Support for ‘coma’ families wins innovation award

Research into how best to support families of loved ones with severe brain injuries has been recognised with a Cardiff University innovation award

Work by Professor Jenny Kitzinger (Cardiff University) and her sister and colleague Professor Celia Kitzinger (University of York) translated accounts of catastrophic brain injury into a multi-media online support/training resource.

The pioneering study has picked up the Innovation Policy Award at the University's annual Innovation and Impact Awards, sponsored by leading law firm Geldards and the IP Group.  The research was inspired by the difficulties confronted by the lead researchers after their sister, Polly, suffered severe brain injuries in a car accident near Brecon in 2009.

The two academics conducted interviews with 65 family members and published findings in key academic and practitioner journals. The work shaped new National Clinical guidelines published by the Royal College of Physicians (RCP) and has been cited in a House of Lords report on the Mental Capacity Act and in a briefing document for the Parliamentary Office of Science and Technology.

Working with the health charity DIPEx and The Health Experiences Research Group (at The University of Oxford's Nuffield Department of Primary Care), the team created an online resource for healthtalk.org called "Family Experiences of Vegetative and Minimally Conscious States". The website uses film clips from ESRC-funded interviews with families and practitioners, alongside accessible information about key issues and their legal/clinical context. Launched last September, the module has already received more than 4,000 visitors.

The research led to collaborations with artists and the art will be on display the Hayden Ellis building on 22^nd of June.  It was also used to create a programme for  BBC Radio 3 ( 'Coma Songs') which used  poetry, words and music to explore the social, ethical, clinical and legal dilemmas  created by modern medicine's ability to save the body but not restore the brain.

Professor Jenny Kitzinger said: "The recognition this Award brings is particularly poignant for Celia and me. After Polly's car crash, we faced the stark reality of having a relative with catastrophic brain injuries. Our research set out to challenge stereotypes of 'coma,' and expand understanding of vegetative and minimally conscious states."

Professor Celia Kitzinger continued: "We used accounts from patients and carers to increase dialogue between practitioner and 'lay' perspectives. The online multimedia resource – featuring films, diaries and photographs - helped to make our findings accessible and engaging."

Luís Carrasqueiro, Chief Executive of the charity DIPEx who publish healthtalk.org, noted that "The personal passion of Jenny and Celia as champions linking academic research and the real world of family members, the public, politicians and decision-makers, made this a unique project and has allowed us to explore a new model of funding and collaboration, using matched donations of time, effort and money between the partners."

 Professor Lynne Turner-Stokes, who chaired the RCP Working Party, praised the research and the healthtalk module as a really important resource, both for families and clinicians: "it was extremely informative to the guidelines because it brought the family perspective which is, of course, so important."

The award was presented to Professor Jenny Kitzinger (School of Journalism, Media and Cultural Studies) and Luis Carrasqueiro (DIPEx) by Andrew Evans, Partner, Geldards Law Firm.