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Report on Social and Behavioral Interventions
to Increase Organ Donation Grant Program 1999-2004
Community Outreach and Media Campaigns
Community Outreach Campaigns
Public education divisions of most organ procurement organizations
(OPOs) in the U.S. tend to focus the bulk of their energy
on community outreach events. These are generally low-cost
activities with the opportunity to address myths and misconceptions
about organ donation in a manner that is tailored to individual
populations (e.g., school-aged children, church congregants,
minority populations). Moreover, such events allow OPOs to
put a “human face” on organ donation because OPOs frequently
include testimonials from transplant recipients or donor family
members as part of their outreach strategy.
Most of the funded programs in this area included multiple
strategies, the most common of which was to support community
outreach events with mass media campaigns; these projects
are discussed in the next section. There are other successful
strategies implemented by the consortiums funded by DOT, including
community outreach activities paired with hospital-based activities,
including efforts to re-train OPO requestors to be more effective
through improved communication or to become more sensitive
to important cultural issues, and/or to use OPO requesters
who are culturally similar to potential donor families. The
effectiveness of hospital-based aspects of these projects
is evaluated in a subsequent section (“Hospital-Based Interventions”).
Projects that were primarily based on community outreach but
that reported airing radio PSAs, for example, but did not
engage in a systematic evaluation of this (minor) media component
are categorized for the purposes of this report to be “community
outreach campaigns” and are discussed in this section.
Most community outreach projects systematically combine events
that are held in different settings or that are designed to
systematically target (again, in a systematic fashion) particular
populations. One such example targeted the Asian and African
American communities of central California1.
First, community outreach workers who were members of the
African American, Chinese, and Filipino communities were hired
and trained. Second, activities of these outreach workers
focused on settings and events within the targeted communities,
including churches, schools, and ethnic festivals. By partnering
with community-based sponsors of these events, OPOs realized
an unexpected long-term benefit: greater credibility within
these minority communities. Two key outcome measures demonstrated
the effectiveness of this comprehensive approach (which also
included hiring culturally similar requesters). The results
of a random sample pre- and post- telephone survey of community
members showed significant improvements in the intent to donate
organs. A second outcome measure showed an impressive increase
in actual consent rates during the project period, compared
to previous years. It is estimated that approximately 80 additional
transplantable organs were realized as a direct result
of the project over just two years, demonstrating the cost-effectiveness
of a relatively simple set of outreach strategies.
Another project in Buffalo2
successfully utilized the strategy of hiring and training
community educators who were members of the targeted African
American and Hispanic communities. Through a partnership with
the area’s medical school, medical students assisted community
outreach workers in educating members of each community about
organ donation in a variety of settings, including community
centers, medical clinics, churches, and community events.
The project demonstrated the efficacy of including interaction
with an outreach worker rather than simply distributing informative
brochures. Also, including a medical student added to the
effectiveness of the program, as did hosting events at neighborhood
churches. The project was able to demonstrate its effectiveness
(through a random sample pre/post-test survey with a combined
total of approximately 14,000 Latinos and African Americans)
in reducing resistance to donation as well as increasing the
willingness to talk with family members about donation. Perhaps
most revealing are the steady increases in consent rates in
both communities over the project time period: consent rose
from a pre-project 26% to 31% in the first year of the project,
40% in the second year of the project, and 45% in the project’s
final year.
A project in Houston3
also used outreach in Black churches as a central strategy
for increasing the willingness to donate among African Americans.
However, these efforts were met with mixed results. LifeGift
created a professionally produced manual for African American
clergy and were successful in increasing the perceptions of
clergy that organ donation was an important community issue.
A detailed study in four area Black churches, however, demonstrated
that there were few appreciable increases in the outcomes
of interest (comfort level with organ donation, believing
that organ donation is not against one’s religion, medical
mistrust, and willingness to have family discussions about
donation), nor did actual donation consent rates rise during
the project period. It is unclear what types of outreach activities
the project team conducted in Houston churches and whether
the information or persuasive appeals were tailored to the
outcomes that were measured.
Yet another project that used churches as the primary site
for outreach and education activities centered on the African
American/Black, Haitian, and Hispanic communities in Miami4.
Because the results of formative research demonstrated that
2/3 of Haitians and Blacks and half of Hispanics had not even
considered becoming potential organ donors, this campaign
focused on targeting barriers that included perceived inequities
in the organ allocation system, medical mistrust, and the
belief that donor families incurred extra costs. The project
was able to improve knowledge about organ donation in all
three ethnic groups, especially among Haitians, as well as
the rate of family discussions about donation. However, Blacks
were the only group that significantly improved on the rate
of signed donor cards (from 10% to 16%). Interestingly, both
the Miami project and the Buffalo project concluded that clinics
were not a particularly efficacious site for outreach because
outreach workers were interrupted when the patient was called
into the office and because brochures alone did not appear
to effect actual behavioral change.
