We are now able to share some of the key findings and insights which will help DKMS develop a strategy to increase the representation and retention of particular ethnic minority communities on the stem cell donor database.
We conducted mixed-methods research involving 40 in-depth interviews with non-registered donors from Black African, Black Caribbean, Bangladeshi, Chinese and Pakistani communities. This qualitative research informed the design of an online survey with 235 of DKMS’s current registered donors from the Asian and Turkish communities, to gauge awareness and attitudes towards blood cancer and stem cell donation.
Key findings: Awareness
Many people we consulted from ethnic minority backgrounds have very little awareness, knowledge and understanding of blood cancer, not knowing that people can help save lives by donating blood stem cells. There is uncertainty about what stem cell donation involves and what the side-effects are, and there is a lack of knowledge about the shortage of donors amongst certain ethnic minority communities.
This lack of awareness and knowledge prevents people from ethnic minority communities signing up to become a donor, with key concerns being:
● Fear of side effects/risks (52%)
● Not knowing enough about the procedure (40%)
● Poor health (30%)
● If needing to stay in hospital (30%)
● If you need to be put under general anesthesia (30%).
“Not knowing what I would be signing up for. Pain and discomfort. Process not being transparent and lack of information on what could go wrong with me.” quote from a research participant
Lack of awareness about what the stem cell donation procedure involves is another barrier, with key questions being:
● How long does it take to recover (80%)
● Are there any side effects/risks (79%)
● What are the methods of donation (69%)
● How long will the donation take (66%)
● How far do I need to travel (54%)
● Would I need time off work (53%).
Key findings: Motivation
Our research found that people were genuinely surprised to learn that there was a shortage of donors in their community and that they could save lives by donating their blood stem cells. They were also surprised to learn other facts about stem cell donation such as it is safe to donate, that a match is more likely amongst those of the same ethnic group, and that for some patients with blood cancer a stem cell donation is the only way to cure it.
To engage potential donors, there needs to be reassurance about the process of becoming a donor and a need to highlight the benefits to the community of doing so.
Key messages that could encourage more potential donors to register are:
● They could be a lifesaver
● It is safe to donate
● Their community is in need of donors
● Positive stories and testimonials from donors and recipients within their own community
● News about blood cancer, including research and treatment
Our research has helped DKMS to identify that a lack of awareness is contributing to a shortage of donors from ethnic minority groups on the register, and we have recommended actions to help DKMS maintain engagement amongst existing donors already on the register.
Our recommendations have focused on raising the profile of blood cancer and stem cell donation whilst providing reassurance about what this involves, and the importance of highlighting that donation could help save someone’s life.
DKMS will take forward these findings and use them to inform their communications and engagement strategy, to ensure it is evidence-based.
If you have a similar project that you wish to discuss with us, please contact Anne Forshaw, Research Director, on 0121 604 4664 or via email@example.com
Register to be a donor: To check your eligibility and how to become a blood stem cell donor, please go to DKMS’s website for more details.