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As of October 31st, 2018, the United Network for Organ Sharing (UNOS) reports there
are 114,675 people waiting for a lifesaving organ and tissue transplant and tragically an average
of 20 people a day die waiting on the transplant list because there aren’t enough donors
(UNOS, 2018). This imbalance between those on the waitlist and the number of available
donors is the number one problem for transplantation today. Data from the U.S. Department of
Health and Human Services shows that among those waiting for a transplant 30% are African
Americans, making them the largest minority group in need of transplants (U.S. Health &
Human Services, 2018). This is in part due to the fact that African Americans have a higher
prevalence of diabetes, kidney disease, hypertension, hepatitis, and other chronic illnesses that
plague the African American (AA) community (UNOS, 2018; U.S. Health & Human Services,
2018). Previous research has also found that those waiting for a kidney transplant, for example,
have an enhanced chance of finding a compatible kidney donor when there are “larger
numbers of donors from their same ethnic/racial background, with racial concordance between
donor-recipient pairs >95%” (Locke et al., 2015, p. 286).
Combine those sobering realities with the fact that African Americans only make up
roughly 14% of the total U.S. population and African Americans agree to become donors at
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about half the rate of Caucasians and the disproportionate need for more AA donors becomes
clear (Siminoff & Sturm, 2000; U.S. Census Bureau, 2018). More alarming still is that fact that
the wait list for transplants is growing three times faster than the rate of available donors and
previous data shows that donation rates have peaked and are now slightly decreasing each year
(DuBay et al., 2012; Morgan & Miller, 2002). Collectively, it becomes easy to see why increasing
not only the number of donors overall, but more specifically the number of African American
donors, is a public health imperative.
Previous studies have examined African American attitudes towards donation in both
quantitative and qualitative ways (Callender & Miles, 2010; Morgan, Miller, & Arasaratnam,
2003; Quick, LaVoie, Scott, Bosch, & Morgan, 2012; Yuen et al., 1998). This study builds on that
previous work and seeks to extend it in a few ways. First, the sample for this study is not the
typical college student sample that has been examined in several previous studies (Feeley,
2007; Hall, Robbins, Paiva, Knott, Harris, & Mattice, 2007) and instead selected a broader
sample from a predominantly African American neighborhood in the Midwest. Next, this study
utilizes both quantitative and qualitative methods to gain a better understanding of how
African Americans view barriers to donation and opportunities for strategies that would solicit
more donors. Finally, this study utilized a specific type of focus group, the nominal group
technique, which allows for more thought-listing and overall ideas, but at the same time limits
the potential for one voice to overwhelm all of the other voices in a focus group.
African Americans and Organ Donation
There are largely 4 barriers to increasing the number of African American donors: lack of
awareness/knowledge, medical distrust, religious and bodily concerns, and medical missteps
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(Reinhart, 2013). Erroneous beliefs about organ donation seem to be most pervasive among
African Americans than any other racial group, with a majority of African Americans unaware of
the real need for donors and instead filled with mistaken opinions on the donation process
(Hall, Robbins, Paiva, Knott, Harris, & Mattice, 2007; Morgan & Cannon, 20003), Medical
distrust can encompass misgivings of the medical community in general, deep suspicions in
what African Americans perceive to be an untrustworthy organ allocation system, and fear of
continued racism in the medical community after past events like the Tuskegee Syphilis Study
(Kurz, Scharff, Terry, Alexander, & Waterman, 2007; Morgan & Cannon, 2003; Schutte &
Kappel, 1997; Siminoff & Arnold, 1999; Yuen et al., 1998). There are a myriad of religious and
spiritual beliefs that have been shown to present obstacles to donation (Morgan & Cannon,
2003; Morse et al., 2009). One such bodily concern is the desire to maintain bodily integrity and
another is the fear of mutilation. These concerns are expressed by both potential donors and
next of kin (Davidson & Devney, 1991). Combined those two concerns provide both barriers to
getting people to become donors themselves and to getting families to consent to donation.
