FINAL Organ Donation Report Oct 2013 0

Organ donation
Public attitudes and stakeholder engagement

in Northern Ireland 2013
cover1.indd 1 14/10/2013 09:44

Organ donation
Public attitudes and stakeholder engagement
in Northern Ireland 2013
Contacts at PHA
Naomi McCay and Catherine Millman
Health Intelligence
Contents
List of tables ............................................................................................................ 4

List of figures .......................................................................................................... 4
Executive summary................................................................................................. 6
1 Introduction ................................................................................................... 10
1.1 Background ............................................................................................... 10
1.2 Organ donation in Northern Ireland ........................................................... 10
1.3 Donation systems...................................................................................... 11
1.3.1 Presumed consent: the debate........................................................... 13
1.4 Notes on the report and statistical references ........................................... 14
2 The public engagement approach ................................................................ 15
2.1 Public attitudes survey .............................................................................. 15
2.2 Stakeholder engagement .......................................................................... 15
3 Public attitudes survey: attitudes and behaviours towards donation ....... 18
3.1 Awareness of the Organ Donor Register and registration on it .................. 18
3.2 Knowledge of organ donation .................................................................... 23
3.3 Attitudes towards organ donation .............................................................. 25
3.3.1 Spiritual (traditional) beliefs ................................................................ 27
3.3.2 Medical distrust .................................................................................. 28
3.3.3 The ick factor ..................................................................................... 29
3.3.4 Perceived benefits.............................................................................. 30
3.3.5 What drives people’s attitudes towards organ donation? .................... 31
3.3.6 Summary of factors underlying attitudes towards organ donation....... 32
3.4 Discussing donation wishes ...................................................................... 33
3.5 Willingness to accept organs ..................................................................... 37
3.6 Summary: Behaviours/attitudes and key variables .................................... 38
4 Public attitudes survey: registration systems ............................................. 39
4.1 Support for soft opt-out.............................................................................. 41
4.2 Anticipated response if soft opt-out is introduced ...................................... 45
4.3 Support for a mandatory system ............................................................... 46
5 Willingness in GP practices to become more involved in promoting organ
donation ................................................................................................................. 47
6 Stakeholder engagement findings ............................................................... 48
6.1 Improving organ donation.......................................................................... 48
6.1.1 Normalising organ donation ............................................................... 48
6.1.2 Provide correct information and dispel myths ..................................... 49
6.1.3 Other suggestions .............................................................................. 50
6.2 A public information campaign: support and key messages ...................... 51
2
6.2.1 Key messages ................................................................................... 51
6.2.2 The approach ..................................................................................... 51
6.3 Registration systems ................................................................................. 52
6.3.1 The proposal to introduce soft opt-out/presumed consent .................. 52
6.3.2 Advantages of soft opt-out/presumed consent ................................... 53
6.3.3 Concerns about soft opt-out/presumed consent ................................. 53
6.3.4 Medical distrust .................................................................................. 53
6.3.5 Family consent ................................................................................... 54
6.3.6 Loss of the notion that donation is a gift ............................................. 55
6.3.7 Creating public confusion ................................................................... 55
6.3.8 Political football .................................................................................. 56
6.3.9 Changing opinions ............................................................................. 56
6.3.10 Can more be done with the current system? ...................................... 57
7 Discussion ..................................................................................................... 58
7.1 Gaining support for organ donation – high potential to mobilise ................ 58
7.2 Opt-in or soft opt-out/presumed consent system ....................................... 59
7.3 Implications for public information campaign ............................................. 61
Appendix A: Topic guide used for stakeholder engagement discussion groups
................................................................................................................................ 62
Appendix B: Additional tables.............................................................................. 63
3
List of tables
Table 1: Method of engagement with HSC staff ...................................................... 16
Table 2: Public engagement programme: charities, waiting list, recipients and donor
families .................................................................................................................... 17
Table 3: Number of correct knowledge items........................................................... 24
Table 4: Support for organ donation by key variables .............................................. 26
Table 5: Summary of associations between attitudes towards organ donation and key
variables .................................................................................................................. 32
Table 6: Summary of behaviours/attitudes towards organ donation and key variables
................................................................................................................................ 38
Table 7: Knowledge score by key variables in public attitudes survey (n=1,012) ..... 63
List of figures
Figure 1: Percentage of population on the ODR, by UK region................................ 12
Figure 2: Source of ODR registration for Northern Ireland ....................................... 12
Figure 3: Relationships between key variables and registering on the ODR (n=650)19
Figure 4: Chart showing respondents' ODR status, and potential status (full sample
n=1,012) .................................................................................................................. 20
Figure 5: Reasons for being unlikely to register on the ODR in the near future
(unprompted, n=174) ............................................................................................... 21
Figure 6: Reasons for not wanting to donate (prompted, n=60) ............................... 22
Figure 7: Responses to six knowledge items (n=1,012)........................................... 23
Figure 8: Respondents' views of organs/tissue that can be transplanted (n=1,012) . 24
Figure 9: Attitudinal items indicating support for organ donation .............................. 25
Figure 10: Frequency of responses for each item on the ‘spiritual (traditional) beliefs’
subscale (n=1,012).................................................................................................. 27
Figure 11:Frequency of responses for each item on the 'medical distrust' subscale
(n=1,012)................................................................................................................. 28
Figure 12: Frequency of responses for each item on ‘the ick factor' subscale
(n=1,012)................................................................................................................. 29
Figure 13: Frequency of responses for each item on 'perceived benefits' subscale
(n=1,012)................................................................................................................. 30
Figure 14: What drives attitudes about organ donation? (n=1,012) ......................... 31
Figure 15: Attitudes towards discussing organ donation wishes with family/close
friends (n=1,012) ..................................................................................................... 33
Figure 16: Percentage of respondents who had talked to their family/close friends
about donation wishes (n=1,012) ............................................................................ 34
Figure 17: Family’s/close friends’ knowledge of, and agreement with, donation
wishes (n=1,012) ..................................................................................................... 35
Figure 18: Family’s/close friends’ awareness of, and agreement with, donation
wishes (n=1,012) ..................................................................................................... 36
Figure 19: Awareness of donation wishes of family/close friends ............................ 36
Figure 20: Willingness to accept an organ ............................................................... 37
Figure 21: Understanding of the current registration system used in Northern Ireland
(n=1,012)................................................................................................................. 40
Figure 22: Ways in which respondents think the registration system in Northern
Ireland will change (n=290) ..................................................................................... 40
Figure 23: Reasons for being in favour of the introduction of a soft opt-out system
(unprompted, n=570) ............................................................................................... 41
Figure 24: Reasons for being against a soft opt-out system (unprompted, n=178) .. 42
4
Figure 25: Proportion of respondents who were supportive of changing to a soft opt-
out system (n=1,012) .............................................................................................. 43
Figure 26: Proportion of respondents who agreed that 'everyone should be presumed
to be an organ donor unless they register a wish otherwise' (n=1,012).................... 43
Figure 27: Attitudinal statements relating to the introduction of a soft opt-out system
................................................................................................................................ 44
Figure 28: Agreement with 'Everyone should be presumed to be an organ donor
unless they register a wish otherwise’ (n=1,012) ..................................................... 45
Figure 29: Respondents' anticipated reaction if the soft opt-out system is introduced
(n=1,012)................................................................................................................. 45
Figure 30: Support for mandatory registration system (n=1,012) ............................. 46
Figure 31: Respondents’ preferred way to register their donation wishes if a
mandatory system was to be introduced in Northern Ireland (n=1,012) ................... 46
Figure 32: Willingness in GP surgeries for staff to become more involved in organ
donation .................................................................................................................. 47
5
Executive summary
In June 2013, a representative sample of the public (n=1,012) responded to a survey
about their attitudes towards organ donation. At the same time, a process of
stakeholder engagement began, which involved 16 discussion groups with key
stakeholders as requested by the Health Minister (including organ donation charities,
those on the transplant waiting list, transplant recipients, donor families, and Health
and Social Care staff). Discussion groups took place between June and August 2013
and proformas were also completed. The central purpose of this public and
stakeholder engagement process was to inform the direction of a public information
campaign that will be developed by the Public Health Agency (PHA).
Organ donation and registration on the Organ Donor Register
Eighty four percent of respondents supported the idea of organ donation. However,
support was lower for the idea that we should all register for organ donation (55%) or
that it is unacceptable not to donate your organs (26%).
More than a third (36%) of respondents were not aware of the Organ Donor Register
(ODR). Awareness was lowest among the youngest (16–29 years) and oldest (over
65 years) age groups.
Those who had no awareness of, or had not yet registered on, the ODR were asked
about future intentions to sign the ODR. Findings show that there is strong potential
to mobilise 29% of respondents who said they would be likely to sign the ODR in the
future, and potential to persuade a further 30% who did not know whether they would
register. Indeed, only 16% of respondents said they were unlikely to, or definitely not
likely to, register on the ODR.
Reasons for respondents not signing the ODR included: not wanting to donate
(35%), having not thought about it (31%), believing organ donation is against
religious beliefs (9%), and being unclear about how to register (5%). Of those who
said they did not want to donate (n=60), the majority said they did not want their body
experimented on (84%).
Knowledge about organ donation was generally low among respondents, who
answered on average three questions out of seven correctly. Approximately one in
five respondents incorrectly thought ‘it is possible for a brain dead person to recover
from their injuries’, ‘the same doctors who look after you when you are seriously ill
perform transplants’ and ‘only the organs of younger people are good for
transplantation’.
Four factors were found to drive respondents’ attitudes towards organ donation, of
which ‘spiritual (traditional) beliefs’ (eg ‘the body should be kept whole for burial’) was
the main one. This was followed by ‘medical distrust’ (eg ‘if I sign an organ donor
card, doctors may take away my organs before I’m actually dead’), the ‘ick’ factor (eg
‘I don’t like the idea of my body being cut into when I’ve died’) and ‘perceived
benefits’ (eg ‘organ donation is a gift of life for whoever receives it’).
Spiritual (traditional) beliefs, medical distrust and the ‘ick’ factor were negative
attitudes that were more prevalent in: those aged 65 years and over, those in
socioeconomic groups C2DE, Catholics, nationalists, those with a long-term limiting
6
illness or disability, those who described their health as fair/poor, and those who
were not registered on the ODR.
Seventy eight percent of respondents said they would be willing to accept an organ if
they needed one.
Younger people (aged 30–64 years), those in socioeconomic groups ABC1, those
with no long-term limiting illness or disability, those who rated their health as
excellent/good, and those who were exposed to organ donation or transplantation,
either personally or through family or friends, were more likely to be:
• supportive of organ donation;

• aware of the ODR;
• registered on the ODR;
• willing to accept an organ.
Discussing organ donation with your family/friends
Seventy eight percent of respondents agreed that it is important to discuss your

donation wishes with your family and/or friends. However, only 38% had done so and
only 43% thought their family/close friend would know their wishes.
Just over half (52%) of respondents said they knew the donation wishes of their
wife/husband/partner, and fewer knew the wishes of their parents (32%), siblings
(27%), children (29%) or close friend (26%).
Those who had discussed their donation wishes with their family/close friend were
more likely to: be aged 30–64 years, belong to socioeconomic group ABC1, be
unionist, have no long-term limiting illness or disability, rate their health as
excellent/good, be on the ODR and/or have been exposed to organ
donation/transplantation.
Eighty eight percent of those who said their family/close friend would know their
donation wishes thought their family/close friend would agree with their wishes, but
this fell to 29% when they did not think their family/close friend would know their
wishes. This suggests that people may be less likely to discuss their donation wishes
with their family/close friend if they are concerned their family/close friend would not
agree with their decision.
Sixty four percent did not think their family/close friend should be able to overturn
their donation wishes if they were approached for consent.
What can be done to improve organ donation in Northern Ireland?
Stakeholders felt it is important to normalise organ donation. Informing the public by

providing correct information and dispelling myths were considered essential.
Educating the younger generations was also considered crucial. These, in
conjunction with improving infrastructure within Health and Social Care, would be
important steps to increase organ donation within Northern Ireland.
There was unanimous support across all stakeholder groups for a well-resourced and
sustained public information campaign to raise awareness of organ donation and
7
make organ donation a cultural norm. Stakeholders felt that a public information
campaign should focus on discussing donation wishes with your family/friends. A
testimonial approach was considered effective in conveying memorable messages
about donation, not just from the perspective of recipients, but also of donor families.
Stakeholders felt it is important that any facts, figures or messages given in a public
information campaign should be positively framed – focus on the number of lives that
can be saved from donation rather than the number of people who die while waiting
on a transplant.
The soft opt-out/presumed consent debate
The current ‘opt-in’ system of organ donation, where individuals are asked to register
their willingness to be a donor after death, has been the subject of debate for many
years across the UK. Recently in Northern Ireland, there has been increased
discussion on a change from ‘opt-in’ to a system of ‘soft opt-out’/presumed consent,
where it is assumed that an individual wishes to be a donor unless they have opted
out by registering their objection.
A minority of respondents (29%) were aware of a current debate about the system for
organ donation in Northern Ireland. Fifty six percent of respondents said they would
be in favour of changing to a soft opt-out/presumed consent system, 18% said they
were against this change, 8% said they needed more information and 18% did not
know. However, when asked if they agreed with the statement ‘everyone should be
presumed to be an organ donor unless they register a wish otherwise’, fewer (49%)
agreed, indicating some confusion about the idea.
The majority (59%) of those who said they were in favour of changing to a soft
opt-out/presumed consent system (n=570) said the soft opt-out/presumed consent
system will save lives, while 25% said it will increase the number of organs available.
Fifty one percent of those who were against changing to a soft opt-out/presumed
consent system (n=178) said the change removes choice or takes control away from
the individual, while 16% said people might not be aware of the new system (and
therefore no choice is made).
In relation to stakeholders, support for soft opt-out/presumed consent was higher

