“Creating a web resource for families of vegetative and minimally conscious patients”.
This ESRC knowledge exchange project allowed us to further develop and translate the research from the Coma and Disorders of Consciousness Research Centre into a new module for the award winning healthtalk.org site, launched in Autumn 2014 (Launch event). We used 250 clips from filmed interviews with clinicians and with family members with a relative in a vegetative or minimally conscious state to explore 30 key themes, including addressing some of the problems and gaps we identified in service delivery. The themes include, for example, ‘Impact on the family’, ‘Long-term care’, ‘Decision-making about serious medical treatment’, ‘Recovery’ and ‘Death and dying’. The resource is designed to provide support and information for families, health professionals, case workers etc., and to help communication between them. It won an ESRC award for Impact on Society and a BMA award for information about ethical issues and has been used by over 48,000 users.
- Visit the resource here
- To publicise the resource (e.g. in a rehab or care centre) download the poster: Healthtalk Poster
- You can see a few examples of the interviews below
Award Holders: Professor Jenny Kitzinger (Cardiff University) and Professor Celia Kitzinger, in collaboration with Dr Sue Ziebland (Oxford University)
Award Date: February 2013 – August 2014
Funder: ESRC Knowledge Exchange grant [ES/K00560X/1], and DIPEx charity and Health Experience Research Group, Oxford University