Home care nursing practice for older persons with heart failure living at home.

AIMS AND OBJECTIVES: To enhance knowledge of how older people with heart failure, living at home, manage their illness with the support of their family caregivers and home care nursing services. BACKGROUND: Heart failure monitoring and self-care have been important means of reducing the serious impact of heart failure. Drawing on theories of practice as enacted and conceptualising service users and their family caregivers as active, the idea of attunement was used to explore how home care nurses work in supporting them. DESIGN: Ethnographic case study. METHOD: Data collection involved home visits and interviews (10 home care users, 10 caregivers, five home care team leaders). Data were field-notes and transcribed interviews. Themes were deductively developed from the findings, informed by the theoretical background, using content analysis. The COREQ checklist was used. FINDINGS: Three themes were developed from the data: (1) Practices of attunement in relations, (2) Becoming among difficulties and (3) Off track-difficult to attune around self-care. CONCLUSIONS: The findings reflect the complexity of heart failure monitoring at home, showing how, in addition to self-care measures, users are supported by an array of informal and formal care. The caregiving situation is shaped by relations among participants and involves making oneself available to the situation. We suggest a stance of attunement for home care nurses, which demands tact and calls for interest, engagement and openness. RELEVANCE TO CLINICAL PRACTICE: Study findings caution against limiting heart failure monitoring to circumscribed tasks, instead calling for a holistic understanding of what may be helpful for users. Home care nurses need time to attune with users living with heart failure and their caregivers to prevent exacerbations and promote well-being. NO PATIENT OR PUBLIC CONTRIBUTION: Although patients were not formally involved in study design ethnography favours their voice.

'Sand in the works?' Infrastructural affordances and life with dementia in the community.

The social health of people living with dementia is a more recent addition to the dementia research agenda; to date conceptions of the problem and solutions have relied on underdeveloped theorisations of sociality and social inclusion. In this article, using a material-semiotic approach to care practices and infrastructure, we use an ethnographic case study of one family of a person living with dementia using a day programme and home care supports over a period of 9 months, to examine how infrastructural arrangements provide particular affordances for social relatedness for people living with dementia in the community. The aim of the analysis is to consider how the infrastructural affordances created by the organisation of care may create spatially bounded lives and limit the subject positions available for people living with dementia and their families. It is these narrowed positions of dwelling that we argue may be the necessary starting place for thinking about the social health of people living with dementia and the solutions that might be helpful for them.

Problematising assumptions about 'centredness' in patient and family centred care research in acute care settings.

Over the last two decades significant efforts have been made to implement patient and family 'centred' care as both a practical and moral imperative for adult acute care delivery. Although many resources have been developed and adopted by institutions, research suggests persistent and diverse barriers to implementing and achieving patient and family 'centred' care in adult acute care practice settings. These issues in implementation suggest re-examining the nature of 'centredness' in care may be useful. A structured problematisation method, as outlined by Alvesson and Sandberg, is utilised to identify and analyse assumptions about the central notions of 'centring' that inform patient and family centred care intervention research. From our analysis, we highlight three predominant areas within 'centring' intervention research that may benefit from rethinking: Vitruvian spatiality, democratising care, and 'centring' positioned as primarily a problem and accomplishment for nursing. As a challenge to these assumptions, we argue for the adoption of theoretical lenses that 'de-centre' individual actors to better account for complex relations among multiple actors, both human and nonhuman, which work to involve patients and families in care practices.

The significance of overlooked objects: Materiality and care at home for people with dementia.

An increase in the number of older people with dementia is currently a trend around the world. In low and middle countries, effective public health services are not yet well-developed, and family care-givers may be overwhelmed by the requirements of care. This paper has two purposes: to share findings from an ethnographic study about family dementia care practices in Brazil and to draw attention to the significance of the materiality of care practices in the family context. The study was conducted in Belo Horizonte, Brazil. We describe the care trajectory of one family and, analysing data using the insights of Actor Network Theory, show the significance of objects in a networked relation of care. In particular, we show how incontinence products such as adult diapers assume different positions in the network, acting as either mediator or intermediary of care in relation to other elements of the network composed of family members and their living situation, the person with dementia herself, the doctor, and Brazilian health policies. Although the diaper is often seen as an ordinary object for care providers, its participation in a care network shapes relations, activating conflict, financial constraint, and disciplining the body of the person with dementia.

Bearing witness in nursing practice: More than a moral obligation?