among organ donation charities, transplant recipients, those on the transplant waiting
list, and the British Medical Association (BMA). Those who were less supportive of
the proposed legislative change emphasised that they were not strictly opposed to
the legislation, but believed now is not the right time and raised concern about the
public’s readiness.
Sixty two percent of respondents said they would not object to organ donation if the
soft opt-out/presumed consent system was introduced. Twenty two percent did not
know what they would do and 16% said they would register their objections to
donation (of which 2% were currently on the ODR).
Fifty four percent of respondents supported the idea of introducing a mandatory

system where people are required by law to make a decision about organ donation.
Twenty five percent were against this and 20% needed more information to help
them decide. The preferred mandatory registration system was through your GP
(59%).
8
Fifty seven percent of GPs in Northern Ireland said they would be willing to record
organ donation wishes on patient records.
The advantages of introducing soft opt-out/presumed consent legislation identified by

stakeholders included: marking a cultural change, encouraging altruistic behaviour
among the public, a potential increase in donors and available organs, and the ability
to capture those who are ambivalent about donation. At the least, the proposed
legislative change was considered by some to be better than doing nothing to raise
the profile of organ donation.
Concerns among stakeholders about the introduction of soft opt-out/presumed

consent included: the possibility of feeding into medical distrust (public perception of
a conflict of interest for medical staff considering end of life care), a general feeling
that people will not actively seek out an ‘opt-out’ register, and a fear that use of the
ODR (which will still be in operation) may decline. This means more families could be
in a situation of not knowing their loved one’s wishes, so decision-making (consent)
among donor families becomes more difficult. The pool of potential donors could
reduce from the current situation, where all families are asked to consider donation if
medically appropriate (whether their loved one is on the ODR or not), to one where
only the families of those not on the ‘opt-out’ register are asked.
Other concerns included: losing the notion that donation is a gift, creating public
confusion that stops people opting-in, and the issue becoming a ‘political football’.
There are general concerns that the gains made in Northern Ireland over the last five
years could be lost if the public is not fully in favour of a change.
Some stakeholders said they had changed their opinion from being supportive of the
proposed legislative change to becoming more cautious about implementing it at this
time.
Finally, 43% of respondents felt that more can be done with the current opt-in system
before changing to soft opt-out/presumed consent. Stakeholders noted that a change
in legislation would require a significant programme of raising awareness about the
opt-out registration system, while also continuing to promote organ donation among
the general public.
9
1 Introduction
1.1 Background
Through organ donation, one person can save or benefit the lives of up to nine
people. Organ donation is cost-effective for the NHS in comparison to treating those
in need of an organ. 1
The number of people currently on the transplant waiting list exceeds the number of
available organs, with a 40% increase on the waiting list since 2001. The number of
people on the transplant waiting list often underestimates those in need of a
transplant.
In response to the demand for available organs, the Organ Donation Taskforce 2
made 14 recommendations and set a target to increase organ donation across the
UK by 50% by 2013. Recently, NHS blood and transplant (NHSBT) provided a
detailed strategy Taking organ transplantation to 2020 3, which aims to increase
donation consent to above 80%.
The General Medical Council (GMC) guidance Treatment and care towards the end
of life: good practice in decision making requires consultant staff who have clinical
responsibility for patients who are potential donors to exercise a duty to consider
organ donation as part of end-of life care 4.
1.2 Organ donation in Northern Ireland
In Northern Ireland, a total of 123 transplants took place in 2012/13 and 190 people
were on the transplant waiting list as of March 2013 5. Approximately 15 people die
each year while waiting for a transplant.
In total, 31% of the Northern Ireland population are on the organ donor register, a
figure that has been steadily increasing. However, more than a third of families
refuse to give consent to the donation of their loved one’s organs when faced with
this choice. A common reason for refusing to give consent is that the potential
donor’s family were not aware of their loved one’s wishes.
In Northern Ireland, the Assembly passed a motion in 2012 with a commitment that
the Health Minister would look at how organ donation could be increased. In
February 2013 6, a press release illustrated the need to engage with the public and
encourage debate around changing the current system of organ donation in Northern
1
http://www.organdonation.nhs.uk/newsroom/fact_sheets/cost_effectiveness_of_transplantati
on.asp
2
Organ Donation Taskforce. (2008). The potential impact of an opt-out system for organ
donation in the UK: an independent report from the Organ Donation Taskforce. Retrieved
from
http://www.bts.org.uk/Documents/Publications/The%20potential%20impact%20of%20an%20
opt%20out%20system%20for%20organ%20donation%20in%20the%20UK.pdf
3
http://www.nhsbt.nhs.uk/to2020/resources/nhsbt_organ_donor_strategy_long.pdf
4
NICE. (2011). Organ donation for transplantation: improving donor identification and consent
rates for deceased organ donation. NICE Guideline 135.
5
http://www.organdonation.nhs.uk/statistics/downloads/northern_ireland_june13.pdf
6
http://www.northernireland.gov.uk/index/media-centre/news-departments/news-
dhssps/news-dhssps-february-2013/news-dhssps-05022013-minister-organ-donation.htm
10
Ireland to a soft opt-out system. In April 2013 7, a ministerial press release outlined
work to be undertaken by the Public Health Agency (PHA), which would help inform a
major public information campaign to enhance awareness and understanding of
organ donation in a bid to increase donation rates. This involved a public
engagement programme and aimed to:
• survey public opinion across Northern Ireland on how increased consent for
organ donation can be achieved;
• have discussions with representatives from transplant-related charities, donor
families, those on the transplant waiting list and the HSC community, to bring
together the views of these important stakeholders.
1.3 Donation systems
Currently in the UK, organs and tissue from a potential donor will only be used if that
is their wish. According to the Human Tissue Act (2004), which came into effect in
September 2006 in England, Wales and Northern Ireland, organs and/or tissue from
a potential donor will only be used if they consent to donation prior to death. The act
stipulates a hierarchy of close relationships from which consent can be obtained in
the absence of the deceased’s consent. The hierarchy is as follows:
• a nominated representative;
• spouse/partner;
• parent/child;
• brother/sister;
• grandparent/grandchild;
• niece/nephew;
• step-parent;
• half-brother/half-sister;
• friend of long standing.
People can indicate their wishes in a number of ways, such as telling a relative or
close friend, carrying an organ donor card, or recording their wishes on the NHS
Organ Donor Register (ODR). Registering their wishes on the NHS ODR makes it
easier for HSC staff to establish a person’s wishes, but those closest to the person
are still asked for their consent to donate, to minimise any distress to the family.
Ultimately, this means the family makes the final decision regarding organ donation.
Approximately 90% of people in the UK8 support organ donation. UK figures for
2012/13 show that 55% of potential donor families consent to donation if their loved
one’s wishes are not known 9, with this figure rising to 96% when a loved one has
made their wishes known. In Northern Ireland, for donation following brain death, the
consent rate is 62% when the loved one’s wishes are not known, with this figure
rising to 88% when the loved one is on the ODR. Of those families who did not
consent to donation, 23% said the main reason was that they were not sure their
loved one would have agreed to donation. This highlights the importance of family
discussions about organ donation.
7
http://www.northernireland.gov.uk/index/media-centre/news-departments/news-
dhssps/news-dhssps-april-2013/news-dhssps-290413-minister-announces-next.htm
8
http://www.organdonation.nhs.uk/newsroom/fact_sheets/did_you_know.asp
9
http://www.organdonation.nhs.uk/statistics/potential_donor_audit/pdf/pda_report_1213.pdf
11
Over the last five years, the number of people on the ODR in Northern Ireland has
increased, with more than half a million people (567,200 10) now registered. This
represents 31% of the Northern Ireland population, which is a rise from 26% in
2008/09 (NHSBT data). Figure 1 shows that Northern Ireland, England and Wales
have very similar population levels registered on the ODR, while Scotland has the
highest ODR level in the UK, at 41% of the population.
Figure 1: Percentage of population on the ODR, by UK region
42 41
40 39
38
36
Percentage of population
36
34 NI
34
32 32 England
32 31 31 31
30 Scotland
30
29 30
28 Wales
28 27 27 29
26 26 27
26 26
24
22
2008/09 2009/10 2010/11 2011/12 2012/13
Organ donation and transplantation activity data: NHS blood transplant annual data published
April 2013.
In Northern Ireland, the most popular way of registering on the ODR has been a
driving licence application, followed by an NHSBT leaflet (see Figure 2). Where
gender is known, 45% on the ODR are male and 54% are female.
Figure 2: Source of ODR registration for Northern Ireland
Driving licence application 362,681
GP registration 37,485
Boots advantage card 37,907
NHSBT website 24,334
NHSBT leaflet 85,193
Organ donor line 2,968
Passport 3,915
Other 5,536
0 100,000 200,000 300,000 400,000
10
Data provided by NHSBT, correct as of 11 October 2013
12
1.3.1 Presumed consent: the debate
There are three main systems that can be used in countries to determine citizens’
donation status. The systems are as follows:
1. Opt-in (informed consent): Individuals opt-in or register their wishes to say they
are willing for their organs to be used after death. However, the family of the
deceased are asked for consent to proceed with donation.
2. Soft opt-out (presumed consent): Individuals are presumed to consent to organ
donation after their death unless they have registered their wishes to opt-out.
However, the family of the deceased are asked for consent to proceed with
donation.
3. Hard opt-out (mandated consent): Individuals are presumed to consent to
organ donation after their death unless they have registered their wishes to opt-
out. Consent from the family of the deceased is not sought before donation.
Due to the discrepancy between the number of donors and the number of organs
needed, the systems of organ donation within countries have been scrutinised, which
has led to considerable debate surrounding the issue.
Many European countries have adopted opt-out systems, of which Spain is

considered the ‘gold standard’ as donation rates there are the highest in the EU.
However, caution is advised in attributing rates of donation in Spain to a presumed
consent system. It is worth noting that donation rates in Spain did not rise until 10
years after presumed consent legislation was introduced 11. Furthermore, higher
donation rates coincided with improved infrastructure and organ donation being
accepted as a cultural norm.
Despite this cautionary note, countries with the highest organ donation rates have
presumed consent systems of donation. The Tuscany region of Italy partially
introduced a presumed consent system and doubled its organ donation rates within
one year. In Belgium, less than 2% of the population have opted out of the presumed
consent system. However, the introduction of a presumed consent or soft opt-out
system carries some risk. In Brazil, the introduction caused fear and distrust in the
government among some of the population, leading to the presumed consent law
being abolished.
In recognition of the complex issues and widely differing viewpoints surrounding

systems of consent, the Organ Donation Taskforce was asked to look at the range of
issues involved in an opt-out system of consent, taking into account the views of the
public and stakeholders on the clinical, ethical, legal and societal issues. This
resulted in a report by the Organ Donation Taskforce entitled The potential impact of
an opt-out system for organ donation in the UK: an independent report from the
Organ Donation Taskforce. 12 The report concluded that it was not appropriate to
introduce a presumed consent system in the UK at that time due to the risks involved
(including reducing levels of donation, increasing public distrust etc).
However, in September 2013 a new Human Transplantation Act received royal

assent in Wales. The act introduces a soft opt-out system for consent to deceased
11
Rieu, R. (2010). The potential impact of an opt-out system for organ donation in the UK.
Law, Ethics, and Medicine, 36, 534-538.
12
http://www.bts.org.uk/Documents/Publications/The%20potential%20impact%20of%20an%2
0opt%20out%20system%20for%20organ%20donation%20in%20the%20UK.pdf
13
organ and tissue donation from 2015. This law will come into effect fully on 1
December 2015. Until then, the current opt-in system will remain in place.
1.4 Notes on the report and statistical references

This report outlines key findings and secondary analyses from a survey of public
attitudes, knowledge and behaviour in relation to organ donation. Fieldwork for the
public attitudes survey was conducted in June 2013 and a series of discussion
groups with key stakeholders were convened between June and August 2013.
The questionnaire for the public attitudes survey was derived from several sources,
with the majority of questions having been previously validated. Questions relating to
current donation behaviours and proposed legislative changes, which were
previously used in research conducted by the Welsh and Scottish governments, were
included to maintain comparability as much as possible. Attitudinal questions were
previously validated in academic research (see section 4.1 for detailed discussion).
Please note that throughout the report, the Organ Donor Register is referred to as the
ODR.
The survey findings also refer to those who ‘were exposed to organ donation’. This
refers to any individual with a close family member, relation or friend who was the
recipient of an organ transplant, was currently on the waiting list at the time fieldwork
was being completed, or had ever donated an organ.
Throughout the report, results are presented giving mean (average) scores and are
often presented as M. Base numbers are included in all tables and figures to indicate
the number (n) of respondents on which percentages are based. In all instances,
percentages may not add up to 100 due to rounding.
This report refers to a statistical technique (factor analysis) that is used as a means
of data reduction. This technique is used to group items in a survey in a way that
allows for meaningful interpretation. For example, personality questionnaires are
usually described as having sub-scales (such as extraversion, neuroticism,
agreeableness etc) that have been identified using factor analytical techniques.
Statistically significant findings are shown where appropriate, and three levels of
significance are present: p≤0.05; p≤0.01; p≤0.001. For instance, if a finding is
significant at the p≤0.05 level, it would be expected in a similar population 95 times
out of 100. Significance is an indication of how likely it is that your results are due to
chance and a significance level of p≤0.05 indicates there is a 95% chance that the
results are true.
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2 The public engagement approach
The public engagement approach requested by the Health Minister has been two-
fold, including a survey of the general public and a series of discussions with relevant
stakeholders.
2.1 Public attitudes survey