However, outreach in a similar setting (hospitals) was successfully
conducted through the use of interactive computer kiosks placed
in hospitals in several cities in Louisiana5.
Although it is clear from their results that most people sign
up to become donors through the state’s driver’s license bureau,
the kiosks were able to generate more donor registrations
than all of the OPO’s other community outreach events. Because
the kiosks cost approximately 5-6 thousand dollars each and
because maintenance costs were borne by hospitals (who were
gifted the kiosks with the stipulation that organ donation
information and access to the registry remained), this strategy
may be highly cost-effective when compared to the salary,
benefits, and training costs associated with hiring additional
outreach workers.
Overall, community outreach campaigns tended to focus on
particular ethnic or racial groups, with an impressive rate
of success. Partnership with community and religious organizations
appear to be central to the success of these interventions,
as is the use of culturally-similar community outreach workers
to educate each community.
Community Outreach Campaigns with Mass Media Components
Because of the high cost of purchasing mass media many project
teams elected to focus exclusively on community outreach activities.
However, many DOT-funded community-based projects include
some type of mass media component (radio, television, and/or
print) because of the opportunities afforded by federal funding.
It should be noted that because the efficacy of organ donation
public education campaigns had not yet been tested (and indeed,
principles that can lead to successful outcomes are still
being evaluated), OPOs have been largely reluctant to devote
significant resources to media campaigns. Thus, the grant
program will eventually give OPOs the opportunity to determine
future courses of action based on the lessons learned from
these projects.
Two projects, one in California6
and the other in Arizona7,
targeted Latinos with a Spanish-language media campaign. Interestingly,
pre/post-test telephone surveys (conducted in Spanish) of
Hispanics in Arizona revealed little movement in self-reported
behavior change, such as signing a donor card (although there
were such increases in California). However, both areas reported
an increase in the willingness to talk about organ donation
with family members. Perhaps as a function of increased family
discussion about donation, actual consent rates rose in both
areas during the project periods, and at a rate that exceeded
any increase in consent by the White population, providing
evidence of the effectiveness of such targeted campaigns.
For example, consent rates in Arizona among Hispanics rose
11% while the consent rate for whites rose 6%. In Southern
California, similar results were found for the same type of
campaign. In addition to improvements in knowledge and attitudes
as demonstrated through pre/post telephone surveys, Hispanic
consent rate in Southern California increased from a baseline
of 32% to 48%, 55%, and 57% during the three years of the
project. Given the large population of Hispanics in California
and Arizona, these projects have resulted in increased numbers
of organs available for transplant which translates into many
lives saved.
An ongoing project in Charlotte, North Carolina8
is targeting African Americans with combined outreach activities
and a supporting mass media campaign. Community-based activities
include outreach in Black churches (presentations, church
bulletin inserts), outreach through the Black Medical Association
(continually stocking brochures with donor cards in all area
clinics, doctor’s offices and dental offices that serve primarily
African Americans), and participation in Black community events
(including festivals, health fairs, and sponsorship of a large
annual gospel concert). The media campaign consists principally
of radio and television PSAs produced by the Coalition for
Donation, the national public education organization funded
by OPOs. Because one of the key outcome measures is donor
registry activity, the success of the program can be tracked
in the interim. Relative to baseline activity on the DMV-based
donor registry for both African Americans and non-African
Americans, it is clear that over the course of the last seven
months, African Americans are registering as donors at an
increasing rate, and at a rate of increase that exceeds that
of non-African Americans. The actual consent rate for donation
among African Americans has jumped 56% during the project
period, while the consent rate for non-African Americans has
held steady, providing evidence that this African American
targeted campaign is effective.
As with the community outreach campaigns, projects that reinforced
grassroots efforts with media components tended to focus on
specific minority groups. Perhaps because of the concentrated
focus on the specific goal of changing behavior in a single
population, these projects were highly successful, not just
in raising knowledge or awareness about organ donation, but
in improving actual consent rates for donation. These significant
improvements in tangible outcomes have resulted in an increased
number of organs available for transplant, which is especially
important in the African American community where tissue-type
matching issues remain a concern.
Division of Motor Vehicles (DMV)-Based Campaigns
There are two projects that use Drivers’ License Bureaus
as the primary context or target for interventions. A Chicago
group9
developed a sequence of activities within a DMV with a predominantly
African American clientele, including the distribution of
ethnically tailored brochures containing information about
organ donation and brief one-on-one discussions with a trained
outreach worker. In addition to monitoring DMV donor registry
rates, the researchers used the results of phone surveys to
determine whether the intervention would have an impact on
family discussions. Although donor registry rates did not
improve significantly above the 26% baseline rate, people
who had received the intervention and had registered as donors
were significantly more likely to discuss their intentions
with family members than those who had not received the intervention.
