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.

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.

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.

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.

A Framework for Supporting Post-acute Care Transitions of Older Patients With Hip Fracture.

OBJECTIVE: Improving care transitions is of critical importance for older patients, especially those with complex care needs. Our study examined the "Transitions of Care" (ToC) of complex, post-acute older adults at multiple time points. The objective of this article is to identify domains relevant to health care transitions of post-acute older patients with hip fracture so as to inform future ToC interventions. DESIGN: Here we conducted a framework-based synthesis of the 12 peer-reviewed manuscripts that were published from our multisite, ethnographic study. SETTING AND PARTICIPANTS: All 12 manuscripts were based on 1 study, described here. Data were collected in multiple regions, in acute and sub-acute care wards, rehabilitation programs, home care agencies, long-term care and assisted living facilities, and patients' private homes. We completed 51 interviews with 23 postoperative hip fracture patients aged ≥65 years, 24 interviews with 19 family caregivers, and 96 interviews with 92 health care providers. Interviews with patients, family caregivers, and health care providers were conducted at each transition point for a total of 171 individual interviews. RESULTS: Taken together, our framework analysis of the 12 manuscripts identified 8 themes related to ToC. Two themes, patient complexity and system constraints, are contextual factors that tend to impede ToC and may be less amenable to change. The remaining 6 themes, patient involvement and choice, family caregiver roles, strong relationships, coordination of roles, documentation, and information sharing, have the potential to support and improve ToC. CONCLUSIONS AND IMPLICATIONS: With comprehensive data from a range of stakeholders, collected at multiple transition points along the health care continuum, in our final 6 themes we identify potential points of intervention for clinicians and teams seeking to improve ToC for older complex patients.

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.

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.

Seniors, risk and rehabilitation: broadening our thinking.

PURPOSE: Conceptualizations of risk in seniors' rehabilitation emphasize potential physical injury, functional independence and cost containment, shifting rehabilitation from other considerations essential to promoting a satisfying life. In a two-day multidisciplinary planning meeting we critically examined and discussed alternatives to dominant conceptualizations. METHOD: Invitees reflected on conceptualizations of risk in stroke rehabilitation and low vision rehabilitation, identified and explored positive and negative implications and generated alternative perspectives to support rehabilitation approaches related to living a good life. RESULTS: Current risk conceptualizations help focus rehabilitation teamwork and make this work publically recognizable and valued. However, they also lead to practice that is depersonalized, decontextualized and restrictive. Further research and practice development initiatives should include the voices of clinicians and seniors to more adequately support meaningfully living, and foster safe spaces for seniors and clinicians to speak candidly, comprehensively and respectfully about risk. To ensure that seniors' rehabilitation targets a satisfying life as defined by seniors, increased focus on the environment and more explicit examination of how cost containment concerns are driving services is also necessary. CONCLUSION: This work reinforced current concerns about conceptualizations of risk in seniors' rehabilitation and generated ways forward that re-focus rehabilitation more on promoting a satisfying life. Implications for rehabilitation In seniors' rehabilitation, considerations of risk focus on physical injury, functional dependence and cost containment. Focus on provider-defined risk of physical injury limits examination of patient goals and patients' histories of judging and dealing with risk. Focus on functional dependence and cost containment may lead to practice that is depersonalized and decontextualized. Abandonment of ableist and ageist thinking and an explicit focus on person-centered definitions of risk and a satisfying life are recommended.

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.

Low Vision Rehabilitation, Age-Related Vision Loss, and Risk: A Critical Interpretive Synthesis.

PURPOSE: Given the centrality of risk in geriatric rehabilitation, it is critically important to attend to how conceptualizations of risk shape research, policies, and rehabilitation practices. This paper presents a critical interpretive synthesis (CIS) of literature addressing risk and low vision rehabilitation for older adults with age-related vision loss (ARVL) to identify key guiding assumptions regarding risk and discuss implications for what gets attended to, and not attended to, within research and rehabilitation. DESIGN AND METHODS: This CIS combined guidelines proposed by Dixon-Woods and colleagues (2006-Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology, 6, 35) and Alvesson and Sandberg (2011-Generating research questions through problematization. Academy of Management Review, 36, 247-271; 2013-Constructing research questions: Doing interesting research. London: Sage). The iterative review process involved 3 steps: literature search and selection, data extraction, and syntheses to identify boundary assumptions. The dataset included 83 research and practice description articles. RESULTS: Older adults with ARVL were constructed as "at risk" for various adverse outcomes, particularly dependency and self-harm, and as posing risks to others. An epidemiological approach to risk based in assumptions aligned with a technico-scientific perspective was dominant, with risk conceptualized as an embodied, individual-level phenomenon that is to be determined and managed through objective screening and expert monitoring. IMPLICATIONS: Key concerns include a lack of: attention to the tensions created when rehabilitation research and practice attempt to promote independence while simultaneously reducing risk, incorporation of aging adults' perspectives on risk, and analysis of environmental factors that shape risks. Research that starts by valuing older adults' experiences and attends to context can inform rehabilitation practices that support health-promoting, risk-taking, and facilitate collaborative approaches to risk management.

Problematising risk in stroke rehabilitation.

PURPOSE: Following stroke, re-engagement in personally valued activities requires some experience of risk. Risk, therefore, must be seen as having positive as well as negative aspects in rehabilitation. Our aim was to identify the dominant understanding of risk in stroke rehabilitation and the assumptions underpinning these understandings, determine how these understandings affect research and practise, and if necessary, propose alternate ways to conceptualise risk in research and practise. METHOD: Alvesson and Sandberg's method of problematisation was used. We began with a historical overview of stroke rehabilitation, and proceeded through five steps undertaken in an iterative fashion: literature search and selection; data extraction; syntheses across texts; identification of assumptions informing the literature and; generation of alternatives. RESULTS: Discussion of risk in stroke rehabilitation is largely implicit. However, two prominent conceptualisations of risk underpin both knowledge development and clinical practise: the risk to the individual stroke survivor of remaining dependent in activities of daily living and the risk that the health care system will be overwhelmed by the costs of providing stroke rehabilitation. CONCLUSIONS: Conceptualisation of risk in stroke rehabilitation, while implicit, drives both research and practise in ways that reinforce a focus on impairment and a generic, decontextualised approach to rehabilitation. Implications for rehabilitation Much of stroke rehabilitation practise and research seems to centre implicitly on two risks: risk to the patient of remaining dependent in ADL and risk to the health care system of bankruptcy due to the provision of stroke rehabilitation. The implicit focus on ADL dependence limits the ability of clinicians and researchers to address other goals supportive of a good life following stroke. The implicit focus on financial risk to the health care system may limit access to rehabilitation for people who have experienced either milder or more severe stroke. Viewing individuals affected by stroke as possessing a range of independence and diverse personally valued activities that exist within a network of relations offers wider possibilities for action in rehabilitation.

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 '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.

Information sharing with rural family caregivers during care transitions of hip fracture patients.

INTRODUCTION: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1) examine the characteristics of the family caregivers' experience of communication and information sharing and (2) identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers. METHODS: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8) and health care providers (n = 24). RESULTS: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting. CONCLUSION: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.