Jessie Cooper

Technology‐based approaches to patient education for young people living with diabetes: a systematic literature review

Cooper H, Cooper J, Milton B. Technology‐based approaches to patient education for young people living with diabetes: a systematic literature review.

Organ donation, genetics, race and culture: The making of a medical problem (Respond to this article at http://www.therai.org.uk/at/debate)

11 Ciara Kierans and Jessie Cooper Ciara Kierans is a medical anthropologist based in the Division of Public Health and Policy at the University of Liverpool. Her research interests include medical practice, inequality and the biopolitics of transplant technologies. Her email is c.kierans@liverpool.ac.uk. Jessie Cooper is a PhD student in the department of Public Health and Policy at the University of Liverpool. Her research interests include organ donation, minority ethnic health inequalities and the study of science and technology Her email is j.c.cooper@liverpool.ac.uk.

Organ donation, ethnicity and the negotiation of death: ethnographic insights from the UK

Abstract The introduction of end-of-life care criteria in the UK aims at standardising the processes of care at the end of life, including how medical decisions on death are communicated to the families of dying and (brain) dead patients. In the setting of the intensive care unit, these activities are routinely complicated by the imperative to secure donor organs for transplantation: where recent changes to donation services have seen the accommodation of organ donation procedures into end-of-life care routines. This has ramifications for understanding how medical decisions around death and dying are brokered with the families of potential organ donors. Drawing on an ethnographic study in England, this paper will document how communications around death get turned into a particular matter of concern for the practice of requesting organ donation from minority ethnic families. It shows how attempts to resolve differences of opinion between health professionals and families about a diagnosis of brain stem death or dying are mediated by sets of brokering practices: specifically, those termed technological, authoritative and religious brokering. These practices, we argue, not only facilitate a family’s acceptance of their relative’s death, but also serve to make possible a decision on organ donation.

Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis

Herpes simplex virus (HSV) encephalitis is a potentially devastating disease, with significant rates of mortality and co-morbidities. Although the prognosis for people with HSV encephalitis can be improved by prompt treatment with aciclovir, there are often delays involved in the diagnosis and treatment of the disease. In response, National Clinical Guidelines have been produced for the UK which make recommendations for improving the management of suspected viral encephalitis. However, little is currently known about the everyday experiences and processes involved in the diagnosis and care of HSV encephalitis. The reported study aimed to provide an account of the diagnosis and treatment of HSV encephalitis from the perspective of people who had been affected by the condition. Thirty narrative interviews were conducted with people who had been diagnosed with HSV encephalitis and their significant others. The narrative accounts reveal problems with gaining access to a diagnosis of encephalitis and shortfalls in care for the condition once in hospital. In response, individuals and their families work hard to obtain medical recognition for the problem and shape the processes of acute care. As a consequence, we argue that the diagnosis and management of HSV encephalitis needs to be considered as a participatory process, which is co-produced by health professionals, patients, and their families. The paper concludes by making recommendations for developing the current management guidelines by formalising the critical role of patients and their significant others in the identification, and treatment of, HSV encephalitis.

The emergence of the ‘ethnic donor’: the cultural production and relocation of organ donation in the UK

Organ donation is constructed in the UK as a public responsibility, but more particularly as an obligation for members of minority ethnic communities. This paper draws attention to the ways in which ‘ethnicity’ has been made problematic by the allocation practices of transplant medicine, health promotion discourses and policy developments. Taken together, they have served to culturalise and racialise the procurement of organs. As the problem of organ donation is as much made inside medicine as outside it, this paper argues greater attention ought to be paid to these institutional practices and processes. Drawing on ethnographic work in the north of England, and with a specific focus on the organ consent encounter, this paper shows how categories of ethnicity in organ transplantation are an outcome of biopolitical and institutional practices. It argues that organ donation is best thought of, less as a discrete temporally-bounded act of decision-making, and more as a set of variegated situated practices that, in all manner of ways, problematically produce the publics that transplant medicine has come to rely upon so profoundly.

