Jenny Kitzinger

Jenny Kitzinger
Cardiff University | CU · School of Journalism, Media & Culture

Social Anthropology

About

138
Publications
64,680
Reads
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15,269
Citations
Introduction
Research interests: coma, vegetative state, medical ethics, end of life decisions
Additional affiliations
February 2003 - present
Cardiff University
Position
  • Professor (Full)
September 1991 - August 1992
University of Glasgow
Position
  • Research Officer
December 1988 - September 1991
University of Glasgow
Position
  • Research Associate

Publications

Publications (138)
Chapter
Full-text available
This chapter explores how 'proper' medical treatments are decided for people with chronic disorders of consciousness (i.e. in vegetative or minimally conscious states). Setting our empirical research in the context of current law around 'necessity' (at the emergency stage) and 'best interests' (subsequently) we draw on 65 in-depth narrative intervi...
Technical Report
Full-text available
An online resource - including 250 film clips from in-depth interviews with family members with a relative in a vegetative or minimally conscious state. See www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/overview
Article
Full-text available
In W v M, family members made an application to the Court of Protection for withdrawal of artificial nutrition and hydration from a minimally conscious patient. Subsequent scholarly discussion has centred around the ethical adequacy of the judge's decision not to authorise withdrawal. This article brings a different perspective by drawing on interv...
Research
Full-text available
introduction: Mr G is a 64-year-old man who has been arguing for his right to live in the community since soon after entering residential care in early 2019. He is deemed not to have capacity to make a decision about where he lives, so this decision (along with other best interests decisions) has come before His Honour Judge Tindal in Worcester on...
Research
Full-text available
The hearing I observed on 20 th December 2021 (Case 13382192) concerned Mr G, a 64-year-old man who has vascular dementia, Korsakoff Syndrome, and frontal lobe damage. He also has problems with diabetes and alcohol use, and previously had an opiate addiction, from which he has since recovered. The hearing was to determine where he should live. At t...
Chapter
Full-text available
Much has been written about whether end-of-life law should change and what that law should be. However, the barriers and facilitators of such changes – law reform perspectives – have been virtually ignored. Why do so many attempts to change the law fail but others are successful? International Perspectives on End-of-Life Law Reform aims to address...
Chapter
Full-text available
Much has been written about whether end-of-life law should change and what that law should be. However, the barriers and facilitators of such changes – law reform perspectives – have been virtually ignored. Why do so many attempts to change the law fail but others are successful? International Perspectives on End-of-Life Law Reform aims to address...
Article
Full-text available
Court of Protection judgments can provide valuable insights into everyday care in ways that challenge poor practice and can be used to help improve person-centered care for the future. This is certainly true of last week’s publication of North West London Clinical Commissioning Group & GU [2021] EWCOP 59. The judgment is essential reading for eve...
Article
Full-text available
End-of-life disputes Assessing consciousness Role of videos of patient Role of social media
Article
This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocac...
Article
Full-text available
Background: Families of patients in vegetative or minimally conscious states are often horrified by the suggestion of withdrawing a feeding tube, even when they believe that their relative would not have wanted to be maintained in their current condition. Very little is known about what it is like to witness such a death. Aim: To understand thes...
Article
Full-text available
In August 2017 a judge sanctioned withdrawal of clinically assisted nutrition and hydration from a patient who had been sustained in a vegetative state for twenty-three years, finding it “overwhelmingly in his best interests” for treatment to stop, allowing him to die. Injured in 1994, this patient had continued to receive life-sustaining treatment...
Article
Full-text available
In a landmark judgment in the English Court of Protection, the judge (Charles J) found it to be in the best interests of a minimally conscious patient for clinically assisted nutrition and hydration (CANH) to be withdrawn, with the inevitable consequence that the patient would die. In making this judgment, it was accepted that the patient's level o...
Article
Background: This research explores the current and potential future role of independent mental capacity advocates (IMCAs) in critical care. The Mental Capacity Act (MCA) of 2005 introduced IMCAs as advocates for patients without anyone to represent their best interests, but research suggests that this role is not well understood or implemented. No...
Article
\textbf{BACKGROUND:}$ This research explores the current and potential future role of independent mental capacity advocates (IMCAs) in critical care. The Mental Capacity Act (MCA) of 2005 introduced IMCAs as advocates for patients without anyone to represent their best interests, but research suggests that this role is not well understood or implem...
Article
Full-text available
Life-extending treatment, in the form of artificial nutrition and hydration, is often provided to people in permanent vegetative states (PVS) in England and Wales for many years, even when their family believes the patient would not want it and despite the fact that no court in the UK has ever found in favour of continuing such treatment for a pati...
Article
Full-text available
Background In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia...
Article
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Seventy six senior academics from 11 countries invite The BMJ’s editors to reconsider their policy of rejecting qualitative research on the grounds of low priority.They challenge the journal to develop a proactive, scholarly, and pluralist approach to research that aligns with its stated mission
