Research Centre members
Prof Jenny Kitzinger (School of Journalism, Media & Cultural Studies, Cardiff), Prof Celia Kitzinger (Sociology); Prof Keir Waddington (History, Cardiff), Dr Andrew Edgar (Philosophy, Cardiff), Dr Dai John (Pharmacy, Cardiff), Dr Julie Latchem-Hastings (Sociology, Cardiff), Dr Geraldine Latchem-Hastings (Health Sciences, Cardiff); Prof Frank Sengpiel (Neuroscience, Cardiff), Prof Daniel Kelly (Healthcare Sciences, Cardiff),” Jakki Cowley (Director of Empowerment Matters, an Advocacy and Mental Capacity Act resource provider); Sue Olley (Knowledge Exchange Fellow, Cardiff) Gillian Loomes (Sociology, Leeds), Prof Sue Wilkinson (Sociology, York).
Associates and advisors: Nancy Berlinger (Hastings Centre), Jan Lavrijsen (specialist in complex and palliative care, Radboud University Nijmegen Medical Centre), Prof Phil Fennel (Law, Cardiff); Prof. Penney Lewis (Kings college London), Koonal Shah (Office of Health Economics), Dr Gabby Samuels (Brunel), Prof. Derick Wade (Consultant in Neurorehabilitation)
Jakki Cowley (Director of Empowerment Matters)
Jakki Cowley is Director of Empowerment Matters, an Advocacy and Mental Capacity Act resource provider. She has been anadvocate since 2003 and specialises in working with patients in Prolonged Disorders of Consciousness as well as supporting their families in best interests decision making. Jakki is currently seconded to Cardiff University working on advocacy & best interests decisions for people in vegetative and minimally conscious states. Jakki advocated on behalf of Mrs N in the recent Court of Protection judgment where withdrawal of CANH was approved for the first time in English law for a person diagnosed as being in a minimally conscious state (click here).
Andrew Edgar is a philosopher of health care and medicine who is working on ‘dignity’ with respect to both patients with disorders of consciousness and their relatives and carers. He is also interested in narrative approaches to ethics and medicine, and the way in which carers and relatives narrate their experiences and moral concerns.
Dai is a registered pharmacist and is Reader in Pharmacy Education and Practice at the School of Pharmacy and Pharmaceutical Sciences, Cardiff University. His research and teaching interests include the practice and professionalism of pharmacy and medicines use. Dai became involved with CDoC through his interest in issues relating to the availability, choice, supply and administration to patients of medicines in care homes.
Daniel Kelly holds the Royal College of Nursing Chair in Nursing Research at Cardiff. His academic interests span the social sciences and health care. His main research interests have focussed on the impact and experience of illness – particularly in the context of palliative care – as well as enhancing the potential of nursing and workforce issues. He is working with the CDoC data to explore family experiences of the palliative care issues for vegetative and minimally conscious patients.
Celia Kitzinger is a Chartered Psychologist, a Fellow of the British Psychological Society. Her work as Co-Director of the Coma and Disorders of Consciousness Research Centre builds on earlier research on other health-related issues largely relating to pregnancy and childbirth and to doctor/patient communication. She is also a specialist in qualitative research methodologies (especially conversation analysis) and is PI for the ESRC-funded seminar series on advance decisions to refuse treatment. She has been honoured with a Distinguished Book Award from the American Psychological Association and an Outstanding Research Award from the British Psychological Society (Qualitative Methods Section) for original research on human interaction.
Jenny Kitzinger is Professor in the School of Journalism, Media and Cultural Studies at Cardiff University. Her work as Co-Director of the Coma and Disorders of Consciousness Research Centre builds on earlier research on other health/science issues such as AIDS, human genetics and nanotechnology, and she has a special interest in the cultural representation of, and social and ethical debates around, science and technology. Since focussing on the issue of disorders of consciousness she has served on the Royal College of Physicians’ Working Party rewriting guidelines on the management of the ‘vegetative’ state, and the Nuffield Council on Bioethics Working Party on novel neurotechnologies that intervene in the brain. She is also a specialist in qualitative research methodologies (especially focus groups) and has been grant holder on a wide variety of related projects (e.g. exploring how science press officers and journalists operate in the reporting of scientific ‘breakthroughs’).
