'Physical well-being is our top priority': Healthcare professionals' challenges in supporting psychosocial well-being in stroke services.

BACKGROUND: Following stroke, a sense of well-being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well-being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well-being, and to examine how the practice context influences care practice. METHODS: Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. RESULTS: Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well-being, this could be deprioritised amidst the time-oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. CONCLUSION: Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well-being within their work. This has implications for the well-being of people with stroke, and the well-being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well-being work remains other to the 'core' work of stroke, and what needs to be considered if stroke services are to better support people's well-being. PATIENT OR PUBLIC CONTRIBUTIONS: People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research.

Personhood as projection: the value of multiple conceptions of personhood for understanding the dehumanisation of people living with dementia.

We examine the concept of personhood in relation to people living with dementia and implications for the humanity of care, drawing on a body of ethnographic work. Much debate has searched for an adequate account of the person for these purposes. Broad contrasts can be made between accounts focusing on cognition and mental faculties, and accounts focusing on embodied and relational aspects of the person. Some have suggested the concept of the person is critical for good care; others suggest the vexed debates mean that the concept should be abandoned. We argue instead that the competing accounts illuminate the very tensions in personhood which are manifest for all of us, but especially for people living with dementia, and argue that our account has explanatory power in shedding light on how precisely dehumanisation and constraints on agency may arise for people living with dementia, and for staff, within an institutional context.

Presentation of the clothed self on the hospital ward: an ethnographic account of perceptual attention and implications for the personhood of people living with dementia.

This study contributes to our understanding of the 'medical gaze' and its impact on the ways in which people living with dementia experience care during a hospital admission. Visual perception has a powerful effect on our emotional and moral reactions to others. One aspect of how we perceive and respond to others is through clothing, which relates strongly to class and social position. Our focus is on exploring the ways in which patient clothing may affect the perceptions and response of others, and self-perception and resulting behaviour. We draw on ethnographic research within acute hospital wards in five hospitals across England and Wales, examining the everyday organisation and delivery of care to people living with dementia. People living with dementia are a significant population who have poor experiences and outcomes of care within the acute setting. Our data suggest that the twin aspects of clothing and appearance-of self-perception, and of perception by others-may be especially important in the fast-paced context of an acute ward environment, where patients living with dementia may be struggling with the impacts of an additional acute medical condition within in a highly timetabled, regimented, and unfamiliar environment of the ward, and where staff perceptions of them may feed into clinical assessments of their condition and subsequent treatment and discharge pathways.

The canary in the coal mine: Continence care for people with dementia in acute hospital wards as a crisis of dehumanization.

Continence is a key moment of care that can tell us about the wider care of people living with dementia within acute hospital wards. The spotlight is currently on the quality of hospital care of older people across the UK, yet concerns persist about their poor treatment, neglect, abuse, and discrimination within this setting. Thus, within hospitals, the care of people living with dementia is both a welfare issue and a human rights issue. The challenge of continence care for people living with dementia can be seen as the 'canary in the coal mine' for the unravelling of dignity within the acute setting. This paper draws on an ethnographic study within five hospitals in England and Wales, selected to represent a range of hospital types, geographies and socio-economic catchments. Observational fieldwork was carried out over 154 days in acute hospitals known to admit large numbers of people living with dementia. This paper starts to fill the gap between theory and data by providing an in-depth ethnographic analysis examining the ways in which treatment as a person is negotiated, achieved or threatened. We examine how the twin assaults on agency of a diagnosis of dementia and of incontinence threaten personhood. The acute threats to this patient group may then act to magnify perils to treatment as a person. Our findings suggest that personal dignity and the social construction of moral personhood are both threatened and maintained in such a setting. We show how empirical ethnographic data can lend weight to, and add detail to, theoretical accounts of moral personhood and dignity.

'Who does this patient belong to?' boundary work and the re/making of (NSTEMI) heart attack patients.