The last barrier is connected to how the medical community approaches donation requests for
African Americans. Previous research suggests that health care providers were less likely to talk
to African Americans versus Caucasians about organ donation and spoke differently about
donation to the different racial groups (Arnold, Puswella, & Devita, 2005). These concerns
represent large roadblocks for increasing African American donors and all have been the focus
of past research.
The Health Belief Model
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The Health Belief Model (HBM) provides a comprehensive framework for how people
make behavioral decisions and perceive health threats (Hochbaum, Rosenstock, & Kegels, 1952)
and it has been widely used in health research (Armitage & Conner, 2000; Janz & Becker, 1984;
Skinner, Tiro, & Champion, 2015). The HBM has six constructs used to explain people respond
to perceived health threats, such as the decision to become an organ donor, would be made
(Hochbaum, Rosenstock, & Kegels, 1952). First, perceived severity and perceived susceptibility
address one’s perception of how acute a health threat is and the likelihood of an individual
experiencing such a threat (Hochbaum, Rosenstock, & Kegels, 1952). In regards to organ
donation this would be connected to how severe one views the need for organ donors and the
likelihood that they themselves would need a transplant. Next, perceived benefits and perceived
barriers represent the positive or negative consequences of performing the suggested health
behavior (Hochbaum, Rosenstock, & Kegels, 1952). Here a person would weigh the pros and
cons of becoming a donor and only sign the registry if the pros outweighed the cons. Cues to
action and self-efficacy (Rosenstock, Strecher, & Becker, 1988) are concepts later added to the
Health Belief Model to first address a trigger needed to spark a person to act (e.g., sign a donor
registry after being asked at the DMV, where the request is seen as the stimulus or cue for the
behavior) and next a person’s perception of their ability to correctly perform the suggested
behavior (e.g., a person feeling confident about following the process to become a donor).
The HBM has been previously applied to formative research in the area of organ
donation by Quick, LaVoie, Scott, Bosch, and Morgan (2012) who held focus groups with African
American, Hispanic, and White high school students to better understand perceptions of organ
donation. Quick et al. (2012) examined all six concepts associated with the HBM and found that
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participants saw more barriers to becoming a donor than benefits. They also discovered that
decisional and task efficacy were highlighted as types of self-efficacy that could be targeted in
future campaigns.
African American focus groups on organ donation and HBM were the subject of another
study by Williamson, Reynolds-Tylus, Quick, & Shuck (2017) and again it was found that
subjects saw more barriers than benefits to donation, thereby making them reluctant to
become donors themselves. Williamson et al. (2017) also concluded that participants felt
susceptibility and severity in regards to organ donation and were high in task efficacy (i.e., the
perceived complexity of following the process to become a donor), but low in decision efficacy
(i.e., the perceived complexity of making the decision to become a donor).
Given the previous findings of Quick et al. (2012) and our focus specifically on African American
participants who are known to have more reluctance to becoming organ donors, we targeted
the barriers and cues to action components of HBM in regards to organ donation with two
targeted questions. Barriers continue to represent a large deterrent to becoming a donor, so
gaining a better understanding of what African Americans see as the potential barriers is crucial
to the success of future campaigns. In regards to organ donation cues to action represent the
external (e.g., campaign messages), and internal cues (e.g., interpersonal experiences) that
influence a person to undertake the proposed action (becoming a donor), so isolating those
strategies that African Americans see as most likely to spark action is very important moving
forward. The first question examined barriers that keep African Americans from becoming
donors and the last question examined what participants saw as the strongest cues to action
for their community to increase the number of African American donors.
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RQ1 What are the biggest barriers to becoming a deceased organ donor for African
Americans today?
RQ2 When looking to overcome those barriers, what do you see as the best strategies
to get more African Americans to become donors?
