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Catastrophic brain injury patient information site recognised as a “tremendous resource”

This is a tremendous resource, grounded in real experiences and demonstrating the power of hearing other people’s experience as a way to gain deeper understanding and insight of the issues surrounding this devastating and complex condition.
- BMA category reviewer, Ms Julia Parnaby, Deputy Director, Research and Information, Alzheimer's Society.

An online information resource on healthtalk.org for families going through the trauma of catastrophic brain injury has won a British Medical Association Patient Information Award (PIA) in the “Information on Ethical Issues” category.

Entitled “Family Experiences of Vegetative and Minimally Conscious States”, the healthtalk.org project was developed as part of a collaboration between medical sociologists in Oxford University’s Health Experiences Research Group with Professor Jenny Kitzinger from Cardiff University and Professor Celia Kitzinger from the University of York. 

It wins one of 16 awards presented by the BMA at their London ceremony on 7 September.

Category reviewer, Ms Julia Parnaby – Deputy Director, Research and Information at Alzheimer’s Society, said:

“This is a tremendous resource, grounded in real experiences and demonstrating the power of hearing other people’s experience as a way to gain deeper understanding and insight of the issues surrounding this devastating and complex condition. There’s a real depth of content and exceptionally powerful testimony from numerous family members and loved ones which creates a profoundly honest and singular resource which will offer wisdom, empathy, insight, pain and support to others.  The families chosen reflect a genuinely diverse and authentic set of voices and it covers all stages and facets of this condition. In over five years of reviewing for the awards this is the best resource I have seen and I would whole-heartedly recommend it for an award.”

User experience is at the heart of the resource which includes 250 film clips from family members talking about what it is like to have a relative in a vegetative or minimally conscious state.

By providing a valuable resource for families of those going through catastrophic brain injury, the resource aims to help inform decision making on complex ethical dilemmas and support reflection. It also helps improve communication between families and clinicians, and provide vital insights of family experiences of health services to inform training, service provision, policy and practice.

Professor Sue Ziebland, Director of the Health Experiences Research Group in Oxford University’s Nuffield Department of Primary Care Health Sciences said:

“We were very pleased to work with Celia and Jenny Kitzinger to develop a new section on healthtalk.org about this topic.  Many of the family members they had interviewed had talked about their isolation, and the lack of reliable online resources to support and inform them.  This award highlights the value of patient narratives as a mechanism to support people coping with health problems. We hope that doctors and nurses will guide families to the resource, where they will be able to learn through others experiences.”

The BMA PIAs were established in 1997 to encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced patient information, reinforcing the BMA’s commitment to support educational practice and acknowledge new approaches and technologies intended for the public audience. 165 resources were submitted for consideration.

This research project was funded by:

Economic and Social Research Council, Knowledge Exchange Grant [ES/K00560X/1]
Financial support from the Health Experiences Research Group

Find out more:

BMA Patient Information Awards 2015 

Healthtalk.org: Family Experiences of Vegetative and Minimally Conscious States 

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