreach work.

Telecare: perspectives on the changing role of patients and citizens.

We conducted a qualitative study in the UK to examine perspectives about telemedicine, telecare and e-health for the changing roles of patients and citizens. We believe there are important differences between these applications, but for simplicity, the term 'telecare' is used broadly here to include all three. In-depth, semistructured interviews were conducted between September 2002 and May 2004. Participants were 38 key informants from the UK, known to have involvement or interest in telecare: policy-makers, clinicians, technologists, health service managers, researchers and patient advocates. Interviews were conducted either in person or over the telephone, and were audio-recorded with participants' consent. The most frequently cited priorities for patients included accessibility to services, locations of care and quality of care, with some respondents emphasizing the importance of choice for the patient (in terms of appointments and ways of accessing services). However, telecare has implications for patients that go beyond issues of access. A major problem is that 'priorities' are assumed rather than based on an empirical understanding; moreover, for individual patients, preferences for particular forms of service delivery are likely to represent trade-offs between multiple priorities. The findings of the present study confirm that concepts of the patient's rights and responsibilities are changing with the increasing use of new technologies to deliver health care.

Principles for telemedicine and telecare: the perspective of a citizens' panel.

Ten delegates at the conference Voluntarism, Health and Social Care were recruited to form a panel of citizens to debate and offer direction for the future of technologically mediated health care. The panel suggested various principles for the development of telemedicine and telecare, concerning: patients, users and carers, approach to service delivery, research and knowledge, and conditions of use. Many of the principles echoed the founding values of the National Health Service, yet have arguably been absent from both policy pronouncements and the telemedicine literature, which largely views new health technologies themselves as 'value free', i.e. developed untouched by social and political relations. A programme of citizens' panels should be developed so that an informed debate can take place about the development of telemedicine and telecare, to underpin policy and practice.

Safe asleep? Human-machine relations in medical practice.

In the process of anaesthesia the patient must surrender vital functions to the care of clinicians and machines who will act for, and advocate for the patient during the surgical procedure. In this paper, we discuss the practices and knowledge sources that underpin safety in a risky field in which many boundaries are crossed and dissolved. Anaesthetic practice is at the frontier not only of conscious/unconsciousness but is also at the human/machine frontier, where a range of technologies acts as both delegates and intermediaries between patient and practitioner. We are concerned with how practitioners accommodate and manage these shifting boundaries and what kinds of knowledge sources the 'expert' must employ to make decisions. Such sources include clinical, social and electronic which in their various forms demonstrate the hybrid and collective nature of anaesthetised patients. In managing this collective, the expert is one who is able to judge where the boundary lies between what is routine and what is critical in practice, while the junior must judge the personal limits of expertise in practice. In exploring the working of anaesthetic hybrids, we argue that recognising the changing distribution of agency between humans and machines itself illustrates important features of human authorship and expertise.

Towards a wireless patient: chronic illness, scarce care and technological innovation in the United Kingdom.

'Modernization' is a key health policy objective in the UK. It extends across a range of public service delivery and organizational contexts, and also means there are radical changes in perspective on professional behaviour and practice. New information and communications technologies have been seen as one of the key mechanisms by which these changes can be engendered. In particular, massive investment in information technologies promises the rapid distribution and deployment of patient-centred information across internal organizational boundaries. While the National Health Service (NHS) sits on the edge of a pound sterling 6 billion investment in electronic patient records, other technologies find their status as innovative vehicles for professional behaviour change and service delivery in question. In this paper, we consider the ways that telemedicine and telehealthcare systems have been constructed first as a field of technological innovation, and more recently, as management solutions to problems around the distribution of health care. We use NHS responses to chronic illness as a medium for understanding these shifts. In particular, we draw attention to the shifting definitions of 'innovation' and to the ways that these shifts define a move away from notions of technological advance towards management control.

Grounded citizens' juries: a tool for health activism?

Involving the public in decision-making has become a bureaucratic pre-occupation for every health agency in the UK. In this paper we offer an innovative approach for local participation in health decision-making through the development of a 'grounded' citizens' jury. We describe the process of one such jury commissioned by a Primary Care Group in the north-west of England, which was located in an area suffering intractable health inequalities. Twelve local people aged between 17 and 70 were recruited to come together for a week to hear evidence, ask questions and debate what they felt would improve the health and well-being of people living in the area. The jury process acted effectively as a grass-roots health needs assessment and amongst other outcomes, resulted in the setting up of a community health centre run by a board consisting of members of the community (including two jurors) together with local agencies. The methodology described here contrasts with that practiced by what we term 'the consultation industry', which is primarily interested in the use of fixed models to generate the public view as a standardized output, a product, developed to serve the needs of an established policy process, with little interest in effecting change. We outline four principles underpinning our approach: deliberation, integration, sustainability and accountability. We argue that citizens' juries and other consultation initiatives need to be reclaimed from that which merely serves the policy process and become 'grounded', a tool for activism, in which local people are agents in the development of policies affecting their lives.