Christine Ceci

Problematising care burden research.

ABSTRACT In this paper we use Alvesson and Sandbergs strategy of problematisation to analyse the assumptions embedded in the development and use of the concept of ‘care-giver burden’. We do this in order to develop an explanation as to why decades of research into the experience of providing home-based care to a family member with dementia has had little effect in relieving or reducing the ‘burden’ of that care. Though some part of this is undoubtedly political, our analysis suggests that key assumptions of the research limit both knowledge development and intervention effectiveness. Especially problematic are first, an overriding focus on the isolated care-giver–recipient dyad as the appropriate object of inquiry and target of intervention, and second, an absence of an analysis of the materiality of care and care-giving practices. The heterogeneity of care situations, including interrelations among people, technologies, objects, spaces and other organisational worlds, appear in much of the research primarily as methodological problems, variables to be subdued through a more rigorous application of method. The high volume of research and acknowledged low impact of interventions, however, suggests that rethinking the nature of care practices, and how we come to know about them, is necessary if we are to develop and implement strategies that will contribute to better outcomes for people.

Theorizing accommodation in supportive home care for older people

This paper examines the issue of what thinking is necessary in order to advance a notion of accommodation in the organization and provision of supportive home care for older people. Accommodation in this context is understood as responsiveness to the singularity of older adults, and we consider how this idea might be used to support opportunities for (independent) living for elders as they age and become frailer. To elaborate the question we draw on examples from our empirical work - ethnographic studies of home care practice undertaken in Canada and Iceland - and consider these examples in light of critical philosophical and social theory, particularly Agambens (1993) work, The Coming Community. This is a relevant frame through which to consider the potential for the accommodation of the unique needs of older adults in home care because it helps us to problematize the systems through which care is accomplished and the current, dominant terms of relations between individuals and collectives. We argue that giving substance to a notion of accommodation contributes an important dimension to aligned ideas, such as patient-centeredness in care, by working to shift the intentionality of these practices. That is, accommodation, as an orientation to care practices, contests the organizational impulse to carry on in the usual way.

Seeing the collective: family arrangements for care at home for older people with dementia

ABSTRACT With the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care systems failure to respond to these.

Problematising risk in stroke rehabilitation.

Abstract 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.

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 SAMUs 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 SAMUs 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.

Rethinking the assumptions of intervention research concerned with care at home for people with dementia

Aging populations have been positioned as a challenge to health and social service planning around the world, a situation even more pronounced in the case of persons with a diagnosis of dementia. While policy responses emphasize that care be provided for persons with dementia in home settings for as long as possible and that family carers be supported in the provision of this care, finding good ways to support families as they do the work of ‘delaying institutionalization’ has been challenging despite decades of intervention research intended to develop and evaluate interventions to support families. In this context of limited effectiveness it is useful to examine the assumptions informing research practices. Problematization is a method of literature analysis useful for clarifying and challenging assumptions informing a field of research in order to generate new approaches to research or new research questions. Our analysis suggests that although community-based intervention research has contributed significant knowledge about the kinds of things that might help families, there are limitations related to the dominant assumptions underlying the field. We highlight three areas for re-consideration: the overriding focus on caregiver–care recipient dyads, the under-determination of the object(s) of inquiry and the algorithmic nature of interventions themselves. Issues in these areas, we argue, arise from a commitment to homogeneity characteristic of biomedical models of disease that may need to be rethought in the face of consequential heterogeneity among research populations. That is, there is a mismatch between ‘dementia’ in the intervention research literature and ‘dementia’ in the life that is consequential for families living with these concerns.

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

ABSTRACT 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

Abstract 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 and the political.

Our starting place is the idea that nursing is always already political whether we acknowledge this condition or not. Not only are nurses’ practices shaped by the formal ‘politics’ of the day, which work to establish the specific economic and social contexts of health care, but there is a sense in which health is always a political issue having to do with judgments that instantiate values, create conditions of access, assign worth – and of course, reveal power. As Gastaldo & Holmes (2002) have argued, nurses are actively engaged through their practices in the politics of health. Politics is not something external to the practices of nursing – an epiphenomenon – but rather is that in which and through which the everyday actions of nursing are accomplished. This situation requires us to be willing and able to examine the effects of nursing in the everyday worlds of patients not least because, as Purkis (2001) observes, patients are frequently subject to political power precisely through the work of the nurse. Yet nurses commonly see themselves as powerless, apolitical, or as engaged in merely technical or ‘practical’ activities (Bjornsdottir, 2009). This is a problem for nursing because it leaves us without the critical resources – theoretical, intellectual or otherwise – to engage our present practices. Michel Foucault, philosopher and historian, takes up this problem of how to critically engage our present practices – in a way we see as relevant for nursing – in a paper with the somewhat provocative title, Is it really important to think? The question arises in the course of an interview first published in a French daily newspaper in 1981. The interview is oriented around discussion of the then recent election of François Mitterrand and the installation of France’s first socialist government in 23 years – but is also about the role of intellectual criticism and whether such critique actually has any effect in the world. The interviewer sets up an opposition between the ‘real’ world of everyday life and struggle and the intellectual’s supposed ideality, his or her distance from this reality. Criticism by intellectuals, suggests the interviewer, ‘clears up nothing’ (Foucault, 1982, p. 33). Foucault disagrees. Change or reform, he responds, does not happen out of ‘thin air’ – it involves hundreds or thousands of people working not only on resolution of the particular problem of today but also all of those whose work has allowed the emergence of those problems which are today actually being posed (p. 33). Do you think, Foucault asks, that twenty years ago it was even possible to pose as a problem the state of the prisons, the extent of medicalization, the production of gender, the treatment of mental illness, as these problems are being posed today? No, he continues, this has been, in part, the work of criticism and therefore, it makes no sense to oppose criticism and transformation. Critique is, in Foucault’s (1982) view, a matter of coming to see, analysing, the modes of thought that constitute our practices, a matter, he says, of ‘showing that things are not as obvious as we might believe, doing it in such a way that what we accept as going without saying no longer goes without saying’ (p. 34). Our questions, in this view, would be to the selfevidence of things and therefore have much to do with that which seems rather mundane. For instance, as nurses we might ask what are things like for us today? In what kinds of situations do we find ourselves? What do we know about the constraints that limit us, the possibilities that present themselves? These are ordinary questions yet address that which is central in determining the nature of our practices, as well in a larger sense, the character of our lives. For Foucault, being willing to take up such questions is ultimately, being willing to think. We make, as far as we are able, our thought visible. And, he suggests, because thought is something which often hides itself, we have to stop treating it lightly, as though its Edorial