Nominal Group Technique
In order to avoid the potential pitfalls of a traditional focus group where one voice could
drown out the others or participants are uncomfortable sharing their true opinions, a specific
type of focus group technique called the nominal group technique (NGT) was employed. The
nominal group technique is a 4-step structured group interview process that is well-established
and known to generate more equal participation among group members (Allen, Dyas, & Jones,
2004; De Ruyter, 1996; Sink, 1983). During step 1 participants engage in silent generation by
privately writing down answers to a study question. Once all responses have been written
down participants move into step 2, round robin, and go around the table orally stating one
answer until all have been exhausted and these responses are written out for everyone to see.
Step 3 involves clarifying and consolidating where participants are given a chance to
have ask any nonevaluative questions they may have about a given answer (e.g., “what did you
mean by lunch and learns for a campaign?”) and all of the answers are consolidated into overall
themes (e.g., if two participants gave similar answers that relate to the black market they are
combined into a single overarching theme or category). In the final step participants return to
working on their own and privately rank the top 5 answers from the consolidated list that best
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answer the study question. The silent generation and private ranking steps allow participants to
express their attitudes more freely than a typical focus group and it has been found that more
ideas overall are generated through this process (Allen, Dyas, & Jones, 2004; De Ruyter, 1996;
Sink, 1983).
Locke et al. (2015) used the nominal group technique to investigate strategies that
would help African Americans more readily become organ donors. During four focus groups
with church-attending African Americans, Locke et al. (2015) found that participants cited
better education and increased knowledge efforts as the most prevalent strategy to make it
easier for people to become donors and that current efforts fell short in meeting the
information needs African Americans had prior to deciding to become a donor (decisional
efficacy).
The current study extends the work of Locke et al. (2015) in three distinctive ways. First,
study participants were not limited to church-attending participants and instead included clergy
members, church-attending participants, community members, and college students for a more
representative group within a community. The group also differed across ages and educational
levels as well. Next, this study was rooted in the tenets of the Health Belief Model and
examined both barriers and cues to action, rather than just a single question centered around
how to best facilitate new donors. Lastly, this study utilizes a pre-nominal group survey that
included some quantitative measures in order to provide statistical information about the
group, rather than just the qualitative answers given during the focus group. This approach
allows for a more well-rounded understanding of the attitudes and knowledge base of the
group, as well as delving into the specific answers to the two research questions.
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Method
Participants and Procedures
Seven groups (N = 50) were conducted over a five-month period with participants either
living in a nearby predominantly African American community (4 groups) or being an African
American student on college campus that also lived in the selected research area (3 groups).
College students filled out a screening survey that asked several demographic questions, such
as zip code, in order to select only students who lived in the research area. Students were
solicited using class announcements and fliers. Community members were solicited first
through messages to their profiles on LinkedIn (which showed that participants lived or worked
in the research area). After the initial community group was screened snowball sampling was
used for the remaining groups. This snowball method proved more far successful than being
contacted directly the researchers.
Groups ranged in size from 6-8 participants. Approval from the Institutional Review
Board was secured before proceeding with any group and informed consent was received from
each individual participant. An honorarium of a $40 gift card was paid to each participant and
each group lasted approximately 90 minutes. Each session was audio and video recorded for
transcription purposes. The lead author was the moderator for each group and was assisted by
one of two doctoral students during each session.
Nominal Group Facilitation. At the start of each session the moderator explained that the
purpose of the session was to better understand organ donation through the eyes of the
African American community and to uncover strategies that could be used in a campaign to
increase AA organ donors within their community. A basic overview of the nominal group
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technique, as well as the rules for the 4 stages, was provided and then informed consent was
obtained. The two research questions were asked using the 4-step nominal group technique,
with participants first writing down their own unique responses independently and then
discussing them as a group in a round-robin format. The responses were written on a white
board verbatim until all responses had been recorded. Next, participants were given an
opportunity for clarification of answers with no value statements introduced. At times this
discussion led to further response elaboration and more responses were added to the list.