Social Marketing Research (SMR) was procured to undertake the public attitudes
survey on behalf of the PHA in June 2013. SMR provided a statistical report, which is
available on request. The aim of the survey was to assess public knowledge and
attitudes to organ donation and assess support for changing the current opt-in
system.
A total of 1,012 members of the Northern Ireland general population (aged 16 years
and over) were surveyed between 14 and 30 June 2013 about their views on organ
donation. The sample was representative of the population based on Census 2011
data for gender, age, class and area (LCG and LGD) (for more detail on sampling
and a copy of the questionnaire see SMR report 13).
The surveys were conducted face-to-face with respondents in their own homes and
all data were recorded using Computer Assisted Personal Interviewing (CAPI)
devices. All interviewers were fully briefed about the topic of organ donation,
including consent systems. This face-to-face approach ensured that respondents
were clear about the issues covered in the survey and were able to ask questions
throughout.
The survey was divided into four sections as follows:
Section A: Attitudes and knowledge about organ donation

Section B: Awareness of ODR and current behaviour
Section C: Proposed changes to organ donation registration systems
Section D: Demographic information
2.2 Stakeholder engagement

The ministerial briefing identified key stakeholders to be included in the engagement
programme: HSC staff, transplant charities, those on the transplant waiting list and
donor families. Engagement was mainly through a series of discussion groups that
were moderated by PHA staff using a discussion topic guide (see Appendix A) and
supplemented by some online feedback from healthcare staff unable to attend.
Discussion groups took place at a time and location convenient to stakeholders to

maximise the number of individuals available to participate. The number of
individuals participating in groups ranged between 2 and 13, with discussions lasting
between 30 minutes and one and a half hours.
The HSC staff included in the stakeholder engagement were mainly those directly
involved in organ donation and included staff at all five Health and Social Care Trusts
13
SMR. (2013). Survey of public attitudes to organ donation in Northern Ireland. September
2013
15
(Table 1). HSC staff including clinicians (consultant physicians, surgeons,
anaesthetists and clinical leads for organ donation) and a small number of nurses
attended the groups.
The NHSBT invited the PHA to attend an organ donation event for nurses in June
2013. During the event, a stakeholder engagement proforma was distributed to all
nurses in attendance. Approximately 50 nurses (working in intensive care,
emergency departments and theatres) attended the event and 48 completed the
proforma. Of those who completed the proforma, 46 were female, 24 worked in
Intensive Care Units (ICUs), 18 worked in theatres and six worked in emergency
departments covering all Trust areas. The proforma asked nurses about their role
and views on organ donation, a public information campaign and consent systems for
donation.
An online version of the proforma was produced by the PHA and distributed via the
Critical Care Network (CCaNNI) email distribution list, with 20 responses received. 14
Of these, 12 were female, 15 were clinicians and five were nurses. Thirteen worked
in ICU and a further six said they worked in critical care. The remaining four were
anaesthetists. All of the respondents said they worked in a role related to organ
donation.
Table 1: Method of engagement with HSC staff
HSC staff
HSCT HSC area Approach Number attending
Western ICU Altnagelvin Group discussion 3 clinicians
1 sister
5 clinicians
Southern ICU Craigavon Group discussion
2 sisters
Belfast Regional ICU RVH Group discussion 11 clinicians
ICU City Group discussion 2 clinicians

1 SNOD
ICU Mater Group discussion 1 clinician
1 sister
ICU Antrim Area Group discussion 3 clinicians
Northern 4 clinicians
ICU/anaesthetists Causeway Group discussion
1 sister
South ICU Ulster Group discussion 2 clinicians
Eastern 1 SNOD
4 nurses
Regional CCaNNI Online proforma 20 responses
Regional Specialist nurses for organ Group discussion 6 SNODs
donation (SNODs)
Regional ICU/ED/Theatre nurses Proforma 48 responses
Regional Nurses Renal Unit City Hospital Group discussion 7 nurses
It is not possible to calculate a response rate for the proforma distributed to CCaNNI as there is no
14
way to tell whether all those on the mailing list received the invitation to complete the proforma as some
email addresses may not have been valid and some individuals may not have read the email received.
16
Other discussion groups were held with charities, those on the waiting list, transplant
recipients and donor families (see Table 2). Charities in the engagement programme
included the Northern Ireland Transplant Forum (including representatives from all
Northern Ireland charities), the Liver Support Group and Transplant Games NI. The
charity discussion groups also included those on the waiting list and transplant
recipients.
Table 2: Public engagement programme: charities, waiting list, recipients and

donor families
Number of
Group Representatives Approach attendees
Northern Ireland Charities Group discussion 13
Transplant Forum Recipients
Waiting list
Donor families Donor families Group discussion 3
Liver support group Recipients Group discussion 3
Charities
Recipients Recipients Group discussion 4
Transplant Sport NI Charities Group discussion 6
Recipients
Waiting list
British Medical
BMA Group discussion 5
Association
17
3 Public attitudes survey: attitudes and behaviours towards
donation
This section presents key findings from the public attitudes survey along with some
additional analyses that were conducted to gain a more in-depth understanding (top
level findings can be found in the SMR report, available on request).
3.1 Awareness of the Organ Donor Register and registration on it
When asked, two thirds of the sample (64%) said they were aware of the NHS Organ
Donor Register (ODR). Awareness of the ODR was significantly higher among:
• those aged 30–44 years (16–29 years, 59%; 30–44 years, 71%; 45–64 years,
67%; 65+ years, 58%, p≤0.001);
• socioeconomic groups ABC1 (ABC1, 71%; C2DE, 59%, p≤0.01);
• residents in the Southern Health and Social Care Trust area (Belfast, 60%;
Northern, 64%; South Eastern, 63%; Southern, 76%; Western, 59%, p≤0.01);
• Protestants (Catholics, 59%; Protestants, 70%; none, 61%, p≤0.01);
• unionists (nationalists, 61%; unionists, 72%; other, 56%; refused to answer, 59%,
p≤0.001);
• those with exposure to organ donation (79% v 60%, p≤0.01).
Of those who were aware of the ODR (n=650), 37% said they had put their name on
it, 52% had not and 11% could not remember. Putting one’s name on the ODR was
significantly associated with being aged 16–64 years, in socioeconomic groups
ABC1, having no limiting long-term illness or disability, being in excellent/good
health, and being exposed to organ donation. Individuals living in the Northern Health
and Social Care Trust area were least likely to have signed the ODR (Figure 3).
18
Figure 3: Relationships between key variables and registering on the ODR
(n=650)
Percentage of respondents
16–29 37
30–44 43
Age***
45–64 37
65+ 26
economic
ABC1 45
group***
Socio-
C2DE 28
Belfast 41
HSC Trust area***
Northern 29
South Eastern 40
Southern 38
Western 40
disability***
Long-term
Yes 28
limiting
illness/
No 40
Excellent/good 40
Health status*
Fair 31
Poor/very poor 22
Exposure***
Yes 51
No 31
0 10 20 30 40 50 60
***p≤0.001; **p≤0.01; *p≤0.05
19
Of the full sample (n=1,102), the number of people who said they were on the ODR
equated to approximately one quarter of respondents (Figure 4). Those who were
aware of the ODR but had not put their name on it (40% of the full sample) were
asked how likely they were to register in the future, with 18% of the full sample
saying they were very or fairly likely to register and 16% saying they did not know.
Only 6% of the full sample who were aware of the ODR said they were not very
likely, or definitely not likely, to register.
Among the 36% of the full sample who were not aware of the ODR, 31% said they
were likely to sign it, 40% did not know and 30% said they were not likely to sign it.
This suggests there is strong potential to encourage a significant proportion of the
population who said they are likely to sign the ODR in the future. Furthermore, there
may be some potential to encourage those who said they did not know whether or
not they would register in the future.
Figure 4: Chart showing respondents' ODR status, and potential status (full
sample n=1,012)
definitely not
2%
not very likely
4%
registered
don't know 24%
16%
very/fairly
likely
18%
Of which 31% likely
not aware to sign ODR in future
36% 40% don’t know
30% not likely
20
Further analyses were conducted to find out more about those respondents who said
they were not very likely or definitely not likely to sign the ODR in the near future.
These respondents were more likely to:
• be aged 65 years and over;

• be in socioeconomic groups C2DE;
• have a limiting long-term illness or disability;
• be in fair or poor health;
• live in the Western and Northern Health and Social Care Trust areas.
These respondents were asked why they were unlikely to put their name on the ODR
(Figure 5). Just over a third of respondents (35%) said they did not want their organs
donated. However, just under a third (31%) said they had not really thought about
organ donation, 3% said they would like to donate but had not yet got around to
registering, and 2% said they would like to register but did not know how. This
indicates that there is some potential to mobilise approximately 36% of respondents
who said they were unlikely to sign the ODR in the near future.
Figure 5: Reasons for being unlikely to register on the ODR in the near future
(unprompted, n=174)
Don’t want my organs to be donated 35
Haven’t really thought about it 31

Potential
It’s against my religious beliefs 9
Like to but haven’t got round to it 3

Potential
Like to but don’t know how to join 2
Other 11
Don’t know 12
0 5 10 15 20 25 30 35 40 45 50
21
Analysis continued to further investigate why some respondents would be unlikely to
sign the ODR. Those who said they did not want their organs donated (n=60) were
asked to rate the extent to which they agreed with eight potential reasons why
someone would not want their organs donated (Figure 6). The majority of these
respondents (84%) did not want their body experimented on. Approximately half
(51%) said they did not want to donate because they had no control over who would
receive their organs and 48% said they could not be sure that they would really be
dead when the decision for organ retrieval was made.
Figure 6: Reasons for not wanting to donate (prompted, n=60)
No control over who my organs would go to 51 30 20
Can't be sure I'll really be dead when the

48 33 20
decision is made to take my organs
Would be tempting fate 39 44 16
Don't want my body experimented on 84 13 3
Doctors wouldn't fight too hard to save me

28 56 16
if I'm a donor
I'm too old 23 67 10
Don't believe my organs are good enough 18 68 13
I'm too unwell 16 75 8
0 50 100
Agree Disagree Don't know
22
3.2 Knowledge of organ donation
Seven items included in the public attitudes survey were designed to assess
respondents’ knowledge about organ donation. Respondents were asked to indicate
whether they thought six knowledge items were true or false (Figure 7). The correct
response for item ‘It is possible to have an open coffin funeral service following organ
donation’ was ‘true’, and the correct responses for all other items were ‘false’.
Figure 7 shows that approximately half of respondents provided correct responses

for ‘It is possible for a brain dead person to recover from their injuries’ (55% false)
and ‘It is possible to have an open coffin funeral service following organ donation’
(54% true). Nearly three in five respondents (57%) correctly said the statement ‘Only
the organs of younger people are good for transplantation’ was false. Forty two per
cent of respondents correctly said that ‘Racial discrimination prevents minority
patients from receiving the transplant they need’ was false. However, responses to
questions that were more technically framed were more likely to be answered
incorrectly (‘The same doctors who look after you when you are seriously ill perform
transplants’ 36% false; ‘If you are on the organ donor register, you are kept alive until
your organs are removed’ 24% false).
Figure 7: Responses to six knowledge items (n=1,012)
21
It is possible for a brain dead person to
55
recover from their injuries 24
54
It is possible to have an open coffin funeral
20
service following organ donation 26
Racial discrimination prevents minority 28

patients from receiving the transplant they 42
need 30
22
The same doctors who look after you when
36
you are seriously ill perform transplants 42
44
If you are on the organ donor register, you
24
are kept alive until your organs are removed 32
20
Only the organs of younger people are good
57
for transplantation 23
0 10 20 30 40 50 60
Percentage of responses
True False Don't know
23
In addition to responding to these six statements, respondents were presented with a
list of organs/tissue and asked which of these they thought could be used for
transplantation purposes, with the correct response being ‘all of the above’. As can
be seen in Figure 8, approximately half of the sample (52%) said all the organs and
tissue presented could be donated. From the remaining 48% of respondents, the
most common answers were kidneys (66%), heart (32%), liver (32%), and lungs
(25%).
Figure 8: Respondents' views of organs/tissue that can be transplanted

(n=1,012)
All of the above 52

Kidneys 66
Heart 32
Liver 32
Lungs 25
Pancreas 11
Small bowel 8
Cornea 13
Skin 9
Bone 7
Tendons 4
Cartilage 2
Don't know 6
None of the above 1
0 10 20 30 40 50 60 70
Correct responses to the seven knowledge items were scored to give an overall
knowledge score ranging from 0–7, with higher scores indicating higher levels of
knowledge about organ donation. Average knowledge score was 3.2, with 57%
scoring 3 or less (Table 3).
Table 3: Number of correct knowledge items
Number of knowledge items

