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
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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
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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
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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
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44% of those surveyed support organ donation in principle, vs. 86% in the population as a whole in the 2013 research 28% say they would donate or consider donating their own organs vs. 82% in the population as a whole in 2013 3% say they definitely want to donate all or some of their organs vs. 51% in the population as a whole in 2013
This fundamental difference in attitudes towards donation appears to be driven by a number of contextual factors; low general awareness, knowledge and very low levels of debate or discussion, mistrust of the medical profession, perceived or assumed religious barriers, and a range of beliefs, traditions and practices around death.
Despite 85% of those surveyed saying that the subject of organ donation has never come up, only 6% say they have never discussed it because they would feel uncomfortable discussing it. This was confirmed by the qualitative research where it was clear that in many households organ donation has simply never been on the radar. It was also clear that there is an appetite for more information about the process, the particular implications of organ donation for BAME communities and the need for consent.
The qualitative research revealed some strong beliefs that organ donation goes against the teaching of some faiths; it was also clear that in some cases this was assumed rather than known to be the case, with many individuals saying that they simply didn’t know their faith’s position on the issue. What is clear is that cultural and religious factors are closely interwoven (particularly amongst Muslim communities), and that it is difficult for individuals to identify whether organ donation is uncommon because it is prohibited on grounds of religion or because it doesn’t fit with cultural practices.
There is potential for raising awareness and starting a dialogue about organ donation
Despite some of the barriers uncovered by the research many individuals are unsure how they feel about organ donation and are open to learning more about it. Similarly, there appears to be scope for more clarity on the stance different religions have taken on the issue; 68% of Christians and 81% of Muslims say they don’t know how their religion views organ donation. Added to this, irrespective of the different levels of orthodoxy or devotion in the research, the qualitative research revealed a common desire to do good, to help others and to be a good member of the community. All of these factors suggest an opportunity to provide more information and open up
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discussions on organ donation, allowing people to make an informed choice on their personal stance towards the issue. The importance of family and community suggests that this can best be done by boosting the scope and scale of the current outreach programmes, working within communities rather than from outside the community and encouraging discussion amongst the whole family unit.
Some of the tested messages have the power to motivate and alienate in equal measure
A number of different marketing campaigns from around the world were tested in the qualitative research, and a range of communication messages were tested in the quantitative survey. The campaigns showed that targeted messages showing the positive outcomes and benefits of organ donation for families and communities are the most motivating while graphic portrayals of the shortage of organs can create negative feelings of pressure and guilt. Of the communications messages tested ‘One day it could be someone you know or love – or even you – in need of a transplant’ strongly resonated, with 72% feeling that this message would encourage them to consider and discuss organ donation.
1.1.2 Four key principles underpin any organ donation campaign It is clear from the research that achieving behavioural change in organ donation, particularly among BAME audiences with the cultural and religious influences that need to be considered, need a gradual, step by step approach. This will help individuals to make an informed choice they are comfortable with and is likely to be the most effective way to proceed. The research identified 4 key principles that can be used to create a framework to underpin different campaigns and initiatives. While these can be applied with any target audience for organ donation, there are some specific considerations when working with BAME communities:
INFORM – address some of the knowledge gaps identified: the need for organs, the importance of ethnicity in organ transplantation, consent, processes and procedures EMPOWER – give people the tools they need to seek out information and guidance from known, trusted sources and to make a personal choice ENCOURAGE – help communities to see the positive outcomes, benefits and wider consequences of organ donation INCLUDE – ensure that communications speak to the audiences they are aimed at: tailored, relevant and inclusive
The remainder of this report provides more detail on all aspects of the research.
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2 Background 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 such it ensures the safe, reliable supply of blood components, organs, stem cell and diagnostic services to hospitals in England and North Wales as well as providing tissue and solid organs to hospitals 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 are willing to become donors after their death. On average three people a day die in need of an organ transplant because there are not enough organs available. There are currently around 7,000 people in the UK on the waiting list (this figure changes constantly as people join and leave the waiting list), and many more in need of, an organ transplant.
The 2008 publication ‘Organs for Transplants’ from the Organ Donation Taskforce set out a number of recommendations for increasing donation rates and within these was an explicit recommendation to engage with Black, Asian and Minority Ethnic (BAME) communities. This initiated the development of a range of educational and faith based materials, a number of public awareness campaigns and a calendar of BAME activities in collaboration with key stakeholders and in particular the NBTA. In May 2013 NHSBT hosted a ‘Faith and Organ Donation Summit’ which resulted in a number of recommendations from faith leaders.
According to NHSBT audit figures, 66% of people from BAME communities refuse permission for their loved ones’ organs to be donated. At the same time, patients from BAME Communities are more likely to need an organ transplant than the rest of the population as they are more susceptible to illnesses such as diabetes and hypertension, which may result in organ failure. 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. 27% of patients waiting for a transplant are from a BAME background while BAME communities make up just 12% of the total UK population. It is therefore critical that consent rates from BAME communities are increased;
One consequence of the high refusal rate among BAME communities, and thus the acute shortage of suitable organs, is that on average, patients from the BAME communities will wait a year longer for a kidney transplant than a white patient.
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While overall in the last six years the number of deceased organ donors has increased by 50%, this progress was driven by improvements in infrastructure and an increase in the number of families being asked to donate. The consent or authorisation rate (the percentage of families who, when asked, agree to donation), has remained broadly static.
Consent rates have a huge impact on NHSBT’s efforts to increase organ donation. In the UK family refusal rates are among the highest in Europe at 45% for 2011/2012 compared with 19% in Spain and just under 5% in the Czech Republic. Given the greater need for organs in the BAME population, it is vital that the refusal rate within BAME families is reduced.
Taking Organ Transplantation to 2020 was published in July 2013 by the four UK Health Ministers and NHSBT setting out the strategy to further increase organ donation. It identified that a change in public behaviour is critical so that people donate when and if they can and it becomes a normal and expected part of end of life care. With little change in consent rates over the last six years the behaviour change strategy has been developed based on quantitative and qualitative audience research and an extensive audit of past and current public health behaviour change activity at a regional, national and international level. www.nhsbt.nhs.uk
The behaviour change strategy identifies three campaigning objectives:
To increase the number of people on the ODR by at least 50% by 2020 (from a baseline of 20m in 2014), rebalancing it towards people who are from BAME groups, older (50+) and from DE socio‐economic groups To stimulate conversations and debate about donation, particularly through leveraging the ODR as a marketing tool To present donation as a benefit to families in the end‐of‐life and grieving process
The 2013 Optimisa research looked at multi‐faith and multi‐ethnic issues in the context of the UK population as a whole, with a proportion of the sample belonging to BAME communities. The research findings from these groups identified a need to look more closely at the cultural and religious factors influencing BAME attitudes to organ donation specifically. This need was endorsed in the Big Wins paper produced by the NBTA, which also highlighted in particular a need for more data on religion as a factor.
NHSBT subsequently engaged Optimisa Research to conduct qualitative and quantitative research specifically with BAME audiences to examine attitudes to organ
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donation, the influence of religious and cultural factors on attitudes, and to explore in more detail any barriers to organ donation either personally or on behalf of loved ones.
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3 The project objectives The purpose of the research was ultimately to inform the development of NHSBT’s new behavioural change strategy for organ donation with particular regard to BAME communities. The learnings will facilitate the targeting and prioritisation of different groups within BAME communities and ensure that the messaging and channels used to reach out to these audiences are relevant, impactful and appropriate. One of the key stated aims of ‘Taking Organ Transplantation to 2020’ is for the UK to become a world leader in terms of its record for organ donation; the NBTA’s Big Wins paper (December 2013) highlights that increasing BAME awareness of the need to donate and putting the appropriate support in place to facilitate this within BAME communities will be critical in helping achieve this goal.
With this overarching goal in mind, the research set out to achieve a deeper understanding of two key areas; 1. BAME attitudes towards organ donation 2. The potential effectiveness of different channels in providing BAME communities with information about organ donation
In terms of exploring BAME attitudes towards organ donation the aim of the research was to build on the insight gained from the 2013 study. The research sought to explore some of the key themes from the previous research such as individuals’ willingness to join the ODR but not to discuss their wishes, and to identify any additional barriers and explore how these might be addressed, bearing in mind the role and influence of religious and cultural factors.
An equally important element of the research was to explore how best to equip BAME communities with the knowledge to make an informed choice about organ donation. In order to do this the research sought to understand Usage of and preferences for TV, PR, radio, internet, advertising, word of mouth and events and which of these are recognised as being the most influential The role of different local/community initiatives such as community groups, local newspapers/newsletters/magazines/radio, local events and activities including faith‐led activities and events at places of worship.
As highlighted in the campaigning objectives of the behavioural change strategy there is particular interest in the views of C2DE audiences who are currently under‐ represented on the Organ Donor Register. Accordingly, the qualitative research sample was designed to focus on these socio‐economic groups.
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4 Methodology The programme of research used to address the aforementioned research objectives fell into two key stages which have been brought together into one set of findings.
1. Thee ‘Explor and build’ stage An initial qualitative approach was recommended to further explore attitudinal themes and awareness uncovered in the 2013 research before focusing on an exploration of different information channels. The qualitative stage and timings were designed to allow the findings to inform the development of the subsequent quantitative questionnaire.
A key consideration in designing the qualitative stage concerned who to speak to. With regards to religion, we knew from the 2013 research that the most resistance to organ donation was likely to come from Christians and Muslims since these were the groups where most concerns were expressed. The ethnic breakdown among these religions excluding white European and based on Census 2011 data is as follows:
Buddhist Christian Hindu Muslim Sikh
Asian/Asian British 90% 19% 97% 73% 89%
Black/African/Caribbean/ Black 2% 53% 1% 11% ‐ British
Mixed/multiple ethnic group 6% 23% 1% 4% 1%
Other ethnic group 2% 5% 1% 12% 10%
Figure 1: Ethnic breakdown amongst religions based on 2011 Census data
For the qualitative stage, rather than attempting a nationally representative structure a more focussed approach was adopted, as seeking to cover all groups would not have been feasible in terms of time or cost. At the quantitative stage we aimed for a representative sample of ethnicities and religions across England; this dis discusse in more detail in the quantitative ‘measure’ section below.
2. Groups Given the exploratory nature of some of the objectives a focus group approach was recommended. While discussion groups are often avoided for researching potentially sensitive topics the 2013 research had shown that for BAME groups in particular ‘external’ factors such as religion, community and culture might be more influential for some than individual views.
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In comparison to traditional groups of 8‐9 participants ‘midi‐groups’ of between 6‐7 individuals were convened to ensure respondents didn’t feel overwhelmed and were able to express themselves as much as possible. The structure of the groups was as follows:
Figure 2: Sample structure of group discussions
The sessions brought together individuals of a similar age, ethnic and religious background in a familiar or homely setting such as a local community centre or a recruiter’s home. This ensured individuals felt comfortable and relaxed, to allow for a free flowing and immersive discussion where, particularly in the community centres, we could also get an added feel for their environment. The groups were single gender to ensure no participants felt inhibited or obliged to defer to members of the opposite sex.
In total 14 x 90 minute discussion groups were conducted in Leeds, London, Oldham, Birmingham and Wellingborough. The research took place between 15th and 30th April 2014.
Participants were screened to ensure a mix of C2DE socio‐economic group, a range of attitudes to organ donation and a spread of more and less devout followers of their religion.
3. Depth interviews In order to gain more in‐depth understanding of specific Muslim/Black communities and some ethnic groups that were not covered in the groups 12 x 60 minute depth interviews were conducted in Leeds and London.
Here the recruitment criteria sought to ensure that six of the twelve participants were on the organ donor register but had not spoken to others about it. This enabled the interviewers to gain additional insight around why they had not shared their decision to donate. The structure of the depth sample was as follows:
12 x 60 minute depth Younger (18‐ Younger (18‐ Older (40‐65 Older (40‐65 interviews 39 years) 39 years) years) MALE years) MALE FEMALE FEMALE
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Pakistani Muslim 1 1 1 1 Bangladeshi Muslim ‐ 1 1 ‐ Somali Muslim 1 ‐ ‐ 1 Black African 1 ‐ ‐ 1 Black Caribbean ‐ 1 1 ‐ TOTAL SAMPLES 3 3 3 3 Figure 3: Sample structure of depth interviews
These sessions were conducted on a one to one basis in a location respondents felt comfortable in, such as their home, place of work or a local café.
