ABSTRACT
PURPOSE: Care has been theorized as a relational practice, but the research has focused on providers rather than users. Older care users have been cast in a passive role, and their relational activities to help with the provision of their care or to support those who provide it are underexplored. The purpose of this study is to develop knowledge about home care use as a form of relational 'work'. METHODS: The data for the study consists of 34 qualitative interviews with home care users in Sweden and 15 observations of care provision. The data has been coded using thematic analysis. RESULTS: The analysis identifies two overlapping forms of relational work done by care users in the home care context: care-centred work, where care users work to facilitate care situations that were positive for staff and for the provision of care; and person-centred work, where care users work to foster personal relations by focusing on care staff as unique individuals. CONCLUSIONS: The article proposes a research programme on relational work by care users, prompted by the finding that such efforts seem central for the understanding of eldercare in a variety of contexts.
Subject(s)
Home Care Services , Patient-Centered Care , Qualitative Research , Humans , Sweden , Home Care Services/organization & administration , Female , Male , Aged , Patient-Centered Care/organization & administration , Aged, 80 and over , Middle AgedABSTRACT
BACKGROUND: The use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering predetermined questions in a template. AIM AND METHODS: Using a constructionist approach, this study will (1) chart what versions of a person's life story the templates produce, and (2) establish the intended purpose of such life stories, as communicated by the templates. This study departs from the assumption that life story templates communicate something about the conceptions of people living with dementia. The thematic analysis used data comprising 30 blank templates, totalling about 1,700 questions. FINDINGS: The life story templates were found to generate two very different versions of the individual: (1) a person before symptoms of dementia or (2) a patient with dementia. We also found contradictions about what information should be included, whose life story it was, and the intended use. DISCUSSION: Despite strong pressure on dementia care providers to collect life stories from residents, the life story templates they use are without clear direction, ideology, or purpose. The lack of direction is key given that life stories can be considered actants that shape assumptions about people with dementia and construct realities in dementia care settings. We highlight the need to develop ethical guidelines for life story template design, matched with guidelines for their intended use.