% n
answered correctly
0 6 61
1 12 124
2 18 181
3 21 213
4 20 207
5 12 119
6 6 60
7 5 47
Total 100 1012
24
Higher knowledge scores were associated with being aged between 30 and 64
years, being in socioeconomic groups ABC1, living in the Western and Southern
Health and Social Care Trust areas, living in rural areas, having no religious
affiliation, having no limiting long-term illness or disability, being in excellent/good
health, being on the ODR, and being exposed to organ donation (see Appendix B,
Table 7).
Knowledge about organ donation was significantly associated with the factors
underlying attitudes towards organ donation. High knowledge scores were
associated with low scores on spiritual (traditional) beliefs (p≤0.001), medical distrust
(p≤0.001) and the ‘ick’ factor (p≤0.001), and high scores on perceived benefits
(p≤0.001).
3.3 Attitudes towards organ donation

Attitudes towards organ donation in Northern Ireland were generally positive, with
84% of respondents agreeing with the statement ‘I support the general idea of organ
donation for transplantation purposes’. However, fewer respondents agreed with the
additional two statements in Figure 9, namely that ‘We should all register to be organ
donors’ and ‘It is unacceptable not to donate your organs’.
Figure 9: Attitudinal items indicating support for organ donation
84
I support the general idea of organ donation
9
for transplantation purposes
7
55
As organ donation saves lives, we should all
17
register to be organ donors
28
26
It is unacceptable not to donate your organs 42
32
0 10 20 30 40 50 60 70 80 90
Agree Neutral Disagree
When analysed by key demographic variables, support for organ donation was
consistently and significantly higher among those aged between 16–64 years, who
were in socioeconomic groups ABC1, who didn’t have a limiting long-term illness or
disability, who had a self-rating health status of excellent/good, who were on the
ODR, and who had been exposed to organ donation (Table 4). 15
Respondents were presented with 22 statements about organ donation and asked to
rate on a seven point scale (ranging from ‘strongly disagree’ to ‘strongly agree’) the
15
This refers to anyone who had a close family member/relation/friend who had been the
recipient of an organ, was on the waiting list, or had donated.
25
extent to which they agreed with each of the statements. The statements form a
scale of attitudes towards organ donation that have been validated elsewhere. 16,17,18
According to O’Carroll et al, the organ donation attitudes scale has five subscales,
which are labelled ‘perceived benefit’, ‘ick’, ‘jinx’, ‘bodily integrity’ and ‘medical
distrust’.13, 15 However, analysis for the Northern Ireland population indicated four
subscales, which are listed in order of importance and labelled ‘spiritual (traditional)
beliefs’, ‘medical distrust’, ‘the ‘ick’ factor’ and ‘perceived benefits'. While the original
scale was validated for use in the UK, the Northern Ireland culture is unique in
relation to death and funeral rituals, and this seems to be apparent in the current
analysis. This difference highlights that the donation attitudes scale is sensitive to
cultural variations.
Items in each of the subscales described above were summed to give an overall
score for each of the factors. The scores for each of the subscales were then used to
identify significant associations with key variables.
Table 4: Support for organ donation by key variables
Statement
I support the idea It is unacceptable As organ
of organ donation not to donate donation saves
Significant for your organs lives, we should
associations with transplantation all register as
key variables purposes organ donors
Gender NS NS NS
Socioeconomic
ABC1*** ABC1* ABC1**
group
Age <65*** <65** <65***
Religious affiliation None** None** NS
Southern
HSC Trust Belfast*** South Eastern***
South Eastern*
Urban/rural NS Urban** Urban**
Limiting long-term
None*** None* None***
illness or disability
Health status Excellent/good*** Excellent/good*** Excellent/good***
ODR registration On ODR*** On ODR*** On ODR***
Exposure to
Exposed* Exposed** Exposed**
donation
***p≤0.001; **p≤0.01; *p≤0.05; NS denotes not significant
16
O’Carroll, R.E., Foster, C., McGeechan, G., & Sandford, K. (2011). The “ick” factor,
anticipated regret, and willingness to become an organ donor. Health Psychology, 30(2), 236-
245.
17
Morgan, S.E., Stephenson, M.T., Harrison, T.R., Afifi, W.A., & Long, S.D. (2008). Fact
versus ‘feelings’: How rational is the decision to become an organ donor? Journal of Health
Psychology, 13(5), 644-658.
18
O’Carroll, R.E., Dryden, J., Hamilton-Barclay, T., & Ferguson, E. (2011). Anticipated regret
and organ donor registration – a pilot study. Health Psychology, 30(5), 661-664.
26
3.3.1 Spiritual (traditional) beliefs
‘Spiritual (traditional) beliefs’ explained the greatest variance in attitudes towards

organ donation, with higher scores on this subscale indicating higher levels of
‘spiritual (traditional) beliefs’. Figure 10 shows the frequency of responses to each
individual item on this subscale. As can be seen from Figure 10, the majority of
respondents disagreed with all of the statements. However, high scores on ‘spiritual
(traditional) beliefs’ represented more negative attitudes towards organ donation.
‘Spiritual (traditional) beliefs’ scores ranged from 6–42, with an average score (M) of
16.7. Analysis indicated that higher scores were associated with:
• being over 65 years of age – the mean score for the oldest age group was 18.6
compared with 16 for the other age groups (16–29 years, M=16.3; 30–44 years,
M=16.0; 45–64 years, M=16.5; 65+ years, M=18.6; p≤0.01);
• socioeconomic groups C2DE (M=17.7 v ABC1, M=15.5; p≤0.001);
• living in the Western Health and Social Care Trust area (Belfast, M=17.5;
Northern, M=16.8; South Eastern, M=15.4; Southern, M=15.8; Western, M=18.0;
p≤0.01);
• Catholics (Catholics, M=17.1; Protestants, M=16.7; no religious affiliation,
M=15.1; p≤0.01);
• nationalists (nationalists, M=18.0; unionists, M=16.0; other, M=14.9; refused to
answer, M=17.0; p≤0.001);
• having a limiting long-term illness or disability (M=18.6 v M=16.0; p≤0.001);
• a self-reported health status of poor (poor, M=19.8; fair, M=18.6; excellent/good,
M=15.7; p≤0.001);
• not being on the ODR (M=17.7 v M=14.0; p≤0.001).
Figure 10: Frequency of responses for each item on the ‘spiritual (traditional)
beliefs’ subscale (n=1,012)
17
Organ donation is against my religion 13
70
Organ donors may not be resurrected 19

16
because they don't have all their 'parts' 65
The idea of organ donation is somewhat 17

13
disgusting 70
People who donate their organs risk 12

13
displeasing God or nature 75
27
The body should be kept whole for burial 23
50
Removing organs from the body just isn't 15

16
right 69
0 10 20 30 40 50 60 70 80
27
3.3.2 Medical distrust
‘Medical distrust’ was the second most common consideration for attitudes towards
organ donation, with higher scores indicating higher levels of medical distrust. Figure
11 shows the frequency of responses to each individual item on this subscale. As
with ‘spiritual (traditional) beliefs’, the majority of respondents disagreed with each of
the statements, indicating that attitudes towards organ donation were generally
positive.
‘Medical distrust’ scores ranged from 6–42, with an average score (M) of 20.7.
Analysis indicated that higher scores were associated with:
• being over 65 years of age (16–29 years, M=20.5; 30–44 years, M=20.3; 45–64
years, M=20.0; 65+ years, M=22.5; p≤0.01);
• living in the Belfast and South Eastern Health and Social Care Trust areas
(Belfast, M=23.1; Northern, M=19.3; South Eastern, M=22.5; Southern, M=19.7;
Western, M=20.7; p≤0.001);
• Catholics and Protestants (Catholics, M=20.9; Protestants, M=20.9; no religious
affiliation, M=19.5; p≤0.05);
• nationalists (nationalists, M=22.1; unionists, M=21.0; other, M=19.0; refused to
answer, M=19.8; p≤0.001);
• a self-reported health status of poor or fair (poor, M=23.6; fair, M=23.0;
excellent/good, M=19.6; p≤0.001);
• not being on the ODR (M=21.8 v M=17.4; p≤0.001);
• not being exposed to organ donation (M=7.7 v M=6.8; p≤0.01).
Figure 11:Frequency of responses for each item on the 'medical distrust'

subscale (n=1,012)
The surest way to bring about my death is to 36

make plans for it like signing an organ donor 18
61
card
Doctors will withdraw treatment earlier if you 21
are a potential donor than if you were not a 18
61
donor
If I sign an organ donor card, doctors might 29
14
not try so hard to save my life 58
Sometimes medical procedures are done on 32

21
people without their consent 47
If I sign the organ donor card, doctors might 30

17
take away my organs before I'm actually dead 53
Hospitals sometimes prescribe medication as 32
a way of experimenting on people without 23
45
their knowledge or consent
0 20 40 60 80
28
3.3.3 The ick factor
Figure 12 shows the frequency of responses to each individual item on the ick factor
subscale. Higher scores indicate higher levels of disgust towards organ donation.
‘Ick’ factor scores ranged from 3–12, with an average score (M) of 10.9. Analysis
indicated that higher scores were associated with:
• being over 65 years of age (16–29 years, M=10.8; 30–44 years, M=10.2; 45–64
years, M=10.8; 65+ years, M=12.4; p≤0.001);
• living in the Northern and Western Health and Social Care Trust areas (Belfast,
M=10.9; Northern, M=11.6; South Eastern, M=10.4; Southern, M=10.2; Western,
M=11.2; p≤0.01);
• living in rural areas (M=11.4 v urban, M=10.7; p≤0.05);
• Catholics and Protestants (Catholics, M=11.2; Protestants, M=10.9; no religious
affiliation, M=10.1; p≤0.05);
• a self-reported health status of poor (poor, M=13.1; fair, M=12.3; excellent/good,
M=10.2; p≤0.001);
• not being on the ODR (M=11.7 v M=8.6; p≤0.001).
Figure 12: Frequency of responses for each item on ‘the ick factor' subscale
(n=1,012)
43
I don't like the idea of my body being cut
15
into when I've died
42
35
The thought of organ donation makes me
12
uncomfortable
53
I wouldn't like the idea of another person's 34

organs inside me even if I needed an 15
organ transplant 51
0 10 20 30 40 50 60
29
3.3.4 Perceived benefits
Figure 13 shows the frequency of responses to each individual item on the ‘perceived
benefits’ subscale. This subscale indicates positive attitudes towards organ donation
and higher scores indicate respondents perceiving more benefits to organ donation.
‘Perceived benefits’ scores ranged from 5–35, with an average score (M) of 27.1.
Analysis indicated that higher scores were associated with:
• females (M=27.5 v M=26.8; p≤0.05);

• being aged 16–64 years (16–29 years, M=27.6; 30–44 years, M=27.6; 45–64
years, M=27.1; 65+ years, M=25.8; p≤0.01);
• socioeconomic groups ABC1 (M=27.9 v C2DE, M=26.5, p≤0.001);
• living in the Southern and South Eastern Health and Social Care Trust areas
(Belfast, M=26.1; Northern, M=27.1; South Eastern, M=27.8; Southern, M=28.6;
Western, M=26.0; p≤0.001);
• having no religious affiliation (Catholics, M=26.7; Protestants, M=27.4; no
religious affiliation, M=27.8; p≤0.05);
• having some ‘other’ political affiliation (nationalists, M=26.2; unionists, M=27.8;
other, M=28.1; refused to answer, M=26.9; p≤0.01);
• not having a limiting long-term illness or disability (M=27.4 v M=26.3; p≤0.01);
• a self-reported health status of excellent/good (poor, M=26.3; fair, M=25.5;
excellent/good, M=27.8; p≤0.001);
• being on the ODR (M=28.8 v M=26.5; p≤0.001).
Figure 13: Frequency of responses for each item on 'perceived benefits'

subscale (n=1,012)
Organ donors are heroic because they 80

10
save lives 10
Donating organs would allow part of me to 59

20
live after I die 21
Organ donation helps me to bring 71

19
meaning to the death of a loved one 10
Organ donation allows something positive 81

12
to come out of a person's death 7
Organ donation is a gift of life for whoever 84

10
receives it 6
0 10 20 30 40 50 60 70 80 90
30
3.3.5 What drives people’s attitudes towards organ donation?
Figure 14 provides some context to the factors underlying attitudes towards organ
donation. The most powerful single driver behind attitudes towards organ donation in
the Northern Ireland population is ‘spiritual (traditional) beliefs’, which accounts for
40% of the variance. It is important to note that this factor may not relate to the
perception that organ donation is against people’s religion per se. This factor may
also include people’s attitudes towards burial and funeral rituals that once had
religious significance but have now become ingrained in Northern Ireland culture and
traditions.
The driver behind a further 38% of the variance is currently unknown but may include
factors such as anxiety, fear of death etc, which were not measured in the current
survey. ‘Medical distrust’ accounted for 10% of the variance, the ‘ick’ factor
accounted for 7% and ‘perceived benefits’ accounted for 5%.
Figure 14: What drives attitudes about organ donation? (n=1,012)
The ick Perceived

factor benefits
7% 5%
Medical distrust
10% Spiritual
(traditional)
beliefs
40%
Unknown
38%
31
3.3.6 Summary of factors underlying attitudes towards organ donation
Table 5 offers a summary of the associations between key variables and the factors
underlying attitudes towards organ donation. Although there was some variation in
significant relationships between some variables (such as Health and Social Care
Trust area, political affiliation and gender), a consistent pattern emerged. Positive
attitudes towards organ donation (ie scoring high on ‘perceived benefits’ and scoring
low on ‘spiritual (traditional) beliefs’, ‘medical distrust’ and the ‘ick’ factor) were
consistently associated with:
• being aged 16–64 years;