In this paper, we explore the concept of bearing witness in nursing practice. We examine the description of bearing witness in the nursing literature, particularly that offered by William Cody who suggests that bearing witness results in the limited moral obligation of "true presence." We then turn to Lorraine Code's work on testimony, drawing parallels between the concepts of testimony and bearing witness. Code suggests that receiving testimony results in a responsibility to respond, and that this is an ethico-political obligation. We discuss these ideas in relation to a Canadian exemplar of witnessing the Truth and Reconciliation Commission of Canada's work to understand and address the historical injustices done to Indigenous peoples in Canada. Here, we focus on the Commission's definition of witnessing and highlight the experience of Shelagh Rogers who served as an honorary witness. As an outcome of our analysis, we suggest that bearing witness in nursing practice is most usefully conceptualized as both a moral and a political obligation. Implications for nursing practice are suggested, including first, the need to critically examine our own understandings of power and privilege in order to authentically bear witness and avoid being complicit in injustice, and second, the concomitant responsibility to take action to challenge injustice once we have borne witness to it.

Nursing with care: a meditation in three voices (in memoriam John S. Drummond).

This paper is a written version of a talk given at the 19th International Philosophy of Nursing conference to honour the contributions of Dr. John S. Drummond, nurse and philosopher, to an ongoing and collective project we could call 'thinking nursing'. Over the course of his career, John Drummond published a series of essays, building on his reading of the works of continental philosophers such as Nietzsche, Lyotard or Deleuze, that draw us to nursing as a matter of concern, and that through their incisive analyses, help us to pay attention to the changes that are going on with nursing now. Though this essay began as a way to mark the death of John Drummond, and to pay tribute to his work, we also find that our return to his texts is like other experiences of return - the pleasure of experiencing something anew, as if for the first time.

Caregiving for the Elderly Person: Discourses Embedded in the Brazilian Practical Guide for the Caregiver.

It is estimated that in 2025, Brazil will have the sixth largest elderly population in the world. Beyond the economic consequences of this projection, this changing demographic portends significant changes in the social realm. The aim of this study was to review and consider a range of government documents, developed during the past thirty years and directed toward elderly Brazilian citizens, to explore the ways that caregivers of older persons are positioned in daily care practices through the discourses such documents deploy. The analysis draws on Foucault's genealogical approach, and begins with a review of the historicity of policies, regulations, and legislation related to older people, followed by an analysis of the discourses embedded in the Practical Guide for the Caregiver, a document created by the Brazilian Ministry of Health to provide guidance to informal caregivers in the actual provision of care to elders. The analysis shows that throughout the Guide, caregivers are portrayed as multifaceted subjects; yet at the same time, three primary positionings for the caregiver and her or his work are emphasized: the almost-angel, the almost-healthcare professional, and the almost-household professional.

The 'right' place to care for older people: home or institution?

In 2008, the Minister of Health for Iceland issued a new regulation intended to govern assessment practices related to placement in nursing homes. One of the aims of the regulation was to ensure that those with the most severe need would have priority. This would be achieved, in part, by requiring older people to exhaust all available community-based service options before an assessment for placement would even take place. The new regulation was received with some hostility and criticism on the part of older people and their relatives, who described the changed expectations as 'abandonment' by the authorities. We present our analysis of these changes by examining how older people and families are reconfigured through the new policy and argue that this 'new' practice of de-institutionalization is underpinned by a shifting epistemic and normative context that is working to create a new identity and a different way of life in advanced age in Iceland. The analysis has implications for other nations as well, as much policy related to older people is broadly informed by this idea that 'home is best', that is, the idea that more care simply needs to happen outside of institutional settings.

Power and practices: questions concerning the legislation of health professions in Brazil.

Developments in professional practice can be related to ongoing changes in relations of power among professionals, which often lead to changes in the boundaries of practices. The differing contexts of practices also influence these changing relations among health professionals. Legislation governing professional practice also differs from country to country. In Brazil, over the past 12 years, in a climate of deep disagreement, a new law to regulate medical practice has been discussed. It was sanctioned, or made into law, but with some notable changes, in July 2013. Of interest to us in this paper are the ways the proposed legislation, by setting out the boundaries and scope of medical practice, 'interfered' in the practices of other health professions, undermining many 'independent' practices that have developed over time. However, even taking into account the multiple routes through which practices are established and developed, the role of legislation that seems able to contradict and deny the historical realities of multiple, intersecting practices should be critically interrogated. In this paper, we use the theoretical resources of poststructuralist thinking to explore gaps, ambiguities, and power relations implicit in the discourses that constituted this law. We argue that although the new law can be understood as a social and political device that will interfere in the organization of other health professions' practices, such legislation is only part of what constitutes change in a consolidated professional practice. And while it is important to understand the effects of such legislation, healthcare practices are also realized or 'made real' through ongoing relations of knowledge and power, including, as we will see in this case, activities of resistance. The problem, then, is to understand the practical arrangements, including legislation, traditions and routines, values and knowledge that come to shape the practices of nursing in a particular context.

