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Chronic Disorders of Consciousness Group

Key Staff: Professor Jenny Kitzinger (School of Journalism, Media and Cultural Studies, Director), Prof. Ruth Chadwick (Philosophy), Prof. Luke Clements (Law), Prof. Keir Waddington (History), Dr Andrew Edgar (Philosophy)

Associates: Dr Ben Saunders (Sociology, University of York); Dr Gabby Samuels (Brunel) and Julie Latchem (Sociology, Cardiff University)

Advisory Group: Prof Phil Fennel (Law), Prof Frank Sengpiel (Neuorscience), Prof Daniel Kelly (Nursing)

chronicdisordersofconsciousness We are a multi-disciplinary group of researchers studying chronic disorders of consciousness. We aim to contribute a scholarly exploration of key issues in the field, designed to impact upon professionals, service-users and their families.

We are working on a data set of over 40 interviews with family members of people in prolonged comas, vegetative or minimally conscious states following severe brain injury.

We are also analysing interviews exploring relatives’ views on emerging neuro-technologies and analysing interviews and focus groups with families exploring what they consider important in the long term care provided to severely brain injured patients.

Our key research questions include:

  1. What is the dominant cultural understanding of coma and brain injury and what role is played by such media/cultural representation in family decision-making and in broad social debate about appropriate responses?
  2. How do families with a relative diagnosed as vegetative or minimally conscious make sense of the claims about emerging neuro-technolgies publicised in the media (e.g. fMRI scanning and deep brain stimulation)?
  3. How do families faced with the profound challenges associated with disorders of consciousness conceptualise the ethical issues involved around care and treatment decisions?
  4. How do families experience the process of ‘best interests’ decision-making led by clinicians, and how does this accord (or not) with the Mental Capacity Act 2005?
  5. What kind of provision and support do families think is needed in the long term care setting?
  6. How does the design of hospitals and the cultural associations with such buildings inflect interviewees’ accounts of their experiences? What do their narratives tell us about alienation from, or involvement in, the treatment process? How does this fit with the history of the development of medical institutions and different sites of treatment?

Recent Publications

Kitzinger, Jenny and Kitzinger, Celia. 2012. The 'window of opportunity' for death after severe brain injury: Family experiences. Sociology of Health and Illness doi: 10.1111/1467-9566.12020

The 'window of opportunity' for death after severe brain injury...

We are working collaboratively with the York Chronic Disorders of Consciousness Group, directed by Professor Celia Kitzinger at University of York. You can learn more about our research from this video. For further info. contact: Prof. Jenny Kitzinger, Chronic Disorders of Consciousness Group, Cardiff University, School of Journalism, Media and Cultural Studies, Bute Building, King Edward VII Avenue, Cardiff CF10 3NB.