Diagnosing dementia: Ethnography, interactional ethics and everyday moral reasoning
In: Social theory & health, Band 15, Heft 1, S. 44-65
ISSN: 1477-822X
10 Ergebnisse
Sortierung:
In: Social theory & health, Band 15, Heft 1, S. 44-65
ISSN: 1477-822X
In: Social theory & health, Band 14, Heft 1, S. 66-87
ISSN: 1477-822X
In: BioSocieties: an interdisciplinary journal for social studies of life sciences, Band 12, Heft 3, S. 321-342
ISSN: 1745-8560
In: Space and Culture, Band 15, Heft 1, S. 68-87
ISSN: 1552-8308
Drawing on ethnographies of three areas of hospital life in the United Kingdom, this article explores the different logics played out through moments of access to hospital services. The authors make explicit the character of the hospital as heterotopia where different social actors are required to "fit" in with the organizational requirements of the hospital. What becomes clear is how the hospital as institution can accommodate particular logics at particular times that are incommensurate with the organization of the hospital and the "care" of patients. Such accommodation makes explicit the contestable characteristics of the hospital where alignments are made between multiple logics. Through processes of ordering, enrolling, or even dismissing potential patients (or even logics), the authors argue that divisions are labored across hospital life and are worked to accomplish particular social worlds. The issue of which social worlds are being labored and how they work for or against a logic of care is made explicit here. Through their ethnographic work, the authors show how through processes of ordering, enrolling, and dismissing persons, subject positions, and logics during moments of access, the hospital can be understood as a complex heterotopia that works politics through clinical and managerial practice.
In: Qualitative research, Band 9, Heft 5, S. 605-623
ISSN: 1741-3109
In this article we explore the ways in which mobile research methods can be utilised to create enabling research environments, encounters and exchanges, generating time and space for participants and researchers to co-generate and communicate meaningful understandings of everyday lives. The article focuses on the use of two mobile methods, 'guided' walks and car journey interactions, and the productiveness of these methods in contributing to the substantive and methodological aims of the (Extra)ordinary Lives project, an ethnographic and participatory research study that explored the everyday lives and relationship cultures of a group of young people in public care. Through this account we discuss the possibilities that mobile research encounters offer for the exploration of sensitive topics, as contexts through which intimacies can be interwoven within narratives of the mundane ordinariness of the everyday.
In: Qualitative social work: research and practice, Band 7, Heft 4, S. 427-447
ISSN: 1741-3117
This article problematizes the slippery notion of `informed consent' and its negotiation in participatory longitudinal ethnographic research with children and young people. It does so within the context of new ethical bureaucracies (Boden et al., in press; Hammersley, 2006). Drawing upon an Economic and Social Research Council (ESRC) funded methodological research project exploring the everyday lives and identities of eight children and young people in care, the article reinvigorates the intersubjective, situated and negotiated approach to research ethics as ongoing dialogue in everyday fieldwork relations. We consider the concept of `becoming participant' to foreground the micro-ethical moments of complex and ambivalent engagements and disengagements within the research process. The notion of `becoming participant', we suggest, may provide a conceptual language of description to analyse the complex terrain of consent, as always-in-process and unfinished. Drawing upon episodes of recorded fieldwork relations, we apply this notion to explore what it means to undertake participatory research where consent is `iterative and uncertain . . . and open to revision and questioning' (Economic and Social Research Council [ESRC], 2005: 24). We do not aim to resolve this dilemma, but instead aim to invite and reinvite questioning of what it means to negotiate informed consent in participatory research with young people.
The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.
BASE
Drawing on perspectives from the governmentality literature and the sociology of risk, this article explores the strategies, tools and mechanisms for managing risk in acute hospital trusts in the United Kingdom. The article uses qualitative material from an ethnographic study of four acute hospital trusts undertaken between 2008 and 2010 focusing on the provision of dignified care for older people. Extracts from ethnographic material show how the organisational mechanisms that seek to manage risk shape the ways in which staff interact with and care for patients. The article bridges the gap between the sociological analysis of policy priorities, management strategy and the organisational cultures of the NHS, and the everyday interactions of care provision. In bringing together this ethnographic material with sociological debates on the regulation of healthcare, the article highlights the specific ways in which forms of governance shape how staff care for their patients challenging the possibility of providing dignified care for older people.
BASE
In: Qualitative research, Band 20, Heft 5, S. 703-720
ISSN: 1741-3109
Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an essential experience that can be accessed through different methods. Drawing on Atkinson and Silverman, we view the interview not as confessional but rather as an outcome of social interaction. This paper draws on qualitative interviews from the Improving the Experince of Dementia and Enhancing Active Life (IDEAL) study, to focus specifically on the forms of accounting and storytelling of people living with dementia and how these are produced through the course of the interview encounter. Extracts from our interviews highlight key aspects of this interactional process: (a) social conventions and temporality, (b) self presentation and identity work, (c) accounts and wider cultural meanings. To conclude, we suggest that qualitative research with people with dementia requires a reframing of both the interview encounter and interpretive practices.
In: Henley , J , Hillman , A , Jones , I R , Woods , B , MacLeod , C , Pentecost , C & Clare , L 2021 , ' "We're happy as we are": the experience of living with possible undiagnosed dementia. ' , Ageing and Society . https://doi.org/doi:10.1017/S0144686X21001495
It is estimated that a third of people in the United Kingdom (UK) with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the CFAS-Wales cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.
BASE