Eye Donation from Palliative care and Hospice care settings
Research type
Research Study
Full title
Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions.
IRAS ID
256351
Contact name
Tracy Long-Sutehall
Contact email
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Why is this research needed?
According to the Royal National Institute of Blind people (RNIB) over two million people in the UK are living with sight loss and this number is predicted to double to nearly four million by 2050. Some of the conditions that lead to sight loss and impaired vision can be treated if eye tissue is available, for example, by corneal transplantation and reconstructive surgery, alongside research into a wide variety of eye disease. The problem is that of all organs and tissues that can be donated, eyes are the least donated meaning that NHS Tissue Services (TS) who oversee eye donation (ED) in the UK are not able to supply enough tissue so that the reportedly needed 5000 corneal transplants can be undertaken. In the year 2015-2016 only 2,897 eyes were donated.Why is there a shortage? We know that people hold very strong views about donating their eyes. They are concerned about disfigurement and view eyes as the windows to the soul. We also know people are squeamish about the idea of ED. In addition, health care professionals (HCPs) are reluctant to discuss the option of ED. This reluctance appears to be linked to views about what should/should not be discussed with people during end-of-life care planning (EoLCP). We know that the majority of people who die in the UK could donate their eyes as long as certain criteria is met and yet most people have very little knowledge about the option of ED.
What are we not so sure about? What we need to know is whether an increase in eye donation could be achieved by developing new routes of supply by approaching people in specialist palliative care settings (SPCS) and Hospice Care settings (HCS) who have the potential to be eye donors after their death. We also need to know whether patients would be willing to donate their eyes and how they and their family members feel about discussing ED. This information is essential to NHS Tissue Services as they shape future service plans.REC name
Social Care REC
REC reference
19/IEC08/0008
Date of REC Opinion
16 May 2019
REC opinion
Further Information Favourable Opinion