• belonging to socioeconomic groups ABC1;
• having no religious affiliation;
• being in excellent/good health;
• having no limiting long-term illness or disability;
• being registered on the ODR.
Table 5: Summary of associations between attitudes towards organ donation

and key variables
Key variable Factors underlying attitudes towards organ donation
Spiritual Medical The ick factor Perceived

(traditional) distrust benefits
beliefs
Gender NS NS NS Females*
Age >65** >65** >65*** 16-64**
Socioeconomic C2DE*** C2DE*** C2DE*** ABC1***
group
HSC Trust Western** Belfast*** Northern** Southern***
South Eastern Western South Eastern
Urban/rural NS NS Rural* NS
Religious affiliation Catholic NS Catholic* None*
Protestant
Political affiliation Nationalist*** Nationalist*** NS Other**
Limiting long-term Disabled*** Disabled*** Disabled*** None**
illness or disability
Health status Poor*** Fair*** Poor*** Excellent/good***
Poor
ODR status Not Not Not Registered***
registered*** registered*** registered***
Exposure NS None** NS NS
32
3.4 Discussing donation wishes
The majority of respondents (78%) agreed that discussing your donation wishes with
your family and/or friends is important (Figure 15). Agreeing with the statement ‘I
believe we should discuss our wishes about organ donation with our family and
friends so that they know to respect our wishes if anything happens to us’ was
significantly associated with being aged 16–64 years, belonging to socioeconomic
groups ABC1, living in rural areas, being in excellent/good health, being on the ODR,
and being exposed to organ donation.
Two thirds of respondents (64%) agreed that ‘it is not acceptable for your family/close
friend to overturn your wishes to become an organ donor in the event of anything
happening to you’. Those more likely to agree with this statement were in good
health and registered on the ODR.
Figure 15: Attitudes towards discussing organ donation wishes with

family/close friends (n=1,012)
I believe we should discuss our wishes about 78

organ donation with our family and friends so
18
that they know to respect our wishes if
anything happens to us 5
It is not acceptable for your family/close 64

friend to overturn your wishes to become an
23
organ donor in the event of anything
happening to you 14
0 10 20 30 40 50 60 70 80 90
Despite the majority of respondents being supportive of having a discussion with your
family/close friends about your donation wishes, only 38% of the full sample had
discussed their donation wishes with their family (Figure 16). Having discussed
donation wishes with your family/friends was associated with females, being aged
16–64 years, belonging to socioeconomic groups ABC1, not having a limiting long-
term illness or disability, being in excellent/good health, being on the ODR, and being
exposed to organ donation.
33
Having discussed donation wishes with your family/close friends was also associated
with:
• low ‘spiritual (traditional) beliefs’ (M=14.9; not having discussed, M=17.4; didn’t
know, M=20.6; p≤0.001);
• low ‘medical distrust’ (M=18.6; not having discussed, M=21.8; didn’t know,
M=23.0; p≤0.001);
• low scores on ‘the ick factor’ (M=9.3; not having discussed, M=11.8; didn’t know,
M=12.4; p≤0.001);
• high scores on ‘perceived benefits’ (M=28.1; not having discussed, M=27.0; didn’t
know, M=22.9; p≤0.001).
Figure 16: Percentage of respondents who had talked to their family/close

friends about donation wishes (n=1,012)
Yes 38
No 55
Don't know 7
0 10 20 30 40 50 60
Another indication of discussing organ donation wishes within families was assessed
by asking respondents whether they thought their family would know their wishes
about organ donation. Approximately two out of five respondents (43%) believed their
family/close friends would know their donation wishes (Figure 17) and just over half
(55%) said they thought their family/close friend would agree with their donation
wishes.
Agreeing that a family member/close friend would know your donation wishes was
significantly associated with:

• reporting excellent/good health;
• being on the ODR;
• having been exposed to organ donation;
• living in rural areas.
34
Figure 17: Family’s/close friends’ knowledge of, and agreement with, donation
wishes (n=1,012)
43
In the event of your death, do you think your
family/close friend would know your wishes 38
regarding organ donation?
18
55
Do you think your family/close friend would
agree with your decision about organ 17
donation?
28
0 10 20 30 40 50 60
Yes No Don't know
Eighty eight per cent of respondents who said they thought their family/close friend
would know their donation wishes said they thought their family/close friend would
agree with their decision (Figure 18). However, the proportion of respondents who
said they thought their family/close friend would agree with their decision decreased
to 29% in instances where they did not think their family/close friend knew their
decision.
Whether respondents thought their family/close friend would know their wishes was
significantly associated with:
• low ‘spiritual (traditional) beliefs’ (M=15.0, wouldn’t know, M=17.8; don’t know,
M=18.3; p≤0.001);
• low ‘medical distrust’ (M=18.6; wouldn’t know, M=22.7; don’t know, M=21.4;
p≤0.001);
• low scores on ‘the ick factor’ (M=9.6; wouldn’t know, M=11.7; don’t know,
M=12.4; p≤0.001);
• high scores on ‘perceived benefits’ (M=28.2; wouldn’t know, M=26.6; don’t know,
M=26.0; p≤0.001).
35
Figure 18: Family’s/close friends’ awareness of, and agreement with, donation
wishes (n=1,012)
In the event of your death, do you think a

family member/close friend would know your
wishes regarding organ donation?
Yes No
88% family would agree 29% family would agree

6% would not agree with 34% would not agree with
wishes wishes
6% don't know 37% don't know
Another measure used to provide some indication about whether family members
discuss organ donation was to ask respondents whether they knew the donation
wishes of their family/close friend. Figure 19 shows that just over half of respondents
(52%) were aware of their wife/husband/partner’s donation wishes, and a quarter
(26%) were aware of their close friend’s donation wishes.
Figure 19: Awareness of donation wishes of family/close friends
Wife/husband/partner (n=679) 52 48
Mother/father (n=750) 32 68
Your brother/sister (n=903) 27 73

Yes
No
Your children (n=685) 29 68
A close friend (n=955) 26 74
0% 20% 40% 60% 80% 100%

36
3.5 Willingness to accept organs
More than three quarters of respondents (78%) said they would be willing to accept
an organ if they needed one (Figure 20). Willingness to accept an organ was
associated with:

• living in rural areas;
• living in all Health and Social Care Trust areas except Belfast;
• being on the ODR.
Willingness to accept an organ was also associated with the following attitudes
towards organ donation:
• low ‘spiritual (traditional) beliefs’ (M=14.8; would not, M=26.9; don’t know,
M=20.9; p≤0.001);
• low ‘medical distrust’ (M=19.0; would not, M=27.9; don’t know, M=25.4; p≤0.001);
• low scores on ‘the ick factor’ (M=9.9; would not, M=15.2; don’t know, M=13.7;
p≤0.001);
• high scores on ‘perceived benefits’ (M=28.4; would not, M=21.0; don’t know,
M=23.9; p≤0.001).
Figure 20: Willingness to accept an organ
Yes 78
No 10
Don't know 12
0 10 20 30 40 50 60 70 80 90
37
3.6 Summary: Behaviours/attitudes and key variables
Table 6 summarises significant associations between key variables and
behaviours/attitudes towards organ donation. Positive behaviours (including
awareness of the ODR, being registered on the ODR, discussion of wishes,
willingness to accept an organ) were consistently associated with younger ages
(ranging from 30 to 64 years), socioeconomic groups ABC1, having no limiting long-
term illness or disability, reporting excellent/good health, and being exposed to organ
donation.
Table 6: Summary of behaviours/attitudes towards organ donation and key

variables
Relationships between behaviours/attitudes and key variables
Family
Having Willingness
Key variable Unlikely to would
Awareness Registered discussed to accept
sign know
wishes an organ
wishes
n=1012 n=1012 n=174 n=1012 n=1012 n=1012
Gender NS NS NS NS NS NS
Age 30–44** 30–44*** 65+*** 30–64*** 30–64** 16–64***
Socioeconomic ABC1*** ABC1*** C2DE*** ABC1*** ABC1*** ABC1***

group
HSC Trust Southern** Belfast** Western** NS South*** Southern***

South Northern Eastern
Eastern Southern
Western Northern
Southern Western
Urban/rural NS NS NS NS Rural*** Rural**
Religious Protestant** NS Catholic* NS NS NS
affiliation
Political Unionist*** NS NS NS Unionist* NS
affiliation
Limiting long- NS None*** Disabled*** None** None* None***
term illness or
disability
Health status NS Excellent/ Poor/ Excellent/ Excellent/ Excellent/
good* Fair*** good*** good** good***
ODR status N/A N/A N/A Registered Registered Registered
*** *** ***
Exposure Exposed*** Exposed*** NS Exposed Exposed Exposed**
*** ***
38
4 Public attitudes survey: registration systems
There are four different registration systems for organ donation that may be
implemented. Each system is briefly described as follows:
Opt-in (informed Individuals actively put their name on a donation system to

consent): explicitly provide consent (or opt-in) that they are willing for
their organs to be used after their death.
Soft opt-out Individuals are presumed to have consented to organ

(presumed donation after their death unless they have actively
consent): registered their objections by opting out of the system.
However, the family of the potential donor will be consulted to
obtain final consent before organ retrieval.
Hard opt-out Individuals are presumed to have consented to organ

(mandated donation after their death unless they have actively
consent): registered their objections by opting out of the system. In this
case, family members are NOT consulted before organ
retrieval.
Mandated choice: Individuals are required by law to register their wishes or

objections to organ donation (similar to completing the
Census).
In conjunction with understanding respondents’ attitudes and behaviours towards

organ donation, the public attitudes survey also focused on gaining insight on
respondents’ understanding about registration systems. This included awareness of,
and thoughts about, the current debate on the possibility of introducing a system of
presumed consent (soft opt-out) as well as the current opt-in system.
Figure 21 shows the variety of responses that respondents gave when asked,
unprompted, about their understanding of the current registration system. The
majority of respondents (55%) said you carry a donor card and 16% said you opt-in
or register. Notably, 22% said they did not know and 1% thought the current system
was opt-out. The variety of responses highlight that the public do not fully understand
the current system for organ donation in Northern Ireland.
39
Figure 21: Understanding of the current registration system used in Northern
Ireland (n=1,012)
Carry a donor card 55
Opt in/register 16
Use organs from those who have died 12
Permission from the family decide 9
Opt out 1
Don't know 22
0 10 20 30 40 50 60
Fewer than a third of respondents (29%) were aware of a current debate on the
system of organ donation in Northern Ireland. Among those respondents who were
aware of a current debate, 39% thought the system would change to an opt-out
system and a further 26% thought presumed consent would be introduced
(unprompted). Figure 22 shows other unprompted responses.
Figure 22: Ways in which respondents think the registration system in

Northern Ireland will change (n=290)
Opt out 39
Presumed consent 26
Mandatory/compulsory 10
Family or close friend will decide 6
Need to carry an opt out card 6
Opt in 3
Don't know 10
0 5 10 15 20 25 30 35 40 45
40
4.1 Support for soft opt-out
All respondents were presented with a statement describing the soft opt-out
(presumed consent) system and asked to indicate whether they would support this
type of system being introduced in Northern Ireland. Fifty six per cent of respondents
said they were in favour of changing to a soft opt-out system, 18% said they were
against, 8% said they needed more information to decide, and 18% said they did not
know.
Being in favour of changing to a soft opt-out system was associated with:

• being unionist;
• living in the South Eastern Health and Social Care Trust area (with Belfast being
most opposed);
• being on the ODR;
• having been exposed to organ donation;
• scoring low on ‘spiritual (traditional) beliefs’, ‘medical distrust’ and ‘the ick factor’,
and scoring high on ‘perceived benefits’.
Figure 23 shows that the most common reason why 59% of respondents were in
favour of changing to the soft opt-out system was because they thought it would save
lives.
Figure 23: Reasons for being in favour of the introduction of a soft opt-out
system (unprompted, n=570)
It will save lives 59
It will increase donors/organs available 25
There is a need for more organs 19
People don't get around to making a decision 17
It will benefit others/help people 16
It is easier 15
It is the right thing to do 14
You still have the choice to opt-out 5
You don't need organs when you're dead 5
0 10 20 30 40 50 60 70
41
Of those who were against the introduction of a soft opt-out system, 51% felt it would
remove choice/take away control from the individual (Figure 24).
Figure 24: Reasons for being against a soft opt-out system (unprompted,
n=178)
It removes choice/takes control away from

51
the individual
People might not be aware of the system
16
(and therefore no choice is made)
Personal belief/don't agree with it 16
People might not get around to doing it/too