This ethnography within ten English and Welsh hospitals explores the significance of boundary work and the impacts of this work on the quality of care experienced by heart attack patients who have suspected non-ST segment elevation myocardial infarction (NSTEMI) /non-ST elevation acute coronary syndrome. Beginning with the initial identification and prioritisation of patients, boundary work informed negotiations over responsibility for patients, their transfer and admission to different wards, and their access to specific domains in order to receive diagnostic tests and treatment. In order to navigate boundaries successfully and for their clinical needs to be more easily recognised by staff, a patient needed to become a stable boundary object. Ongoing uncertainty in fixing their clinical classification, was a key reason why many NSTEMI patients faltered as boundary objects. Viewing NSTEMI patients as boundary objects helps to articulate the critical and ongoing process of classification and categorisation in the creation and maintenance of boundary objects. We show the essential, but hidden, role of boundary actors in making and re-making patients into boundary objects. Physical location was critical and the parallel processes of exclusion and restriction of boundary object status can lead to marginalisation of some patients and inequalities of care (A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

Kinscapes, timescapes and genescapes: families living with genetic risk.

This article synthesises recent research examining how families live with genetic risk and the processes of genetic decision-making and disclosure among family members who have been or are at risk of transmitting a familial genetic condition. Its aim is to generate substantive theory that can inform our understanding of the interactional processes at work in the distribution of mutual knowledge and awareness of genetic risk in families. The article is structured around three interrelated concepts. Kinscape refers to the constellation of relations and relatedness that are recognised practically; timescape to the multiple temporal frames of social relations and their transformation and genescape to the constellation of knowledge, belief and practice surrounding genetic inheritance. All three concepts are simultaneously natural and cultural. Their intersections create the conditions of kinship and genetics.

Perspectives on peritoneal dialysis at home: implications for the management of a chronic condition. A study protocol.

AIM: This article is a report of a study protocol designed to explore the experience of home peritoneal dialysis from the perspectives of individuals, their families and healthcare professionals in the United Kingdom. BACKGROUND: Peritoneal dialysis is an established life-saving treatment for end-stage renal disease. This daily treatment is undertaken at home, and nurses play a key role in supporting people with their dialysis and monitoring their condition. Although peritoneal dialysis is known to have an impact on peoples' quality of life, few studies have explored peoples' experiences of undertaking this treatment at home, nor investigated their families' and health professionals' perspectives. DESIGN: An ethnographic study is proposed, which will use in-depth interviews and non-participant observations with people who are undertaking peritoneal dialysis at home in the United Kingdom. Family members and healthcare professionals closely involved with these individuals will also be interviewed. The local ethics and governance committees approved this study in November 2010. DISCUSSION: It is anticipated that the study's findings will provide a detailed insight into the impact of peritoneal dialysis on individuals and their families. The findings will inform local strategies and/or interventions that could improve peoples' experiences of undertaking this treatment. Furthermore, the appropriateness of ethnographic methodology to examine individuals' and families' experiences of home treatments will be considered.

Pad cultures: An ethnography of continence care and its consequences for people living with dementia during a hospital admission.

BACKGROUND: There is little research examining how continence care is organised and delivered to people living with dementia across an acute hospital admission, despite the prevalence of this patient population and their vulnerability within these settings. OBJECTIVE: To explore how continence care is delivered to people living with dementia during an acute hospital admission. DESIGN: Ethnographic. SETTING(S): Acute medical units and wards within three hospitals across England and Wales. PARTICIPANTS: People living with dementia and ward staff (registered nurses and care assistants) on participating wards. METHODS: Ethnographic fieldwork collected over a period of 12 months (180 days of non-participant observation) focussing on the organisation and delivery of continence care to people living with dementia. Observations were supported with in situ ethnographic interviews (n = 562) with patients, visitors and staff within the six observed wards. Data collection and analysis drew on the theoretical sampling and constant comparison techniques of grounded theory. RESULTS: The findings comprised of five overall themes: (1) visibility of continence; (2) rationales of continence care; (3) containment and contagion; (4) consequences of continence care and (5) supporting continence. CONCLUSIONS: We introduce the term 'pad cultures' to refer to the established routine use of continence pads in the care of a wider group of people living with dementia (regardless of continence status and independence), with the rationale to provide safeguards, ensure containment and prevent 'accidents' or incontinent episodes. There was an expectation within acute wards that people living with dementia not only wear continence pads but that they also use them.

