Brief Report
The project involved interviewing families who had agreed to organ and/or tissue donation and families who had declined (non-donor families). The intention was for each family to be interviewed each year over a period of three years to investigate how their attitudes and feelings changed over that period. They were also asked to take part in tests to assess their grief responses and levels of depression. The Principle Investigator was Dr Magi Sque and the Research Fellow was Tracy Long who has very relevant experience in supporting recipient patients and their families. Prof Sheila Payne was Consultant Principle Investigator and there was an Advisory Panel consisting of health and academic professionals and donor families.
Research commenced in February 2000 and with the co-operation of medical staff was very successful in identifying donor families who were pleased to contribute. Unfortunately identifying non-donor families was unsuccessful. Even widening ethics approval to the whole country did not facilitate a satisfactory number. It was difficult to identify these families as most units did not have records and even when identified there was a natural reluctance to participate.
The project was completed in February 2003 and the Executive Summary is available via this web link or files below. It is interesting to note that none of the donor families taking part in the project regretted their decision at any time. However several requirements were identified which can be acted on by those involved with donor families - one of which is the need to involve voluntary organisations.
Because of the lack of families who had declined donation there was grant money left at the end of the project. The Community Fund has agreed, subject to ethics approval, that this money can be used for a pilot scheme to try to identify ‘non-donor’ families. To satisfy the scientific requirements of the original project these families had to be identified by the same means as the donor families ie by hospital referral and over the same time scale. It is now intended to try to reach families via the media. If successful funding will be sought for a one or two year project.
BODY would like to thank everyone involved in the project - the National Lottery Community Fund for funding the Research Project - the Project Team and the staff involved of both the Universities of Surrey and Southampton - the Consultant Principle Investigator, the Advisory Panel, all contributing hospitals and most of all the bereaved families who contributed so willingly.
Executive Summary: WORD document (45K bytes), PDF document (135K bytes).
Final Report: Contents WORD document (38K bytes) and Main Report WORD document (514K bytes),
Contents PDF document (90K bytes) and Main Report PDF document (777K bytes).
For completion, image files are included to complete the published A4 paper size Final Report:
Front Cover (155K bytes), Flyleaf (37K bytes), Contents, Main Report, Appendix leaf (36K bytes) before Appendices in Main report, Back Cover (119K bytes).
NOTE: The PDF file documents are almost identical to the published copy. On some pages some words are carried over to the next page. However whilst the Word file documents have all the text and data, some pages are mis-formatted.
