A unique online resource is being launched today for family members and others involved in the care of people with severe forms of brain injury.
Featuring over 250 in-depth interview film clips, the resource explores family experiences of having a relative in a vegetative or minimally conscious state, explains key terms, reflects on the challenging choices families confront and outlines the clinical and legal context of decision-making about medical treatment.
Housed within the University of Oxford’s Healthtalk.org, the website is NHS accredited and created by the DIPEx charity with more than 3 million hits a year, and also used as a teaching material in 80% of UK medical schools.
Funded by the Economic and Social Research Council (ESRC), the material has been compiled by Professor Celia Kitzinger and Professor Jenny Kitzinger, Co-Directors of the York-Cardiff Chronic Disorders of Consciousness Research Centre. The new module presents findings from almost four years of research, featuring interviews with 65 different family members in addition to talks from leading medical practitioners in the field of serious brain injury.
The aim of the module is to provide support and information for families, health professionals, case workers, lawyers and others involved in work with this group of patients. Helping to improve communication between medical practitioners and family members, it will also be useful in professional training for those working within health services and law, and for journalists reporting on issues around ‘coma’.
Healthtalk.org is a partnership between the DIPEx charity and the Nuffield Department of Primary Care Health Sciences’ Health Experiences Research Group.