Pathways and prospects in cancer research: Securing futures and negotiating boundaries

This paper draws on literature from the sociology of expectations to explore accounts of experts in cancer research and clinical practice. The cancer specialists’ accounts presented in this article are taken from interviews undertaken as part of a project that aimed to develop a research agenda for the next ten to thirty years that will achieve early detection and prevention in the four main cancers: (i) bowel and colorectal, (ii) prostate, (iii) lung and (iv) breast. Drawing on secondary analysis of the interviews, this article provides a sociological exploration of both the experts’ versions of the future and the interactions between the interviewer and research participant to show expectation in the making: the competing stories of what is and what ought to be the focus of cancer research now and in the (near) future. The building of a cancer research agenda is shown to be a contested future, represented by a dominant and resistant view of the cancer problem, in which cancer specialists must engage in performative strategies and boundary work to frame the present problem: what cancer is and how it can be detected and, subsequently, to claim credibility for a future pathway

Negotiating access : practices of inclusion and exclusion in the performance of 'real' emergency medicine

This ethnography examines how Accident and Emergency (A&E) operates as both threshold and gatekeeper. The study draws upon field work undertaken in the accident and emergency department of a major UK teaching hospital. Focussing on patients' and staffs' everyday practices and interactions, the study shows how, and in what moments, medical, administrative and cultural classifications are drawn upon to legitimate and contest different interests. The exploration of categorisation and classification practices is important, not only for a better understanding of A&E as a site in which access to important life chances are negotiated, but also for understanding more about the relations between medicine and socio-cultural classification, and the consequences for those enrolled in their re-making. A&E is shown to be an important sociological site in which forms of knowledge, moral values and relations of power are produced. The thesis situates itself between a body of sociological research that focuses on medical practices as socially constructed, and that pays attention to how medicine re-produces socio-cultural classification, and a set of literatures that account for medicine as particular forms of knowledge. Building on an emergent tradition of research that extends and moves beyond this division, the thesis adopts a particular view of medical knowledge practice that is performative, existent in and through social relations, not only the social relations that occur between people and between people and materials, but also the relations that occur with other modes of ordering such as those produced through clinical governance guidelines. The thesis shows how staff continually perform 'real' emergency medicine. 'Real' emergency medicine is shown to be produced in a number of different ways. It is often accounted for as purely clinical, and as a knowledge practice that relies upon a specific form of medical perception and clinical practice. However, in their accounts of those persons presenting at A&E who fall beyond the boundaries of the purely clinical, members help to accomplish what the 'real' is not. In other moments 'real' emergency medicine includes the organisation and rationing of resources through medical staffs' managing of clinical expertise. Finally, during processes of patient assessments 'real' emergency medicine can be accomplished through patient's own performance of good citizenship as they negotiate their access to health services. Thus, in developing 'accessing' as its central trope, the study shows how A&E as a critical site, is one in which medicine emerges as deeply implicated in mundane practices of social inclusion and exclusion.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Negotiating access : Practices of inclusion and exclusion in the performance of 'real' emergency medicine.

This ethnography examines how Accident and Emergency (A&E) operates as both threshold and gatekeeper. The study draws upon field work undertaken in the accident and emergency department of a major UK teaching hospital. Focussing on patients' and staffs' everyday practices and interactions, the study shows how, and in what moments, medical, administrative and cultural classifications are drawn upon to legitimate and contest different interests. The exploration of categorisation and classification practices is important, not only for a better understanding of A&E as a site in which access to important life chances are negotiated, but also for understanding more about the relations between medicine and socio-cultural classification, and the consequences for those enrolled in their re-making. A&E is shown to be an important sociological site in which forms of knowledge, moral values and relations of power are produced. The thesis situates itself between a body of sociological research that focuses on medical practices as socially constructed, and that pays attention to how medicine re-produces socio-cultural classification, and a set of literatures that account for medicine as particular forms of knowledge. Building on an emergent tradition of research that extends and moves beyond this division, the thesis adopts a particular view of medical knowledge practice that is performative, existent in and through social relations, not only the social relations that occur between people and between people and materials, but also the relations that occur with other modes of ordering such as those produced through clinical governance guidelines. The thesis shows how staff continually perform 'real' emergency medicine. 'Real' emergency medicine is shown to be produced in a number of different ways. It is often accounted for as purely clinical, and as a knowledge practice that relies upon a specific form of medical perception and clinical practice. However, in their accounts of those persons presenting at A&E who fall beyond the boundaries of the purely clinical, members help to accomplish what the 'real' is not. In other moments 'real' emergency medicine includes the organisation and rationing of resources through medical staffs' managing of clinical expertise. Finally, during processes of patient assessments 'real' emergency medicine can be accomplished through patient's own performance of good citizenship as they negotiate their access to health services. Thus, in developing 'accessing' as its central trope, the study shows how A&E as a critical site, is one in which medicine emerges as deeply implicated in mundane practices of social inclusion and exclusion

