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The University of Southampton
Health Sciences

Improving the consent process for organ and tissue donation

There is a continuing low consent rate for organ and tissue donation in the UK, with the gap between the number of organs needed for life saving transplant operations and the number of organs available increasing.  University of Southampton academics are engaged in organ and tissue donation research that aims to identify those factors that impact on the decision making of bereaved family members approached to consider organ and tissue donation. Findings from this extensive body of work are now embedded in NICE guidance, national clinical practice guidelines and public awareness initiatives. 

Improving the descision-making process for bereaved families
Organ donation

Research challenge

Three people die each day waiting for an organ donor and approximately 8,000 people are on the active waiting list for an organ. The decision making process underpinning consent is known to be a critical factor in the supply of organs and tissues available for use in transplant operations and research focused on developing new treatments and medications available to the NHS.

Context

Despite public support for the idea of organ and tissue donation, the UK lags behind much of Europe and the USA in the number of family members agreeing to donation. Approximately 40% of family members currently decline organ donation requests after the death of a family member, rising to 70% among ethnic groups. For tissue donation, where public knowledge is limited, refusal rates range from 25% to 75%.

Body of work

Our first organ and tissue donation research studies broke new ground in the UK by generating new knowledge about factors impacting on the decision making of family members about organ donation, and their experiences of the process. More recent work, in partnership with NHS Blood and Transplant Tissue Services, is identifying the factors that impact on the consent process for multi tissue donation. We have completed the first study in the UK exploring issues affecting family members' decision to donate tissue - one of the few studies in the world to investigate the ‘real time' consent process as it unfolds.

Impact

The organ and tissue donation research of our academics has led to the development of theory and new knowledge which is directly impacting the service provided to over five thousand bereaved family members approached each year.

Our findings have influenced national policy and changed national practice guidelines related to the post-donation support provided by specialist nurses. On-going work is challenging the current information systems in place to facilitate donation and is regularly cited internationally by clinical and academic peers.

Articles

Book Chapter

Reports

List of all staff members in
Staff MemberPrimary Position
Tracy Long-SutehallAssociate Professor
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