Professors Jenny Kitzinger and Celia Kitzinger have created a much-needed online resource supporting relatives of patients in long-term coma states.

Impacts

  • Developed from research by Professor Jenny Kitzinger and Professor Celia Kitzinger, the healthtalk.org online resource has provided information and support to more than 4,000 visitors including solicitors and health professionals as well as family members with relatives in a coma, vegetative or minimally conscious state.
  • Training sessions based on the online resource have been delivered in hospitals, rehabilitation centres and care homes, improving communication and decision-making between professionals and family members.
  • The research directly informed the Royal College of Physicians' National Clinical Guidelines on Prolonged Disorders of Consciousness and led to the inclusion of specific guidelines on the family's role in decision-making and guidance for clinicians and families about the law.
  • The research findings were cited in recommendations by the House of Lords Select Committee on the Mental Capacity Act 2005 and informed briefing information produced by the Parliamentary Office of Science and Technology.
  • The work has transformed thinking on 'coma' by offering more nuanced representations of the vegetative/minimally conscious state through, for example, the Radio 3 programme Coma Songs (co-produced by Jenny Kitzinger), which reached 59,000 listeners.

"[This resource] should be *the* resource for Health Care professionals, including managers and commissioners, because it covers all aspects and presents most of the possible points of view." (Professor Derick Wade, Consultant in Neurological Rehabilitation, Oxford Centre for Enablement)

About the research

In 2009, the researchers' sister Polly Kitzinger was severely brain injured in a car accident. "It was this personal experience combined with talking to other families on the hospital ward and discovering the shortage of reliable information that led us to research this area," Professor Jenny Kitzinger of Cardiff University explains.

Up to 64,000 people in the UK are in either a prolonged vegetative or minimally conscious state. Many of these patients' relatives are struggling with feelings of isolation, guilt and confusion as well as incorrect legal guidance, poor information and inadequate support, according to the Kitzingers' research. The online resource arose out of this research and was developed working in partnership with Sue Ziebland from the Health Experience Research Group, Oxford University and the DIPEx charity.

The resource development advisory group included representatives from the brain injury charity Headway, family members, and health professionals from intensive care and neuro-rehabilitation.  

"The strength of this online resource is that it consists of more than 250 film clips of family members talking about what it is like to have a relative in a vegetative or minimally conscious state and explores the issues they find most challenging," says Professor Celia Kitzinger.

Professor Jenny Kitzinger adds: "The highly personal experiences and thoughts described by relatives in this resource are proving key to helping people cope with, and feel proud of, how they are managing a very difficult situation. It also helps inform and challenge health care professionals working with in this field."