Search

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.

BackgroundThere 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.ObjectivesTo explore the ways in which resistance to care manifests within the acute setting and is understood, classified and subsequently managed by ward staff.DesignEthnographySettingAcute medical units and trauma and orthopaedic wards in five NHS hospitals in England and Wales.ParticipantsPeople living with dementia and nursing team members (registered nurses and healthcare assistants) on participating wards.MethodsObservational 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.ResultsWe 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.ConclusionsNursing 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.

This is an open access book chapter. To view the full text of the chapter click on the link below. 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, that reveal the powerful continuities and durability of ward cultures of care, and their impacts on people living with dementia.

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. Philosophical and biomedical perspectives both agree that the ways in which someone is seen is critical to their wellbeing. Empirical work confirms the philosophical claims that attention is an active process, a relationship between the subject and the observer, which changes both of them. How one is seen affects how one sees oneself and studies suggest that this impacts on physical functioning and independence, clinical outcomes, recovery from disability, longevity, and the ‘will to live’. This may be particularly important for older people and people living with dementia, who are a large population within acute wards. We draw on the empirical findings of our 18 month ethnography within 5 hospitals across England and Wales (NIHR HS&DR researcher led funding) to explore the ways in which everyday technologies are enrolled to drive attention to the existence, diagnosis, and needs of people living with dementia at the bedside. Within the acute setting, seeing ‘dementia’ and the person living with dementia and their essential bedside care has been transformed into technical products and routinized task focussed approaches to delivery. We explore the ways in which these everyday technologies both produce and maintain the invisibilities of people living with dementia and bring about particular understandings of the condition. We show the ways in which the use and reliance on technical approaches to perceived problems of attention and ‘seeing’ people living with dementia, instead, narrows attention on particular tasks and ‘symptoms’, which can compete with a wider appreciation of people’s individual care needs and restrict the expertise of ward staff.

Background The acute hospital setting has become a key site of care for people living with dementia. The Department of Health and Social Care recognises that as many as one in four acute hospital beds in the UK will be occupied by a person living with dementia at any given time. However, people living with dementia are a highly vulnerable group within the hospital setting. Following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to understand the role and needs of health-care staff caring for this patient population and to explore what constitutes ‘good care’ for people living with dementia within the acute setting. Objectives The focus of this study was a common but poorly understood phenomenon within the acute setting: refusal and resistance to care. Our research questions were ‘How do ward staff respond to resistance to everyday care by people living with dementia being cared for on acute hospital wards?’ and ‘What is the perspective of patients and their carers?’. Design This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to understand how ward staff responded to the care needs of people living with dementia and to follow the consequences of their actions. Setting This ethnography was carried out on 155 days (over 18 months) in 10 wards within five hospitals across England and Wales, which were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments. Participants In addition to general observations, 155 participants took part directly in this study, contributing to 436 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia. Results We identified high levels of resistance to care among people living with dementia within acute hospital wards. Every person living with dementia observed within an acute hospital ward resisted care at some point during their admission. Limitations Limitations identified included the potential for the Hawthorne or researcher effect to influence data collection and establishing the generalisability of findings. Conclusions Ward staff typically interpreted resistance as a feature of a dementia diagnosis, which overshadowed the person. However, resistance to care was typically a response to ward organisation and delivery of care and was typically rational to that person’s present ontology and perceptions. In response, nurses and health-care assistants used multiple interactional approaches that combined highly repetitive language with a focus on completing essential care on the body, which itself had a focus on the containment and restraint of the person in their bed or at their bedside. These approaches to patient care were a response to resistance but also a trigger for resistance, creating cycles of stress for patients, families and ward staff. The findings have informed the development of simple, no-cost innovations at the interactional and organisational level. A further study is examining continence care for people living with dementia in acute hospital settings. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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 file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. Aims and objectives To explore whether and how spatial aspects of children's hospital wards (single and shared rooms) impact upon family-centred care. Background Family-centred care has been widely adopted in paediatric hospitals internationally. Recent hospital building programmes in many countries have prioritised the provision of single rooms over shared rooms. Limited attention has, however, been paid to the potential impact of spatial aspects of paediatric wards on family-centred care. Design Qualitative, ethnographic. Methods Phase 1; observation within four wards of a specialist children's hospital. Phase 2; interviews with 17 children aged 5–16 years and 60 parents/carers. Sixty nursing and support staff also took part in interviews and focus group discussions. All data were subjected to thematic analysis. Results Two themes emerged from the data analysis: ‘role expectations’ and ‘family–nurse interactions’. The latter theme comprised three subthemes: ‘family support needs’, ‘monitoring children's well-being’ and ‘survey–assess–interact within spatial contexts’. Conclusion Spatial configurations within hospital wards significantly impacted upon the relationships and interactions between children, parents and nurses, which played out differently in single and shared rooms. Increasing the provision of single rooms within wards is therefore likely to directly affect how family-centred care manifests in practice. Relevance to clinical practice Nurses need to be sensitive to the impact of spatial characteristics, and particularly of single and shared rooms, on families’ experiences of children's hospital wards. Nurses’ contribution to and experience of family-centred care can be expected to change significantly when spatial characteristics of wards change and, as is currently the vogue, hospitals maximise the provision of single rather than shared rooms.

Aims The concept of family centred care (FCC) has informed the provision of care to hospitalised children since the late 1980s. However, there is a well acknowledged gap between the principles and practice of FCC. Differences between the expectations of care providers have been demonstrated as has nurses’ reticence to share decision-making and cede control to family members. Family members, in turn, have pointed to the lack of support received from nurses. This paper presents findings from a study which sought to explore the potential for care contracts to support family – enabled hospital care for children. Methods A 10 month, focused ethnographic study was carried out in 2 medical and 2 surgical wards in one Children’s Hospital in the North of England. Data, focusing upon activities of daily living and the administration of oral medication, were generated via observation, interviews and focus group discussion with 144 family members (children aged up to 15 and their parent/s) and 65 nurses and Health Care Assistants. All data were subjected to thematic analysis. Results Although parents generally considered it their ‘duty’ to provide basic care for their children while in hospital, they did not necessarily know what they were ‘allowed’ to do or how they might achieve this. This role confusion was particularly significant during acute, short stay hospitalisations. Nurses recognised the vital role that parents’ play in care provision and considered it their responsibility to control and direct negotiations with family members. Both parents and nurses valued informal aspects of care negotiation and neither considered formal contracts to be the way forward. Conclusions There remains clear evidence of a gap between the principles and practice of FCC, particularly during one-off and short stay hospitalisations, which account for a significant proportion of all admissions. This paper will conclude by suggesting approaches that may enable parents’ participation in their child’s care that could also be, on the basis of our findings, acceptable to nurses.