4. The ‘Measure’ Stage The measurement element of the study following on from the qualitative research took the form of an Ethnibus survey; a face to face omnibus among ethnic minorities where data is sampled and weighted to be representative of the BAME population in England, including region. For this study we spoke to five BAME audiences who had been identified by NHSBT as key populations to understand and research ‐ Indian, Pakistani, Bangladeshi, Black African and Black Caribbean. All data is therefore representative of these BAME audiences in accordance with Census data.
To be as inclusive as possible this face‐to‐face methodology was conducted using a specialist agency. A key benefit of this was that it used interviewers proficient in different languages who were able to speak to participants in their native tongue where appropriate. This ensured that the survey was as accessible as possible to the majority of potential respondents.
A total of 684 interviews were conducted during June 2014, among the following ethnic groups:
Ethnicity No. interviews % sample % Census 2011 Asian – Bangladeshi 55 10% 10% Asian – Indian 237 35% 31% Asian – Pakistani 152 22% 25% Black – African 137 20% 22% Black ‐ Caribbean 103 15% 13%
Figure 4: Ethnic breakdown of interviews achieved versus 2011 Census data
The interviews were evenly split by gender and those interviewed had a similar profile to the national population among these ethnic groups in terms of age, religion and proportion of first generation migrants.
Age
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Our age profile was highly similar to the Census 2011 breakdown among the same ethnic groups:
Age % sample % Census 2011
18‐34 48% 44%
35‐54 38% 38% 55+ 16% 18% Figure 5: Age profile of interviews achieved versus 2011 Census data
Religion The Black Caribbean group in our sample tended to be more likely to state a religion compared with the same ethnic group in the 2011 Census, while the other ethnicities were broadly in line with Census data.
Asian – Asian – Indian Asian – Pakistani Black‐ African Black ‐ Caribbean Bangladeshi Sample Census OR Census OR Census OR Census OR Census % Stating a religion 100% 99% 100% 97% 100% 99% 100% 97% 98% 86% (excluding not stated)
Figure 6: Proportion of interviewees stating a religion versus 2011 Census data
Among those stating a religion, the breakdown was broadly similar toe th Census 2011 data. Our Indian respondents were more likely to be from Hindu communities, which may reflect the community based sampling approach. Indians/ British Indians are the most diverse in religious profile, but clustered communities tend to share a common faith. As the most widespread religion among this group, Indian communities in the UK are more likely to be Hindu, while other religious communities are sparser.
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Asian – Asian – Indian Asian – Pakistani Black‐ African Black ‐ Caribbean Bangladeshi Sample Census OR Census OR Census OR Census OR Census Christian 0% 2% 0% 10% 0% 2% 70% 77% 97% 96% Hindu 0% 1% 85% 47% 0% 0% 0% 0% 0% 0% Muslim 100% 97% 2% 15% 100% 97% 30% 23% 0% 2% Sikh 0% 0% 13% 24% 0% 0% 0% 0% 0% 0% Other 0% 0% 0% 0% 0% 0% 0% 0% 3% 2%
Figure 7: Religious profile of interviews achieved versus 2011 Census data
First generation migrants Although slightly higher, the sample was similar to the 2011 Census in terms of the proportion of first generation migrants, with 62% saying they were born outside the UK (compared with 56% of those from comparable ethnic groups in Census 2011).
The core Optimisa Research team working on this project was Gemma Allen, Richard Fincham, Charlotte Jones, Cathy O’Brien, Julie Taylor and Sharron Worton.
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Main Findings
5 Current attitudes to organ donation Levels of support for organ donation in principle are much lower than in the general population
It is clear that the high refusal rates seen in the BAME population relative to the population as a whole is underpinned by corresponding low levels of support for organ donation in principle and low willingness to donate or consider donating one’s own organs. In this research, 44% of those surveyed support organ donation in principle compared to 86% in the population as a whole in the 2013 research. Importantly, lower levels of support translate into lower levels of willingness to donate, with 28% saying they would or would consider donating their own organs compared to 82% in the population as a whole in the 2013 research. To break this down further, in the 2013 research 51% said they definitely wanted to donate all or some of their organs and a further 31% said they were willing to consider it. In the 2014 BAME research, just 3% say they definitely want to donate all or some of their organs with 25% saying they would consider it.
Figure 8: Support for organ donation in principle and willingness to donate own organs
Q08. Which of these statements best describes your views on organ donation after death? /Q12. Which of the following describes how you personally feel about organ donation? Base: 684
In order to understand these figures better, we need to consider a number of contextual factors that are likely to be consciously or subconsciously influencing attitudes. A number of themes appear to be having an impact;
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Low general awareness of organ donation resulting in very low levels of debate and discussion around the subject Mistrust of the medical profession and a lack of information about organ donation Perceived or assumed religious barriers to organ donation Religious/cultural beliefs, traditions and practices around death
Organ donation is very rarely on the radar for BAME audiences While the influence of religious and cultural factors on attitudes cannot be underestimated, the key challenge is getting organ donation on the agenda. The overwhelming majority of those we spoke to in this research have never discussed organ donation before, with 85% reporting that the subject has simply never come up. This contrasts starkly with the 2013 research where just half of the general population sample said they had never discussed it and 44% said this was because the subject had simply never come up. Only 6% of the 2014 BAME sample state that they haven’t discussed organ donation because they wouldn’t feel comfortable bringing it up. It is likely that there is some ‘under claim’ here and that as we saw in the 2013 research the subject of death generally is taboo in many households, and may be exacerbated in some BAME communities either on religious/cultural grounds or out of respect for older family members.
“It [death] is a taboo in our culture. People don’t talk about it” Younger Male, Somali, Sunni Muslim
“I wouldn’t want to discuss it in front of my Nan. She’d get really upset. No‐one wants to think about anyone dying do they?” Young female, Black Caribbean, Christian
“Donating our organs is just not something we do. I’ve never heard anyone talking about it” Older female, Bangladeshi, Muslim
“Organ donation? I don’t know a lot about it‐ it’s never really discussed. You kind of know of it, but it doesn’t feel particularly directed at me” Younger female, Indian, Sikh
Discussion of organ donation is rare even among registered individuals It is worth noting at this point that the lack of discussion of organ donation is not limited to those who have never considered it; ine th qualitative discussions almost none of those on the ODR had discussed their wishes with anyone. Most were unaware of the consent process and therefore of the importance of discussing their wishes. Once aware, people often felt unsure of how they would approach the conversation; when should they bring it up, how should they position it, how could they handle objections or any distress caused? A minority felt resentful of the process, believing that they should not need to have their personal decision ‘endorsed’ by anyone else.
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“I didn’t know I needed to discuss it. Why should I? It’s my body, and my right to do what I want with it!” Younger Female, Black Caribbean, Christian
This low awareness of the consent process is consistent with findings from the 2013 research, and an issue that needs to be addressed across the ODR. Even among the minority in the qualitative sample who were on the ODR and had discussed their wishes, awareness of the consent process was lacking. These individuals had discussed their wishes because organ donation had impacted on their families – one was an organ recipient, another the relative of a recipient and the subject was ‘out in the open’. As such their motivation for sharing was personal, not because they knew or thought they should share their decision. A common characteristic here was a passionate belief in organ donation; it was clear from talking to them that they and individuals like them would make very good advocates for organ donation.
The figure below illustrates how rarely organ donation is discussed in BAME communities.
Figure 9: Getting BAME audiences to talk about organ donation is a key challenge
Q9. To what extent have you heard about or discussed organ donation after death? Q16. Have you, or has someone you know ever needed an organ transplant? Base: 684
Mistrust of the medical profession and a lack of information about organ donation Mistrust in the medical profession was a key finding in the 2013 (general population) research and was, and continues to be, a key barrier among BAME communities. Almost a quarter (23%) were concerned that medical staff would not do enough to save their life, 22% that their organs might not ultimately be used for transplantation and 11% that they might still be alive when their organs were removed.
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Figure 10: Getting BAME audiences to talk about organ donation is a key challenge
Q15. Which of these apply to you when thinking about whether you would consider donating your organs after death? Base: 684
These concerns were echoed in the qualitative research, where in every discussion group at least one participant was able to relate a story of poor practice. There were some examples where people felt personally let down by the system; this was particularly evident in discussions with Pakistani and Bangladeshi males both young and old.
“This country’s medical department is very bad; I cry every night. The doctor sends me for MRI, the results come in 5 days but my next appointment is not for a month” Older Male, Bangladeshi, Muslim
Other stories ranged from references to the 1999 investigation into organ retrieval at Alder Hey to more recent stories about patients lying for hours unattended in hospital corridors and others dying of dehydration. While these examples do not always involve organ donation and it is clear that many are anecdotal / driven by media coverage of ‘NHS scandals’, they illustrate a level of mistrust in the profession generally.
“There may be someone out there who has a better chance of survival than you have, so they may think well we’ll just let her slip.” Younger female, Black Caribbean, Christian
Some first generation migrants are also influenced by their perceptions of organ donation in their home country, including stories of live donations in return for money, and of organs being taken after death without consent. While there were some views expressed qualitatively about the British health system being ‘better’ and more ‘trustworthy’ than in some other areas of the world, there was a sense that this may
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be in recognition of the fact that there is access to free healthcare for all. Some of the participants in the qualitative research talked about access to healthcare being difficult or prohibitively expensive for family members ‘back home’; in this context any mistrust is balanced with a sense of gratitude or of being more fortunate than others. In any event, there is a clear need to address the issue of mistrust in the medical profession as part of any educational campaign around organ donation, both within BAME communities and in the population as a whole.
Lack of information about organ donation is another factor that is influencing attitudes and something that goes hand in hand with organ donation not being on the radar. 16% of those interviewed said that they didn’t know enough about the subject, compared to 11% of the general population sample in 2013. This became apparent very quickly in the qualitative discussions, where participants spontaneously thought of and started talking about living donation when the topic of organ donation was first introduced. The fact that organ donation is not understood when prompted and needs to be explained as ‘after death’ illustrates how effective positive stories about living donations have been, while positive stories about organ donation appear to be much thinner on the ground. It is unsurprising then that the majority of our sample say they have little or no knowledge of the subject.
“Everyone’s ignorant to it. I don’t know of anyone who ever needed it” Younger female, Pakistani, Muslim
“I should have researched this, that’s really bad” Younger Male, Somali, Sunni Muslim
Perceived or assumed religious barriers to organ donation Across the 2014 BAME sample a number of major religions are represented and within these a range of levels of devotion and orthodoxy, from the very devout, ‘strict’ followers of their faith’s teaching through to those who are less devout, born into a faith but not really practising and lapsed. Irrespective of this, the research highlights some clear differences in attitudes to organ donation between Muslims and those of other faiths. Pakistani and Bangladeshi groups for example, predominantly Muslim by faith, are less likely to support organ donation in principle than people from predominantly non‐Muslim communities. Strikingly, many admitted in the qualitative discussions that they did not know their faith’s position and wanted some sort of consensus.
“I think it needs to be clarified. Scholars have got to tell us their opinion” Older Male, Bengali, Muslim
“Some Alims say yes, some say no – there is a lot of disagreement” Older Female, Bengali, Muslim
“If one says yes and one says no, I would go with what the majority say” Younger Female, Pakistani, Muslim
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“For older generations there is a strong sense you should leave the world the way you enter it. But I think that religion is how you want to see it and interpret it‐ it’s all personal choice” Younger Female, Indian, Sikh
Figure 11: Pakistani and Bangladeshi groups less likely to support organ donation in principle
Q08. Which of these statements best describes your views on organ donation after death? Base: 684
The qualitative research also suggests that religion is likely to be a key influencing factor for Muslims in particular, as it was noticeable in the discussions that many Muslims immediately and spontaneously thought about whether or not Islam allows or forbids donation, whereas for other faiths other factors such as personal concerns or generally mistrust of the profession were top of mind.
“I haven’t researched this, it’s just a feeling based on the idea of ‘qiyamat’ (afterlife) and your obligation to Allah – you will be brought back to life (Resurrection Day)” Younger male, Somali, Sunni Muslim
“I’ve never really given it any serious thought. I don’t know enough about it” Older male, Black Caribbean, Christian
“It’s forbidden in our Islam. It’s in Hadith (reporting or teaching of the Sunnah in Islamic tradition). It is forbidden” Older Female, Pakistani, Muslim
The quantitative research supports this observation, with Pakistani and Bangladeshi respondents being particularly likely to think organ donation is against their religion compared to the ethnic groups predominantly representing other faiths such as
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Hindus, Sikhs and Christians. Those in Pakistani communities were most likely to believe that organ donation is against their faith ‐ 36% stating this as a barrier. This is compared to 31% Bangladeshi and a significantly lower 11% Indian, 7% Caribbean and 15% African respondents.
