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Respecting the autonomy and will of people has legitimately led to strictly control the use of constraint in care activities, and promote a care ethics centred around people's needs and wills. But constraint is underlying in any action aiming at making people do something, even with their consent, especially when their ability to evaluate what is best for them may be altered. Ceaselessly present in care, this ordinary, silent constraint should not be only deemed as a necessary evil to be prevented. In contrast with this legally-based view, the paper adopts a pragmatic perspective. Leaning on minute case studies carried out at disable people's homes, the empirical section takes up some key troubling moments between caregivers and patients as trials capable of revealing 'constraint in practice': a situation of uncertainty, doubt, hesitations on the appraisal of what is happening and how to deal with it, banning any clear-cut distinction between technical gestures and moral values. Having outlined the characters of such a 'situational ethics', the authors argue in conclusion that, provided caregivers are never quits with its use, constraint is compatible with care, and assume that care theories could fruitfully support this advocacy to 'maintaining the trouble' in care practices. [ABSTRACT FROM AUTHOR]

Chronic obstructive pulmonary disease ( COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers. [ABSTRACT FROM AUTHOR]

This paper reports the findings of a qualitative study which examines the experience of courtesy stigma among family members of persons with Alzheimer's disease. The results indicate that both primary caregivers and other family members experience stigma; however, a good number of the family members interviewed claimed not to have experienced stigma and did not appear to be concerned about trying to avoid it. Factors or conditions that influenced experience of stigma are outlined. [ABSTRACT FROM AUTHOR]

Many cultures have distinguished between biological and social death, the latter usually occurring some time after the former. More recently social death has been noted to occur before biological death in terminally ill comatose patients. This paper presents the results of an exploratory study which examined the extent to which social death may occur before biological death among elderly people with dementia. One hundred semistructured interviews were conducted with the caregiving relatives of dementia sufferers. Ratings were made of the degree to which carers appeared to believe their dementing dependent was socially (or 'as good as') dead, as well as note taken of behaviour suggesting that they had discounted the sufferer in social terms. In over one third of caregiving relatives there was evidence of both beliefs and behaviours suggesting that a degree of social death had occurred before the sufferer's biological death. Almost all those categorised as behaving towards a sufferer as if they were socially dead expressed beliefs indicating that this was how the sufferer was perceived. However, perceiving a sufferer in ways which could be characterised as socially dead was not necessarily combined with behaving as though they were. Examples of degrees of social death are presented and discussed against the background of increasing numbers of dementia sufferers in modem Western societies. [ABSTRACT FROM AUTHOR]

Companions are individuals who support patients and attend health‐care appointments with them. Several studies characterised companions' participation in broad terms, glossing over the details of how they time and design their actions, and how patients and health‐care practitioners (HCPs) respond to them. This article aims to examine these aspects in detail by using conversation analysis, focusing on actions whereby companions speak on patients' behalf—mentioning delicate aspects of patients' experience (specifically, by alluding to patients' thoughts or feelings about dying). Some studies suggested that these actions undermine patients' autonomy. By contrast, through examination of palliative care consultations in a UK hospice, we found that these interventions are warranted by contextual circumstances: they are either invited by patients or HCPs (through questions or gaze) or volunteered to help with the progression of an activity (e.g. when a patient does not answer an HCP's question). Additionally, all parties collaborate in constructing these companion interventions as temporary departures from an otherwise prevailing normative orientation to patients' right to speak for themselves. The study contributes to the sociology of health and illness by characterising how companions contribute to the ways in which participants coordinate their relative rights and responsibilities, and ultimately their relationships, within health‐care interactions. [ABSTRACT FROM AUTHOR]

The ageing of the population in the US and elsewhere raises important questions about who will provide long-term care for elderly and disabled people. Current projections indicate that home care workers--most of whom are unskilled, untrained and underpaid--will increasingly absorb responsibility for care. While research to date confirms the demanding aspects of the work and the need for improved working conditions, little is known about how home care workers themselves experience and negotiate their labour on a daily basis. This paper attempts to address this gap by examining how home care workers assign meaning to their 'dirty work'. Qualitative interviews suggest that home care workers have a conflicted, often contradictory, relationship to their labour. Workers identify constraints that compromise their ability to do a good job or to experience their work as meaningful, but they also report several rewards that come from caring for dependent adults. I suggest workers draw dignity from these rewards, especially workers who enter home care after fleeing an alienating service job, within or outside the healthcare industry. [ABSTRACT FROM AUTHOR]

The physical, symbolic and experiential aspects of receiving long-term care are examined in this paper using Bourdieu's concepts of habitus and field. We draw on data from an ethnographic study of home care in 16 homes in urban, rural and remote locations in Ontario, Canada. Across all cases, data about domestic and caregiving routines were gathered through observation, interviews with clients and/or the primary family caregiver, interviews with service providers and videotaped tours of the home. Based on the analysis of these data, we argue that a transposition of logics and practices occurred when the domestic and health care fields were superimposed within the spaces of the home. Although all of the care recipients and their family caregivers indicated a strong preference for home care over institutional care, their experiences and practices within their homes were disrupted and reconfigured by the insertion of logics emanating from the healthcare field. These changes were manifested in three main themes: the politics of aesthetics; the maintenance of order and cleanliness; and transcending the limitations of the home. In each of these dimensions, it became apparent that care recipients engaged in improvisatory social practices that reflected their ambiguous and changing habitus or social location. The material spaces of their homes signified, or prompted, altered or changing social placement. [ABSTRACT FROM AUTHOR]

Patient‐centred care has become the touchstone of healthcare policy in developed healthcare systems. The ensuing commodification of patients' experiences has resulted in a mass of data but little sense of whether and how such data are used. We sought to understand how front‐line staff use patient experience data for quality improvement in the National Health Service (NHS). We conducted a 12‐month ethnographic case study evaluation of improvement projects in six NHS hospitals in England in 2016–2017. Drawing on the sociology of everyday life, we show how front‐line staff worked with a notion of data as interpersonal and embodied. In addition to consulting organisationally sanctioned forms of data, staff used their own embodied interactions with patients, carers, other staff and the ward environment to shape improvements. The data staff found useful involved face‐to‐face interaction and dialogue; were visual, emotive, and allowed for immediate action. We draw on de Certeau to re‐conceptualise this as 'wild data'. We conclude that patient experience data are relational, and have material, social and affective dimensions, which have been elided in the literature to date. Practice‐based theories of the everyday help to envision 'patient experience' not as a disembodied tool of managerialism but as an embedded part of healthcare staff professionalism. [ABSTRACT FROM AUTHOR]

The limited existing research on diabetes management and intellectual disabilities ( ID) highlights the need for further exploration of the concept of responsibility. This study explored repertoires of responsibility in accounts of managing diabetes for adults with ID. Fourteen semi-structured interviews were conducted in the UK with seven adults with mild/moderate ID and type 1 or 2 diabetes and seven people who they nominated as supporting their diabetes management. A discursive psychological analysis found that interpretative repertoires relating to competence, independence and accountability were drawn on to construct multiple and sometimes conflicting versions of responsibility. Within these repertoires people with ID were positioned in conflicting ways; as competent, personally responsible, and entitled to independence and choice, but as also lacking competence, dependent on others and incapable of overall accountability. People with ID often took up empowering positions defending against an incompetent identity. Supporters built accounts which negotiated dilemmatic repertoires on the dual responsibilities of empowering adults with ID to self-manage and managing risk to support good and safe care. The implications of available discursive resources and the ways in which they are mobilised are considered. [ABSTRACT FROM AUTHOR]