Understanding how to facilitate continence for people with dementia in acute hospital settings: a mixed methods systematic review and thematic synthesis.

BACKGROUND: People living with dementia (PLWD) are at significant risk of developing urinary and/or faecal incontinence and are also at risk of functional incontinence or being labelled as being incontinent. Despite the growing population of PLWD and importance of continence care, little is known about the appropriate management, organisation, and interactional strategies for PLWD admitted to acute hospitals. This mixed methods systematic review and thematic synthesis sought to identify successful strategies across all care settings that could then be used to inform innovations in continence care for PLWD in the acute hospital setting. METHODS: In phase 1, a scoping search of two electronic databases (MEDLINE and PsycINFO) and a consultation with stakeholders was undertaken. Findings were presented to the project steering group and two priority areas for phase 2 were identified which were communication and individualised care plans. In phase 2, eight databases and relevant UK government and other organisational websites were searched for English language citations from inception to August 2020. Critical appraisal was conducted using the Mixed Methods Appraisal Tool (MMAT Version 11). Thematic synthesis was employed and the strength of synthesised findings for the intervention studies was assessed using the GRADE approach and the confidence in synthesised qualitative and survey findings was assessed using the CERQual approach. RESULTS: In phase 1, 1348 citations were found and 75 included. In phase 2, 6247 citations were found, 14 research studies and 14 policy and guidance documents were included. The quality of studies varied. Material was synthesised into three overarching syntheses which were: communication this is dignified, person-centred and respectful; communication during outpatients apointments and delivering individualised continence care. CONCLUSIONS: Recognising that PLWD are not always able to communicate their continence needs verbally is important. Incorporating interpersonal and communication skills into the context of continence care within training for those working with this patient group is crucial for continence to be maintained during an acute admission. Continence care in the acute setting should be tailored to the individual and be developed in partnership with staff and caregivers. TRIAL REGISTRATION: PROSPERO: CRD42018119495 .

Complexity and accountability: the witches' brew of psychiatric genetics.

This paper examines the role of complexity in descriptions of the aetiology of common psychiatric disorders. While scientists attest to the discovery of an underlying reality of complex inheritance--the so-called 'witches' brew' of genetic and non-genetic factors--we argue that 'complexity' also performs rhetorical work. In our analysis of scientific review papers (1999-2008), we find a relatively stable genre of accountability in which descriptions of complexity appear to neutralize past failures by incorporating different and sometimes competing methodological perspectives. We identify two temporal strategies: retrospective accounting, which reconstructs a history of psychiatric genetics that deals with the recent failures, citing earlier twin studies as proof of the heritability of common psychiatric disorders; and prospective accounting, which engages in the careful reconstruction of expectations by balancing methodological limitations with moderated optimism. Together, these strategies produce a simple-to-complex narrative that belies the ambivalent nature of complexity. We show that the rhetorical construction of complexity in scientific review papers is oriented to bridging disciplinary boundaries, marshalling new resources and reconstructing expectations that justify delays in gene discovery and risk prediction.

Using Signs and Symbols to Label Hospital Patients with a Dementia Diagnosis: Help or Hindrance to Care?