The day program multiple: Noncoherence and ontological politics.

Globally, day programs are increasingly proposed in policy as one way to address the support needs of people living at home with dementia and their families. Day programs represent a kind of space that can meet multiple interests and ideologies concerned with sustaining care at home for people living with dementia. In this paper, we draw on findings from an ethnographic study of how day programs work as care in the community for people living with dementia to argue that day programs' ontological status in research as a "simple location" of care contributes to the ambiguous outcomes and limited evidence available for improving their design and delivery. Using one program as an illustrative case, we demonstrate the multiplicity of a day program and the ontological politics through which the potentialities for care emerge. Robert Cooper's proximal analysis of organizing's and Annemarie Mol's work on ontological politics inform this analysis. Of note in this analysis are the different enactments of a day program and their modes of coordination. We show when these enactments hang together well and when they do not and consider the effects of these politics for care. Of particular concern is how some versions of a day program are easily displaced by the interests of administrative versions and managerial logics. We argue for approaches to research and planning that acknowledge the "day program multiple" and precarious nature of care.

Configurations of power relations in the Brazilian emergency care system: analyzing a context of visible practices.

In this paper, we make explicit the changing configurations of power relations that currently characterize the Brazilian Emergency Care System (SAMU) team in Belo Horizonte, Brazil. The SAMU is a recent innovation in Brazilian healthcare service delivery. A qualitative case study methodology was used to explore SAMU's current organizational arrangements, specifically the power relations that have developed and that demonstrate internal team struggles over space and defense of particular occupational interests. The argument advanced in this paper is that these professionals are developing their work in conditions of exposure, that is, they are always being observed by someone, and that such observational exposure provides the conditions whereby everyday emergency care practices are enacted such that practice is shaped by, as well as shapes, particular, yet recognizable power relationships. Data were collected through the observation of the SAMU's work processes and through semi-structured interviews. Research materials were analyzed using discourse analysis. In the emergency care process of work, visibility is actually embedded in the disciplinary context and can thus be analyzed as a technique applied to produce disciplined individuals through the simple mechanisms elaborated by Foucault such as hierarchical surveillance, normalizing judgment, and the examination.

Problematizing health coaching for chronic illness self-management.

To address the growing costs associated with chronic illness care, many countries, both developed and developing, identify increased patient self-management or self-care as a focus of healthcare reform. Health coaching, an implementation strategy to support the shift to self-management, encourages patients to make lifestyle changes to improve the management of chronic illness. This practice differs from traditional models of health education because of the interactional dynamics between nurse and patient, and an orientation to care that ostensibly centres and empowers patients. The theoretical underpinnings of coaching reflect these differences, however in its application, the practices arranged around health coaching for chronic illness self-management reveal the social regulation and professional management of everyday life. This becomes especially problematic in contexts defined by economic constraint and government withdrawal from activities related to the 'care' of citizens. In this paper, we trace the development of health coaching as part of nursing practice and consider the implications of this practice as an emerging element of chronic illness self-management. Our purpose is to highlight health coaching as an approach intended to support patients with chronic illness and at the same time, problematize the tensions contained in (and by) this practice.

Reexamining the boundaries of the 'normal' in ageing.

Textbooks and policy documents tend to present the boundary between normal and abnormal ageing as natural and clearly demarcated. In this study, we trouble the notion of natural and clearly demarcated boundaries between normal and abnormal ageing by considering how these boundaries have been established and maintained in present-day Western contexts. We draw on both Canguilhem's discussion of the normal and the abnormal and Foucault's emphasis on the role of the sociohistorical context in the social practice of boundary generation. In doing so, we critically examine common conceptualizations of normal and abnormal ageing, including those found in antiageing science, successful ageing and healthy ageing policy discourses and in health education textbooks. We argue that the growing emphasis on 'healthy' ageing both reflects and shapes the societal views of those individuals who are not able to remain disease-free and represents a kind of mystification of ageing where ageing without functional or cognitive decline is instituted as the norm. Awareness of the role that the social context plays in shaping definitions of normal and abnormal ageing encourages critical consideration of the effects that Western conceptualizations of normal ageing may have for older adults who continue to age with cognitive or functional decline.

More than information: a qualitative study of parents' perspectives on neonatal intensive care at the extremes of prematurity.

