Supporting relatives of patients in long-term coma-like states

Jon Sutton reports on an ESRC impact prize for psychologist Professor Celia Kitzinger and her sister Professor Jenny Kitzinger.

Psychologist Professor Celia Kitzinger (University of York) has, alongside her sister Professor Jenny Kitzinger (University of Cardiff), been awarded an ESRC prize for ‘Outstanding Impact in Society’. The pair were recognised for their online resource supporting relatives of patients in long-term coma-like states.

In 2009 the researchers’ sister Polly Kitzinger was severely brain-injured in a car accident. ‘It was this personal experience combined with talking to other families on the hospital ward and discovering the shortage of reliable information that led us to research this area,’ Professor Jenny Kitzinger explains.

Working in partnership with Sue Ziebland from the Health Experience Research Group, Oxford University and the DIPEx charity, the pair set up a steering group composed of representatives from the brain injury charity Headway, family members, and health professionals from intensive care and neurorehabilitation. They interviewed 65 people with a family member in either a prolonged vegetative or minimally conscious state, discovering that family members were struggling with feelings of isolation, guilt and confusion as well as incorrect legal guidance, poor information and inadequate support.

The team put together an online resource of more than 250 film clips of family members talking about what it is like to have a relative in a vegetative or minimally conscious state (there are up to an estimated 64,000 people in the UK in long-term ‘comas’). ‘It explores the issues they find most challenging,’ says Professor Celia Kitzinger. The healthtalk.org online resource has provided information and support to thousands, and led to training sessions in hospitals, rehabilitation centres and care homes. The research directly informed the Royal College of Physicians’ National Clinical Guidelines on Prolonged Disorders of Consciousness and led to the inclusion of specific guidelines on the family's role in decision making and guidance for clinicians and families about the law. The findings were cited in recommendations by the House of Lords Select Committee on the Mental Capacity Act 2005, and transformed thinking on ‘coma’ by offering more nuanced representations of the vegetative/minimally conscious state through, for example, the Radio 3 programme Coma Songs (co-produced by Jenny Kitzinger), which reached 59,000 listeners.

‘We are concerned to ensure the highest-quality support for family members of people in long-term vegetative and minimally conscious states,’ Professor Celia Kitzinger told us. ‘Family members often feel tremendous grief and despair about their relative’s situation and some are also very angry at the healthcare system that has created it. Expression of these feelings tends to be viewed as evidence of pathology – “prolonged grief disorder”, “traumatic stress disorder”, et cetera – to be “treated” by psychologists or counsellors, who can unwittingly become involved in “managing difficult families” rather than helping families to address the medical, legal and social contexts which create many of the problems in the first place.’ The sisters have run many training sessions with healthcare professionals to help them to understand and engage productively with family members in counselling settings, best interests meetings, and at the bedside.

In September, Celia Kitzinger was also awarded first prize for 'Information on Ethical Issues' at the British Medical Association (BMA) Patient Information Awards. The awards encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced patient information. The reviewer for the BMA praised Professor Kitzinger’s team for creating: ‘a profoundly honest and singular resource which will offer wisdom, empathy, insight…and support to others…of great value to both families and clinicians', adding: 'In over five years of reviewing for the awards this is the best resource I have seen'.

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