Signs and symbols may be used in attempts to direct attention to particular aspects of patient care and hence affect how the patient is seen. An ethnography within five hospitals across England and Wales explored how everyday technologies are enrolled on acute wards to drive attention to the existence, diagnosis, and needs of people living with dementia within their ageing population. We explore how signs and symbols as everyday "technologies of attention" both produce and maintain the invisibilities of people living with dementia and of the older population within those wards and bring about particular understandings of the classification of dementia. The use and reliance on signs and symbols to aid recognition of people living with dementia may inadvertently lead to misclassification and narrow attention onto particular aspects of bedside care and "symptoms," competing with a wider appreciation of the individual care needs of people living with dementia and restricting expertise of ward staff.

Routines of resistance: An ethnography of the care of people living with dementia in acute hospital wards and its consequences.

BACKGROUND: There is little research examining resistance, refusal or rejection of care by people living with dementia within acute hospital wards despite the prevalence of dementia in adult hospital populations. OBJECTIVES: To explore the ways in which resistance to care manifests within the acute setting and is understood, classified and subsequently managed by ward staff. DESIGN: Ethnography SETTING: Acute medical units and trauma and orthopaedic wards in five NHS hospitals in England and Wales. PARTICIPANTS: People living with dementia and nursing team members (registered nurses and healthcare assistants) on participating wards. METHODS: Observational fieldwork and ethnographic interviews collected over a period of 20 months (155 days of non-participant observation (minimum 2 h, maximum 12 h, total hours: 680) focusing on staff delivering care to patients with dementia. Interviewees included patients, visitors, and staff working on and visiting the ward. Data collection and analysis drew on the theoretical sampling and constant comparison techniques of grounded theory. RESULTS: We found that resistance to care by people living with dementia was a routine and expected part of everyday care in the participating acute hospital settings. The timetabled rounds of the ward (mealtimes, medication rounds, planned personal care) significantly shaped patient and staff experiences and behaviours. These routinized ward cultures typically triggered further patient resistance to bedside care. Institutional timetables, and the high value placed on achieving efficiency and reducing perceived risks to patients, dictated staff priorities, ensuring a focus on the delivery of essential everyday planned care over individual patient need or mood in that moment. Staff were thus trapped into delivering routines of care that triggered patterns of resistance. CONCLUSIONS: Nursing staff struggle to respond to the needs of people living with dementia in acute care settings where the institutional drivers of routines, efficiency and risk reduction are not mediated by clinical leadership within the ward. Cycles of resistance in response to organisationally mandated timetables of care can result in poor care experiences for patients, and emotional and physical burnout for staff. More research is needed into how institutional goals can be better aligned to recognise the needs of a key hospital population: people living with dementia.

Performing stable angina pectoris: an ethnographic study.

Symptoms play a crucial part in the formulation of medical diagnoses, yet the construction and interpretation of symptom narratives is not well understood. The diagnosis of angina is largely based on symptoms, but a substantial minority of patients diagnosed with "non-cardiac" chest pain go on to have a heart attack. In this ethnographic study our aims were to understand: (1) how the patients' accounts are performed or enacted in consultations with doctors; (2) the ways in which ambiguity in the symptom narrative is managed by doctors; and (3) how doctors reach or do not reach a diagnostic decision. We observed 59 consultations of patients in a UK teaching hospital with new onset chest pain who had been referred for a specialist opinion in ambulatory care. We found that patients rarely gave a history that, without further interrogation, satisfied the doctors, who actively restructured the complex narrative until it fitted a diagnostic canon, detaching it from the patient's interpretation and explanation. A minority of doctors asked about chest pain symptoms outside the canon. Re-structuring into the canonical classification was sometimes resisted by patients who contested key concepts, like exertion. Symptom narratives were sometimes unstable, with central features changing on interrogation and re-telling. When translation was required for South Asian patients, doctors considered the history less relevant to the diagnosis. Diagnosis and effective treatment could be enhanced by research on the diagnostic and prognostic value of the terms patients use to describe their symptoms.

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations.

