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York and Cardiff academics launch new resource for family members of people in vegetative or minimally conscious states

Posted on 15 September 2014

A unique online resource for family members and others involved in the care of people with severe forms of brain injury is to be launched this week.

Featuring over 250 in-depth interview film clips, the resource explores family experiences of having a relative in a vegetative or minimally conscious state. It explains key terms, reflects on the challenging choices families confront and outlines the clinical and legal context of decision-making about medical treatment.

Compiled by Professor Celia Kitzinger and Professor Jenny Kitzinger, Co-Directors of the York-Cardiff Chronic Disorders of Consciousness Research Centre, the research has been made into a new section on the award-winning charity website healthtalk.org, due to launch in London on 17 September.

Funded by the Economic and Social Research Council (ESRC) and the Health Experiences Research Group (HERG), Department of Primary Care Health Sciences, University of Oxford, the resource presents findings from nearly four years’ research, featuring interviews with 65 different family members as well as talks from leading medical practitioners in the field of serious brain injury.

This new section of healthtalk.org will provide support and information for families, health professionals, case workers, lawyers and others involved in work with this group of patients. Helping to improve communication between medical practitioners and family members, it will also be useful in professional training for those working within health services and law, and for journalists reporting on issues around ‘coma’.

Jenny Kitzinger, Professor at Cardiff University’s School of Journalism, Media and Cultural Studies, said: “The families who spoke with us, and agreed to be filmed for the site, have been extraordinarily generous in sharing their experiences. They have talked with great honesty and openness in the hope that this will help other families, or allow people to feel less isolated with the difficulties and dilemmas they face. Families who have lived with this devastating situation often had suggestions about how friends and society in general could help, as well as posing some challenging questions for health care professionals and policy-makers – and, indeed, journalists reporting on this issue.”

“With the help of an advisory group including representatives from the brain injury charity, Headway, expert practitioners in critical care and rehabilitation, plus family representatives, we hope that this new online resource will be invaluable in improving communication between family members and health practitioners.”

Professor Celia Kitzinger, of the Department of Sociology at York, said: “Our research revealed some key areas in which we need improvements in the health service.  Firstly, we found that although the law states that doctors, not family members, are responsible for making serious medical decisions about severely brain injured patients, many family members had never been told this, and felt burdened by guilt and responsibility.  Secondly, many family members had never been asked about the patient’s personal wishes, values and beliefs, meaning that doctors cannot make ‘person-centered’ decisions concerning the patient.

“Lastly, we found inevitable distress caused by their relatives’ catastrophic injuries was sometimes exacerbated by subsequent treatment, and families often felt that concerns raised were seen as something that could be addressed by counselling or psychiatric support, rather than changing what was happening.”

Gunars Libeks, a contributor to the resource whose sister was in a permanent vegetative state, said: “The main reason for participating in this project has been to ensure that no other family in the future has to start with a blank sheet of paper. In our case, for a period of 36 months, we as a family did not manage the best interests of my sister and neither did the medical professionals.”

His partner, Margaret,  added: “The frustration, anger and family tensions caused by the struggle of the previous four years was replaced for us by the very positive experience of being involved with the advisory group for this project.”

Professor Derick Wade, a neuro-rehabilitation consultant from the Oxford Centre for Enablement, said: “It is an excellent website and should be the resource for Health Care professionals, including managers and commissioners, because it covers all aspects and presents most of the possible points of view. It is well laid out and can be read, listened to and looked at in small bits easily.”

Healthtalk.org is a charity website accredited by the Department of Health’s Information Standard for health information the public can trust. The website provides information and support for 85 health conditions, to over two million people per year. Patient experience videos from the website are used as teaching materials in more than 80% of UK medical schools.

Formally launched with an event from 4-7pm on 17 September at Winchester House, London, speakers will include Professor Jenny Kitzinger, Professor Celia Kitzinger, Professor Lynne Turner-Stokes, Chair of the Royal College of Physicians’ working party that wrote the national clinical guidelines for the treatment of prolonged disorders of consciousness, and Professor David Menon, Head of the Division of Anaesthesia at the University of Cambridge. Guests attending include family members involved in the project, clinicians, practitioners, charity representatives and health correspondents.

An exhibition featuring artwork, poems and postcards from family members will also be on display during a drinks reception.  Entry is free but strictly by ticket only. For further details and to register for the event, visit: https://www.eventbrite.co.uk/e/family-experiences-of-vegetative-and-minimally-conscious-states-tickets-12508771071.

Further information:

  • ‘Family experiences of vegetative and minimally conscious states’ is live at http://healthtalkonline.org/peoples-experiences/nerves-brain. A two minute montage introduction to the project is available at https://www.eventbrite.co.uk/e/family-experiences-of-vegetative-and-minimally-conscious-states-tickets-12508771071
  • Background research for the resource was funded by the Wellcome Trust and the launch is funded by The University of York’s Centre for Chronic Diseases and Disorders (C2D2). For more information about both, visit: http://www.wellcome.ac.uk/ and http://www.york.ac.uk/c2d2/
  • For more information about the Department of Sociology at the University of York, please visit: http://www.york.ac.uk/sociology/
  • The York-Cardiff Chronic Disorders of Consciousness Research Centre is a multi-disciplinary group of researchers exploring the cultural, ethical, legal, social and historical dimensions of Chronic Disorders of Consciousness: coma, the vegetative and the minimally conscious state. The vegetative state is when a patient has no awareness of themselves or their environment. The ‘minimally conscious state’ is when the patient has some minimal and inconsistent awareness. For further information, visit: http://cdoc.org.uk/
  • Healthtalk.org comes from a partnership between The DIPEx charity and The Health Experiences Research Group or ‘HERG’ at the University of Oxford’s Nuffield Department of Primary Care Health Sciences.
     
    Healthtalk.org was created in 2001 by Oxford GP Dr Ann McPherson CBE and Dr Andrew Herxheimer after their own experiences of illness.  A small group of people from various backgrounds formed a steering group and the idea developed into a website that later became www.healthtalk.org.
  • The Economic and Social Research Council (ESRC) is the UK's largest organisation for funding research on economic and social issues. They support independent, high quality research which has an impact on business, the public sector and the third sector. For more information, visit: http://www.esrc.ac.uk/
  • Headway is UK-wide charity that works to improve life after brain injury. Through a range of frontline services run from its Nottingham base and via a network of more than 100 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields. For further information, visit: https://www.headway.org.uk/home.aspx

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