Biomarkers and brains : situating dementia in the laboratory and in the memory clinic

This paper provides a comparison of how genetic biomarkers are used (or not) in three contexts: clinic-based diagnostic work with people; lab-based research on mice and their marbles; and lab-based research on thrashing nematodes. For all the worldwide drive to find biomarkers that can be used in the detection of early, presymptomatic dementia, there is little research on how or when the association between biomarkers and a definitive disease are being made to “hold.” First, we show the disjuncture between the animal modeling that underpins laboratory attempts to stabilize genetic biomarkers and the paradigms that inform clinical diagnosis. Secondly, we develop this theme to show how in our third site, an epigenetics “worm” laboratory, neurodegenerative changes are explored as located in specific gene-environment interactions over time. We speculate whether such an enactment brings us closer to a notion of “situated biology,” to undercut possibilities of making genetic biomarkers of preclinical dementia hold

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Abstract Background As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required

“We’re happy as we are”: the experience of living with possible undiagnosed dementia.

This is the author accepted manuscript. The final version is available from Cambridge University Press via the DOI in this record. It is estimated that a third of people in the United Kingdom 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 Cognitive Function and Ageing Studies-Wales (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.Alzheimer's SocietyEconomic and Social Research Council (ESRC

Somaticization, the making and unmaking of minded persons and the fabrication of dementia

This article examines the strategies by which the different and variable signs of failing mental powers become known sufficiently for ‘dementia’ to be made into a stable bio-clinical entity, that can be tested, diagnosed and perhaps one day even treated. Drawing on data from ethnographic observations in memory clinics, together with interviews with associated scientists and clinicians, we document the challenges that clinicians face across the clinical and research domain in making dementia a stable object of their investigation. We illustrate how the pressure for early diagnoses of dementia creates tensions between the scientific representations of early dementia and its diagnosis in the clinic. Our aim is to highlight the extent to which the work of diagnosing dementia involves an intricate process of smoothing out seemingly insurmountable problems, such as the notoriously elusive connections between brain/mind and body/person. Furthermore, we show that a part of this process involves enrolling patients as minded, agentic subjects, the very subjects who are excluded from dementia science research in pursuit of biomarkers for the pre-clinical detection of dementia

Impact of COVID-19 on 'Living Well' with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. Results: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to 'live well'. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. Conclusion: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic

Living with dementia during the COVID-19 pandemic: coping and support needs of community dwelling people with dementia and their family carers. : Research findings from the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI)

We interviewed people with dementia and carers from the IDEAL cohort to find out how the COVID-19 lockdown and continuing restrictions affected those living with dementia. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties. For many, social isolation increased anxiety. Some felt that lack of activity or lack of social contact caused a decline in their abilities to manage everyday tasks. Confusion about COVID-19 rules or difficulty remembering what to do led to anxiety when leaving the house. People felt that members of the public might not understand their particular needs. While some carers felt they were coping well, others experienced stress when having to leave the home because the person with dementia might not be safe if left alone. Some experienced increased strain in the caring relationship compounded by an uncertainty about future availability of respite. Some were concerned about the complex health needs of the person with dementia alongside COVID-19 risk and lack of personalised information. Both people with dementia and carers talked about the importance of access to safe outdoor space. People were anxious about how others would react or behave towards them regarding keeping a distance if they went out. Being connected to friends, family and wider community or support groups was important to help combat the effects of isolation. People from BAME communities worried about their increased vulnerability to the virus. A lack of trust in Government guidance and in health care services added to their anxiety. However, some benefitted from strong community and faith group involvement. What might be helpful for people with dementia? • Reablement to help regain or maintain skills • Personalised health advice regarding managing COVID-19 risk and the opportunity to ask questions. • Identification of people with dementia who live alone and an assessment of their needs. What might be helpful for carers? • Needs assessment in regard to respite. • Novel forms of respite care that incorporate social distancing. What might be helpful for both carers and people with dementia? • Access to COVID-safe outdoor spaces. • Continuation and expansion of ‘just checking’ services. • Support to get online and use the internet. • Communication and information through non-digital means. • Community COVID-19 ‘dementia awareness’ initiatives. What might be helpful for people from Black and minority ethnic groups? • Addressing concerns about their increased risk of COVID-19. • Directing information and support through existing community and faith groups