Figure 12: Pakistani and Bangladeshi groups more likely to think organ donation is against religion
Q15. Which of these apply to you when thinking about whether you would consider donating your organs after death? Base: 684
Although the qualitative discussions uncovered some strong convictions about organ donation being against the teachings of some faiths, it was also clear that in many cases assumptions were being made; many participants admitted that they did not know for sure and would need to do some research or seek advice. It is here perhaps that religion and culture are most interwoven; there must be a reason why it doesn’t happen, and maybe that reason is religion, maybe it is tradition. As discussed later in this report, this uncertainty and speculation when asked to think about the subject of organ donation suggests an opportunity to inform and educate. At the same time, the desire shown by many to avoid anything that is forbidden demonstrates how important it is for the major faiths to endorse organ donation.
“People are afraid of pain in the afterlife. It might not be religion but culturally it might not be accepted. If everyone did it, everyone would be ok about it” Younger Female, Pakistani, Muslim
The likely influence of Islam on decisions around organ donation is clear when responses to the quantitative survey are broken down between Muslims and non‐ Muslims. While personal views on organ donation are very similar, Muslims are much
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more likely to feel that their religion prohibits organ donation, and to say that religion will be a key influence on any decision they make about becoming a donor.
Figure 13: For Muslims, the influence of religion on decisions around organ donation is stronger than for other faiths
Q08. Which of these statements best describes your views on organ donation after death? /Q12. Which of the following describes how you personally feel about organ donation?/ Q15. Which of these apply to you when thinking about whether you would consider donating your organs after death?/ Q6. Thinking about the following situations, who would be most likely to influence the decision you make? Base: Non‐Muslim (431)/Muslim (253)
In contrast, the qualitative discussions with non‐Muslims uncovered more of a separation between religion and organ donation. Organ donation tended to be considered much more as a personal choice; non‐Muslims did not always feel they would need the endorsement of their faith in order to make a decision. In discussions with some devout non‐Muslims, for whom religion was more of a consideration, organ donation was felt to align well with their beliefs and the teachings of their faith; as such there was no expectation that a decision to donate would cause offence or have any other negative consequences.
“I can’t remember it ever having been discussed in my church but I would expect them to see it as a personal choice, between me and God. I think most people at my church would see it as a good thing.” Older Male, Black Caribbean, Christian
“If Hindus are not donating I believe it is because of apathy, shyness and lack of awareness, not because they don’t support it. They just need to be asked” Older Male, Indian, Hindu
“I don’t think there is anything in our religion that says you shouldn’t donate‐ I’ve never heard anything. Obviously organ donation is relatively new and when the religion’s started out no one knew about it then” Older Male, Indian, Sikh
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A note on the Muslim sample in the research: While many of the Muslims who took part in the quantitative survey felt their religion to be a barrier to organ donation, a feeling that was also very evident in the qualitative discussions, it was clear that this is underpinned by several other factors. Islam is seen by many as a way of life, more all‐encompassing than is evident in the relationship between non‐Muslims and their faith, and very much intertwined with culture and tradition within particular communities. The qualitative research in particular revealed that while many Muslims are seeking knowledge about Islam for themselves, and consulting those with greater perceived knowledge of Islam – as is common in Islamic culture – where less personal study is undertaken there appears to be more reliance on faith leaders and other sources of guidance for interpretation. This has implications for organ donation as decisions are likely to be made in consultation with other respected sources rather than in isolation. In addition, debate and discussion are frequently mentioned as being very important aspects of Islam, suggesting that there is the potential to start a dialogue about organ donation even where doors may initially seem to be closed.
Religious/cultural beliefs, traditions and practices around death Across the qualitative research, irrespective of the level of devotion or orthodoxy demonstrated by participants of different faiths, the observance of long established practices and traditions around death is very clear. While many rituals and procedures have their roots in religious belief and/or teaching, and many families turn to (or sometimes back to) God when approaching death or in times of bereavement whatever their faith or religious upbringing, observing custom and tradition appears to be even more important within BAME families and communities.
For those born outside of the UK, upholding traditions is an important part of making sure that heritage is not lost or forgotten, and that family history is passed on and lives through second, third and future generations.
The impact of losing loved ones means that death and its rituals are almost sacrosanct in terms of the desire to uphold tradition. This is evidenced by the fact that while death is a taboo subject in many BAME households, many are well prepared for the eventuality and know exactly what arrangements need to be made should a family member pass away. It is unsurprising then that there is concern that organ donation could be disruptive. In essence, while this is an area of concern that needs addressing in the general population, it is important to keep in mind the particular implications for BAME audiences when seeking to encourage support for organ donation specifically within these communities. It is worth noting that in the case of Islam, the notion of death being taboo is somewhat at odds with the Islamic stance that death should be thought and spoken about freely, to encourage people to feel closer to their Maker, to pray and do good deeds, in the belief that they will be assured of a place in Jannah (heaven) in the afterlife. For many Muslims therefore it is not the subject of death itself that is difficult to broach, but rather the emphasis on after death arrangements.
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The illustration below highlights some of the concerns raised in this research around organ donation and the traditions and customs surrounding death:
Figure 14: Religious and cultural beliefs and traditions around death are passed down through generations
Importantly, there are some clear differences in attitudes depending on whether the tradition in the deceased’s family is for burial or cremation. Where burial is ‘the norm’ there appears to be very often greater attachment to the physical form, leading many to express a desire or need to be ‘whole’.
“My body belongs to Allah Subhana T’ala (Allah, the most Glorified and Exalted); I want to leave as I came into this world” Older Male, Pakistani, Muslim
“Your body should be as it was” Younger Female, Black Caribbean, Christian
“After death there is nothing I can do. As a Muslim I am not allowed to give any part of my body to someone” Younger Male, Pakistani, Muslim
“Black people go with the Christian point of view. Stay as a whole, not taking bits away from them which is given by God”
Older Male, Black Caribbean, Christian
For some Muslims there is an additional consideration; a belief among some that the body continues to feel pain until it is buried (although it is unclear whether this is driven by religion or culture, and concerns about disfigurement / alterations to the
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body and how this might impact on preparing/washing the body for burial and on those viewing the body before the funeral.
“In my religion we feel the dead body does still feel. When we wash a dead body, are taught to be very delicate with them.” Younger Female, Somali, Muslim
In contrast, cultures and religions that favour cremation appear to have much less attachment to the physical remains of the deceased (their own or others’) and as a result do not feel that organs are ‘needed’ by the deceased person following death. This inevitably makes the notion of organ donation easier to contemplate. When this point of view is coupled with an assumption either that the family’s faith would endorse or at least not reject organ donation, or a belief that the decision to donate is a personal choice distinct from religious considerations, encouraging individuals to support or consent to organ donation will be less of a challenge.
There is a fourth dimension to add to the influence that Faith, Culture and Knowledge have on BAME attitudes towards organ donation: Family. The importance of family is evident both in the qualitative discussions and in the quantitative sample where 14% of those surveyed cited being worried about upsetting family members when considering the idea of supporting organ donation. Across the whole BAME sample family was found to be a key influence, whether it surfaced as respect for the values and beliefs of elders or a desire to avoid upsetting older relatives. The deeper insight gained around BAME communities and family in this research helps us to understand why concerns about what the family may think is such an important barrier to overcome. The importance of family means that there is often greater focus on the collective than the individual, with the family at the heart of decision making. The closeness of the family structure means that values get passed down, together with cultural practices and tradition.
In some Muslim communities in particular there seems to be more adherence to tradition and customs than is the case in non‐Muslim BAME communities. Organ donation as a case in point is not customary for Muslims and can be seen as counter to tradition. Cultural norms such as respect for elders mean that (mainly younger) less observant Muslims will sometimes ‘shield’ older relatives from their own more relaxed views and behaviours. The observation of The 5 Pillars – the key tenets of Islam that are obligatory for all Muslims – is passed down to children as early as possible: Shahadah (The Pledge), Ramadan (fasting), Zakat (charity), Salaah (5 times a day prayer) and Hajj (pilgrimage). There is some sense that while younger members of the family may not always be as active as their elders, they rarely explicitly reject or distance themselves from Islam. Finding a way to ‘target’ the whole family – not just the elders, or younger family members – and get families talking will be critical to moving BAME organ donation forward. This is evidenced in the quantitative research where we can see the level of influence the family has across all BAME groups in a whole range of decision making areas:
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Figure 15: The influence of family on key decisions
Q6. Thinking about the following situations, who would be most likely to influence the decision you make? Base: 684
Of the four broad areas of influence shown in the chart below, faith, family and culture all have the potential to discourage Muslims to consider supporting organ donation as things stand at present. For the most orthodox or devout, the influence of faith leaders is key; endorsement of organ donation locally and at a higher level would be transformative. Within non‐Muslim families and communities, religion appears to be much less of an influence but culture and family hold a lot of sway. With religion as less of a barrier, there appears to be more potential for greater knowledge about organ donation to overcome cultural and familial considerations.
Figure 16: Hindus, Sikhs and Christians are more likely to view organ donation as a personal decision
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6 Opportunities for behavioural change in organ donation The contextual factors and influences at play in BAME communities are considerable but possible to address; the research has uncovered a number of indications that there is potential for raising awareness and having a dialogue that should encourage increased levels of consent and support for organ donation.
From this research we have been able to identify 4 opportunities to build support and engage with BAME communities:
1. Four in ten are unsure about their position on organ donation Willingness to consider organ donation is not as straightforward as Yes or No – between a quarter and half of those surveyed were unsure. Combined with relatively strong support for organ donation in principle, and a further proportion ‘on the fence’, the biggest potential appears to be within Indian (Hindu/Sikh) communities:
Figure 17: Uncertainty around willingness to consider organ donation suggests some opening for discussion
Q12. Which of the following describes how you personally feel about organ donation? Base: 684
The picture is even more encouraging if we look at the total BAME sample by age. Around half of those aged between 18 and 34 say they support organ donation in principle, and are more likely than older age groups to consider donating their own organs:
“I wasn’t interested in this subject before but I am now” Younger Male, Pakistani, Muslim
“I was asked about joining [the ODR] when I changed doctors. It seems like a good deed, a good thing to do. I won’t need them” Younger Female, Black Caribbean, Christian
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“If there is any chance of it being acceptable in my religion then I would be happy to consider” Younger Male, Somali, Sunni Muslim
“None of these barriers are enough to put me off donating provided I knew enough about it I just need to have a conversation with my family about it” Young Female, Indian, Sikh
Figure 18: Support and consideration for organ donation by age
Q08. Which of these statements best describes your views on organ donation after death? /Q12. Which of the following describes how you personally feel about organ donation? Base: 684
2. An openness to discussing organ donation The 2013 research established that many people feel they don’t know enough about organ donation to make an informed choice, and that when forced to make a decision the default or ‘safest’ decision is ‘No’. The 2014 BAME research highlights lack of information as a key barrier once again, but also tells us that there is some expectation that such a decision should be discussed and debated within family circles. Over half of those surveyed say they would turn to a family member to find out more about the subject. Around than 1 in 4 would seek out other information sources rather than speak to someone, and well over half of 18‐34 year olds would look online. This suggests an encouraging openness to further dialogue, but also emphasises the need for a multi‐channel approach.
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Figure 19: Multiple channels likely to be consulted for more information on organ donation
Q11. Which of the following might you do if you were looking to find out more about organ donation after death and whether your community or religion supports it? Base: 684
3. Very little visibility on religious stances on organ donation Although religion is held up as a barrier, well over half agree that they don’t know their own religion’s actual position on organ donation; not surprising given that the overwhelming majority of those surveyed have never discussed the subject and cannot recall it having been discussed in the context of their faith. Over two thirds (68%) of Christians and 8 in 10 (81%) Muslims say they know nothing about how their religion views organ donation. While there was a lot of debate in the qualitative discussions surrounding the Islamic stance on organ donation, non‐Muslims appeared fairly confident that their faith would endorse it.
Figure 20: The vast majority know nothing or very little about their own faith’s stance on organ donation
Q10. Which of the following describes you? Base: 684
Lack of visibility of different religious stances ‘on the ground’ suggests that stronger, more faith‐specific messages could be useful for a) engaging undecided non‐Muslims
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and b) creating more debate about organ donation in Muslim communities and places of worship.
4. The desire to help others appears to be a central tenet of all of the major UK religions and a key motivator for being a good member of the community ‘Being a good person’ is perceived to underpin all of the faiths represented in the research. Those participants who are not especially observant or don’t see themselves as particularly ‘religious’ nevertheless aim to be a good Christian, a good Hindu, a good Muslim, a good Sikh and so on.