Article
Full-text available
Interviews with family members and practitioners highlight the ethical and legal dilemmas involved in treating patients in vegetative and minimally conscious states where there is no Advance Decision to Refuse Treatment and there is a belief that the patient would not have wanted to be sustained in such a condition. Family members talk about their...
Article
Full-text available
Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient's best interests. Part of the rationale underpinning the original recommendation for such cour...
Article
Full-text available
Purpose: To examine family perceptions of physiotherapy provided to relatives in vegetative or minimally conscious states. Method: Secondary thematic analysis of 65 in-depth narrative interviews with family members of people in vegetative or minimally conscious states. Results: Families place great significance on physiotherapy in relation to...
Article
Full-text available
Anonymising qualitative research data can be challenging, especially in highly sensitive contexts such as catastrophic brain injury and end-of-life decision-making. Using examples from in-depth interviews with family members of people in vegetative and minimally conscious states, this article discusses the issues we faced in trying to maximise part...
Article
The study was undertaken in three specialist neurological long-term care centres, using focus groups and semi-structured interviews with 33 current residents, 1 former resident and 19 relatives. This article highlights that: - The quality of relationships with staff is very important to the experience of people living in long-term neurological care...
Article
Full-text available
Anonymising qualitative research data can be challenging, especially in highly sensitive contexts such as catastrophic brain injury and end-of-life decision-making. Using examples from in-depth interviews with family members of people in vegetative and minimally conscious states, this article discusses the issues we faced in trying to maximise part...
Article
Full-text available
Rationale, aims and objectivesChronic disorders of consciousness (CDoC) pose significant problems of understanding for both medical professionals and the relatives and friends of the patient. This paper explores the tensions between the different interpretative resources that are drawn upon by lay people and professionals in their response to CDoC....
Article
Full-text available
Throughout affluent societies there are growing numbers of people who survive severe brain injuries only to be left with long-term chronic disorders of consciousness. This patient group who exist betwixt and between life and death are variously diagnosed as in 'comatose', 'vegetative', and, more recently, 'minimally conscious' states. Drawing on a...
Article
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The training and expertise of healthcare professionals in diagnosing and treating pathology can mean that every situation is treated as an instance of illness or abnormality requiring treatment. This medicalised perspective is often evident in clinical approaches to family members of people with prolonged disorders of consciousness. This editorial...
Article
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This paper addresses, from a socio-legal perspective, the question of the significance of law for the treatment, care and the end-of-life decision making for patients with chronic disorders of consciousness. We use the phrase ‘chronic disorders of consciousness’ as an umbrella term to refer to severely brain-injured patients in prolonged comas, veg...
Article
Full-text available
Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibly lost their capacity for consciousness but retained some autonomic physiological functions, such as breathing unaided. Having discussed the controversial nature of the permanent vegetative state as a diagnostic category, we turn to the question of the...
Article
Full-text available
These comments encapsulate some common themes in how people describe having a severely brain-injured relative in a coma-like condition, medically known as a ‘disorder of consciousness’. In the past it was highly unusual for such individuals to survive very long after the initial trauma that caused their injury. However, the emergence of modern medi...
Article
Full-text available
Qualitative researchers attempting to protect the identities of their research participants now face a multitude of new challenges due to the wealth of information once considered private but now readily accessible online. We will draw on our research with family members of people with severe brain injury to discuss these challenges in relation to...
Chapter
Full-text available
These comments encapsulate some common themes in how people describe having a severely brain-injured relative in a coma-like condition, medically known as a ‘disorder of consciousness’. In the past it was highly unusual for such individuals to survive very long after the initial trauma that caused their injury. However, the emergence of modern medi...
Book
Full-text available
This booklet is for family and friends of anyone in a ‘vegetative’ state (with no awareness) or ‘minimally conscious’ state (with minimal and intermittent awareness of themselves and their environment).It is designed to help clarify the law and practice in England and Wales1 around decision-making in relation to a patient who lacks capacity to make...
Technical Report
Full-text available
This report looks at the possible benefits and unintended consequences of intervening in the brain, and sets out an ethical framework to guide the practices of those involved in development, regulation, use and promotion of novel neurotechnologies. - See more at: http://nuffieldbioethics.org/project/neurotechnology/#sthash.VEQ6xFkd.dpuf
Article
Full-text available
This paper examines the public representation of, and family responses to, scientific studies into consciousness in coma-like states. We examine the publicity surrounding high-profile studies using functional Magnetic Resonance Imaging (fMRI) on ‘vegetative’ or ‘minimally conscious’ patients and compare this with family views. Our findings show how...
Article