Responses were then narrowed into larger, more primary categories through group discussion
and complete agreement from all members. From that discussion a final list of responses was
determined. The last step for each question entailed participants privately ranking the top five
barriers and potential strategies for increasing the number of AA donors from the primary
categories the group had generated. Once the 4 steps were completed for one question the
process started over again for the next question.. After fully discussing the two research
questions participants filled out information regarding their desire for follow-up information
and to be contacted for subsequent studies. They were then thanked, debriefed, and the
session was concluded.
Data Analysis
Data analysis took place through organizing the rankings for each question within each
group and then awarding points for each individual ranking. Items that were selected as #1, or
most important in the ranking were awarded 5 points, items ranked as #2 were awarded 4
points, #3 awarded 3 points, #4 awarded 2 points, and items ranked as #5, or least important
out of their ranked choices, were awarded 1 point. The scores were then summed for an overall
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response score for each of the themes, with higher scores indicating a more highly ranked or
widely cited response. Some participants did not pick 5 barriers or strategies and instead
picked those that they thought were most relevant to them, so not everyone used the same
number of votes. Quotations from varying focus group members were selected for inclusion to
highlight a specific suggestion or if they were representative of the overall theme.
Results
Forty-eight African-American adults and 2 Caucasian adults1 completed the survey and
participated in the NGT groups. Sixty-four percent of the sample was female and the mean age
of participants was 36.47 (SD = 16.44). The oldest participant was 70 and the youngest was 18,
so there was a large range of ages present at the sessions. For the highest education level
achieved all participants had earned a high school diploma or an equivalent degree and three
participants had earned either a PhD or other professional degree. Fourteen participants were
registered organ donors and three more participants intended to become donors in the future,
leaving a majority of participants (33 or 66%) as nondonors without any clear plans to become a
donor. Out of the 50 participants eleven had communicated their wishes to their family
members.
Basic Survey Results
Attitudes. Participants were asked to complete a 5-item attitude scale toward organ
donation using a 7-point Likert-type scale ranging from “strongly disagree” to “strongly agree.”
The scale was adapted from Reinhart, Marshall, Feeley, & Tutzauer (2007) and included items
such as “I support the idea of organ donation for transplantation purposes” and “Organ
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donation allows something positive to come out of a person’s death.” The scale had adequate
reliability ( = .76) and in general participants had moderately positive attitudes toward
donation (M = 5.28, SD = 0.91).
Knowledge. Participants were also asked to answer 10-items related to knowledge
about organ donation adapted from Morgan & Miller (2002). The scale included items such as
“Given equal need, a poor person has as good a chance as a rich person of getting an organ
transplant (true statement)” and “Racial discrimination prevents minority patients from
receiving the transplant they need (false statement).” Participants were given the option of
answering “true,” “false,” or “don’t know” for the knowledge questions.
All correct answers were awarded one point and all points were summed, so that the
total knowledge scores would range from 0-10. Consistent with previous research participants
had low levels of knowledge (M = 3.54, SD = 1.91) and no one received a perfect score (Range 0
– 9). There were 2 knowledge questions that most participants missed (N = 42). They were
“Given equal need, a poor person has as good a chance as a rich person of getting an organ
transplant (false statement)” and “A person must carry a signed donor card giving permission
before they can become an organ donor (false statement).” The knowledge question most
participants got correct (N =33) was “Many people on the national waiting list for organs die
because an organ doesn't become available in time (true statement).”
Biggest Barriers
The first question examined perceived barriers to becoming a donor for African
Americans. Altogether the seven groups identified 29 unique barriers to donation and each
group discussed between 7 and 10 primary strategies total. Lack of knowledge about the
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donation process and need for donors was cited by each of the 7 groups, with 6 out of 7 groups
placing that barrier as the 1st or 2nd highest-rated barrier.
As one of the community participants stated: “I feel like I have no clue what would they
do…like what is the procedure, what does it entail as far as the whole donation process. I have
no clue about any of that.” Participants also cited lack of awareness about donation and not
thinking about the topic as a major barrier for four of the focus groups as well.