Figure 21: Key words used by followers of different religions in the sample to describe the central tenets of their faith
This often includes treating others with respect, looking out for neighbours, connecting with the community; all attributes that can be applied to the benefits and positive outcomes of organ donation. Equally, charity is often a central tenet of faith and promoted in places of worship. In many faiths, charity – for eexampl Zakat in Islam – is a non‐negotiable requirement. Even where charity is acknowledged as being an obligation rather than personal choice comfort is taken in helping others or ‘giving something back’. Many individuals in the research were supporting charities; as an example many Muslims were making voluntary contributions – Sadaqah – as well as the obligatory Zakat. In addition to financial donations Muslims and non‐Muslims alike were finding other ways to make a contribution. These included fundraising, supporting/ running community activities and carrying out general ‘acts of kindness’ such as offering lifts or fetching shopping for elderly neighbours. Although occasional references were made to charity being rewarded – for example on the Day of Reckoning or Judgment – most people appeared to be motivated at least as much by being able to make a difference and see the fruits of their efforts. As a result there was more emphasis on community based activity closer to home than in supporting larger or international charities, although for Muslims Islamic Relief and to a lesser extent Muslim Aid were referenced as positive examples of larger charities.
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Figure 22: The importance of a local focus on charity
“Charity is very important for Hindus. A lot of the activities at temple and in the community centre raise funds for different causes. We recently raised over £3,000 for the local children’s air ambulance service. We are helping all children in the area, not just our own.” Older Male, Indian, Hindu
“Charity is a big part of what we do as a church. We fund shelters, try to help people who are desperate” Older Male, Black Caribbean, Christian
“Try and find something in the community you’re passionate about and give your time” Younger Male, Somali, Sunni Muslim
“With the really big charities you worry about the admin costs. You want everything to go to the cause” Older Female, Indian, Hindu
“It doesn’t have to be big or involve a lot of money. It can mean being a good neighbour. I sometimes take food to an old lady near me. I think she appreciates the company as much as anything” Younger Female, Black Caribbean, Christian
“Charity is massively important in the Sikh faith; some Gurdwaras even feed homes and hostels. It’s written into our scriptures we should live an honest life and not to excess” Older Male, Indian, Sikh
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While it is important to keep in mind that the most people do not see organ donation as an act of charity, this does not mean that hearts and minds cannot be won in terms of support for organ donation. The research illustrates a strong commitment to the local community that can be leveraged to spread the word and get people talking. It also highlights the impact that communicating positive, tangible outcomes can have on a community; ‘making a difference’ is a big motivator. As such, there is an opportunity to promote ‘making a difference in the community’ as an aspect of organ donation, to raise awareness and encourage consideration. Working from within the community, for example via outreach programmes such as the peer educator programme, and potentially with the support of donor families and participants within communities, will be critical in ‘spreading the word’.
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7 Information and influence channels As already discussed, the research showed that religion and family are very important as sources of information for BAME audiences. Equally, community is a vital aspect for many BAME individuals. The qualitative discussions highlighted the strength of the bonds formed out of the shared experience of migration for many families. Being physically separated from immediate and/or the extended family often leads people to develop support networks to ‘replace the void’; not surprisingly networks are developed between people finding themselves in similar situations. Traditions are upheld as a way of feeling closer to home or to missing loved ones; doing this as part of a wider community provides a sense of kinship that would otherwise be provided by spending time and observing customs with relatives. Typically such activities will revolve around holidays, festivals, music and food. Finally, and arguably most powerfully, religious customs and practices provide comfort and familiarity, often via a shared language, and the places of worship attended offer a social as well as a spiritual dimension. The power of BAME communities in these respects was evident across the faiths and ethnicities represented in the research. As well as providing the ideal forum for debate and discussion, where pro‐donation individuals or families are present in communities the research suggests there is an opportunity for these to be used – perhaps in conjunction with experienced peer educators and organ recipients – as a voice or ‘champion’.
All three of these channels then – Religion, Family and Community – have great influence. Not only do the views of faith leaders, family members and community members/leaders shape attitudes, they are also where people turn first for advice and guidance.
“For anything to do with my religion I would first find someone I trust for example a Mufti. I also follow Mufti Menk on Twitter eand se him on TV” Younger Male, Somali, Sunni Muslim
“It would be my mum. And if it was something I really couldn’t talk to her about, my sister” Younger Female, Black Caribbean, Christian
“It depends what you want to talk about. If its family things I’ll talk to close family but if it’s something to do with the community then I will talk to the Imam and committee members” Older Male, Pakistani, Muslim
It is essential therefore that NHSBT works with faith leaders, places of worship, community leaders and community centres and through these directly with families.
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The most challenging aspect is likely finding a way to encompass all of the different influences that fall under the umbrella of ‘religion’. While it is clear from the qualitative research that local faith leaders have a critical role to play, there are also wider influences to consider such as online hfait resources, faith leaders ‘at home’ or elsewhere overseas, and higher profile faith leaders or commentators. From this research, the nature of Islam in terms of the encouragement of personal study suggests that many Muslims are likely to have access to and consult more sources of information or advice than is the case for some other faiths. There is additionally a sense that the plethora of information sources in Islam is likely to make it more difficult rather than easier to reach a personal decision about a subject as polarising as organ donation. Since the use of the internet and social media as a platform for sharing views is only likely to grow in the future, it will be important to aim for a multi‐ channel approach, encouraging discussion about organ donation across a range of different platforms from on‐the‐ground via peer educators through to high profile commentators on social media and high ranking faith leaders. The key will be to work through the influencers rather than just direct to the audience, as this is likely to have the greatest impact and credibility.
The research also examined usage and preferences around print and broadcast media, to see if there were yan channels offering particularly useful or influential routes to BAME audiences.
The qualitative discussions identified some use of ethnic or faith‐specific media both on and offline, but equally it appeared that some of this was either fairly niche or used predominantly by older people. Typical BAME families, particularly second and third generation, are just as or more likely to watch EastEnders or Emmerdale as they are to watch ethnic‐specific programming. That said, there were some references in the qualitative discussions to ethnic specific TV channels such as Star Plus, B 4U, Zee TV and African International, and to faith channels such as Peace TV, IQRA and the Islam channel. Additionally in some households religion‐based TV channels are watched, such as Peace TV, IQRA and the Islam channel. Through the religious channels airtime is given to high profile scholars within the Muslim faith such as Dr Zakir Naik and Mufti Menk, both of whom have held many debates and lectures around the world and are known for having roles in clarifying the Islamic position on certain topics and comparing this to other religious perspectives. Tariq Ramadan is also referenced by some. Radio stations are also listened to; again a mix of mainstream UK radio stations such as BBC Radio 1, 2, 3 , 4 plus commercial stations such as Capital and Kiss alongside stations aimed at specific ethnicities such as Sunrise, Spice and Betar Bangla. There appears to be more scepticism about the internet. That is not to say that BAME groups are not using it; among younger groups in particular social media is integral to their lives, with many using Facebook, Twitter and to a lesser extent Instagram. That said, it is evident that not everything read online is taken at face value and in fact among some groups – older Black Christian males being one example – there is a high degree
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of scepticism about the reliability of information found online. Some of the Muslim participants use Islamic websites for information and general reference, but this will usually be used in conjunction with speaking to local faith and community leaders rather than as a substitute for speaking to someone in person or over the phone.
All of this said, the quantitative research showed that usage of local or ethnic‐specific print and broadcast media is relatively low:
• 3% of the sample had watched a local TV channel in the last week • 14% had read a local newspaper in the last month • 23% had listened to the radio in the week prior to the survey – a mix of ethnic specific and mainstream stations • 8% ‐ mainly older and Asian – listen to Sunrise Radio • 5% listen to Heart • 5% listen to Kiss
“I read the Daily Mail, the Guardian and Al Jazeera – all on my phone or laptop, I don’t buy them” Younger Male, Somali, Sunni Muslim
Usage of social media is relatively widespread, with 55% of the sample using Facebook in some capacity and 19% using Twitter in the last month. Not surprisingly, both of these tend to have a younger profile.
“I’m a social network freak – Facebook, Twitter and Instagram – so if I see someone raising money for charity I would give” Younger Female, Pakistani, Muslim
While media usage did not uncover any obvious opportunities, a look at regular activities suggest that community placed communications and outdoor advertising where people have time to read, process and contemplate messaging may have better reach: In the month prior to the survey:
56% travelled by bus or train – so communications at bus stops / train stations may achieve reasonable levels of readership 44% attended a religious service – so leaflets and posters in churches, temples and mosques likely to be useful 35% attended a GP surgery, clinic or hospital – so leaflets and posters at medical sites available from medical staff may be helpful 21% attended a community event – so leaflets, posters and talks at community events another useful channel
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8 Driving a change in attitudes to organ donation Having established current attitudes to organ donation, the influencing factors underpinning these and the channels carrying most influence, the research sought to understand what messages could most effectively bring about a change in attitudes to organ donation within BAME audiences. This was approached in three ways; through qualitative discussion, qualitative testing of existing organ donation communications material and quantitative measurement of the appeal of different motivating messages.
Personal, ‘reciprocal’ messages are more motivating than messages that highlight the benefits of organ donation for society
When asked to think about organ donation, many focus on the more negative aspects; death and dying, loss, mistrust in the medical profession, religious barriers and so on. When asked to focus on some of the more positive aspects, the research showed that messages relating to ‘me’ or ‘my family/loved ones’ giving or receiving organs were more powerful and motivating than messages that could be termed ‘societal’ in focus. The qualitative discussions suggested that this may because discussion of the wider benefits of organ donation can feel too abstract without first anchoring thoughts on the more tangible and familiar.
Figure 23: The most motivating statements tended to be individual not societal
Q14. Which of these apply to you when thinking about whether you would consider donating your organs after death? Base: 684
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This preference for more individual or personal statements was reflected when we asked people to look at a series of messages from existing organ donation campaigns. The materials used came from different campaigns around the world and were not specifically aimed at BAME audiences. Full details of the campaigns can be found in the Appendix. When people were able to read or view posters and videos in their own time as they might be exposed to them ‘in real life’, a key early observation was that the most successful communications were those that invited the reader or viewer to reach their own decisions.
More generally, capturing responses to a selection of materials – predominantly posters and a number of videos – uncovered some useful guidelines; examples of elements that work to engage and motivate audiences and those more likely to alienate or be overlooked. These are summarised in the figure below;
Figure 24: Guidelines for promotional messaging around organ donation
Non‐judgmental positioning / inviting audiences to make their own decisions A video from Australia showing faith leaders talking about donation and encouraging people to do their own research and make up their own minds engaged viewers and provoked a positive response, while a New York poster highlighting the positive impact a donated organ can have on families and providing a website for more details was also well received:
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Figure 25: Faith leaders’ video and posters from a New York campaign
In contrast, posters with a more forceful tone were often seen as patronising or judgmental. Messages that made people feel pressured or guilty were especially disliked, creating alienation between the audience and the cause:
Figure 26: Prove It, Save Dave, and Would you take an organ? posters
‘Save Dave’ (and another in the series – Kill Jill), and ‘Would you take an organ if you needed one?’ elicited negative responses. The underlying messages made people feel pressurised and manipulated.
“That’s so wrong – trying to guilt‐trip people into becoming a donor – it should be my decision, don’t make me feel bad about it” Younger Female, Black Caribbean, Christian
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The ‘Prove It’ campaign was often misunderstood, causing alarm and in some cases making people feel manipulated. It is especially important to note that some of the older participants in the research, often first generation and with a less well developed command of English tended to receive messages very literally and in some cases had to rely on others for a translation, meaning that nuances were easily missed. References to the particular needs of BAME patients – using facts to illustrate the gap between supply and demand – were especially unhelpful. In some cases offence was caused; by some who felt that the 1% message was a criticism of BAME communities for not donating, while others worried that BAME patients wait longer for a transplant because priority is given to white, native British patients.
Explicitly communicating the link between ethnicity, donor/patient compatibility and supply/demand is critical
Responses to the promotional materials, and the ‘Prove It’ Campaign in particular validated a hypothesis that started to form in the 2013 research but became much clearer in the BAME specific research: the need for a very explicit explanation that there is a need for more BAME donors as opposed to simply more donors. While the use of facts and figures were appreciated by a minority of the qualitative sample as it appeared to supply the information they had identified as lacking – it failed to provide any context in which to understand the implications of the figures, meaning that no‐ one was able to make the necessary connection. Giving BAME audiences the information they need to make the connection, or making the connection for them in explicit terms, will minimise the chances of misinterpretation and emphasise why it is important for there to be more BAME donors on the Organ Donation Register.