A somewhat different approach was taken by a Utah consortium10.
Rather than using the DMV as the site of the intervention
to promote the donor registry, the Utah team used a variety
of media and other outreach strategies to promote the registry
in advance of the decision-making process at DMVs. As a result
of a combination of media campaigns, worksite interventions,
direct mailings to zip codes where registrants were underrepresented,
and other community outreach events, the donor registry grew
from 54.4% to 63% of the population in just over two years.
Similarly, the consent rate rose from 65.8% to 71.4% over
the same period. Perhaps even more importantly, the consent
rate of the families of potential donors who were on the registry
was 97% (57 of 59 potential donors) while the same rate of
non-registrants was 61% (51 of 83 potential donors). Thus,
the registry is responsible for a net increase of 21 additional
donors, representing a substantial number of additional transplants
for potential recipients on the transplant waiting list. This
project points to the importance of conducting further research
on the impact of registries on donation rates, as well as
to the potential of using DMV registry figures as evidence
of the impact of public education campaigns.
Although there are few projects that focus on DMVs, this
may be a promising avenue for further research for two reasons.
First, DMVs represent a key point for organ donation decision-making
for many people. Providing information in DMVs may assist
people in making this important decision. Second, OPOs in
states that have DMV-based registries have a built-in, immediate
means of evaluating the effect of providing information in
DMVs, or perhaps more importantly, the effect of all types
of public education campaigns.
Minority-Focused Campaigns
One of the most notable features of the Division of Transplantation’s
grant program is the number of theory-based interventions
that include a special (or exclusive) focus on minority populations.
Especially important are campaigns targeting African Americans
not only because of the disproportionate lack of willingness
to donate organs, but because African Americans are overrepresented
on the transplant waiting list. Hispanics, the largest minority
group in the U.S., face not only cultural barriers to accepting
organ donation but frequently language barriers as well. The
attitudes, knowledge, and behavioral willingness of other
minority populations such as various Asian minorities, the
Arabic/Chaldean community, American Indians, and others, remain
largely a mystery to researchers as well as to public educators
in the organ procurement community. The DOT program has funded
successful endeavors that shed light on the types of interventions
that may be the most successful in a variety of cultural communities.
In 2004, DOT funded a number of special 2-year projects that
required grantees to create media and grassroots campaigns
that focus on minority communities. At least 75% of funds
were required to be spent on media buys, a requirement that
was intended to help test whether some degree of media saturation
would produce a measurable increase in key outcomes of interest
in minority communities. These projects will conclude next
year; however, where available, preliminary findings from
these projects are presented.
Many projects with an emphasis on minority communities targeted
more than one community, depending on which minority groups
predominated in an OPO’s service area. A number of the findings
have been discussed in earlier report sections; therefore,
this section will focus on findings particular to each group.
African Americans/Blacks
Most projects targeting African Americans (or Blacks, a term
that encompasses people of Caribbean or West Indian descent)
focus on churches as an important setting for community-based
outreach. In addition to this, successful projects have concentrated
on building community partnerships with Black community and
professional organizations and have made concerted efforts
to have a presence at all community events, including having
information tables staffed by African American staff and volunteers
or even sponsoring one or more of these events. Cultural similarity
of community outreach workers as well as transplant coordinators
was a key part of successful interventions targeting the African
American community.
Hispanics/Latinos
Hispanic outreach campaigns have been largely successful and
have several elements in common. First, Spanish-language media
messages were placed in Spanish-language programming. Similarly,
Spanish-speaking outreach workers (either traditional OPO
community education professionals or trained promotores) were
a key element to building a presence in the community and
delivering organ donation messages to the community. Second,
as with outreach in the African American community, building
partnerships with business, professional, and community organizations
and developing a consistent presence at Hispanic community
events was another important strategy in successful campaigns.
Both pre/post evaluation phone surveys (conducted in Spanish)
and monitoring of Hispanic consent rates (compared to consent
rates of Whites) demonstrated the success of these interventions
in increasing the willingness to donate and improving perceptions
of family and community support for organ donation.
Asians
There are only two campaigns thusfar that specifically target
the Asian community (rather than simply monitoring the effect
of a general campaign on Asians). However, these campaigns
demonstrate the importance of employing culturally similar
outreach workers and/or requestors who speak the language
of the targeted community. As One Legacy points out, however,
the Asian community is not mono-lingual; many languages are
spoken even among people from a single country (China). However,
by targeting the largest Asian groups and by building relationships
with reporters from the newspapers that serve these communities,
information about organ donation was able to be disseminated.
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