Community member: I stated lack of awareness. I think the only time that it's ever been
really thoroughly discussed, in my experience, was at the time when I obtained my
driver’s license, option to sign or not, and that was an odd place to ask such a question
where I got little information about it.
Participants also noted they believed there would be religious objections to becoming a
donor for many African Americans, with five groups citing religious objections as a barrier and
four groups citing spiritual objections. One group member pointed to specific parts of their
religion as a barrier to donation: “I know there are actually some religions where it even states
‘leave the body as it is and don't touch it after death’.” Participants were quick to point out that
spirituality could rest outside of religion, so the two categories should be kept separate and
addressed as discrete concerns. One person pointed out spirituality as a barrier focusing on,
“The fear of it [donation] spiritually messing with my life after death.”
Three groups also pointed to historical events, like the Tuskegee Syphilis Study, for
mistrust of the medical community as another potential barrier. As one group member put it:
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Student member: Like the Tuskegee experiment years ago and how the medical community had
infected the African Americans with syphilis…but they lied to them and told them something
totally different…information spread throughout the African American community, which
created the mistrust saying "Oh, they're lying. They'll tell you one thing, but they're going to do
something else."
Common myths. Several common myths regarding donation were still pervasive among
participants, demonstrating that previous education efforts have not fully dispelled these
concerns. The most commonly cited myth was a fear of organs being sold on the black market,
with 5 out of 7 groups including it as a major barrier to donation for African Americans. One
group member said a potential barrier would be: “Specifically, Black folks going missing, their
organs being sold to the black market.” Relatedly, participants were concerned about the
Hollywood portrayal of organ donation and if the things shown in the movies were accurate
depictions of the donation process. Participants cited movies like Get Out, John Q, and Seven
Pounds to demonstrate unethical donation practices. One participant pointed to another film
where: “There was a movie out that if you didn’t pay the hospital they came and they took the
organs back.”
Not receiving life-saving measures if medical professionals knew you were a donor was
also cited as a major barrier by five groups. One participant stated a major fear “That doctors
are allowing patients to die to get the organs.” Some groups were also concerned that donor
lists were not fair in terms of race and/or wealth as well. As two participants noted:
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Community member: I kind of feel like the list is probably unfair because of racial issues
in our society…financially also but I'm sure racially. With enough money, you can buy
yourself to the top of any list.
Community member: The feeling that preferential [treatment] will be given to largely
Caucasian race, so even if more African Americans are on the list they won’t receive
organs.
Best Strategies
Altogether the seven groups identified 24 strategies to increase donation and each
group discussed between 7 and 11 overarching strategies total. Table 2 details the strategies
identified by each group, along with the total rankings and votes each response received.
Educating the community was the top ranked item in five of the groups and education,
in some format, was addressed in every group. This finding was unsurprising given the lack of
education being also cited as the largest barrier. One participant suggested campaigns: “create
educational resources for families to have so that it's [donation] not looked down upon when
it's time for families to make those decisions.” Relatedly, specific types of education, such as
fully explaining the donation process itself, was cited in six groups and education about the
explicit need for more African American donors was mentioned in four groups. As one student
participant suggested campaigns “A campaign should tell us how our community needs donors,
that Black people need donors, not just general statistics.”
Participants noted that many of the myths regarding donation, such as wealthy
individuals or recipients who were Caucasian being given preferential treatment could be
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eliminated if the process itself was more transparent and people better understood how a
donor list worked. One student participant remarked, “If people knew how the doctors picked
who gets the organs and that the process isn’t rigged it might help them gain more trust in the
system.”
Both testimonials and statistical information were highlighted as strategies that could
convince African Americans to become donors. All seven groups noted that using testimonials
as a potential strategy and five groups cited statistical information as a strategy. Participants
noted the power of hearing donation stories from African Americans who had received organs
or had family members who were donors. One student participant highlighted testimonials as
their top choice, noting, “I would say to have testimonials from people that actually received
the donations, real people, Black people, not actors.” As noted previously participants also
emphasized the power of hearing the statistics specifically about African Americans.