“An organ is an organ; they are just trying to make us feel bad by saying that there are few black donors” Older Male, Black Caribbean, Christian
“I’m shocked [by the image and the figures]. I need to understand why” Younger Female, Somali, Sunni Muslim
“Less than 1%? That feels like another pop at us, something else we’ve done wrong” Younger Female, Black Christian
“I’m very concerned about the need for Asian donors. It’s an important message as our people don’t want to give” Older Male, Pakistani, Muslim
Positive stories that illustrate the wider consequences of organ donation, and stories that forge a strong connection between audience and characters
The materials that resonated the most and made audiences feel more positive about organ donation were those that emphasised the positive impact a transplant can have not just on an individual but on their wider family. Equally, the ‘Pass it on’ video told a
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powerful story of a chance meeting between a young boy and a man at a railway station. The impact of the boy’s request on the man struck a chord with many and appeared to help people think about organ donation in a different way that focused on the benefits and outcomes rather than on death.
“It’s the family‐ these images show how if one person goes it will have an impact on the whole family. By you donating and helping them you will help the whole family” Older Male, Indian, Sikh
Figure 27: Family stories and the ‘Pass it on’ video
In contrast, the ‘Leila’ video and the ‘Eyes’ campaign did not connect with audiences in the same way. In focussing on death ‘Leila’ made people sad and for some it felt like an attempt to ‘guilt‐trip’ audiences into donating. The ‘Eyes’ campaign revealed two issues – graphic imagery that was seen as gruesome by many, and a lack of any story or emotional hook. The simplistic organ donation poster had little impact and was generally overlooked. In both of these last two examples, the lack of narrative meant that the materials were open to being taken too literally or being misinterpreted.
Figure 28: Leila video, ‘Eyes campaign and organ donation poster
While family imagery in particular had a positive impact, across the materials there were several examples where the potential impact of the message was reduced by an
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image that was either too abstract, too negative/graphic or apt to be taken too literally. The poster ‘Hero’ did not sit well both as a result of being negative and distressing graphically but also because the notion of being a hero after death is not a good fit:
Figure 29: Donate life, ‘’Hero’ and ‘Dustbin’
“If I call myself a Muslim, I know where I’m going so the bin is a strange representation. I’m not a piece of shit to go in the bin” Older Male, Pakistani, Muslim
Although overall with BAME audiences the ‘Dustbin’ poster failed to make a positive impact, for a minority – while not always a favourite – this message was felt to be a powerful one.
“The organs will go to waste – it’s a fact! The bin is very compelling” Younger Female, Somali, Sunni Muslim
“How can you be a hero after death? I would be a hero if I gave something in my lifetime” Older Male, Pakistani, Muslim
Imagery that is specific and inclusive in terms of ethnicity The research also highlighted the importance of finding the right balance when using ethnicity‐specific imagery. Images and descriptions that are too ‘broad brush’ risk being seen as ‘tokenism’, but more importantly can lead to messages being overlooked if the target audience self‐excludes as a result of thinking the material is aimed at someone else. This is particularly important when depicting or describing nationality. As already seen, people are very keen to hold on to their heritage and maintain close ties with home; any messaging that groups distinct audiences together under one umbrella description works against this and can alienate.
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Figure 30: The importance of specific ethnic references and respecting religious and cultural sensitivities
“What is South Asia? I don’t think of myself as South Asian” Younger Female, Pakistani, Muslim
Equally, respect – for elders, for religion, for culture is a key theme in discussions with BAME audiences. Images where the characters are partially clothed can be seen as disrespectful and are likely to cause offence to older BAME audiences generally, and to Muslim audiences in particular.
“If I don’t like the image I will just try and blank it out” Older Male, Black Caribbean, Christian
The importance of tailoring messages to specific audience was also underlined by the responses to the Faith Leaders video from the Australian organ donation organisation. While the video was received very positively for its breadth of coverage of different faiths, and most importantly for its call to individuals to make up their own minds, it was clear that to have and real resonance in the UK a UK‐made version would be required. Unsurprisingly given the lack of a single Islamic position on organ donation, there were some reservations about how easy it would be to find leaders that could really connect with the diverse Muslim audiences in the UK.
“I don’t care that a mufti in Australia has said its ok, that doesn’t mean that it is ok for me” Younger Male, Bangladeshi, Muslim
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“It would be a huge benefit to the Somali community if they could find someone that can talk to them about it” Younger Male, Somali, Sunni Muslim
“It wouldn’t have an impact here. There are so many scholars out there these days” Younger Female, Pakistani, Muslim
“I am shocked. I’ve talked to quite a few scholars since I started practicing and they say you’re not allowed, this is banned, end of story” Younger Male, Pakistani, Muslim
Communication messages have the power to encourage consideration of organ donation but some can polarise opinion In addition to testing motivational statements and qualitative discussion of a number of posters and videos promoting organ donation, we also measured the appeal of several additional communications messages. While many of the messages tested had a positive impact, three messages polarised views, suggesting they have the potential to alienate as many people as they encourage. One of these makes a link between organ donation and personal pride. This division of opinion between those who feel encouraged by this message and those who don’t has some consistency with the 2013 qualitative research where pride was not felt to be an especially appropriate feeling in the context of organ donation. At the same time, it is interesting that in the 2014 BAME research a statement about supporting and feeling proud of members of the community who have donated is motiving for 1 in 4; this appears to underline the importance of community and confirms community as a key channel.
The other two messages that divide opinion contain a call to action to sign up and to share the decision. Considering these results in the light of some of the contextual findings of the research suggests that these messages are a ‘step too far’ at this point in time. A further note about sharing the decision to become an organ donor can be found in the appendix. The messages that do particularly well in contrast are those that provide information, highlight the wider benefits of organ donation and talk about organ donation in the context of families and loved ones. The message that ‘One dday it coul be someone you know or love – or even you – in need of a transplant’ was especially compelling with 72% suggesting that this message would encourage them to consider and discuss organ donation.
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Figure 31: The ability of different messages to encourage or deter people from considering organ donation
Q17. Reading each message, please say if it would encourage you to discuss organ donation with friends and/ or family. Base: 684
Analysis of the same messages by individual ethnic groups highlights some important differences. While ‘one day it could be someone you know or love’ encourages discussion across the board, it resonates especially strongly with Indian, Pakistani and Bangladeshi groups where 74%, 81% and 84% are encouraged by the message compared to 60% and 64% of Caribbean and African groups. ‘All the major religions’ – while not wholly accurate – is particularly encouraging for the groups where there is a high Muslim population, underlying the importance of endorsement of organ donation. ‘Knowing your wishes’ resonates very strongly with Indian communities (86% stating that they found this message encouraging), but not at all with other groups where there is more fear of upsetting family members and concern about the family having to make a decision. Indian groups are also more motivated than other groups by the message about the importance of ‘making every opportunity count’ – underlining the desire expressed by some Hindus to help others and make a difference.
“Hinduism is about selfless service, devotion, and treating everyone with kindness” Older Male, Indian, Hindu
Messages about people from your community having saved lives, and calls to ‘give life back’ are much less motivating for the Pakistani and Bangladeshi groups, perhaps as a result of the concerns in these groups about organ donation being not allowed and not customary for Muslims.
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“Allah wants my body back – I am able bodied. Allah will ask why did you disable yourself?” Older Male, Bengali, Muslim
Figure 32: The ability of different messages to encourage by ethnicity
Q17. Reading each message, please say if it would encourage you to discuss organ donation with friends and/ or family. Base: 684
Despite these differences, there are consistencies in which messages strike a chord across the different groups. If we rank the messages in order of their encouragement scores there is an agreement in which messages are most effective with three messages appearing in four of the five BAME groups ‘top 5’. This will help prioritise key messages to work with:
Figure 33: Rank order appeal shows common appreciation for some of the same messages
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Q17. Reading each message, please say if it would encourage you to discuss organ donation with friends and/ or family. Base: 684
Although the number of alternative marketing messages suggested by participants in the research was limited, one key suggestion was for an improved explanation of the implications for organ donation and religion. This was suggested by a third of Pakistani and Bangladeshi participants indicating that people are likely to be more open to considering organ donation if more reassurances can be given about the stance taken on the subject by their faith. This underlines the importance of outreach programmes and continuing to work with faith leaders to facilitate more discussion and debate.
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9 Four key principles for any organ donation campaign In considering all of the contextual factors, influences, current information sources and reactions to existing organ donation campaign materials from around the world, the research identified 4 key principles that campaigns need to deliver against. While these can be applied to any organ donation campaign, we feel they can have a particularly positive impact as a framework for campaigns designed for BAME audiences:
INFORM EMPOWER ENCOURAGE INCLUDE
The goal of each of these is to tackle some of the knowledge gaps, give people the tools to make an informed choice, provide positive, motivating examples and ensure messages resonate. While all of these principles can be adapted to the needs of different campaign audiences we envisage them as especially pertinent in light of some of the findings from the BAME research:
INFORM: Provide BAME audiences with the information about organ donation they currently lack
EMPOWER: Equip people to make their own choice, to seek out information and guidance from trusted sources and given their decision the consideration it merits
ENCOURAGE: Help BAME communities to see the positives, benefits and wider consequences of organ donation
INCLUDE: Ensure that communications speak to the specific audiences at which they are aimed – tailored, relevant and inclusive. Failure to do see risks communications being overlooked as audiences perceive them as ‘not aimed at me’
Revisiting the commonly most motivating marketing messages – in Figure 28 below – illustrates how these 4 principles can be applied in practical terms when developing messages to encourage BAME audiences to consider organ donation. That said, it is crucial to keep in mind that marketing campaigns in isolation are unlikely to make a significant impact. A multi‐channel approach, working through communities, places of worship and faith leaders will put organ donation on the agenda, get people talking and in turn enable well targeted marketing messages to reinforce these efforts. It is clear when we marry up the messages with the principles that INFORMING, ENCOURAGING and INCLUDING need to come first, EMPOWERING is potentially a step too far and needs to follow once BAME audiences are further along the journey to considering organ donation.
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Figure 34: Rank order of appeal of messages combined with 4 key principles for a successful campaign
Q17. Reading each message, please say if it would encourage you to discuss organ donation with friends and/ or family. Base: 684
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10 Conclusions The research shows that one of the major challenges faced is that for BAME audiences, organ donation is simply not on the radar. As a topic it rarely if ever comes up and very few individuals have either first hand or anecdotal awareness of donors, donor families or patients. As a result, knowledge of what it involves is minimal. Similarly, people who support organ donation, and are on the ODR, are largely unaware of the consent process and have not discussed their wishes with loved ones – or with anyone else. While this lack of discussion is largely driven by lack of awareness of the need rather than any specific reluctance to speak out, help around how to start the conversation and deal with any objections would be very welcome. Both of these issues ‐ getting organ donation on the radar and helping supporters have potentially difficult or sensitive conversations – are challenges both with BAME audiences and the population as a whole.
Support for organ donation in principle is lower than within the population as a whole, and importantly, support in principle won’t necessarily translate into willingness to donate. The research identified several barriers underpinning attitudes to organ donation, the most critical of which are Mistrust, Lack of Information, Religion and Culture. Encouragingly, many people are open to further discussion and to learning more. That said, while Mistrust and Lack of Information may be relatively straightforward to address through education and awareness raising, the importance of addressing religious and cultural barriers cannot be underestimated and present a much greater challenge. The challenge is amplified in the –predominantly Muslim – Pakistani and Bangladeshi communities where religious and cultural influences appear to be more powerful and where there is more uncertainty about whether or not organ donation is permissible. Religious messaging – especially if credible sources of endorsement for organ donation can be identified – has significant potential to motivate Muslim communities and increase willingness to donate.
Across all of the communities in the research, the family has most influence on decisions about organ donation, as well as on most other important decisions. The research also confirms the importance of the community, and that for BAME audiences this often becomes an extension of family. As such, community has a significant supporting role as a channel of influence.
Promotional materials and videos that emphasise the positive and far reaching consequences of organ donation have most impact, particularly when tied to personal stories rather than messages that are more theoretical or ‘abstract’. Graphic (negative) imagery is a turn off, and information in the form of facts, figures and processes is welcomed but is open to misinterpretation if not rooted in context.
Of the communications messages tested, ‘One Day it could be someone you know or love – or even you – in need of a transplant’ has the most resonance / power, but
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tissue matching and the link between ethnicity, supply and demand is key to convey in order for people to really understand why they are being asked to consider organ donation and why it is so important that they think about it in the context of their own community.