This article builds on and develops the emerging bioethics literature on the 'window of opportunity' for allowing death by withholding or withdrawing treatment. Our findings are drawn from in-depth interviews with 26 people (from 14 different families) with severely brain injured relatives. These interviews were specifically selected from a larger...
Article
Full-text available
A more balanced perspective The BBC’s Panorama programme The Mind Reader: Unlocking My Voice broadcast on 13 November 2012 provided important insights into the devastating experience of patients who live in vegetative or minimally conscious states and the families who support them. It also provided useful information on the use of functional magne...
Article
Full-text available
An adjective checklist was used to examine associations between mothers' descriptions of their babies at 6 wks of age and antenatal, intrapartum, and postnatal factors. Ss who were finding life disorganized and those with low emotional well-being were most negative about their babies. Parity was one of the major factors associated with the way the...
Technical Report
Full-text available
This research examined residents’ and relatives’ perspectives on what is important in rehabilitation and long-term care centres for people with neurological conditions. The research participants were residents at three UK neurological centres and relatives with loved ones at these centres. In total 14 residents and 19 relatives participated in th...
Article
Full-text available
This paper examines the gendered representations of scientists in the UK media. Our analysis reveals the asymmetrical ways in which men and women working in science, engineering and technology are portrayed, in particular through the emphasis on women's appearance and a focus on their exceptional status. It also highlights the way female scientists...
Article
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Most of articles in this Special Issue have focused on news reporting about risk. However, fiction is another important form of media through which risks are represented. Indeed, fictionalised dramatisations are often a key focus of concern for scientists and policy‐makers. This article draws on interviews with scientists and policy‐makers, and ana...
Article
Full-text available
This article works with the figure of the “modest witness” and the concept of “virtual witnessing” to explore the case of the South Korean scientist, Hwang, whose stem cell breakthroughs are now regarded as hoaxes. We analyze the rhetorical techniques used by the scientific establishment and news media to first endorse, and then disavow, Hwang’s wo...
Article
Summary There are too few registrar posts in obstetrics and gynaecology to allow every consultant to have his own consultant led team. This situation is dealt with in practice by senior house officers acting up, by both senior house officers and registrars working 1 in 2 rotas, and by consultants working some of the time without a middle grade of s...
Article
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The trajectory of stem cell research in the early years of the twenty-first century offers a useful case study for the sociology of expectations. A phase of ‘Visionary Promise’ (2000 onwards) was followed by the ‘Breakthrough phase’ (2004 to mid-2005); however, in late 2005, key breakthroughs were revealed as highly problematic leading to a period...
Chapter
Full-text available
The Women's Liberation Movement and the Feminist Analysis of Sexual ViolenceProducing Cultural Change: The Media and Feminist TransformationsNew and Ongoing Criticisms of Media CoverageThe Focus on Controversial AllegationsConclusion Questions for DiscussionNotesReferences
Chapter
How do journalists portray perpetrators of sexual violence and who do we think about as dangerous? This chapter explores how sexual violence against children is conceptualised and interpreted in the mass media and people’s reading of mass media texts in the context of their daily lives. It draws on textual analysis, interviews with journalists and...
Article
Bio-technological research is refracted through, and has implications for, national and international economies, status, image and networks. Human embryo stem cell research, for example, brings potentially very high financial and reputational rewards, but also can carry great risks. This was dramatically illustrated in the South Korean debacle. Bre...
Chapter
Focus groupsWhat are focus groups?Conducting a focus group studyRunning the groupsAnalysis and writing upConclusion
Article
Full-text available
This book provides an intensive exploration of recent popular representations of human cloning, genetics and the concerns which they generate and mobilise. It is a timely contribution to current debates about the public communication of science and about the cultural and political stakes in those debates. Taking the UK as its main case study, with...
Article
ABSTRACT June 2000 saw the triumphal announcement of the completion of the human genome ‘working draft’. This attracted extensive, peak and vivid coverage. While several studies have explored media coverage of the announcement, there has been little discussion of the production process: the overall aims, values and structures which underpinned this...
Article
Making sense of new technologies and their associated risks entails lay people in utilizing various modes of reasoning and making use of a range of interpretative resources at hand to interrogate evidence. Such sense making is accomplished collectively in ways that are sometimes playfully inventive, and which have regard to ideas of accountability...
Article
Research repeatedly identifies an association between health and socio-economic status-richer people are healthier than poorer people. Richard Wilkinson has posited that socio-psychological mechanisms may be part of the explanation for the fact that socio-economic inequalities run right across the social spectrum in wealthy societies. He argues tha...
Article
Controversies about biotechnologies often centre not so much on present scientific facts as on speculations about risks and benefits in the future. It is this key futuristic element in these arguments that is the focus of this article. We examine how competing visions of utopia or dystopia are defended through the use of diverse vocabularies, metap...
Article
