ACADEMICS in York have helped create a new resource for helping the families of people with severe brain injuries.

The online resource features more than 250 interview films looking at the family experiences of having a relative in a vegetative or minimally conscious state, the choices and medical treatment, and decision making they must carry out.

The resource has been compiled by Professor Celia Kitzinger, of the Department of Sociology at York, and Jenny Kitzinger, Professor at Cardiff University’s School of Journalism, Media and Cultural Studies.

Prof Celia Kitzinger said: "Our research revealed some key areas in which we need improvements in the health service. Firstly, we found that although the law states that doctors, not family members, are responsible for making serious medical decisions about severely brain injured patients, many family members had never been told this, and felt burdened by guilt and responsibility.

"Secondly, many family members had never been asked about the patient’s personal wishes, values and beliefs, meaning that doctors cannot make ‘person-centred’ decisions concerning the patient. Lastly, we found inevitable distress caused by their relatives’ catastrophic injuries was sometimes exacerbated by subsequent treatment, and families often felt that concerns raised were seen as something that could be addressed by counselling or psychiatric support, rather than changing what was happening."

The academics are co-directors of the York-Cardiff Chronic Disorders of Consciousness Research Centre, and their research has been made into a new section on the award-winning charity website healthtalk.org which is due to launch tomorrow.

The resource is the result of almost four years of research, with interviews from 65 different family members and talks from leading medical experts in the field of serious brain injury.

Professor Jenny Kitzinger said: "The families who spoke with us, and agreed to be filmed for the site, have been extraordinarily generous in sharing their experiences. They have talked with great honesty and openness in the hope that this will help other families, or allow people to feel less isolated with the difficulties and dilemmas they face. Families who have lived with this devastating situation often had suggestions about how friends and society in general could help, as well as posing some challenging questions for health care professionals and policy-makers."