Problematising the ethics of organ donation after circulatory death in the UK

Abstract This commentary addresses the ethics of controlled organ donation after circulatory death (DCD) in the UK, a practice which has recently been revived as part of attempts to increase rates of organ donation. Despite being linked to growth in donor rates, bioethics and clinical scholars have drawn attention to the ethical issues which DCD poses for health professionals, particularly around the requirement to alter the end-of-life care of potential donors. In this commentary, the UK policy response to the ethics of DCD is examined by drawing on Foucault’s problematisation approach. This analyses the broader contexts within which the policy version of ethics for DCD has been created, and examines the potential implications of this form of ethics for the work of health professionals. It is argued that the policy version of ethics for DCD has a specific normalising role, which acts as an integral part of the efficiency drive by transplant medicine to optimise the potential for donation. In turn, this form of ethics is premised upon providing the right tools for health professionals to make ethical decisions around DCD. In so doing, it fails to account for the everyday practices of health professionals involved in end-of-life care. In conclusion, the commentary advocates bringing the social science perspective into debates on DCD, to ensure that the terms and practice of this technology, and its policies, are adequately problematised.

Care beyond the hospital ward: understanding the socio-medical trajectory of herpes simplex virus encephalitis

BackgroundHerpes simplex virus (HSV) encephalitis is a life-threatening infection of the brain, which has significant physical, cognitive and social consequences for survivors. Despite increasing recognition of the long-term effects of encephalitis, research and policy remains largely focused on its acute management, meaning there is little understanding of the difficulties people face after discharge from acute care. This paper aims to chart the problems and challenges which people encounter when they return home after treatment for HSV encephalitis.MethodsThe paper reports on data from 30 narrative interviews with 45 people affected by HSV encephalitis and their significant others. The study was conducted as part of the ENCEPH-UK programme grant on Understanding and Improving the Outcome of Encephalitis.ResultsThe findings show the diverse challenges which are experienced by people after treatment for HSV encephalitis. We first chart how peoples’ everyday lives are fragmented following their discharge from hospital. Second, we document the social consequences which result from the longer-term effects of encephalitis. Finally, we show how the above struggles are exacerbated by the lack of support systems for the post-acute effects of encephalitis, and describe how people are consequently forced to devise their own care routines and strategies for managing their problems.ConclusionThe paper argues that in order to improve long-term outcomes in encephalitis, it is vital that we develop pathways of support for the condition beyond the acute hospital setting. We conclude by making recommendations to enhance communication and care for the post-acute consequences of encephalitis, to ensure those affected are fully supported through the chronic effects of this devastating disease.

A Feasibility Study of Quantifying Longitudinal Brain Changes in Herpes Simplex Virus (HSV) Encephalitis Using Magnetic Resonance Imaging (MRI) and Stereology

Objectives To assess whether it is feasible to quantify acute change in temporal lobe volume and total oedema volumes in herpes simplex virus (HSV) encephalitis as a preliminary to a trial of corticosteroid therapy. Methods The study analysed serially acquired magnetic resonance images (MRI), of patients with acute HSV encephalitis who had neuroimaging repeated within four weeks of the first scan. We performed volumetric measurements of the left and right temporal lobes and of cerebral oedema visible on T2 weighted Fluid Attenuated Inversion Recovery (FLAIR) images using stereology in conjunction with point counting. Results Temporal lobe volumes increased on average by 1.6% (standard deviation (SD 11%) in five patients who had not received corticosteroid therapy and decreased in two patients who had received corticosteroids by 8.5%. FLAIR hyperintensity volumes increased by 9% in patients not receiving treatment with corticosteroids and decreased by 29% in the two patients that had received corticosteroids. Conclusions This study has shown it is feasible to quantify acute change in temporal lobe and total oedema volumes in HSV encephalitis and suggests a potential resolution of swelling in response to corticosteroid therapy. These techniques could be used as part of a randomized control trial to investigate the efficacy of corticosteroids for treating HSV encephalitis in conjunction with assessing clinical outcomes and could be of potential value in helping to predict the clinical outcomes of patients with HSV encephalitis.