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11 Recommendations Without negating the challenges faced in increasing consideration of and consent to organ donation in BAME audiences, the research identifies a number of opportunities for moving forward, using the 4 key principles identified. Together the four – INFORM, ENCOURAGE, INCLUDE and EMPOWER can be used to create a framework to underpin campaigns. The insights derived from the qualitative discussions in particular suggest that it is not necessary to adopt all four at the same time, but that the optimum approach will be to take people on a journey, the steps of which can be adapted and used together or separately to fit with resource, budgets and time constraints.
While there is some overlap, the recommendations from the research have been grouped under the key principles identified.
INFORM Communicate the importance of tissue matching within specific ethnic groups Concentrate on myth busting misconceptions around processes, safeguards and the impact of organn donatio on funeral and burial preparations Highlight the standpoints of different religions on organ donation, with particular emphasis on the basis for support of organ donation in Islamic teaching Develop bespoke messages for specific communities
ENCOURAGE Use community centres and places of worship as engagement points – focusing on whole families where feasible Work with donor families and organ recipients within communities to enable them to act as ‘champions’ and advocates of donation Use reciprocal messaging i.e. ‘One Day it could be someone you know or love – or even you – in need of a transplant’ Avoid messaging that focuses on explicitly negative images or appears to ‘blame’ communities for not supporting organ donation Show the wider consequences of donation; the impact on families/children/parents/ friends/members of the community
INCLUDE Use inclusive but not ‘token’ imagery – emphasise specific needs within specific communities Target communities in a very local way – through local community/sports/leisure/health centres/GP surgeries/hospitals/clinics as well as places of worship, schools, charities, libraries and so on Emphasise the importance of donation to people of the same ethnicity/within the same community, explaining clearly not just how important it is but why
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EMPOWER Provide non‐judgmental sources of reference and information for people to do their own research into organ donation Engage with local religious leaders at different levels to help communities to support donation Encourage thought leaders within the different religions to have the debate about organ donation and to themselves cascade this to local religious leaders and scholars
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Appendix
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12 Appendix
Qualitative Group Discussion Guide
NHSBT
Project: BAME Organ Donation 2014
Outline Discussion Guide – Group Discussions (90 minute)
Discussion plan overview
Introduction / warm Purpose of section: Put respondents at ease, introduce the 15 mins up research, find out some background details of respondents, relax them, get the respondents talking. To explore initial thoughts on what makes a campaign appear more impactful and motivating
Awareness and Purpose of section: To explore general understanding of what is 20 mins attitudes towards involved in organ donation, factors that may hold someone back organ donation from registering, factors that may encourage someone to register. Awareness of facts surrounding it and establish understanding of where misconceptions may come from
Media usage and Purpose of section: To discover what influences respondents in a 40 mins key channels general and religious context. To explore which medias (TV/radio/press/websites) they interact with most and within that discover how often and favourite content/providers. Discover through a gallery exercise showcasing current print and video media used to promote organ donation which respondents view as most/least impactful and why; delving into tone, language and imagery used
Stimulating public Purpose of section: Working in groups to get respondents to build 10 mins debate up further some of their ideas around how to raise the profile of Organ Donation most effectively
Summary Purpose of section: Summarise the key learnings from the research 5 mins
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1. Introduction and warm up 15 mins Purpose of section: Put respondents at ease, introduce the research, find out some background details, relax them, get them talking. To understand their religious stance in some detail. To explore initial thoughts on what makes a campaign appear more impactful and motivating.
Thank respondents for coming, explanation of purpose and operation of interview
Introduce self, Optimisa – who, what we are
Purely research – no selling, no right/wrong answers, importance of honesty
Structure of interview, e.g. informal, timings, what doing/talking about
Confidentiality of personal details, no follow‐up – MRS etc.
Audio/video recording/viewing – why, uses and permission
Any questions, concerns?
Ask if respondents can introduce themselves:
o who they live with
o what they do for a living
o what they do in their spare time
Thinking about your life generally….
Who are the most important people in your lives?
What else is important to you? If necessary prompt certain family members, certain friends, neighbours local community leaders, community groups and
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activities, newspapers, TV channels, radio, websites, fatwas, places of worship, religious groups, the Bible, the Qur’an, the Veda, the Torah, other religious documents etc
Who do you speak to when you have a big/small decision coming to make?
Where do local/community channels such as community groups, local papers, local magazines, local radio, events, neighbours etc. appear?
Where do they go for information and advice on particular issues? (eg. friend, partner, family, news, websites, TV, mosque etc)
Who or what has been the greatest influence in their life? (eg. Parent, child, Friend, religion/priest, celebrity?)
If needed prompt the role of religion on daily life
Do you have a specific order/denomination within your faith? What is it? (brief explanation)
If you had to tell a stranger the 3 most important things about your faith, what would they be?
How important/relevant do you think charity is within your faith?
How do you give to charity?
Do you feel giving is a religious /holy act or just the mark of any humane individual?
Are some people more worthy of charity than others?
Who or what influences you to give? (Probe all influences ‐ family, friends, media etc)
…
Can you name some charities you’ve seen advertising for recently?
How much can you remember around what that advertising was about?
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Can you recall the key message of it?
What part of these campaigns caught your eye?
What do you think makes a charity campaign more motivating/impactful? Why? Probe channel
2. Awareness and attitudes towards organ donation 20 mins Purpose of section: To explore general understanding of what is involved in organ donation, factors that may hold someone back from registering, factors that may encourage someone to register. Awareness of facts surrounding it and understanding of where misconceptions may come from
If I didn’t know anything about organ donation how would you describe it to me?
Moderator to note down the group consensus/key words they would use to describe organ donation
What do you know about organ donation? Spontaneous and then prompt:
o the need for organs/tissue (which kinds of organs most needed, where is the need greatest) o the process of becoming an organ donor o the status of donor cards o the process of registration to be become an organ donor o providing consent How do you imagine/how have you come across/would find out about this information?
What factors do you imagine would hold someone back from registering as a donor? Spontaneous discussion first, with moderator noting down any key themes/commonly held views and exploring any themes raised in the 2013 BAME research – awareness, fear, inertia, mistrust, religion, other people, then show boards (each respondent will have own copy in task book for ease of reading/recall)
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WORD BOARDS: Moderator to introduce 2 statement boards of barriers (SEE APPENDIX 1), explaining that these are some things real people have said about organ donation.
Moderator to ask respondents to circle in their task books any statements that resonate with them. Each respondent then to fill in the box at bottom of the page (if not on the register, what is the biggest single reason they are not / if on the register, what do they think is the biggest reason other people don’t sign up). Once everyone has done this, briefly discuss as a group:
Which of the statements struck most of a chord with you?
Were there any that really didn’t?
MODERATOR TO FOCUS ON BARRIERS ARISING AMONG BAME GROUPS FROM 2013 RESEARCH TO UNPICK HOW THEY FEEL ABOUT THESE
Now let’s think about why some people do want to be donors
What factors to you imagine would encourage people to register as donors? Spontaneous then moderator to prompt around family/personal experience, more exposure to the need, greater knowledge of the process, greater knowledge of religious stance.
WORD BOARDS: Moderator to introduce board of statements (SEE APPENDIX 2) ask respondents to circle in their task books any statements that resonate with them. Each respondent then to fill in the box at bottom of the page (if on the register, what is the biggest single reason why they signed up / if not on the register, what do they think is the biggest reason other people sign up). Once everyone has done this, briefly discuss as a group:
Which of the statements struck most of a chord with you?
Were there any that really didn’t?
Moderator explain that ‘People from Black or Minority Ethnic Groups are up to three times more likely to need an organ transplant’
o Reactions to this
o How does knowing this make you feel?
MODERATOR TO FOCUS ON MOTIVATIONS ARISING AMONG BAME GROUPS FROM 2013 RESEARCH TO UNPICK HOW THEY FEEL ABOUT THESE
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Where do you perceive Organ donation to sit in the bigger scheme of giving?
What sort of person donates an organ after death?
Can you paint a mental picture? Is it someone like them?
How inspiring or not does that picture sound?
Thinking about everything we have discussed so far, what would encourage them/people to register as donors? If needed use prompts:
o did any of the facts change their opinion? o greater awareness of/ reassurance about the process o greater awareness/understanding about need/benefits o reassurance about religious acceptability o reassurance about life/death issue o reassurance about treatment of donor’s body post death o saving lives/helping others to go on living
3. Media usage and key channels 40 mins
Purpose of section: To discover through a gallery exercise showcasing current print and video media used to promote organ donation which respondents view as most/least impactful and why; delving into tone, language and imagery used. To discover what influences them in a general and religious context. To explore which media they interact with most and within that discover how often and favourite content/providers.
TASK ‐ GALLERY WALK: Moderator to explain the gallery walk exercise and to ask respondents when walking around looking at the images AND MESSAGES to note down in their task books the three they feel most speak to them & why, the one they feel has least impact on them and why, and how each of these four makes them feel.
Which three have you noted down as speaking to you the most? Why those ones?
Which one did you note down as not speaking to you? Why that one?
Overall which one do you think had the best tone? Why? Spontaneous but if necessary moderator to prompt around that this may be calm, positive, persuasive, reassuring
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Which do you think had the best imagery? Why?
Which do you think used the best language/message? Why?
What is it trying to tell you?
VIDEO PRESENTATION: Moderator to show as many of the videos as time permits, prioritising as necessary. Once all have been seen, discuss as a group:
What do you think of those videos we just looked at?
Which had the most impact on you? What was it about that particular video that struck a chord?
Were there any that didn’t make much of an impact? Why is that do you think?
Were there any you really didn’t like? Why was that?
Overall which one do you think had the best tone? Why? Spontaneous but if necessary moderator to prompt around that this may be calm, positive, persuasive, reassuring
Which do you think had the best use of imagery? Why?
Which do you think used the best language/message? Why?
What is it trying to tell you?
If you had to choose one to really get the message across, which one would you choose?
Are there any particular programmes or events that people attend that would be a good forum for spreading the word? Why those?
Who needs to be delivering, supporting or endorsing these messages, for them really to have an impact on people?
Are there other ways, perhaps more linked to your local community/place of worship that are important as ways of communicating?
5. Stimulating public debate 10 mins
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Purpose of section: Working in two small teams to get respondents to build up further some of their ideas around how to raise the profile of organ donation most effectively
Moderator to split group into two teams and ask them to think taking into account all we’ve discussed tonight (facts around OD, media channels, advertising currently used) what they would do if they were in charge of promoting organ donation?
GROUP TASK ‐ YOU’RE IN CHARGE: Moderator to hand out task sheet that prompts groups to consider:‐ What they would promote?
What would be their key message?
How would they promote?
Where they would promote?
How they would encourage discussion/get people talking?
What might address some of the barriers raised earlier?
Moderator to ask teams to report back their plans to each other and to discuss what they think of them, anything they want to steal (agree with) and anything they disagree with and why 6. Summary 5 mins
Moderator to conclude by explaining that the most important takeout of the research is to aid NHSBT in discovering how best they can communicate with different groups more effectively:‐ Is there anything else you’d like to add in that vein?
Anything extra you think they can do to address any of the barriers mentioned at the start?
THANK & CLOSE
APPENDIX 1 I would worry my organs wouldn’t be used for transplantation
I'm too old ‐ my organs wouldn't be of any use
I worry my family might be upset if I donated my organs (15% Nat.Rep, 22% BME)
I worry hospital staff might not do their best to save my life if they knew my organs were available for donation (BME 14%, Black Caribbean‐ 24%)
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I want my body to be whole when it is buried or cremated (8% Nat.Rep, 12% BME)
I worry that organ donation will delay the burial or cremation time (BME‐ 7%, Pakistani 13%‐ All Black net 0%)
I think organ donation is against my culture (4% Nat.Rep, 6% BME, Bangladeshi 23%)
I think organ donation is against my religion / faith (2% Nat. Rep, 13% BME, 36% Pakistani Bangladeshi 26%)
I don’t want to donate to someone who does not deserve it
I don't want to suffer after death (5% Nat.Rep, 6% BME, 15% Pakistani)
I have an illness that will stop doctors wanting my organs
I wouldn’t accept an organ transplant, so I wouldn’t donate an organ
I can't give blood so I don't think I could donate my organs
I worry I could still be alive when they do the operation
I don't want to donate to someone from a different religion / faith to me
I don't want to donate to someone from a different community to me
I don't want to think about my death
I don’t know enough about it (11% Nat.Rep, 17% BME)
APPENDIX 2 (None which score higher than nat.rep marked on top 3 statements) Someone I love could one day need a transplant (3‐ 41% BME, 58% Nat Rep., 51% Black Caribbean)
My organs will only go to waste when I die (BME‐ 37%, Indian 49%, 50% Hinduism)
I would accept an organ transplant so I should be prepared to donate one (BME‐ 37%, Black Caribbean‐47%, Hinduism 42%, Non‐religious 47%)
People who are organ donors are viewed as extremely unselfish people
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I feel a social responsibility to donate my organs (BME‐ 13%, Indian‐ 23%, Hinduism 25%)
I would feel proud to donate my organs
It would be improving and saving the lives of others (1‐ 55% BME, 65% Nat Rep.)
