Privileges, and Permissions: Theorising Intersectionality and Cultures of Control in the Care of People Living With Dementia in Acute Hospital Settings.

A longstanding body of public enquiries and research identifies people living with dementia experience systemic inequalities within hospital settings, concluding a focus on improving care cultures is required. Drawing on a 3-year multi-sited hospital ethnography, this paper examines everyday cultures of care in NHS acute hospital wards to interrogate how ethnicity, gender and social class intersects to shape the care of people living with dementia. Drawing on Collins' concept of intersectionality and the relational nature of power, the analysis reveals that while cared for by diverse teams of healthcare professionals, a patients' age, ethnicity, gender and social class, as interconnected categories, influences the tightening of ward rules for some people living with dementia and the granting of significant privileges for others.

'Becoming restrained': Conceptualising restrictive practices in the care of people living with dementia in acute hospital settings.

The use of restrictive practices within health and social care has attracted policy and practice attention, predominantly focusing on children and young people with mental health conditions, learning disabilities and autism. However, despite growing appreciation of the need to improve care quality for people living with dementia (PLWD), the potentially routine use of restrictive practices in their care has received little attention. PLWD are at significant risk of experiencing restrictive practices during unscheduled acute hospital admissions.

'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.

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.

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.

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.

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.

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.

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.

'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.

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.

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.

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).

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.

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.

Treading carefully: a qualitative ethnographic study of the clinical, social and educational uses of exercise ECG in evaluating stable chest pain.

Objective: To examine functions of the exercise ECG in the light of the recent National Institute for Health and Clinical Excellence guidelines recommending that it should not be used for the diagnosis or exclusion of stable angina.

Design: Qualitative ethnographic study based on interviews and observations of clinical practice.

Setting: 3 rapid access chest pain clinics in England.

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.

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.

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.

Does it matter if clinicians recruiting for a trial don't understand what the trial is really about? Qualitative study of surgeons' experiences of participation in a pragmatic multi-centre RCT.

Background: Qualitative methods are increasingly used to study the process of clinical trials and patients understanding of the rationale for trials, randomisation and reasons for taking part or refusing. Patients' understandings are inevitably influenced by the recruiting clinician's understanding of the trial, yet relatively little qualitative work has explored clinicians' perceptions and understandings of trials. This study interviewed surgeons shortly after the multi-centre, pragmatic RCT in which they had participated had been completed.

Dysmorphology and the spectacle of the clinic.

Dysmorphology is the medical study of abnormal forms in the human and is concerned with the identification and classification of a variety of congenital malformations. Such diagnostic work rests on the inspection of images of affected individuals. Based on physical appearance individuals are classified in terms of a wide range of conditions, often with 'exotic' nomenclatures.

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.