Community member: It would help to know the specific numbers of the African
Americans who need organs and who are on the list. Knowing the numbers helps to
show how serious the problem is for our community.
Involving the community was another widely cited strategy, with four groups voting for
strategies that involved the community and gained their trust and three groups voting for high
school and college students to be educated on the topic specifically and involved in any
campaign efforts. One group member focused on the importance of focusing on the younger
generation:
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Community member: I really think that if you can get the information to high school
students or people who don't have to think about this right now or at least believe they
don't have to think about it now because they're young, that is a way that you begin to
turn over the society and get more donors.
Related to involving the community, partnering with religious leaders within the
community was also noted by three groups. As one community participant put it, “involving
religious leaders gives more credibility to people who run the campaign because they aren’t
one of us, so we might not trust them right away.”
Less frequently cited strategies included better training for organ procurement
organizations (3 groups), using television commercials (2 groups), and hosting health fairs (2
groups). One interesting idea that was mentioned in two groups was the idea of making
donation a more normative behavior within the African American community.
Discussion
This study sought to extend previous work by Locke et al. (2015) and Quick et al. (2012)
in the area of organ donation and African Americans. Our findings expand the literature in this
area by focusing specifically on areas most relevant to African American donors (i.e., barriers
and cues to action), using the nominal group technique, and collecting both qualitative and
quantitative data from the group members.
Recognizing that the total size of the focus groups was not large (N = 50) no inferential
statistics were employed for this study, but data was collected on the overall attitudes and
knowledge of the participants. In general participants had moderately positive attitudes toward
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donation (M = 5.28, SD = 0.91), but average attitudes ranged widely from 3.20-7.00 out of a 7-
point-scale. In general, our findings were lower than typical attitudes toward donation (Feeley,
2007) and slightly lower than previous studies with African Americans only (Morgan, Miller, &
Arasaratnam, 2003). Given the small group for this study it would be inappropriate to make
inferences to a larger population, so further research should be done to see if overall attitudes
among the African American population are going down, rather than up, over time.
Knowledge scores were low overall (M = 3.65, SD =1.82) and again varied widely from 0-
9, spanning almost the whole 10 available points. This data reinforces the NGT findings that lack
of knowledge is a barrier to donation and increased education about the topic of donation is a
strategy future campaigns should definitely use. Most questions averaged around 36% of
participants answering the question correctly and ranged between 15-70% of the sample
answering correctly. The knowledge questions that most participants (N = 42 or 84%) missed
were based on a myth surrounding donation (i.e., “Given equal need, a poor person has as good
a chance as a rich person of getting an organ transplant”) and another about the donation
process (i.e., “A person must carry a signed donor card giving permission before they can
become an organ donor (false statement).” The last statement was also the one missed by most
African Americans in the study by Morgan and colleagues (2003). This finding emphasizes the
need for more education about the process itself and specific types of myths that need to be
included in education efforts in order to combat the prevailing opinions and knowledge on the
topic.
Nominal Group Technique Findings
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Barriers. With all groups citing lack of knowledge about the need for donors and the
donation process itself educational efforts appear to be key for any campaign targeted to
African Americans. This finding supports previous work in the area that has also found
education to be a priority for recruiting more African American donors (DuBay, et al., 2014).
Interestingly, participants also noted a lack of awareness about the topic and not thinking of
donation as a separate barrier. This distinction should be further explored and campaigns
should seek to not only bring general awareness to the topic, but also to educate audiences.
Also connected to issues of education are those of religion and spirituality. Many
participants were unsure if their religion supported donation or cited vague statements linked
to their religion as a barrier to becoming a donor. Educational efforts can help to combat this
uncertainty by letting potential donors know that most major religions either passively or
actively support donation efforts (UNOS, 2019). Campaigns can also partner with religious
leaders for greater community involvement (a strategy discussed within these groups).
