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Chronic Disorders of Consciousness Research Centre


Chronic Disorders of Consciousness Research Centre

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.

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 'read' brain scans and make sense of the claims about emerging neuro-technologies publicised in the media (e.g. fMRI 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? What is the role of care staff, pharmacist and other health care professionals?
  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?

Here Jenny Kitzinger discusses the role of the family in serious medical treatment decisions. She introduces a new booklet for families and clinicians to help inform decision-making. The booklet is available free from www.rcplondon.ac.uk/pdoc/family

Recent Funded Projects

Vegetative and minimally conscious states: Creating a web resource for families of severely brain injured patients