New study seeks deeper understanding of bereaved families’ attitudes to organ donation

Researchers at the University of Southampton are looking for people to take part in a major new study into organ donation. The national study will look at the decision-making and experiences of bereaved people who after the death of a family member chose not to donate organs or tissues of the deceased relative for transplant operations.

Little is known about how families who do not donate experience the donation process. This means that issues such as how families deal with the untimely death of a much-loved family member and having organ donation discussed with them is not well understood. This lack of understanding has implications for the provision and support that can be offered to bereaved families.

The study is expected to highlight the needs of relatives throughout their donation decision-making and bereavement. The results will help to develop more effective services for families whose relatives die in hospital, as well as further training for health professionals and volunteers involved.

Led by Dr Magi Sque, a Senior Lecturer in the University’s School of Nursing and Midwifery, the team is launching a radio and newspaper advertising campaign to recruit family members willing to talk about their experiences. Family members will also be recruited via three NHS Trusts.

Dr Sque explains: ‘By learning about individual hospital experiences and other issues of concern relating to bereavement, we hope to find out more about the special care that may be required by relatives at the time of death, at the discussion about organ donation and over the months that follow.

‘We will be specifically looking at issues such as the impact of hospital care and bereavement on a family’s life, and the good and bad points of hospital care when
talking about donation and possible choices. We would also like to find out whether hospital staff respected religious and other beliefs and what support was offered during and after the hospital stay, including the availability of bereavement counselling,’ she added.

This new study follows a comprehensive three–year study by Dr Sque and her team, which was completed in 2003 and provided insights into the bereavement of families who chose to donate organs.

People recruited to the study will be invited to talk to a trained interviewer about their experiences. Anyone interested in finding out more about the study or in taking part should contact Research Fellow Diana Allardyce at the University of Southampton on 023 8059 8231 or email d.allardyce@soton.ac.uk. A website about the study has been set up at www.nursingandmidwifery.soton.ac.uk/familybereavement

Dr Sque’s co-researchers are Tracy Long, Senior Research Fellow in the University of Southampton’s School of Nursing and Midwifery and Professor Sheila Payne of the Palliative and End of Life Care Research Group at the University of Sheffield. The study has been commissioned by UK Transplant (NHS) and results will be available at the end of 2005.

Currently in the UK, organ transplantation is limited by the low number of organs donated. In 2003, 772 individuals became major organ donors although over 6,000 people are still waiting for suitable organs. Around 42% of families who are asked to donate organs refuse and this rate rises to 77% among the non-white population.