In regards to the medical mistrust that some participants noted as a barrier, this is a
known issue in the research on African Americans and organ donation (Cameron,
Rintamaki, Kamanda-Kosseh, Noskin, Baker, & Makoul, 2009; Minniefield, Yang, & Muti, 2001;
Siminoff & Sturm, 2000; Williamson, Bigman, & Quick, 2018). Historical mistrust of the medical
community is rooted as far back as horrific slave experiments during the Antebellum period and
has continued through the years with atrocities like the Tuskegee Syphilis study (Reinhart,
2013). Knowing that this mistrust is not historically unfounded makes it even more difficult to
combat than a known myth or misconception, so thoughtful consideration must be employed
when campaign messages seek to surmount this difficult barrier. Williamson, Bigman and Quick
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(2018) explored issues of donation-related medical mistrust among African Americans using
focus groups and found 4 specific types of mistrust (societal distrust, distrust of general
institutions, distrust of medical institutions, and organ donation-specific medical mistrust).
Future campaigns should focus on the most pervasive types of distrust and work toward
improving them within the African American community.
Research by Callender & Miles (2010) found that using requesters of the same racial
background as the family greatly increased the likelihood of compliance with the donation
request, so perhaps campaign messages being delivered from trusted African Americans within
the community, paired with education, could not only increase donors, but also lessen medical
distrust as well. This approach could also tie-in with the group suggestion of earning the trust of
the community through including community members in the campaign as well.
Knowing that some group members discussed the inaccuracies of Hollywood’s depiction
of organ donation in movies and TV shows and that TV was found to be the most prominent
source for information about organ donation can help to explain how some of the myths and
misconceptions about donation become so pervasive and widespread (Conesa, Zambudio,
Ramírez, Canteras, Rodriguez, & Parrilla, 2004). Research by Morgan, Movius, & Cody (2009)
found that nondonors who watched TV episodes where donation was inaccurately depicted
were significantly impacted by the negative content with more negative attitudes and less
accurate knowledge. Couple those findings with the fact that increased viewing of these
donation inaccuracies, on shows like Grey’s Anatomy, can lead to increased perceived realism
and perceived realism was positively associated with beliefs regarding medical mistrust, disgust,
bodily integrity, and superstitions and one can easily see how increased media exposure can
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harm, rather than help, donation efforts, especially for African American communities that
already have a higher level of medical mistrust and other barriers to donation (Quick, Morgan,
LaVoie, & Bosch, 2014).
Dispelling donation-related myths regarding the black market, the donation process,
and not receiving life-saving measures as a donor would also go far toward increasing AA
donors. McNamara et al. (1999) found that African Americans were 3-4 times more likely to
become donors once they understood medical professionals would do all they can to save a life
before pursuing donation, underscoring the need for education efforts to dispel these fallacies.
Cues to action.
As noted in the barriers section, increasing education efforts and lending transparency
to the donation process were the most selected strategies to increase the number of African
American donors. Knowing that African Americans must first feel that the benefits of being a
donor outweigh the barriers these education efforts should be closely tied with reducing the
perceived barriers. These education efforts can assist with task efficacy by detailing the steps
needed to become a donor, but they could also lead to greater decisional efficacy as more
African Americans understand what donation entails, know the truth about donation versus the
myths, and providing more transparency about the donation process and list. Future campaigns
should seek to raise decisional efficacy and see if educational efforts are the way to do this.
DuBay et al. (2017) studied African Americans’ willingness to engage with a campaign
for organ donation at the DMV and found that participants were open to such efforts. They
cited privacy, informed clerks, and available educational materials as policies that would
support informed decision making, so future campaigns would be wise to view the DMV as a
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potential partner in any educational campaign efforts (DuBay et al., 2017). Coupling a campaign
that incorporated those policies, along with an interpersonal component could certainly
increase donations. Harrison, Morgan, King, and Williams’ (2011) campaign within DMVs saw a
700% increase above baseline in donor registrations. Harrison and colleagues (2011) pointed to
the interpersonal component for generating the highest number of new donors, especially for
the African Americans who decided to register.