I want to make something good out of a sad situation (BME‐ 25%, Black Caribbean 43%, 54% Hinduism)
It's something that everyone should do (BME‐ 20%, Indian‐ 30%, Hinduism‐ 40%)
I want to make sure that there are enough organs for those who need them
It makes me feel good to know that I could be helping someone when I die (2‐ 46% BME, 53% Nat Rep., 52% Indian, 50% Black Carribean)
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Qualitative depth discussion guide
NHSBT
Project: BAME Organ Donation 2014
Outline Discussion Guide – Depths (60 minute)
Discussion plan overview
Introduction / warm Purpose of section: Put respondent at ease, introduce the 15 mins up research, find out some background details of respondent, relax them, get the respondent talking. To explore initial thoughts on what makes a campaign appear more impactful and motivating
Awareness and Purpose of section: To explore general understanding of what is 15 mins attitudes towards involved in organ donation, factors that may hold someone back organ donation from registering, factors that may encourage someone to register. Awareness of facts surrounding it and establish understanding of where misconceptions may come from
Media usage and Purpose of section: To discover what influences respondent in a 20 mins key channels general and religious context. To explore which medias (TV/radio/press/websites) they interact with most and within that discover how often and favourite content/providers. Discover through a gallery exercise showcasing current print and video media used to promote organ donation which respondent view as most/least impactful and why; delving into tone, language and imagery used
Stimulating public Purpose of section: Working in groups to get respondent to build 5 mins debate up further some of their ideas around how to raise the profile of Organ Donation most effectively
Summary Purpose of section: Summarise the key learnings from the research 5 mins
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1. Introduction and warm up 15 mins Purpose of section: Put respondent at ease, introduce the research, find out some background details, relax them, get them talking. To understand their religious stance in some detail. To explore initial thoughts on what makes a campaign appear more impactful and motivating.
Thank respondent for coming, explanation of purpose and operation of interview
Introduce self, Optimisa – who, what we are
Purely research – no selling, no right/wrong answers, importance of honesty
Structure of interview, e.g. informal, timings, what doing/talking about
Confidentiality of personal details, no follow‐up – MRS etc.
Audio/video recording/viewing – why, uses and permission
Any questions, concerns?
Ask if respondent can introduce themselves:
o who they live with
o what they do for a living
o what they do in their spare time
Thinking about your life generally….
Who are the most important people in your lives?
What else is important to you? If necessary prompt certain family members, certain friends, neighbours local community leaders, community groups and activities, newspapers, TV channels, radio, websites, fatwas, places of worship, religious groups, the Bible, the Qur’an, the Veda, the Torah, other religious documents etc
Who do you speak to when you have a big/small decision coming to make?
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Where do local/community channels such as community groups, local papers, local magazines, local radio, events, neighbours etc. appear?
Where do you go for information and advice on particular issues? (e.g. friend, partner, family, news, websites, TV, mosque etc)
Who or what has been the greatest influence in your life? (e.g. Parent, child, Friend, religion/priest, celebrity?)
If needed prompt the role of religion on daily life
Do you have a specific order/denomination within your faith? What is it? (brief explanation)
If you had to tell a stranger the 3 most important things about your faith, what would they be?
How important/relevant do you think charity is within your faith?
How do you give to charity?
Do you feel giving is a religious /holy act or just the mark of any humane individual?
Are some people more worthy of charity than others?
Who or what influences you to give? (Probe all influences ‐ family, friends, media etc)
…
Can you name some charities you’ve seen advertising for recently?
How much can you remember around what that advertising was about?
Can you recall the key message of it?
What part of these campaigns caught your eye?
What do you think makes a charity campaign more motivating/impactful? Why? Probe channel
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2. Awareness and attitudes towards organ donation 15 mins Purpose of section: To explore general understanding of what is involved in organ donation, factors that may hold someone back from registering, factors that may encourage someone to register. Awareness of facts surrounding it and understanding of where misconceptions may come from
If I didn’t know anything about organ donation how would you describe it to me?
Moderator to note down the group consensus/key words they would use to describe organ donation
What do you know about organ donation? Spontaneous and then prompt:
o the need for organs/tissue (which kinds of organs most needed, where is the need greatest) o the process of becoming an organ donor o the status of donor cards o the process of registration to be become an organ donor o providing consent How do you imagine/how have you come across/would find out about this information?
What factors do you imagine would hold someone back from registering as a donor? Spontaneous discussion first, with moderator noting down any key themes/commonly held views and exploring any themes raised in the 2013 BAME research – awareness, fear, inertia, mistrust, religion, other people, then show boards (each respondent will have own copy in task book for ease of reading/recall)
WORD BOARDS: Moderator to introduce 2 statement boards of barriers (SEE APPENDIX 1), explaining that these are some things real people have said about organ donation.
Moderator to ask respondent to circle in their task books any statements that resonate with them. Each respondent then to fill in the box at bottom of the page (if not on the register, what is the biggest single reason they are not / if on the register, what do they think is the biggest reason other people don’t sign up). Once everyone has done this, briefly discuss as a group:
Which of the statements struck most of a chord with you?
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Were there any that really didn’t?
MODERATOR TO FOCUS ON BARRIERS ARISING AMONG BAME GROUPS FROM 2013 RESEARCH TO UNPICK HOW THEY FEEL ABOUT THESE
Now let’s think about why some people do want to be donors
What factors to you imagine would encourage people to register as donors? Spontaneous then moderator to prompt around family/personal experience, more exposure to the need, greater knowledge of the process, greater knowledge of religious stance.
WORD BOARDS: Moderator to introduce board of statements (SEE APPENDIX 2) ask respondent to circle in their task books any statements that resonate with them. Each respondent then to fill in the box at bottom of the page (if on the register, what is the biggest single reason why they signed up / if not on the register, what do they think is the biggest reason other people sign up). Once everyone has done this, briefly discuss as a group:
Which of the statements struck most of a chord with you?
Were there any that really didn’t?
Moderator explain that ‘People from Black or Minority Ethnic Groups are up to three times more likely to need an organ transplant’
o Reactions to this
o How does knowing this make you feel?
MODERATOR TO FOCUS ON MOTIVATIONS ARISING AMONG BAME GROUPS FROM 2013 RESEARCH TO UNPICK HOW THEY FEEL ABOUT THESE
Where do you perceive Organ donation to sit in the bigger scheme of giving?
What sort of person donates an organ after death?
Can you paint a mental picture? Is it someone like them?
How inspiring or not sdoe that picture sound?
Have you ever had a conversation with friends or family members about your wishes?
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What do you think are the reasons why people do have conversations? What prompts them?
How are they different to you (if appropriate)?
For those who have registered but not discussed wishes:
How strongly do you feel about not being able to discuss your wishes? What impacts on this?
What has held you back from discussing your wishes? DISCUSS IN DETAIL
Describe how you feel when you think about talking to them about your decision?
What do you think could enable you to have those conversations?
Thinking about everything we have discussed so far, what would encourage them/people to register as donors? If needed use prompts: o did any of the facts change their opinion? o greater awareness of/ reassurance about the process o greater awareness/understanding about need/benefits o reassurance about religious acceptability o reassurance about life/death issue o reassurance about treatment of donor’s body post death o saving lives/helping others to go on living
3. Media usage and key channels 20 mins
Purpose of section: To discover through a gallery exercise showcasing current print and video media used to promote organ donation which respondent view as most/least impactful and why; delving into tone, language and imagery used. To discover what influences them in a general and religious context. To explore which media they interact with most and within that discover how often and favourite content/providers.
TASK ‐ GALLERY WALK: Moderator to explain the gallery walk exercise and to ask respondent when walking around looking at the images AND MESSAGES to note down in their task books the three they feel most speak to them & why, the one they feel has least impact on them and why, and how each of these four makes them feel.
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Which three have you noted down as speaking to you the most? Why those ones?
Which one did you note down as not speaking to you? Why that one?
Overall which one do you think had the best tone? Why? Spontaneous but if necessary moderator to prompt around that this may be calm, positive, persuasive, reassuring
Which do you think had the best imagery? Why?
Which do you think used the best language/message? Why?
What is it trying to tell you?
VIDEO PRESENTATION: Moderator to show as many of the videos as time permits, prioritising as necessary. Once all have been seen, discuss:
What do you think of those videos we just looked at?
Which had the most impact on you? What was it about that particular video that struck a chord?
Were there any that didn’t make much of an impact? Why is that do you think?
Were there any you really didn’t like? Why was that?
Overall which one do you think had the best tone? Why? Spontaneous but if necessary moderator to prompt around that this may be calm, positive, persuasive, reassuring
Which do you think had the best use of imagery? Why?
Which do you think used the best language/message? Why?
What is it trying to tell you?
If you had to choose one to really get the message across, which one would you choose?
Are there any particular programmes or events that people attend that would be a good forum for spreading the word? Why those?
Who needs to be delivering, supporting or endorsing these messages, for them really to have an impact on people?
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Are there other ways, perhaps more linked to your local community/place of worship that is important as ways of communicating?
5. Stimulating public debate 5 mins
Purpose of section: respondent to build up further some of their ideas around how to raise the profile of Organ Donation most effectively
What they would do if they were in charge of promoting Organ Donation?
What they would promote?
What would be their key message?
How would they promote?
Where they would promote?
How they would encourage discussion/get people talking?
What might address some of the barriers raised earlier?
6. Summary 5 mins
Moderator to conclude by explaining that the most important takeout of the research is to aid NHSBT in discovering how best they can communicate with different groups more effectively:‐ Is there anything else you’d like to add in that vein?
Anything extra you think they can do to address any of the barriers mentioned at the start?
THANK & CLOSE
APPENDIX 1 I would worry my organs wouldn’t be used for transplantation
I'm too old ‐ my organs wouldn't be of any use
I worry my family might be upset if I donated my organs (15% Nat.Rep, 22% BME)
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I worry hospital staff might not do their best to save my life if they knew my organs were available for donation (BME 14%, Black Caribbean‐ 24%)
I want my body to be whole when it is buried or cremated (8% Nat.Rep, 12% BME)
I worry that organ donation will delay the burial or cremation time (BME‐ 7%, Pakistani 13%‐ All Black net 0%)
I think organ donation is against my culture (4% Nat.Rep, 6% BME, Bangladeshi 23%)
I think organ donation is against my religion / faith (2% Nat. Rep, 13% BME, 36% Pakistani Bangladeshi 26%)
I don’t want to donate to someone who does not deserve it
I don't want to suffer after death (5% Nat.Rep, 6% BME, 15% Pakistani)
I have an illness that will stop doctors wanting my organs
I wouldn’t accept an organ transplant, so I wouldn’t donate an organ
I can't give blood so I don't think I could donate my organs
I worry I could still be alive when they do the operation
I don't want to donate to someone from a different religion / faith to me
I don't want to donate to someone from a different community to me
I don't want to think about my death
I don’t know enough about it (11% Nat.Rep, 17% BME)
APPENDIX 2 (None which score higher than nat.rep marked on top 3 statements) Someone I love could one day need a transplant (3‐ 41% BME, 58% Nat Rep., 51% Black Caribbean)
My organs will only go to waste when I die (BME‐ 37%, Indian 49%, 50% Hinduism)
I would accept an organ transplant so I should be prepared to donate one (BME‐ 37%, Black Caribbean‐47%, Hinduism 42%, Non‐religious 47%)
People who are organ donors are viewed as extremely unselfish people
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I feel a social responsibility to donate my organs (BME‐ 13%, Indian‐ 23%, Hinduism 25%)
I would feel proud to donate my organs
It would be improving and saving the lives of others (1‐ 55% BME, 65% Nat Rep.)
