The gap between the supply of organs required for transplant for people on the waiting list and the number donated in the UK is increasing. It is particularly significant for members of ethnic minority populations.
We are finding out why people from Black, Asian and minority ethnic backgrounds give or refuse their consent to organ donation. We are sharing our findings with NHS Blood and Transplant. This will support their efforts to improve access to matched organs for more people from a BAME background who need a transplant.
This evidence synthesis project ran from January to September 2019. The National Institute for Health Research (NIHR) and NHS Blood and Transplant (NHS BT) provided funding.
We have developed positive links to key stakeholders. We did this by reaching out to:
- local community groups, including HAREF (Health and Race Equality Forum)
- members of the public
- public health bodies
- researchers, clinicians and students
The Project Advisory Group were also instrumental in developing links.
We have started sharing our findings and welcome interest from colleagues or external partners. Jenny Hasenfuss is the NIHR BTRU Organ Donation and Transplantation (ODT) Public and Patient Involvement and Engagement (PPIE) Lead. Based at Newcastle University, Jenny hopes to link up with individuals and community groups. She will share project findings and encourage interest in health research, and the idea of public and patient engagement.
Organ donation is a precious gift
The circumstances in which someone can be a donor are very specific. They accounted for only 0.5% of deaths in the UK in 2017/18. Blood type and tissue types are very important in ensuring a suitable match for an organ transplant. Some blood groups such as O Rhesus positive are more frequent among Black, Asian and minority ethnic (BAME) communities. Some rare blood types are only found within people from BAME communities.
We updated two previous systematic reviews. We hosted two public discussion groups in Newcastle, with people from BAME backgrounds. The groups critiqued the evidence resulting from the reviews about barriers and interventions to address them.
We used the COM-B model from the Behaviour Change Wheel (BCW) to map elements of Capacity, Opportunity and Motivation to address the barriers and change Behaviour. We linked these elements to potentially effective ‘intervention functions’ using the BCW. We looked for systematic review evidence for the effectiveness of these intervention functions across other areas of healthcare. Two further discussion groups in London critiqued examples of interventions.
Key findings
Registering for organ donation should be seen as a pathway. There is a need for awareness-raising interventions for people early in the pathway. There should also be individually targeted interventions for those who are considering joining the register.
We identified three key factors as vital components of interventions:
- trust
- difficult conversations – for example, relating to loss, bereavement, and the precious gift of organ donation to another family
- community engagement
The best evidence synthesis found a range of existing educational interventions for improving communication in families. It also provided a range of strategies for engaging communities and maintaining involvement. We found little systematic review evidence about increasing trust in an organisation.
The phrase ‘people from BAME backgrounds’ encompasses a very diverse mix of people. They may be from very different ethnic, religious, cultural and migrant backgrounds. It is inappropriate to assume similarities in outlook or opinion based only on a person’s ethnicity. Thus, interventions should not solely target ethnicity. We need to consider this ‘BAME’ construct in more depth in future research projects. We need to address ideas of intersectionality, social construction of race, cross-cultural communications and privilege.
The research team includes Dr Chris Marshall, Madeleine Still, Jenny Hasenfuss, Akvile Stoniute, Jodie Crooks, Prof Dawn Craig, Prof Falko Sniehotta, Prof Catherine Exley, Prof Andrew Fisher and Fiona Beyer.
Advisory Group
- NHS BT Research and Development Assistant Director Nick Watkins
- NHS BT Statistics Rachel Johnson
- Ammar Mirza CBE
The project team are grateful for the support and guidance shared by various colleagues. Special thanks go to Vijaya Kotur, Kelechie Dibie, the Newcastle University BAME staff network, Advisory Group member Ammar Mirza, facilitator Barbara Armstrong and to Jan Legge and Eugenie Johnson for their administrative support.