Julie has a background as a practicing neurological physiotherapist. Her research looks at quality of life, therapeutic interventions and lay perspectives of care and treatment of people with neurological conditions – including disorders of consciousness. Julie has just completed her doctoral study at Cardiff University (funded by an ESRC +3 studentship) in the School of Social Sciences. She now works in JOMEC with Professor Jenny Kitzinger. She lead on the development of an initiative to work with Christian churches to explore end-of-life decision making (christiandying.org.uk) and is currently completing an online training resource about disorders of consciousness aimed at Allied Healthcare Professionals. Julie’s PhD was an ethnography of two neurological rehabilitation settings in the independent sector. Her research explored how the futures of people with severe brain injuries are shaped and negotiated during rehabilitation.
Geraldine is Senior Lecturer and Professional Head: Physiotherapy in the School of Healthcare Sciences at Cardiff University. Her research interests are ethics and law in health & social care, interprofessional education, personal development planning (PDP) including engagement with reflective practice and portfolio development. Her primary research is focused on health care law, ethics and professional socialisation related to physiotherapy as a healthcare profession. Her secondary research focuses on creating digital learning spaces to facilitate allied health professionals, midwives and nurses learning to meet the challenges of modern healthcare practice. She worked with Dr Julie Latchem-Hastings to develop the online training resource for AHPs – particularly exploring its potential for inter-professional continuing professional development (CPD).
Gillian Loomes is doing her PhD (funded by an ESRC 1+3 studentship) in the Law Department at Leeds. She is part of the White Rose Network on Complexity and Disabled Selfhood and her PhD topic is “Overcoming the Barriers: Including People with Profound Intellectual and Multiple Disabilities in Research”. Gillian has a first degree in Law, a PGCert in Special Education, and a PG DipEd in teaching adults with learning difficulties and disabilities. She has worked for the Autism Education Trust and also has research experience with the International Disability Rights Monitor.
Sue Olley (Knowledge Exchange Fellow, Cardiff University)
Sue Olley is a former government lawyer with past experience of acting on behalf of NHS bodies.
She is working with CDoC looking at how the law operates in practice and exploring organisational change to ensure patients’ best interests are addressed
Frank Sengpiel is a neuroscientist with a research interest in vision and in functional brain imaging techniques. For some years, Frank has been the lead for public engagement at the Neuroscience & Mental Health Research Institute at Cardiff University. He is interested in how to improve communication between families of people with disorders of consciousness and clinicians, how to help the families understand the medical science, and how to make the general public engage with the wide-ranging implications of disorders of consciousness.
Keir Waddington is a social historian of medicine who has worked on the history of institutional medicine in nineteenth and twentieth-century Britain and more recently on Gothic narratives of medicine and the laboratory. His involvement in the Research Centre arises from a project he ran with Martin Willis (University of Westminster) on families’ accounts of their encounters with institutional medicine and how these narratives are often grounded in literary and historical contexts. His particular interest in CDoC focuses on the places and spaces in which medical encounters occur and how these can be historically situated.
Sue Wilkinson is a Chartered Psychologist, Fellow of the British Psychological Society, and Honorary Professor in the Department of Sociology, University of York. She has a track record of – mostly qualitative – research on health-related issues, including breast cancer, healthcare communication and dementia. Her current interests are focused on end-of-life issues, particularly Advance Decisions to Refuse Treatment, and she is co-founder of the charity, Advance Decisions Assistance (ADA).
Marie-Claire Alfonso and Charlotte Bailey
(Cardiff University School of Journalism, Media and Culture)
Marie-Claire Alfonso and Charlotte Bailey are undergraduate at the School of Journalism, Media and Culture at Cardiff University and is joining us on research placement. Marie-Claire has looked at the ‘right-to-die’ debate at school from a moral and ethical standpoint. She is interested in looking into how the press reports on legal cases, especially from a human rights and civil liberties perspective.Charlotte previously studied issues surrounding end of life at A Level and undergraduate level. She is particularly interested in the representations of co-called ‘right-to-die’ debates in the media, including dramatisations through film and popular culture. They are part of a CDoC team looking at the coverage of court cases about life-sustaining treatment.