12
busy or forget to do it
Prefer the current system 10
Don't agree with organ donation 8
Don't know 2
Other 1
0 10 20 30 40 50 60
However, the proportion of respondents who were supportive of changing to a soft

opt-out system differed depending on how they were asked (Figures 25 and 26). Two
questions in the public attitudes survey indicated support for changing to a soft opt-
out system. Fifty six per cent of respondents said they ‘would be in favour of
changing to a system where it is presumed that I have consented to donation’.
However, this decreased to 49% when respondents were asked to rate the extent to
which they agreed with the statement ‘everyone should be presumed to be an organ
donor unless they register a wish otherwise’.
42
Figure 25: Proportion of respondents who were supportive of changing to a
soft opt-out system (n=1,012)
I would be in favour of changing to a system

where it is presumed that I have consented
56
to donation unless I have registered my
objection or my family/close friend says no
I would be against changing to a system

where it is presumed that I have consented
18
to donation unless I have registered my
objection or my family/close friend says no
I would need more information to decide 8
Don't know 18
0 10 20 30 40 50 60
Figure 26: Proportion of respondents who agreed that 'everyone should be

presumed to be an organ donor unless they register a wish otherwise'
(n=1,012)
Agree 49
Neutral 26
Disagree 26
0 10 20 30 40 50 60
43
As well as being asked about support for changing to a soft opt-out system,
respondents were asked whether they agreed with attitudinal statements relating to
registration systems. The statements relating specifically to the introduction of a soft
opt-out system are presented in Figure 27 (significant associations with key
demographic variables are included in the SMR report).
Figure 27: Attitudinal statements relating to the introduction of a soft opt-out

system
The soft opt-out system will result in more 74

23
lives being saved
3
26
Organ donation is a gift which the soft opt- 28
out system will take away 46
The soft opt-out system maintains freedom of 62

choice - anyone can opt out if they want to 23
15
28
The soft opt-out system will give the
35
government too much control 37
37
Vulnerable adults are protected in the soft
44
opt-out system 19
0 10 20 30 40 50 60 70 80
Agree Neither Disagree
Figure 28 compares those who said they were in favour, or against, or needed more
information/did not know about changing to a soft opt-out system, and those who
agreed with an attitudinal statement that ‘everyone should be presumed to be an
organ donor unless they register a wish otherwise’. As can be seen below, 11% of
those who said they were in favour of changing to a soft opt-out system disagreed
with the statement, and a further 16% neither agreed nor disagreed. Conversely,
10% of those who said they were against changing to a soft opt-out system agreed
with the statement, and a further 22% neither agreed nor disagreed. Similar patterns
were also found among those who said they needed more information or did not
know about changing to a soft opt-out system.
44
Figure 28: Agreement with 'Everyone should be presumed to be an organ
donor unless they register a wish otherwise’ (n=1,012)
Support for soft opt-out
In favour of 73
16
soft opt-out 11
Against 10
22
soft opt-out 68
Need more information 24

50
to decide/ don't know 26
0 10 20 30 40 50 60 70 80
Agree Neither Disagree
Of the full sample, 43% agreed with the statement ‘more should be done with the
current opt-in system before the government should change to an opt-out system
(38% neutral and 19% disagreed). Of note, 35% of those who said they were in
favour of changing to a soft opt-out system also agreed with this statement.
4.2 Anticipated response if soft opt-out is introduced

In total, approximately 62% of the full sample said they would not register an
objection if the soft opt-out system was introduced (Figure 29). Approximately 22%
did not know what they would do and 16% indicated they would register an objection
to donation if the soft opt-out system was introduced. This latter group included 2%
who said they were currently on the ODR but would not provide consent if the
legislation was introduced.
Figure 29: Respondents' anticipated reaction if the soft opt-out system is

introduced (n=1,012)
I am not currently on the register but don't

37
think I'd opt out
I am currently on the register and would
25
remain on it (i.e., do nothing)
I am not currently on the register but would
14
opt out
I am currently on the register but if the
2
system changed to an opt-out system, I…
Don't know 22
0 5 10 15 20 25 30 35 40
45
4.3 Support for a mandatory system
The majority of respondents (54%) said they would be in favour of a mandatory
system of registration being introduced in Northern Ireland and 59% thought GPs
should collect this information when new patients register with them (Figures 30 and
31).
Figure 30: Support for mandatory registration system (n=1,012)
I would be in favour of a system where people

are required by law to make a decision about
54
organ donation when applying for a driver's
licence
I would be against a system where people are

required by law to make a decision about
25
organ donation when applying for a driver's
licence
I would need more information to decide 20
0 10 20 30 40 50 60
Figure 31: Respondents’ preferred way to register their donation wishes if a

mandatory system was to be introduced in Northern Ireland (n=1,012)
Registering with a GP 59
Driving licence application 23
When applying for a passport 11
When applying for state benefits 7
0 10 20 30 40 50 60 70
46
5 Willingness in GP practices to become more involved in
promoting organ donation
In a recent PHA commissioned survey (unpublished), GPs, practice managers and
practice nurses provided some indication of what they would be willing to do in their
practice to help increase donation rates in Northern Ireland. Figure 32 shows the
proportion of GPs, practice managers and practice nurses who responded positively
to each of the options mentioned. Of note, they were willing to record wishes on
patients’ records and particularly willing to display promotional materials.
Figure 32: Willingness in GP surgeries for staff to become more involved in

organ donation
100
91 91
90 86
80
% of respondents
70
61
57 58
60
50 43
40 33 34 33
30
20 17
11
10
0
Display promotional Encourage staff to Speak with patients Record wishes on
materials in patient raise awareness to encourage patient record
areas registration
GPs (n=358) Practice Managers (n=174) Practice Nurses (n=103)
47
6 Stakeholder engagement findings
This section presents key findings from discussion groups with stakeholders that
sought their views and ideas about how organ donation can be improved in Northern
Ireland. These groups were:
• charities, transplant recipients and those on the waiting lists;

• donor families;
• Health and Social Care (HSC) staff and the BMA.
Discussions included views on support for a public information campaign and also
asked for views on legislation and presumed consent (see Appendix A).
6.1 Improving organ donation

Discussion groups initially considered how organ donation can be improved in
Northern Ireland. There was consensus across all groups that organ donation needs
to be normalised in Northern Ireland, and that it is important to provide the public with
correct information, educating the general population about donation and dispelling
myths.
6.1.1 Normalising organ donation
There was consensus that the key to improving organ donation is to break the taboo
surrounding the topic of death and organ donation. This could be achieved by using
sustained public information campaigns to educate the public, with particular focus
on educating the younger generation. There was an expectation that normalising
organ donation will result in greater discussion within families about donation and
individuals’ wishes as a result of reduced disgust or fear about the donation process.
During discussions, participants provided the examples of Canada and Spain where
organ donation is a cultural norm and noted that donation is higher in both countries
than in Northern Ireland.
“It’s about changing the perception of organ donation, it is a taboo

subject so people do shy away from it and actually it is something
we should take pride in!”
Stakeholders felt it is important to educate the public, particularly the younger

generation, to ensure organ donation is a cultural norm in the future. Within groups,
individuals differed in how they felt the younger generation could be educated. Some
felt this should be included as a topic within the school curriculum. Others felt a range
of social media targeting the younger generation would be more appropriate. Some
felt organ donation should be discussed with secondary school aged children while
others felt primary school aged children could be approached. However, all agreed
the younger generation should be approached before they start applying for
provisional driving licences, as this is a method used to register on the ODR. Any
approach to children and/or young people should be handled sensitively and
carefully, allowing for questions to be openly discussed and answered. The
immediate outcomes of educating the younger generation would include: raising
awareness of the ODR, encouraging registrations, and stimulating discussion about
donation wishes within families.
48
Normalising organ donation within Northern Ireland was seen as an important step in
preparing potential donor families before they are in the situation where they are
being asked to provide consent to donation. There was recognition that making such
a decision when in crisis or when distressed about losing a loved one is harder to
deal with if the request for consent is unexpected.
There was consensus that normalising organ donation and breaking taboos
surrounding death will result in higher rates of consent to organ donation and more
lives being improved.
6.1.2 Provide correct information and dispel myths
There was a general feeling among stakeholders that knowledge about organ
donation among the general public is generally low and needs to be improved.
Stakeholders felt it is necessary to provide the public with accurate information to
correct misconceptions and dispel myths about organ donation. It was noted that if
organ donation is misunderstood, individuals cannot make informed decisions about
whether they would like to donate and this increases the likelihood of declining to
give consent to donation.
The following is information compiled from discussion groups that stakeholders felt it
was important for the public to know:
• organ donation is a modern miracle that saves the HSC money (in comparison to
treating those waiting for a transplant);
• the number of people waiting on a transplant;
• the number of lives that can be saved or improved from one person donating their
organs;
• children who require a transplant are likely to need more than one in their lifetime;
• the length of time people can wait for an organ – there is not an endless supply of
organs;
• you are more likely to need an organ than be a donor, and if you are willing to
accept an organ then you should sign the register;
• family consent is required after death before donation occurs;
• the length of time taken for donation to ensure expectations are managed before
potential donor families are in crisis;
• the treatment of the body after organ retrieval has taken place;
• the range of organs/tissue that can be used for transplantation and how different
organs are used, especially the cornea.
In conjunction with providing more information about donation, stakeholders

reiterated the importance of dispelling myths or addressing negative beliefs about
donation. Some of the myths or beliefs were also cited as reasons for potential donor
families to decline to give consent to donation. These include:
• signing the ODR means that you will be given poor quality treatment if you are
admitted to hospital;
• signing the ODR means that treatment could be withdrawn early;
• organ retrieval means the body will be butchered/mutilated;
• donation is just for the young (you can actually donate organs until you are 80
years old);
• donation is just for those who are healthy;
49
• people are still alive when the decision about donation is made in cases of
donation following brain death (donation is actually only considered when all
treatment options are exhausted and the person has died);
• the heart/eyes are part of the soul;
• transplants are just for adults (people forget children also may need organs);
• the person suffers further by donating;
• not everyone who needs an organ should get a transplant because they have
abused their bodies.
6.1.3 Other suggestions
In order to cope with the increase in transplant operations assumed to result from
improving organ donation, stakeholders commented that it is necessary to improve
infrastructure within Health and Social Care. This included making more resources
available to help cope with more retrievals. Such resources included:
• improving facilities in ICUs to ensure they are comfortable and provide potential
donor families with privacy;
• having more specialised staff to deal with donation;
• increasing capacity (theatres, ICU beds, staffing);
• quicker access to retrieval teams (via working with the Republic of Ireland) or
having retrieval teams based in Northern Ireland.
Many were keen that registering on the ODR should be made easier. Whilst there are
many ways to currently sign, there was some confusion about where and how to
sign. As a means of raising awareness, many felt the ODR should have more
identifiable branding or visibility (eg a badge or the donor card could be reintroduced
as this association is still prevalent). Some felt that it would be beneficial for GPs to
register patients’ wishes at routine appointments, registration with the practice, or
built into the Quality and Outcomes Framework. Other contact points with Health and
Social Care (such as emergency departments, inpatient/outpatient appointments,
etc.) were seen as further opportunities to ask people about donation. More shops
and high street stores could adopt the approach used by Boots by encouraging
people to register when obtaining loyalty cards and finally, making better use of
social media.
A high proportion of potential donor families who do not consent to donation do so

because they did not know their loved one’s wishes. Consequently, some felt the
ODR should request the signature/contact details of the next of kin who the person
signing has discussed their wishes with. The act of giving another person’s contact
information could act as a way for individuals to initiate the conversation about
donation.
In addition to making registration easier, some feel it should be easier to check the
details held with NHSBT as some people do not know if they are registered or not.
Members of HSC staff in particular felt that public support for organ donation from
key churches/religions would be useful in helping the public to understand the
religious position and dispel myths.
50
6.2 A public information campaign: support and key messages
There was unanimous support among stakeholders for a public information campaign
(PIC) to be conducted in Northern Ireland. However, all agreed that serious
commitment needs to be devoted to a PIC and it needs to be well funded and
sustained. The key aim of a PIC was perceived to be making organ donation a
cultural norm.
6.2.1 Key messages
The key message of a PIC was simply to:
Consider your donation wishes and then tell your family

The family discussion was regarded as the most important message for a PIC
because the family/close friend of all potential donors are currently asked to consent
to donation regardless of whether the potential donor is on the ODR. A common
reason for families of potential donors not consenting to donation in Northern Ireland
is because they did not know their loved one’s wishes. Having the family discussion
removes the decision-making burden from the family, which reduces the likelihood of further
distress if they are asked to consent to donation. It also ensures an individual’s
donation wishes are fulfilled. Finally, family discussion transcends registration
systems which reduces confusion should legislation be enacted in Northern Ireland to
introduce presumed consent.
While the family discussion was the preferred and key message, other suggestions
included:
• advising individuals on how and where to sign on the ODR;

• asking people to consider the possibility that they might need an organ;
• providing factual information about donation (eg the number of people waiting for
organs);
• messages to educate the public about the practical processes involved in
donation;
• messages to dispel the myths associated with donation.
6.2.2 The approach
There was consensus that a PIC must have a positive focus, with any facts and
figures being positively framed. For example, the number of lives that can be
improved from a single donor should be the focus, rather than the number of people
dying while waiting on a transplant.
Positive messaging should include the benefits to donor families in conjunction with
recipients. Telling the personal stories of recipients and donor families and focusing
on the benefits of donation was considered a worthwhile approach that would
resonate well with the public and be memorable.
The benefits to recipients are well known, with their health and quality of life
improving following a successful transplantation; but personal stories may add depth.
51
Benefits to the donor families were considered to be less well known among the
general public. All donor families talked about the immense sense of pride they feel
in knowing the positive impact their loved one had on the lives of so many others.
Several participants felt that the testimony of comfort and pride felt by grieving
families through their gift is a powerful tool. The public may also be more able to
identify with the donor family story as the public are not required to think about the
possibility of being sick and in need of a transplant.
Participants felt that the key to a testimonial approach was to use local people, some
of which could be high profile to ensure public engagement with the messages. As
the testimonial approach was considered memorable, it was envisaged that the PIC
should be like the Northern Ireland Road Safety advertisements: sustained and well
known.
6.3 Registration systems