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This paper reports findings from a content analysis of the main messages about sexuality in media outlets consumed by young people. It examines how sexuality is represented and the level of sexual health information provided in some UK magazines and TV programmes targeted at young people. Our findings show that such outlets included a vast range of...
Article
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Ce numéro réunit plusieurs chercheurs expérimentés ayant travaillé sur les focus groups, dans le but de présenter cette méthode de recherche passionnante et de plus en plus utilisée par les psychologues. Nous tenons, en particulier, à souligner les liens existant entre les focus groups et la théorie psycho-sociologique des représentations sociales,...
Article
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How is the embryo defined, envisaged, imagined? Who speaks on its behalf, and how? Based on a study of UK press and TV news reporting, this paper identifies the rhetorical strategies used to assert competing ethical positions around embryonic stem cell research. We show how both sides in the dispute mobilise metaphors and use personification to rec...
Article
For almost two decades prior to the election of the New Labour government in 1997, inequalities in health were largely absent from the political debate in Britain. New Labour sought to bring inequalities, and the role of poverty as a 'root cause' of ill-health, back on to the public agenda. This paper analyses four key documents (Green and White Pa...
Article
This paper examines media coverage of ‘breast cancer genetics’, and explores its implications for public understanding. We present a content analysis of coverage in British newspapers and look at a variety of popular forms, including women’s magazines, television soap opera and radio drama. Genetic/inherited risk receives a great deal of coverage a...
Article
This article examines an extraordinary cultural transformation in public and private knowledge: the discovery of child sexual abuse. It draws on interviews and focus group discussions conducted over eleven years to explore how dramatic changes in mass media coverage influenced public and personal perceptions of this issue. Focussing on the experien...
Article
Full-text available
To examine how breast feeding and bottle feeding are represented by the British media. Content analysis. Television programmes and newspaper articles that made reference to infant feeding during March 1999. UK mass media. Visual and verbal references to breast or bottle feeding in newspapers and television programmes. Overall, 235 references to inf...
Article
Developing Focus Group Research: Politics, Theory and Practice, Rosalind S. Barbour and Jenny Kitzinger (eds.), London: Sage, 1998, £40.00 (£15.99 paperback), xiii+225 pp. (ISBN 0-7619-5568-2) - - Volume 34 Issue 3 - BRIDGET BYRNE
Article
Full-text available
This article introduces the concept of `media templates' and explores how these templates operate in relation to existing theories around key events and news icons. Drawing on focus group discussions, content analysis and interviews with media personnel, I demonstrate how templates help to shape news narratives and guide thinking not only about the...
Article
This paper examines media coverage of 'breast cancer genetics', and explores its implications for public understanding. We present a content analysis of coverage in British newspapers and look at a variety of popular forms, including women's magazines, television soap opera and radio drama. Genetic/inherited risk receives a great deal of coverage a...
Article
Full-text available
The media are crucial players in the construction of, and communication about, risk. Yet their role is often under-theorised, and sometimes misrepresented or parodied. In particular, the media are accused of routine sensationalism. Journalists are blamed for exaggerating risk, 'whipping up hysteria' and distorting reality. Academic studies of the m...
Article
Full-text available
Critically examines some of the emerging orthodoxies in the field of focus group research, and presents a series of accessible, insightful, and reflective discussions about the political, theoretical, and practical issues around focus group research. Researchers from a range of disciplines and theoretical traditions (including sociology, psychology...
Article
Which risks attract mass media attention? When and why do particular threats become headline news? Using three diverse case studies, this article charts the rise and fall of risk crises and draws on interviews with journalists and their sources to identify the key factors affecting these processes. We demonstrate how source competition, journalists...
Chapter
This chapter examines the ways in which childhood sexual abuse can influence women’s reactions to pregnancy, childbirth and the transition to motherhood. Drawing on in-depth interviews with adult survivors, the chapter explores the links between women’s experiences of sexual violence and their experiences of giving birth. It describes how such adul...

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Projects (3)
Project
Despite highly-publicised court cases internationally in which (some) family members seek to have feeding tubes withdrawn from vegetative relatives (e.g. Schiavo in the USA, Englaro in Italy, Bland in England) there is no research exploring how family members arrive at this decision, navigate the social and medico-legal contexts in which this decision must be implemented, or how they experience their relative’s subsequent death. This paper fills that gap. Based on thematic analysis of in-depth qualitative interviews, we explore the experience of 13 such family members. Our analysis shows (1) despite pursuing ANH-withdrawal interviewees often have strong ethical concerns about it but come to view it as the ‘least worst option’; (2) interactions with healthcare professionals (and ‘the public’) help shape family expectations and experience; and (3) in contrast with their fears about death after ANH-withdrawal, interviewees reported ‘peaceful’ deaths and – despite some ongoing reservations - none regretted that their relative had been allowed to die this way. We conclude by highlighting the ethics and policy implications of our findings.