BACKGROUND: There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. OBJECTIVES: To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). DATA SOURCES: We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1; (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11 December 2015, and clinical trial registries [International Standard Randomised Controlled Trial Number (ISRCTN) and clinicaltrials.gov] on 22 and 29 January 2016; and (3) hand-searches of reference lists of relevant systematic reviews from database searches. REVIEW METHODS: The project consisted of four workstreams. (1) We obtained related core outcome sets and work from co-applicants. (2) We systematically reviewed published and ongoing disease modification trials to identify the outcomes used in different domains. We extracted outcomes used in each trial, recording how many used each outcome and with how many participants. We divided outcomes into the domains measured and searched for validation data. (3) We consulted with PPI participants about recommended outcomes. (4) We presented all the synthesised information at a conference attended by the wider body of National Institute for Health Research (NIHR) dementia researchers to reach consensus on a core set of outcomes. RESULTS: We included 149 papers from the 22,918 papers screened, referring to 125 individual trials. Eighty-one outcomes were used across trials, including 72 scales [31 cognitive, 12 activities of daily living (ADLs), 10 global, 16 neuropsychiatric and three quality of life] and nine biological techniques. We consulted with 18 people for PPI. The conference decided that only cognition and biological markers are core measures of disease modification. Cognition should be measured by the Mini Mental State Examination (MMSE) or the Alzheimer's Disease Assessment Scale - Cognitive subscale (ADAS-Cog), and brain changes through structural magnetic resonance imaging (MRI) in a subset of participants. All other domains are important but not core. We recommend using the Neuropsychiatric Inventory for neuropsychiatric symptoms: the Disability Assessment for Dementia for ADLs, the Dementia Quality of Life Measure for quality of life and the Clinical Dementia Rating scale to measure dementia globally. LIMITATIONS: Most of the trials included participants with Alzheimer's disease, so recommendations may not apply to other types of dementia. We did not conduct economic analyses. The PPI consultation was limited to members of the Alzheimer's Society Research Network. CONCLUSIONS: Cognitive outcomes and biological markers form the core outcome set for future disease modification trials, measured by the MMSE or ADAS-Cog, and structural MRI in a subset of participants. FUTURE WORK: We envisage that the core set may be superseded in the future, particularly for other types of dementia. There is a need to develop an algorithm to compare scores on the MMSE and ADAS-Cog. STUDY REGISTRATION: The project was registered with Core Outcome Measures in Effectiveness Trials [ www.comet-initiative.org/studies/details/819?result=true (accessed 7 April 2016)]. The systematic review protocol is registered as PROSPERO CRD42015027346. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations.

BACKGROUND: There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. METHODS AND FINDINGS: We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer's disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer's society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. LIMITATIONS: Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. INTERPRETATION: This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value. TRIAL REGISTRATION: PROSPERO no. CRD42015027346.

Genetic professionals' reports of nondisclosure of genetic risk information within families.

Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about the circumstances under which professionals may have an obligation, or may be permitted, to pass on personal genetic information about their clients but without their consent to other family members. We report findings from the first prospective study investigating the frequency with which genetics professionals become concerned about the failure of clients to pass on such information to their relatives. In all, 12 UK and two Australian regional genetic services reported such cases over 12 months, including details of actions taken by professionals in response to the clients' failure to disclose information. A total of 65 cases of non-disclosure were reported, representing <1% of the genetic clinic consultations in the collaborating centres during the study period. These included 39 cases of the failure of parents not passing full information to their adult offspring, 22 cases where siblings or other relatives were not given information and four cases where information was withheld from partners -- including former and prospective partners. Professionals reported clients' reasons for withholding information as complex, more often citing concern and the desire to shield relatives from distress rather than poor family relationships. In most cases, the professionals took further steps to persuade their clients to make a disclosure but in no instance did the professional force a disclosure without the client's consent.

"Why don't they just tell me straight, why allocate it?" The struggle to make sense of participating in a randomised controlled trial.