Using testimonials and statistical information were widely listed as potential strategies
as well. Previous studies on organ donation have found mixed results in terms of which
message type works best for donation. Kopfman, Smith, Ah Yun, & Hodges (1998) found
statistical messages to be more persuasive and Weber et al. (2006) and Feeley, Marshall, and
Reinhart (2006) found narrative messages to work best. More current research on African
Americans (O’Mally & Worrell, 2014) found a preference for a narrative message over a
statistical message aimed at organ donation. Further research should isolate the best type of
message for those African Americans who have not yet decided on becoming a donor and if the
results point to both types being successful apply both strategies in different targeted
messages. For example, a short statistical message might work best during a visit to the DMV,
while a longer testimonial message might work best when delivered interpersonally.
Participants also discussed increasing family discussions regarding donation and trying
to make donation more of a normative behavior among African Americans. It should be noted
that the passage of ‘First Person Consent’ laws (FPC) are changing the nature of donation by
allowing a person’s donation wishes to remain legally binding upon their death and allowing the
donation process to take place without a family’s consent (Callison & Levin, 2016). Although
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FPC laws will, in some cases, eliminate the need for family consent in order to make donation a
norm and to increase awareness it still remains important to communicate with family
members about donation wishes and to discuss donation in general.
Moving beyond FPC laws states, like Connecticut and Texas, were also exploring opt-out
donor systems, or ‘presumed consent’, which would mean that residents are automatically
registered as organ donors unless they opt out of the system (Samuel, 2017). Outside of the US
whole countries have adopted the system, like Spain, Belgium, and France, and the UK is also
considering such a move (Samuel, 2017). Both measures did not pass within the states, but
some lawmakers are now exploring the viability of a national program of ‘required response’
where each citizen’s preference would be recorded in a national database (Pietrangelo, 2017).
If each state is poised to individually introduce presumed consent laws introducing more broad-
reaching education campaigns to voters will become particularly important to gain support for
these measures.
Limitations
Although the results from this study could be impactful, there are some limitations
worth noting as well. First, the small sample size and specific area where the focus group
members were recruited from makes generalizing to a larger group of African Americans
difficult. While the focus group participants did range in educational level, age, and gender it
should be mentioned that the sample for this study was drawn from an area that experienced
widespread racial unrest over the past few years, so it can be expected that participants would
be much more distrustful of larger government systems, and perhaps organ donation as well.
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Several participants expressed concern about what they saw as systematic racism that could
touch the donation system as well.
Next, due to the nature of the nominal group technique we were able to uncover a
larger number of barriers and strategies, but not ask follow-up questions to really delve into the
“why” for some of those answers. A potential solution to this problem would be to conduct a
few groups utilizing NGT and then a few interviews or focus groups where more involved
follow-up questions could be asked. Lastly, the groups were not separated by gender, so no
conclusions could be made about the different barriers and strategies that men or women
specifically cited as top concerns. Research by Quick, LaVoie, Reynolds-Tylus, Bosch, and
Morgan (2016) noted that African American males and females emphasized different barriers,
so future researchers may want to consider this when engaging in audience segmentation for a
campaign.
Conclusion
Despite those limitations we believe these findings can have a large impact on
campaigns for organ donation, specifically those in the African American community. Our
results come from a group of African Americans who differed in ages, educational levels, and
genders. The results highlight both the barriers a campaign needs to address and work against
and specific strategies chosen by African Americans that they see as best suited to increasing
the number of African American donors. By utilizing these strategies and overcoming the stated
barriers an educational campaign would be well on its way toward increasing not only the
number of African American donors, but also rebuilding trust and connection to the
community.
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Notes
1. One of the clergy members for a predominantly African American churches was
Caucasian and recommended by the African American pastor of the church for
inclusion in the study. One other participant was married to an African American and
recommended to the group by her husband’s aunt, who was African American and
took part in a prior focus group. Both participants were immersed in the community
that was being studied and felt they could add to the discussion of how African
Americans felt about organ donation and were recommended by African American
members of the community, so they were included in the study.
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