BAME Organ Donation 2014
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BAME Organ Donation 2014 Gaining a deeper understanding of attitudes, cultural and lifestyle influences and behaviours towards organ donation within BAME communities in the UK FINAL REPORT Prepared for: NHS Blood and Transplant Prepared by: Optimisa Research www.optimisaresearch.com Contents 1 Introduction.............................................................................5 1.1.1 Key findings from the research .................................................................................5 1.1.2 Four key principles underpin any organ donation campaign....................................7 2 Background..............................................................................8 3 The project objectives............................................................11 4 Methodology .........................................................................12 1. The ‘Explore and build’ stage ..................................................................................12 2. Groups.....................................................................................................................12 3. Depth interviews .....................................................................................................13 4. The ‘Measure’ Stage................................................................................................14 5 Current attitudes to organ donation ......................................17 6 Opportunities for behavioural change in organ donation.......29 7 Information and influence channels.......................................35 8 Driving a change in attitudes to organ donation.....................38 9 Four key principles for any organ donation campaign ............49 10 Conclusions............................................................................51 11 Recommendations .................................................................53 12 Appendix ...............................................................................56 Job number 2 CONFIDENTIAL Optimisa Research Table of Figures Figure 1: Ethnic breakdown amongst religions based on 2011 Census data................. 12 Figure 2: Sample structure of group discussions............................................................ 13 Figure 3: Sample structure of depth interviews............................................................. 14 Figure 4: Ethnic breakdown of interviews achieved versus 2011 Census data ............. 14 Figure 5: Age profile of interviews achieved versus 2011 Census data ......................... 15 Figure 6: Proportion of interviewees stating a religion versus 2011 Census data......... 15 Figure 7: Religious profile of interviews achieved versus 2011 Census data................. 16 Figure 8: Support for organ donation in principle and willingness to donate own organs ........................................................................................................................................ 17 Figure 9: Getting BAME audiences to talk about organ donation is a key challenge .... 19 Figure 10: Getting BAME audiences to talk about organ donation is a key challenge .. 20 Figure 11: Pakistani and Bangladeshi groups less likely to support organ donation in principle.......................................................................................................................... 22 Figure 12: Pakistani and Bangladeshi groups more likely to think organ donation is against religion ............................................................................................................... 23 Figure 13: For Muslims, the influence of religion on decisions around organ donation is stronger than for other faiths......................................................................................... 24 Figure 14: Religious and cultural beliefs and traditions around death are passed down through generations....................................................................................................... 26 Figure 15: The influence of family on key decisions....................................................... 28 Figure 16: Hindus, Sikhs and Christians are more likely to view organ donation as a personal decision............................................................................................................ 28 Figure 17: Uncertainty around willingness to consider organ donation suggests some opening for discussion.................................................................................................... 29 Figure 18: Support and consideration for organ donation by age................................. 30 Figure 19: Multiple channels likely to be consulted for more information on organ donation ......................................................................................................................... 31 Figure 20: The vast majority know nothing or very little about their own faith’s stance on organ donation .......................................................................................................... 31 Figure 21: Key words used by followers of different religions in the sample to describe the central tenets of their faith...................................................................................... 32 Figure 22: The importance of a local focus on charity ................................................... 33 Figure 23: The most motivating statements tended to be individual not societal........ 38 Figure 24: Guidelines for promotional messaging around organ donation................... 39 Figure 25: Faith leaders’ video and posters from a New York campaign....................... 40 Figure 26: Prove It, Save Dave, and Would you take an organ? posters ....................... 40 Figure 27: Family stories and the ‘Pass it on’ video ....................................................... 42 Figure 28: Leila video, ‘Eyes campaign and organ donation poster............................... 42 Figure 29: Donate life, ‘’Hero’ and ‘Dustbin’.................................................................. 43 Figure 30: The importance of specific ethnic references and respecting religious and cultural sensitivities........................................................................................................ 44 Figure 31: The ability of different messages to encourage or deter people from considering organ donation ........................................................................................... 46 Figure 32: The ability of different messages to encourage by ethnicity........................ 47 Job number 3 CONFIDENTIAL Optimisa Research Figure 33: Rank order appeal shows common appreciation for some of the same messages ........................................................................................................................ 47 Figure 34: Rank order of appeal of messages combined with 4 key principles for a successful campaign ....................................................................................................... 50 Job number 4 CONFIDENTIAL Optimisa Research Executive Summary 1 Introduction NHS Blood and Transplant (NHSBT) is the Special Health Authority that manages the voluntary donation system for blood, tissues, organ and stem cells across the UK. As part of this remit NHSBT is also responsible for the NHS Organ Donor Register (ODR) which is a national, confidential list of people who gare willin to become donors after their death. Despite significant increases in recent years in the number of people registering on the ODR, there is still a shortage of suitable organs and a large number of patients on the transplant waiting list. As part of ongoing initiatives to increase organ donation rates a need has been identified to engage with Black, Asian and Minority Ethnic (BAME) communities. This is vital because patients from BAME communities are more likely to need an organ transplant; a quarter of those on the waiting list are from a BAME background while representing just 12% of the UK population as a whole. This is because BAME communities are more vulnerable than non BAME communities to illnesses that can lead to organ failure. At the same time, 66% of people from BAME communities refuse permission for a family member’s organs to be donated. Organs are matched by blood group and tissue type (for kidney transplants) and the best‐matched transplants have the best outcome. Patients from the same ethnic group are more likely to be a close match. It is therefore critical that consent rates from BAME communities are increased. Research conducted in 2013 by Optimisa Research as well as previous work conducted by NHSBT and other key stakeholders including the National Black, Asian and Minority Ethnic (BAME) Transplant Alliance (NBTA) revealed a number of religious and cultural barriers within BAME communities towards organ donation. As a result, a need was identified to achieve a deeper understanding of these factors in order to inform future strategy for increasing donation and consent rates within these communities. Optimisa Research was engaged to conduct a programme of qualitative and quantitative research specifically with BAME audiences. This report sets out the findings of the 2014 BAME organ donation research. 1.1.1 Key findings from the research Levels of support for organ donation in principle are much lower than in the general population Job number 5 CONFIDENTIAL Optimisa Research 44% of those surveyed support organ donation in principle, vs. 86% in the population as a whole in the 2013