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

Wandering the Wards

"Wandering the Wards provides a detailed and unflinching ethnographic examination of life within the contemporary hospital. It reveals the institutional and ward cultures that inform the organisation and delivery of everyday care for one of the largest populations within them: people living with dementia who require urgent unscheduled hospital care. Drawing on five years of research embedded in acute wards in the UK, the authors follow people living with dementia through their admission, shadowing hospital staff as they interact with them during and across shifts. In a major contribution to the tradition of hospital ethnography, this book provides a valuable analysis of the organisation and delivery of routine care and everyday interactions at the bedside, which reveal the powerful continuities and durability of ward cultures of care and their impacts on people living with dementia.

Patient perspectives of participation in a randomised controlled trial.

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How child protection’s ‘investigative turn’ impacts on poor and deprived communities

In recent years there have been major changes in responses to children in need with an ‘investigative turn’ because of widening suspicion of abuse and neglect. This turn is located within an increasingly harsh policy context where support services are being hollowed out at the same time as more families are experiencing poverty and its attendant pressures. This article examines these changes in response to need and outlines the ‘investigative turn’ which it is argued results from a broadening of what is considered reasonable cause to suspect significant harm. It combines research data to show that deprived families experience significant levels of child protection investigations questioning the efficacy of this particularly when these families already suffer high levels of need and shame

Random allocation or allocation at random? Patients' perspectives of participation in a randomised controlled trial

Objectives To explore trial participants' understandings of randomisation. Design In this exploratory study, which used qualitative research methods, in-depth, semistructured interviews were carried out with 20 participants from the CLasP randomised controlled trial. Interviews were recorded on audio tape and fully transcribed. Data were analysed by comparing transcripts and describing emergent themes, using a grounded theory approach. Setting The CLasP study comprises three linked multicentre, pragmatic randomised controlled trials evaluating the effectiveness and cost effectiveness of laser therapy, standard surgery, and conservative management for men with lower urinary tract symptoms or urinary retention, or both, related to benign prostatic disease. Subjects 20 participants in the CLasP study were interviewed. Sampling was purposeful: men were included from each of the treatment arms, the two major centres, and at different points in the trial. Interventions and outcome measures Interviews used a checklist of topics to encourage participants to describe their experiences. Narratives concerning randomisation were compared to identify common themes, retaining the context of the discussion to allow detailed interpretation. Results Most participants recalled and described aspects of randomisation, such as the involvement of chance, comparison, and concealed allocation. Many found the concept of randomisation difficult, however, and developed alternative lay explanations to make sense of their experiences. Inaccurate patient information and lay interpretations of common trial terms caused confusion. Conclusions The provision of clear and accurate patient information is important, but this alone will not ensure consistent interpretation of concepts such as randomisation. Patients may need to discuss the purposes of randomisation in order to understand them fully enough to give truly informed consent

'Why don't they tell me straight, why allocate it?' The struggle to make sense of participation 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

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

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

The moral and sentimental work of the clinic: the case of genetic syndromes

This paper reports on the genetics clinic and examines the wider functions it provides for parents who have a child with learning disabilities that may be associated with an underlying genetic cause. It derives from an ethnographic study of one clinical genetics team within a UK clinical genetics service and their clinical caseload, specifically their cases of genetic syndromes associated with dysmorphology, a speciality within clinical genetics. 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. Our analysis of the clinical consultations and subsequent interviews with parents indicate that obtaining a genetic diagnosis and classification of their child’s problems was not the sole function of these consultations. In addition, the clinic provides parents with moral absolution from having ‘caused’ their child’s problems and is an important site for the sentimental and celebratory focus on the child. Thus, the role of the clinical genetics service is not merely to assemble a diagnosis from the available information and to provide a source of expert opinion on the causes of the condition, but to provide reassurance to parents who might otherwise blame themselves (or be blamed by others) for their child’s condition. An important aspect of these consultations was the sentimental work of repairing the child, providing a sphere in which the development and behaviour of the child is discussed in favourable terms, and given assurances of ‘normal’ parenting and family life, often in marked contrast to their experience in the wider public world. Thus, the work of establishing diagnostic categories also allows important moral and sentimental work to be accomplished within the clinic

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