Browsing by Author "Ceci, Christine"
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ItemRe-thinking the nature of day programs for people with dementia: implications for research(2019) Symonds-Brown, Holly; Ceci, Christine; Duggleby, Wendy; Purkis, Mary EllenDay 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. ItemRethinking the assumptions of intervention research concerned with care at home for people with dementia(2018) Symonds-Brown, Holly; Ceci, Christine; Judge, HarkeertAging 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. ItemSeeing the collective: family arrangements for care at home for older people with dementia(2018) Ceci, Christine; Symonds-Brown, Holly; Purkis, Mary EllenWith 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 system's failure to respond to these.