All stakeholders emphasised that all registration systems aim to maximise the
number of organs available for transplantation purposes. Many felt that there have
been improvements in organ donation in Northern Ireland over recent years. This
was considered to result from the implementations of the Taskforce Report 2008, and
in particular the introduction of Clinical Leads in Organ Donation and Specialist
Nurses in Organ Donation (SNODs) into all ICUs in Northern Ireland. HSC staff
commented on how SNODs are invaluable in liaising with potential donor families
and working with them to maximise consent for donation. Furthermore, their
presence in ICUs serves as a constant reminder of organ donation for other staff
members. Donor families commented on how SNODs helped them to consider
donation with minimum distress when they were approached.
6.3.1 The proposal to introduce soft opt-out/presumed consent
Discussion about the proposal to introduce a soft opt-out/presumed consent

registration system in Northern Ireland was the only issue that resulted in differences
between, and within, groups. All agreed that the current debate about the presumed
consent system is successful in raising awareness about organ donation. However,
many were confused about how the change would be implemented and the impact it
would have.
Considering the differences that arose during discussions about the proposal to
change to a soft opt-out/presumed consent system, stakeholders could be divided
into the following groups (although some within group differences remained):
• charities, recipients and those on the waiting list;

• donor families;
• HSC staff;
• BMA.
Support for the proposed changes was highest among the BMA, charities, some
transplant recipients and those on the waiting list. However, with the exception of the
BMA, some individuals within discussion groups disagreed with the overall support
for the proposed changes.
52
Whilst there was some support for the proposed changes among HSC staff, the
majority were opposed to the introduction of a soft opt-out system in Northern
Ireland. Notably, the greatest hesitation appeared to be associated with those who
work closest to or directly with potential donors and their families. Some emphasised
that they were not strictly opposed to soft opt-out legislation but felt it was not the
right time.
6.3.2 Advantages of soft opt-out/presumed consent
Despite the concerns raised by stakeholders outlined above, some explained that
soft opt-out/presumed consent legislation marks a cultural change for Northern
Ireland that would encourage altruistic behaviour among the general population. For
these stakeholders, a legislative change could only result in an increase in potential
donors and therefore organs available for transplantation as it captures ambivalent
individuals who never get around to signing the ODR. For those who were less
certain about the increases in available organs but who fully supported soft opt-
out/presumed consent, the proposed changes are better than not doing anything to
raise the profile of organ donation.
Some stakeholders believed a change to soft opt-out/presumed consent will make it

easier for HSC staff to approach the potential donor family and removes the decision-
making burden from the family. Finally, it was noted by charities, recipients and those
on the waiting list that increases in organ availability would result in significant
economic savings for Health and Social Care.
6.3.3 Concerns about soft opt-out/presumed consent
All stakeholders whether or not they were supportive of soft opt-out/presumed

consent identified a number of risks they associated with the introduction of soft opt-
out/presumed consent system if it is not implemented carefully. If the risks are
realised, stakeholders expressed concern that the change in legislation could result
in a reduction in the number of donors and increase the risk of potential donor
families declining consent to donation.
The risks identified included:
• feeding into medical distrust;

• gaining family consent;
• creating public confusion;
• making organ donation a political football.
6.3.4 Medical distrust
‘Feeding into medical distrust’ was a theme identified in the stakeholder engagement
exercise that strongly echoed the findings from the public attitudes survey. It was
noted particularly by medical staff that individuals have become less trusting and
respectful towards members of the medical profession over recent years. As such,
the public are increasingly likely to question the judgement of medical staff. This has
been confounded by news reports of scandals about hospitals keeping tissue and
other body parts and other scandals relating to incompetency and/or negligence.
HSC staff in particular was concerned that the introduction of soft opt-out/presumed
53
consent could ultimately result in more conflict between medical staff and potential
donor families. They noted that they were dealing with families in a highly emotionally
charged situation and there can be complex family structures and within family
conflict. HSC staff were concerned about a public perception that the focus for
medical staff will be on ‘harvesting organs’ and the difficulty families have in
accepting brain death may exacerbate difficulties associated with accepting end of
life status and the withdrawal of therapy, which may, in turn, result in refusals.
Furthermore, HSC staff expressed ethical concerns about end of life care and a
perceived conflict of interest regarding patient care and death, particularly when
dealing with donation following cardiac death (DCD).
HSC staff commented that recent scandals (such as Mid Staffordshire hospital,
issues around the Liverpool Care Pathway) have focused on family dissatisfaction
and a feeling that people had not been appropriately consulted or included in
decisions made about their loved one’s care. Some commented that a move to soft
opt-out/presumed consent would result in further dissatisfaction and is a return to a
paternalistic approach that Health and Social Care has moved away from.
Some stakeholders (donor families and HSC staff) expressed concern about an
increase in litigation and particularly about the media publicity that could result from
the first complaint from a family that may have had the slightest perception that their
loved one wasn’t given the appropriate care. Ultimately, this could have long-lasting
devastating consequences for the credibility of organ donation.
6.3.5 Family consent
Family consent was perceived to be the most fundamental issue for increasing
donation rates in Northern Ireland regardless of the registration system used. In the
current opt-in system, the families of all potential donors are approached by HSC
staff to seek consent for donation when medically appropriate. In the event of a soft
opt-out/presumed consent system being introduced, it is unclear if this would still be
the case, but from their own perspective, some staff said they would feel reluctant to
approach a family where the loved one had opted out. Consequently, the pool of
potential donor families who are approached could reduce from 100%, as is currently
the case.
HSC staff (in particular) seemed to be of the view that the current ODR would not be
used by the public in the soft opt-out/presumed consent system. They were also of
the view that people who are ambivalent about organ donation would be unlikely to
actively seek out an ‘opt-out’ register. This gave them the perception that they would
not be able to provide families with any information about their loved one’s donation
wishes. They felt that this would increase the decision-making burden placed on
families, increase the likelihood of conflict within the family and with HSC staff, and
increase the numbers of families refusing to consent to donation. In contrast, other
stakeholders (BMA, charities recipients and those on the waiting list) felt that those
who do not want to donate would be highly motivated to register their objections to
donation in a soft opt-out/presumed consent system. Consequently, they felt that a
soft opt-out/presumed consent system would capture those who do not ‘get around’
to signing the ODR, which would decrease the burden on the family and make
consent easier.
Some stakeholders (particularly HSC staff, donor families and some recipients) felt
that a soft opt-out/presumed consent system reduces the likelihood that individuals
54
will discuss their donation wishes. Some feel that signing the ODR is a proactive
declaration of wishes which may stimulate conversation among families.
Stakeholders who directly work with potential donor families were concerned that soft
opt-out/presumed consent is a difficult concept to explain and understand. These
stakeholders felt that explaining presumed consent may cause complications and
increase tensions between family members and HSC staff at a time when emotions
are running high. Their concern was that a lack of understanding and/or confusion
about the consent system, confounded with grief, would increase the likelihood of
refusals to donate while contributing also to feelings of medical distrust.
Finally, HSC staff considered the ODR to be a positive aid to initiating a conversation
about donation with the potential donor family. They explained they could use the
ODR as a softer way of asking about donation wishes if the potential donor was
registered. These stakeholders felt that where wishes are clearly known through the
ODR, it reduces the decision making burden on the family and makes it more difficult
to go against their loved one’s wishes. However, with the legislation change the
family could potentially be approached by explaining that their loved one did not
actively make a decision not to donate. So, their views about organ donation may be
unknown, making the choice more difficult for the potential donor family.
“Approaching the [donor] family with the message that their loved one didn’t opt out is
useless … the response could be ‘they didn’t do lots of things doesn’t mean they
agree with it.”
“At the end of the day it’s not about [HSC staff], it’s about the donor family and opt-
out makes it more difficult for the family to come to a decision.”
6.3.6 Loss of the notion that donation is a gift
All stakeholders considered that the notion that donation is a gift holds strongly for
many, and is particularly important for both donor families and recipients. Donor
families associated their sense of pride with the idea of donation being a gift that their
loved one had given others. Recipients and those on the waiting list also spoke of the
importance of donation being a gift. Some explained that it is psychologically difficult
for some recipients to cope with the integration of someone else’s organ into their
bodies and this is confounded with the knowledge that someone had to die for their
life to be saved or improved. The knowledge that donation is a gift that someone
actively considered and decided to do helped them to cope with and accept the
donation. Many stakeholders felt that soft opt-out/presumed consent is passive and
may not require a donor to make a decision. They felt that a gift cannot be presumed
and raises questions about whether donation is a gift or a duty and that it ‘is hard to
celebrate not signing a form’.
6.3.7 Creating public confusion
There was concern that discussion about changing the registration system to soft
opt-out/presumed consent would cause confusion among the general public. Some
reflected on the confusion within the organ donation community and felt that if those
who are involved with organ donation are confused, then the general public must be
55
confused. In particular, stakeholders were concerned about the public understanding
of what the soft opt-out/presumed consent system is, how it will work, whether the
system has already changed, what will happen to organs, how to register objections,
and how conflicts between registration systems used in Northern Ireland and other
parts of the UK will be resolved. A major concern was that increases in public
confusion may undo the work that has been done over recent years to increase ODR
registration and donation rates and result in higher rates of refusals. Some felt that in
the time between the discussions about proposed changes and the implementation
of said changes (if the system is changed in the future) there may be reduced
numbers of people signing the ODR as some already think the changes have been
implemented.
6.3.8 Political football
The majority of stakeholders were concerned that the topic of organ donation and the
possibility of introducing soft opt-out/presumed consent legislation was becoming a
‘political football’. Introducing new legislation was perceived by some as a method by
which politicians were making it look like they were taking action and public point
scoring.
Some were concerned that introducing the legislation may invoke stubbornness
among some of the public who may have been previously ambivalent about donating.
Such individuals may react negatively to being told (rather than asked) to donate, this
may antagonise them and increase the likelihood of them registering their objections
to donate.
In addition to this, a small number raised the idea that some individuals may politicise
soft opt-out/presumed consent legislation. Some individuals may perceive soft opt-
out to mean that after death the body is ‘state owned’ but may not affiliate with the
United Kingdom. This complication was perceived to be unique to Northern Ireland.
6.3.9 Changing opinions
Some stakeholders spoke about their changing attitudes towards the proposed
legislative changes. Changes in attitudes were also noted to occur during the
discussion groups when some individuals within the groups spoke of their concerns
associated with the introduction of soft opt-out/presumed consent. Some explained
that they were initially in full support of the proposed changes but their attitudes
changed when they had further considered the implications and were more cautious
about soft opt-out/presumed consent. This shift in attitudes resulted from
consideration of issues around medical distrust and family consent, with many
concluding they needed further evidence of effectiveness before the changes should
be implemented in Northern Ireland. Some commented that soft opt-out/presumed
consent legislation will be introduced in Wales and that there should be a delay in the
system being changed in Northern Ireland to give time to assess its impact in Wales.
Some stakeholders were eager to find out more about how the soft opt-out/presumed
consent system had worked in other countries. Some reflected on the use of Spain
as an example of success for the soft opt-out/presumed consent system. However,
other stakeholders (especially HSC staff) cautioned that donation in Spain is higher
due to structural and cultural differences (a higher level of trust in the medical
profession, and organ donation is accepted as the cultural norm) and differences
between the health services (such as attitudes to ‘medical futility’, number of ICU
56
beds and different infrastructure). Such discussions led many to conclude that soft
opt-out/presumed consent legislation will not make any difference to organ donation
unless other changes are implemented.
6.3.10 Can more be done with the current system?
All stakeholders noted that a change in legislation would require awareness

campaigns and education to ensure the public is well informed about how and when
the change would be implemented, and how to register their objections if they wish to
do so. Some stakeholders suggested that the resources required to do this could be
directed to improving the current system. It was regarded that the latter option would
cost less as the cost of legislation change would be avoided.
57
7 Discussion
7.1 Gaining support for organ donation – high potential to

mobilise
Support for organ donation was high among the general population, with 84%
supporting the general idea of organ donation for transplantation purposes. However,
approximately one quarter of respondents reported having registered on the Organ
Donor Register (ODR) (24%). Therefore, it is important to maximise support for
donation by examining how to mobilise support into action.
One important finding from the public attitudes survey (PAS) is that one in three of
those surveyed were not aware of the ODR. There was a high proportion of people in
favour of organ donation who had either no awareness of the ODR or had not yet
registered. Theoretically, it should be possible to mobilise this group of people and
encourage them to register on the ODR. This means there is potential to encourage
the majority of the Northern Ireland population to register as only 16% said they were
not likely to sign the ODR. However, even within this latter group, there is potential to
mobilise them into action by addressing their concerns about donation.
Awareness of the ODR was poorest among the youngest and the oldest age groups
(ie 16–29 year olds and over 65 year olds). Analysis showed the youngest group
being strongly in favour of organ donation. Therefore, addressing the simple issue of
awareness of the ODR among young people may lead to quick gains in registration
and ensuing promotion of the issue between friends and family members.
Mobilising some groups may be a simple matter of correcting some misinformation.