PURPOSE: To describe parental perceptions of decision making concerning their extremely premature newborns who received care in a level III neonatal intensive care unit (NICU). SUBJECTS: Seven parents of preterm infants who were born at 24 to 26 weeks' gestation at a western Canadian tertiary NICU. DESIGN: Qualitative, interpretive description, semistructured interviews. METHODS: The first author conducted interviews with both parents together or the mother alone. Interviews were recorded, transcribed, and analyzed. RESULTS: Three main themes related to decision making, culture shock, and relationships emerged: (1) decision making before and in the NICU: moving beyond information, (2) culture shock in the NICU: plunging into a strange land, and (3) relationships in the NICU: enduring in a strange land. CONCLUSIONS: Although information and decision making are interconnected and fundamental to parents' experiences of their preterm baby's NICU stay, they also identified the culture and language of the NICU and genuine relationships formed with healthcare professionals as significantly influencing their experiences.

Means without ends: justifying supportive home care for frail older people in Canada, 1990-2010.

The challenges associated with ageing populations are very much on the policy and research agenda of many nations, with significant discussions focused on establishing appropriate, acceptable parameters of home care for those who are older and frail. This paper develops an analysis of changing justifications of home care in Canada (1990-2010) through examination of governmental and non-governmental home care policy documents and position papers, as well as observations from recent fieldwork in home care. Boltanski and Thévenot's sociology of justification provides a framework for analysis of these situations where competing and irreducible pluralities of goods complicate discussions of the 'right' way to proceed.

Community-based dementia care re-defined: Lessons from Iceland.

Studies of families caring for persons with dementia living at home often reflect feelings of being forgotten and abandoned by the authorities to shoulder the responsibility for care-giving. This has increased interest in how formal services can better support these families. This article analyses how health and social care professionals envision the needs of families of persons with dementia living in the community. It also describes the contributions of the formal care system to these families. The study design was qualitative. It involved interviews with professionals (N = 20), field observations from the settings where they worked, and public documents addressing care-giving for people with dementia. Data were analysed using the framework method. The findings reflected how those providing services to persons experiencing cognitive changes mainly understood the services as specialised. They focused on the diagnosis and treatment of the individual with dementia. They considered other aspects of care, such as attending to practical issues of daily life, to be a private matter, for which the family was responsible. In later stages of dementia, specialised day programs become available, offering rehabilitation to motivate positive daily living-for both the person experiencing dementia and family-centred supporters. Professionals in the field described primary care, community-based healthcare and home care services as poorly equipped to support these families. Participants acknowledged that families were often under a lot of stress and might need more support earlier in the illness. However, they saw themselves as powerless. Towards the end of the data collection, services were being re-designed to emphasise the role of primary care. In light of its holistic and family-centred approach, primary care may be well placed to integrate relational understanding of living with dementia and specialised knowledge of dementia treatment.

Re-thinking the nature of day programs for people with dementia: Implications for research.

Day programs are commonly identified in dementia strategies as a solution for keeping people with dementia home for as long as possible. Limited research evidence is available to support these policy approaches, and much of what exists demonstrates equivocal results. While key day program researchers have called for improvements in methodological and theoretical efforts, we argue that basic assumptions concerning what a day program is, and how the effects of day programs should be studied, also require reconsideration. Problematization is a systematic review strategy used to identify and critique assumptions guiding research practices and knowledge development in a field of study. The approach entails a broad overview of a field of research alongside a close reading of key texts to identify prevailing assumptions about the object of study and how it can be known. The intent is to discern how these assumptions are influencing research practices and thus knowledge development. A review of historical texts and research literature reviews was used (1) to identify trends in day program research between 1990 and 2018 and (2) to support identification of influential and typical studies for closer analysis (n = 36). The outcome of our analysis of the research literature suggests three sets of assumptions that guide much of the day program research literature: dementia is mainly treated as a problem of the individual; day programs are treated as stand-alone units of substitute care; and the space of day programs is seen as a simple background to care. We argue that the assumptions regarding care and space have narrowed the field of research and contributed to the production of equivocal findings. We suggest alternative framings of notions of care and space, informed by a Science and Technology Studies' approach to care practices, to generate knowledge about day programs that can usefully inform policy and practice.

[Reflections about power relations in nursing practice]. / Reflexões sobre relações de poder na prática de enfermagem.

Reflections on power relations in nursing practice involves questions related to the daily practice of nursing staff as well the subjectivity of those involved in them. Nursing practice is more than a practice in itself. It assumes the dimension of meaning ascribed to it by different subjects who interact in the places where the practice takes place. We propose a reflection about power relations in nursing practice, considering their complexity, the many processes that constitute them and the circumstances that determine the ways of thinking about and acting in relation to them. Such reflection implies to think about the subject's subjectivity the way professional boundaries are established, and the effects of these relations upon the subjects involved, since power relations are in continuous transformations.