I want to make something good out of a sad situation (BME‐ 25%, Black Caribbean 43%, 54% Hinduism)
It's something that everyone should do (BME‐ 20%, Indian‐ 30%, Hinduism‐ 40%)
I want to make sure that there are enough organs for those who need them
It makes me feel good to know that I could be helping someone when I die (2‐ 46% BME, 53% Nat Rep., 52% Indian, 50% Black Carribean)
tTask Bookle ‐ Individual
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12.1 Task Sheet‐ Group exercise
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Marketing Images
Students at the University of St Andrews have joined forces with the NHS to help promote organ donation NHS Blood and Transplant campaign
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Northern Ireland campaign Private organ donation project by Felipe Franco
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Private organ donation project by Steven Anger
NHS Blood and Transplant, Norwich roadshow
Forever Alive campaign France Adot campaign
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France Adot campaign Private organ donation project by Felipe Franco
NHS Blood and Transplant Image Vision Foundation of India campaign
NHS Blood and Transplant campaign
Private organ donation project by Felipe Franco
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Donate life America campaign Middle East campaign
New York Organ Donor Network campaign E.B.A.I campaign
Scotland campaign Take Heart campaign
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France Adot campaign Vision Foundation of India campaign
IMIP campaign Health Ministry Malaysia campaign
New York Organ Donor Network campaign Private organ donation project by Michel Sfeir Job number 82 CONFIDENTIAL Optimisa Research
Health Ministry Malaysia campaign Health Ministry Malaysia campaign
NHS Blood and Transplant campaign NHS Blood and Transplant campaign
NHS Blood and Transplant campaign NHS Blood and Transplant campaign
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NHS Blood and Transplant campaign NHS Blood and Transplant campaign
NHS Blood and Transplant campaign Donate Life Australia image
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NHS Blood and Transplant campaign
Donate Life America
Video links Vid 1‐ Pass it on when you’re done with it‐ http://www.youtube.com/watch?v=75HjFi4_r10
Vid 2‐ Leila‐ http://www.youtube.com/watch?v=Mo01RI2‐DdU
Vid 3‐ Donate Life‐ http://www.youtube.com/watch?v=rE2iqwZIPGM
Vid 4‐ Waiting to Live: Jai 'Wan's story, Gift of Life Michigan‐ http://www.youtube.com/watch?v=O1MESKkKVt4
Vid 5‐ Ian Fitch’s Life Goes On Donation Story‐ http://www.youtube.com/watch?v=zj‐ rfHvPxsk
Vid 6‐ . Donate Life Australia‐ http://temp.donatelife.gov.au/resources/culturally‐and‐ linguistically‐diverse‐audiences/faith‐language‐and‐cultural‐resources
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Quantitative questionnaire
ASK ALL Q1. Which radio stations have you listened to in the last week?
Interviewer instruction Please prompt using list. If the respondent mentions a different radio station please capture this at ‘Other’
1. BBC Radio 1
2. BBC Radio 2
3. BBC Radio 3
4. BBC Radio 4
5. BBC Radio 5 live
6. Asian Sound Radio
7. Betar Bangla
8. Buzz Asia
9. Capital
10. Choice FM
11. Heart
12. Kismat
13. Kiss
14. Magic
15. Manchester ASR
16. Radio XL
17. Sabras Radio
18. Spice
19. Sunrise
20. Spectrum Radio
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21. Unity 101
22. Other, (write in)
23. Other, (write in)
24. Other, (write in)
25. Don’t listen to the radio
ASK ALL Q2. Have you read any of the following community newspapers or magazines in the last month?
Interviewer instruction Please read out list. If the respondent mentions a different local newspaper please capture this at ‘Other’
1. Asian Age
2. Bangala Express
3. Caribbean Times
4. Des Pardes
5. Desi Xpress
6. London Bichitra
7. Nawa‐j‐jang
8. Nigerian Watch
9. New Nation
10. Notun Din Bengali Newsweekly
11. Pride Magazine
12. The Asian Times
13. The Eastern Eye
14. The Voice
15. Other, (write in)
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16. Other, (write in)
17. Other, (write in)
18. I’ve not read any local newspapers in the last month
ASK ALL Q3. Which of the following local TV channels have you watched in the last week?
Interviewer instruction Please read out list. If the respondent mentions a different local TV channel please capture this at ‘Other’
1. NvTv
2. City TV Broadcasting
3. Latest TV
4. Made in Bristol
5. Made in Cardiff
6. ETV
7. GGTV
8. Lincolnshire Living
9. London Live
10. Made in Leeds
11. Bay TV Liverpool
12. YourTV Manchester
13. Made in Tyne and Wear
14. Mustard
15. Notts TV
16. That’s Oxford
17. YourTV Blackpool & Preston
18. SLTV/Sheffield Live
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19. That’s Solent
20. Other, (write in)
21. Other, (write in)
22. Other, (write in)
23. I’ve not watched any local TV channels
Q4. And which of the following activities have you done in the last month?
Interviewer instruction Please read out list and select all that apply
1. Attended a religious service i.e. common prayer 2. Attended a community event such as a festival or religious celebration 3. Attended a community educational event such as a talk 4. Attended a health awareness event 5. Visited Facebook 6. Post a comment on twitter 7. Visit other social media (not Facebook or Twitter) 8. Travel by bus 9. Travel by train 10. Visit a health clinic/ doctors
If code 2 or 3 at Q4 (attended community event or educational event) Q5. How do you usually hear about upcoming community events? Interviewer instruction Please prompt using list and code everything that is mentioned
1. Through religious/ faith leaders at my place of worship 2. Through my local community centre 3. Posters in my local place of worship 4. Posters on local billboards 5. Posters in community centre 6. Through friends and family 7. Online
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8. Through local radio 9. Through local newsletters/ papers 10. Through local TV 11. Other, please write in:
ASK ALL Q6. Thinking about the following situations, who would be most likely to influence the decision you make? Interviewer instruction Please code one answer for each scenario
1. Friends 2. Family 3. Community 4. Religious/ faith leaders 5. Religious scripture 6. Online information
‐ Deciding which schools or professions to chose
‐ Arranging a funeral or memorial
‐ Choosing which political party to support
‐ Deciding if you should donate your organs after death
‐ Deciding who to marry
‐ Deciding where to live
Q7. How long have you and your wider family lived in the UK? Interviewer instruction Please code one answer
1. I am the first generation in my family to live in the UK 2. I am second generation in my family to live in the UK 3. I am third generation in my family to live in the UK
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4. More than three generations of my family have lived in the UK
Interviewer to read out: Organ donation is giving an organ to help someone who needs a transplant. You can be a live organ donor (where you donate stem cells or non‐vital organs to help someone else) or you can register to donate some or all of your organs after death.
We would like to ask you a few questions about organ donation after death to understand how you feel about this.
ASK ALL Q8. Firstly, which of these statements best describes your views on organ donation after death? It doesn't matter if you would donate your own organs or not, we just want to know how you feel about organ donation in principle. Interviewer instruction Please read out list and code one answer
1. I strongly support organ donation in principle 2. I support organ donation in principle 3. I neither support nor oppose organ donation in principle 4. I oppose organ donation in principle 5. I strongly oppose organ donation in principle 6. Don't know
ASK ALL Q9. To what extent have you heard about or discussed organ donation after death? Interviewer instruction Please read out list and select all that apply
1. It has been discussed in my place of worship 2. It has been discussed at a local community or health event 3. I’ve heard others discussing it but I have not discussed it myself 4. I have discussed it with a religious leader / clergy 5. I have discussed it with friends from my community 6. I have discussed it with friends outside my community 7. I have discussed it with family
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8. I have talked to someone in the medical profession (e.g. GP, nurse) about it 9. I have not discussed organ donation as it has never come up in conversation 10. I have not discussed organ donation and I would feel uncomfortable raising it in conversation 11. Don’t know 12. Other, write in:
ASK ALL Q10. Which of the following describes you? Interviewer instruction Please read out list and code one answer
1. I know a lot about organ donation after death and how my religion/ community feel about it 2. I have some understanding of organ donation after death and how my religion/ community feel about it 3. I know very little about organ donation after death and how my religion/ community feel about it 4. I know nothing of how my religion/ community would feel about organ donation after death
ASK ALL Q11. Which of the following might you do if you were looking to find out more about organ donation after death and whether your community or religion supports it? Interviewer instruction Please read out list and select all that apply
1. I would talk to a family elder 2. I would talk to my mother 3. I would talk to my father 4. I would talk to my spouse/ partner 5. I would talk to my son/ daughter 6. I would talk to a sibling 7. I would talk to a religious/ faith leader 8. I would talk to a close friend
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9. I would talk to a elder in my community (non‐family) 10. I would consult religious scripture 11. I would look online 12. Other, please write in: 13. Don't know 14. I would not discuss organ donation with anyone
ASK ALL Q12.Which of the following best describes how you personally feel about organ donation? Interviewer instruction Please read out list and code one answer
1. I definitely want to donate all of my organs after death if possible 2. I definitely want to donate some of my organs after death if possible 3. I would consider donating all of my organs after death 4. I would consider donating some of my organs after death 5. I don't know if I want to donate my organs after death 6. I definitely don't want to donate my organs after death
ASK ALL Q13. Have you signed up to the NHS Organ Donor Register? Interviewer instruction Please code one answer
1. Yes 2. No, I don’t know how to 3. No, I’ve got round to it 4. No, I’m not sure what it is 5. No, but my close friends and family know my wishes 6. No, I don’t wish to sign up to the Organ Donor Register 7. Don’t know
ASK ALL Q14. Below are some things that people have said about why they want to donate their organs. Which of these apply to you when thinking about whether you would consider donating your organs after death? Interviewer instruction
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Please read out list and select all that apply
1. Someone I love could one day need a transplant 2. My organs will only go to waste when I die 3. I would accept an organ transplant so I should be prepared to donate one 4. People who are organ donors are viewed as extremely unselfish people 5. I feel a social responsibility to donate my organs 6. I would feel proud to donate my organs 7. It would be improving and saving the lives of others 8. I want to make something good out of a sad situation 9. It's something that everyone should do 10. I want to make sure that there are enough organs for those who need them 11. It makes me feel good to know that I could be helping someone when I die 12. Other, please write in: 13. Don’t know 14. None of these
ASK ALL Q15. Below are some things that people have said about why they don't want to donate their organs. Which of these apply to you when thinking about whether you would consider donating your organs after death? Interviewer instruction Please read out list and select all that apply
1. I would worry my organs wouldn’t be used for transplantation 2. I worry my family might be upset if I donated my organs 3. I worry hospital staff might not do their best to save my life if they knew my organs were available for donation 4. I want my body to be whole when it is buried or cremated 5. I worry that organ donation will delay the burial or cremation time 6. I think organ donation is against my culture 7. I think organ donation is against my religion / faith 8. I don’t want to donate to someone who does not deserve it 9. I don't want to suffer after death
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10. I have an illness that will stop doctors wanting my organs 11. I worry I could still be alive when they do the operation 12. I don't want to think about my death 13. I don’t know enough about it 14. Other, please write in: 15. Don't know 16. None of these
ASK ALL Q16. Have you, or has someone you know ever needed an organ transplant? Interviewer instruction Please select all that apply
1. Yes, I have 2. Yes, a family member has 3. Yes, a friend in my community has 4. Yes, a friend outside my community has 5. I know of someone who has, but I don’t know them personally 6. No, I don’t know of anyone that has needed an organ transplant
Interviewer instruction We would like the respondent to self‐ complete these next two questions. Please ask them to read the marketing messages below and to say if it would encourage them to discuss organ donation with friends and/ or family
ASK ALL – self‐complete question Q17. We would now like you to read some marketing messages. Reading each message, please say if it would encourage you to discuss organ donation with friends and/ or family.
Encourage Discourage No effect
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1. All the major religions of the UK support the principles of organ donation and transplantation. Discuss, sign up and save lives 2. One donor can save or transform up to 9 lives 3. On average, 3 people a day die in need of a transplant because there are not enough organs available. 4. Blood and tissue types need to match for a successful transplant. Black, Asian and Minority Ethnic people are twice as likely to be on the transplant waiting list as there are not enough similar donors to provide successful donor matches. Help your community and save lives 5. 569 people in your community are waiting for a transplant. Join the Register, share your decision, save lives 6. A donor's gift and a patient's hopes are in good hands. We have a world class reputation for successful transplant outcomes 7. Give life back to your community ‐ The acute shortage of suitable organs means patients from the Black, Asian and Minority Ethnic communities will wait on average a year longer for a kidney transplant than a white patient 8. Being the relative of an organ donor is something to feel proud of 9. Giving an organ allows children the opportunity to spend more time with their parents 10. It’s unfair to leave your family with the burden of deciding whether or not to donate your organs. Share your decision 11. Fewer than 5,000 people die in circumstances where they can donate their organs so we need to make every opportunity count 12. One day it could be someone you know or love – or even you ‐ in need of a transplant 13. People from your community have saved lives. It’s something to support and be proud of 14. Knowing your wishes will help your family decide whether to donate your organs. Share your decision
ASK ALL ‐ OPEN QUESTION FOR RESPONDENT TO WRITE IN Q18. Are there any other messages that would encourage you to support organ donation and sign up to the organ donor register?
Please write in as much detail as possible
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