For example, those who are over 65 years old, those who have a long-term
illness/disability, and those who rate their health as fair/poor are among those least
likely to have registered. This may be associated with the prevalence of myths
surrounding organ donation. Dispelling the idea that organs from older people or from
someone who has been sick or disabled are of no value may be encouragement
alone.
For others, deeper held attitudes (including spiritual [traditional] beliefs, medical
distrust, the ‘ick’ factor and perceived benefits) may shape their willingness to
donate. With the exception of perceived benefits, the factors identified in the PAS
reflected negative attitudes underlying the publics’ perceptions relating to organ
donation. The negative attitudes were strongly associated with those in the C2DE
socioeconomic groups, the over 65s, those with any kind of religious affiliation
(compared with no beliefs), and those with a disability or in poor health.
Factors underlying attitudes towards organ donation were also significantly

associated with knowledge about organ donation. High scores in knowledge were
associated with low scores on spiritual (traditional) beliefs, medical distrust, the ick
factor, and high scores on perceived benefits. Improving knowledge could help to
shift attitudes and have a positive impact on donation-related behaviours. For
example, increasing public knowledge about brain death or that doctors who deal
with donation are not the same doctors that look after you if you are ill, may help to
counter negative beliefs such as doctors ‘will withdraw treatment earlier if you are a
potential donor’ and reduce medical distrust that impacts on positive donation-related
behaviours.
58
Despite the fact that all major religions in the UK openly support organ donation and
transplantation, some of the Northern Ireland population believe that organ donation
is against their religion. Furthermore, some also believe that organ donation would
‘displease God’ and that the body needs to be ‘kept whole for resurrection’. In
discussions with HSC staff, potential donor families consider the state of the body
following retrieval, whether it is possible to have an open coffin wake, and also the
time it takes to get the body home, before providing consent to donation.
It is important to note that the spiritual (traditional) belief factor does not necessarily
reflect spiritual beliefs per se. The majority responded that organ donation was not
against their religious beliefs, yet this factor yielded the greatest explanatory power in
relation to organ donation. This may reflect spiritual beliefs and traditions around
burial rituals that have become ingrained in the Northern Ireland culture, as was
highlighted during discussions with stakeholders.
Participants reflected that making organ donation a cultural norm in Northern Ireland
would take time, especially considering cultural norms and spiritual (traditional)
beliefs relating to death and burial rituals. Some spiritual (traditional) beliefs are
unique to Northern Ireland making it difficult to compare Northern Ireland with other
parts of the UK. Specifically, it was noted that burials are expected to take place
within two/three days, with deviations from this being seen as unusual. Many felt that
support from churches in Northern Ireland would be useful in helping individuals to
understand the religious position regarding organ donation and in dispelling myths
relating to the soul and burial. However, such beliefs were regarded as being deeply
ingrained in our culture, meaning that making organ donation a cultural norm will
require consistent and sustained effort.
The PAS suggests the need for public information and discussions with stakeholders
highlighted unanimous support for a public information campaign which must be
sustained and carry positive messaging. It is clear from PAS findings that there are
different messages for different sections of the public. However many felt that the key
message to get across to the public, aside from correcting misinformation and
addressing attitude, is not just about the ODR but about discussion. Letting each
other know our wishes, particularly among family members, is felt to be the key to
gaining consent to donate, no matter what legislation is in place.
7.2 Opt-in or soft opt-out/presumed consent system

While there was unanimous agreement between various stakeholder groups on the
need to improve organ donation in Northern Ireland and the need for a sustained
public information campaign and education, views diverged on the issue of legislation
and the proposal of a soft-opt out/presumed consent for Northern Ireland.
The majority of charity representatives were in support for a change to soft opt-
out/presumed consent, feeling that it would signal a cultural change to the general
public on the issue of organ donation. However, HSC staff in the Intensive Care Unit
(ICU) setting and closest to the donor family scenario were least supportive of a
change to soft opt-out/presumed consent, at the current time. There is a general
feeling that presumed consent legislation will not change their current practice,
however there are fears that a change to presumed consent will make approaching
the family more difficult, it could risk trust with health care staff, lose organ donation
credibility and risk gains that have been made in organ donation over the last five
years.
59
The issue of medical distrust was a significant issue for HSC staff in the ICU setting,
these include ethical concerns or concerns about a conflict of interest regarding end
of life care, the perception that the public may have that the medical focus will be on
harvesting organs and the perception that the public have much less respect for the
health service and medical staff. This corresponds with findings from the PAS with
regard to medical distrust and as such is something that needs careful consideration.
The issue of approaching the potential donor family is also important. HSC staff
explained that currently families get asked about organ donation (where medically
appropriate) if their loved one is on the ODR or not. This seems to be something not
understood by other stakeholders or perhaps the general public. When this was
explained to some stakeholders they wondered why there would be a need for
change if this indeed is currently the case.
It seemed to be presumed by stakeholders that people would no longer feel the need
to sign the ODR and there was some debate whether people would be more or less
likely to sign an opt-out register. Those HSC staff members who feel that people
would be less likely to sign an opt-out register feel that families are left with no record
of wishes at all –making the burden of family decision making more difficult.
The idea of organ donation being a ‘gift’ was extremely important to some recipients,
to some HSC staff, and particularly to the donor families. For some, the idea of a ‘gift’
is taken away with presumed consent.
Findings from the PAS and stakeholder engagement suggest that there is difficulty in
understanding the concept of ‘soft opt-out/presumed consent’ and there are issues
regarding the language used to explain legislation. A deeper consideration of
presumed consent changed some people’s views in both the PAS and in some
stakeholder discussion.
Support for organ donation is high among the general population, but the level of
agreement declines with statements that suggest obligation, for example we ‘should’
all register or it’s ‘unacceptable’ not to donate. This suggests that a substantial
proportion of the general public, while supportive of organ donation, may be in favour
of donation being a personal choice. While 56% were in favour of a system in which
‘it is presumed that I have consented to donation unless I have registered my
objection or my family or close friend says no’, fewer (49%) agreed with the
statement ‘everyone should be presumed to be an organ donor unless they register a
wish otherwise’, with some who agreed with the former statement then disagreeing
with the latter statement.
This apparent contradiction may be explained by the wording in the first statement
that shows family agreement is needed (soft opt-out). However, it is the family
consent aspect that health care stakeholders particularly those in ICU (ie closest to
the donation scenario) are concerned with if people no longer register their wishes.
In addition some stakeholders (particularly HSC staff, donor families and some
recipients) felt that a soft opt-out/presumed consent system reduces the likelihood
that individuals will discuss their donation wishes. Again, this might only be the case
if use of the ODR also falls off. Findings from the PAS show that those who have
signed the ODR are most likely to know and accept their family member’s wishes,
suggesting that proactive signing of the ODR does encourage some family
discussion.
60
Those who did not support soft opt-out/presumed consent were not necessarily of the
opinion that it would not increase donation, but were concerned that the Northern
Ireland public are not yet ready for it. There is a risk with soft opt-out/presumed
consent that those who are currently ambivalent (haven't given it much
thought/maybes) could take an oppositional stance, leading to a potential reduction in
the availability of organs for donation.
In the PAS, 43% of respondents felt more could be done with the current system
before there is need for change. Stakeholders were also of this opinion and felt that
much would still need to be done to encourage organ donation with legislation
change.
7.3 Implications for public information campaign
A well-resourced and sustained public information campaign was highly supported

and welcomed by all of the key stakeholders. The public attitudes survey also
indicated several objectives for a campaign that would ultimately increase donation in
Northern Ireland. These include:
• increase awareness and knowledge of organ donation;

• increase awareness of the ODR;
• mobilise people who are currently ambivalent about donation;
• encourage people to discuss their donation wishes with their family/friends.
Both the public attitudes survey and the stakeholder engagement process highlight
that a key focus of a campaign should be to encourage the public to discuss their
donation wishes with their family/close friends. This clear message transcends any
registration system likely to be used in Northern Ireland where family consent is
crucial to donation.
61
Appendix A: Topic guide used for stakeholder engagement
discussion groups
Organ donation stakeholder engagement
Discussion guide June 2013
Introductions
What do you think could be done, and by whom, to improve organ donation in
Northern Ireland?
Prompts:
- By Government, HSC, public, media etc.
- What do you feel are the main issues for the public and why?
- How could the public be better informed about organ donation?
Would you be supportive of a public information campaign for organ donation?

Why do you say this?
What do you think should be included in a public information campaign on

organ donation?
Prompts:
- What should be the key message(s) of a PIC?
- Approach?
What are your views about the current registration system for organ donation
in UK?
What do you think are the main influences for potential donor families when
they are considering consent?
Prompts:
- What would make the consent choice easier?
What are your views about a soft opt-out/presumed consent registration

system for organ donation?
What do you think the impact would be of introducing a presumed consent

(soft opt-out) system in Northern Ireland?
Prompts:
- On the number of available donors
- Number of available organs for transplant
62
Appendix B: Additional tables
Table 7: Knowledge score by key variables in public attitudes survey (n=1,012)
Knowledge score
M n
All 3.3 1,012
Gender Male 3.1 495

Female 3.3 517
Age*** 16–29 3.0 275

30–44 3.4 265
45–64 3.4 289
65+ 2.9 183
Socioeconomic group*** ABC1 3.5 466

C2DE 2.9 546
Trust area*** Belfast 2.9 200

Northern 3.2 273
South Eastern 2.9 190
Southern 3.5 182
Western 3.7 167
Urban/rural*** Urban 3.1 728

Rural 3.6 283
Religious affiliation* Catholic 3.2 354

Protestant 3.1 441
None 3.5 190
Political affiliation Nationalist 3.1 209

Unionist 3.0 370
Other 3.1 68
Refused to answer 3.5 365
Limiting long-term illness or disability*** Yes 2.9 265

No 3.3 747
Self-reported health status*** Excellent / Good 3.3 708

Fair 2.9 224
Poor / Very Poor 3.0 80
Registered on Organ Donor Register*** Yes 3.9 269

No 3.0 743
Family/friend organ recipient, on waiting list or Yes 3.5 229

have you donated an organ* No 3.1 783
63
Public Health Agency, 12–22 Linenhall Street,
Belfast BT2 8BS. Tel: 028 9032 1313.
10/13
www.publichealth.hscni.net
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Organ donation

Public attitudes and stakeholder engagement

cover1.indd 1 14/10/2013 09:44

List of tables ............................................................................................................ 4

Organ donation and registration on the Organ Donor Register

• supportive of organ donation;

Discussing organ donation with your family/friends

Seventy eight percent of respondents agreed that it is important to discuss your

What can be done to improve organ donation in Northern Ireland?

Stakeholders felt it is important to normalise organ donation. Informing the public by

The soft opt-out/presumed consent debate

In relation to stakeholders, support for soft opt-out/presumed consent was higher

Fifty four percent of respondents supported the idea of introducing a mandatory

The advantages of introducing soft opt-out/presumed consent legislation identified by

Concerns among stakeholders about the introduction of soft opt-out/presumed

1.2 Organ donation in Northern Ireland

1.3 Donation systems

Figure 1: Percentage of population on the ODR, by UK region

Figure 2: Source of ODR registration for Northern Ireland

Driving licence application 362,681

Boots advantage card 37,907

NHSBT website 24,334

NHSBT leaflet 85,193

Organ donor line 2,968

0 100,000 200,000 300,000 400,000

Many European countries have adopted opt-out systems, of which Spain is

In recognition of the complex issues and widely differing viewpoints surrounding

However, in September 2013 a new Human Transplantation Act received royal

1.4 Notes on the report and statistical references

2.1 Public attitudes survey

The survey was divided into four sections as follows:

Section A: Attitudes and knowledge about organ donation

2.2 Stakeholder engagement

Discussion groups took place at a time and location convenient to stakeholders to

Table 1: Method of engagement with HSC staff

ICU City Group discussion 2 clinicians

Table 2: Public engagement programme: charities, waiting list, recipients and

3.1 Awareness of the Organ Donor Register and registration on it

• be aged 65 years and over;

Don’t want my organs to be donated 35

Haven’t really thought about it 31

Like to but haven’t got round to it 3

Figure 6: Reasons for not wanting to donate (prompted, n=60)

No control over who my organs would go to 51 30 20

Can't be sure I'll really be dead when the

Would be tempting fate 39 44 16

Don't want my body experimented on 84 13 3

Doctors wouldn't fight too hard to save me

I'm too old 23 67 10

Don't believe my organs are good enough 18 68 13

I'm too unwell 16 75 8

Agree Disagree Don't know

Figure 7 shows that approximately half of respondents provided correct responses

Figure 7: Responses to six knowledge items (n=1,012)

Racial discrimination prevents minority 28

True False Don't know

Figure 8: Respondents' views of organs/tissue that can be transplanted

All of the above 52

Table 3: Number of correct knowledge items

Socioeconomic ABC1* ABC1* C2DE* ABC1* ABC1* ABC1*

HSC Trust Southern Belfast Western NS South* Southern***