Randomised controlled trials are the acknowledged 'gold standard' method of evaluating the effectiveness of treatments, but little is known about how and why patients decide to participate in trials nor how much they understand about trial design. In this study, in-depth, semi-structured interviews were carried out with 33 middle aged and older men with lower urinary tract symptoms related to benign prostatic disease, 22 of whom had consented to participate and 11 refused to take part in a randomised trial. The trial was evaluating the effectiveness of a new technology (laser therapy) compared with standard surgery (transurethral resection of the prostate ) and conservative management (monitoring without active intervention) (the CLasP study). Purposive sampling was used to include participants from different centres, each treatment arm, and at different stages in participation, as well as those indicated to have refused participation. Interviews explored their recall and understanding of trial information, and their reasoning about how they were allocated to a treatment. Data were analysed thematically according to the methods of constant comparison, and by examining each participant's narrative of their experiences. Most participants recalled major aspects of trial design, including the involvement of chance, but the case studies showed that most also held other co-existing (and sometimes contradictory) views about their treatment allocation. The key to understanding their experiences was their engagement in a struggle to understand the trial in the context of their own beliefs, their recall of the study information and their actual experiences of the trial. The outcome of the struggle was the placing of trust in clinicians or the development of distrust. Non-participants made sense of their experiences in similar ways, but gave different reasons for non-participation than indicated by recruiters. This study shows that most eligible patients, whatever their level of knowledge, will struggle to make sense of their participation in randomised trials. The provision of clearer written information or time to discuss the trial with particular individuals might be beneficial, although greater public understanding of trials is also needed.

Including a 'no active intervention' arm in surgical trials is possible: evidence from the CLasP randomised trial.

OBJECTIVES: To examine the impact of including a 'no active intervention' arm (called 'conservative management') in a randomised controlled trial comparing treatments (including surgery) for men with lower urinary tract symptoms related to benign prostatic enlargement. METHODS: Outcomes 7.5 months after randomisation were acceptability of randomisation, overall acceptability of and satisfaction with conservative management, impact on quality of life, perceived need for further treatment and treatment failure (defined a priori). RESULTS: In total, 177 (out of 755) patients refused randomisation, including 31% who did not want surgery and 22% who wanted surgery. Most men randomised to conservative management were willing to undertake it as part of a trial but at the end of the trial they were divided between those who wanted to continue with it and those who expected surgery. At follow-up, 39% of conservative management patients requested surgery, and interference of symptoms with life and an unsuccessful outcome were more commonly reported in this arm. There were no appreciable differences between treatment groups in terms of treatment failures. CONCLUSIONS: Including a 'no active intervention' arm did not appear to have a detrimental effect on patient recruitment or the completion of this trial in the short-term; overall, conservative management was successfully completed by the majority of patients during the trial period, suggesting that researchers need not avoid including a no-intervention arm in surgical trials as long as they take care with its presentation.

Abnormal appearances: inspection, display and the clinic.

We provide an examination of the field of dysmorphology, a clinical speciality that in its current form combines a long history of inspection and display with the identification and representation of associated underlying molecular changes. The recognition and description of abnormal appearances is thus increasingly accompanied by genetic and other molecular investigations. Our analysis draws on our long-term ethnographic engagement with a UK clinical genetics service and the work of two clinical genetics teams within a regional teaching hospital. We document the intersection of genetic science with clinical work to suggest that while molecular testing often identifies the genetic basis for unusual appearances and abnormal development, it does not fully supplant clinical apperception and interpretation. The two modes of knowledge--the clinical and the biomedical--co-exist in the work and the discourse of dysmorphology practice. The contemporary dysmorphology clinic thus encapsulates the epistemological systems of modern medicine, grounded in the clinical gaze and on the classificatory systems of classic nosology. Within such a system of clinical knowledge, the 'monstrous' does not escape the boundaries of knowledge. Monstrous appearances are accommodated and domesticated within the classificatory systems of normal medicine.