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Report on Social and Behavioral Interventions
to Increase Organ Donation Grant Program 1999-2004
Overview and Summary of Report
Overview of the Division of Transplantation (DOT)
Grant Program
In spite of its relatively recent inception, the DOT grant
program has yielded promising replicable programs with demonstrable
impact on improved public opinion and knowledge about organ
donation, increased willingness to donate (as demonstrated
through signed donor cards or through donor registry participation),
increased rates of referrals of potential donors to OPOs by
hospitals, and increased family consent rates for the donation
of a loved one’s organs. In turn, these interventions have
yielded an impressive number of additional organs available
for transplant, ultimately saving the lives of many people
on the transplant waiting list.
Generally speaking, public education efforts in the area
of organ donation, probably because of their “unproven” effects
on public behavior, are largely under-funded. To address the
need to systematically discover the best methods for increasing
the public’s willingness to donate organs (and to express
their wishes to donate to family members), DOT began to fund
“Model Social and Behavioral Interventions to Increase Organ
Donation” in 1999. Projects had to be theory-based and have
a rigorous evaluation component. One of the most unique aspects
of the program is its requirement to establish a consortium
of organ procurement professionals and researchers, assuring
that programs would be faithful to the realities of public
education about organ donation while maintaining methodological
rigor. As a result, a pattern of findings has emerged that
should provide a blueprint for creating more effective outreach
campaigns that are linked to definitive outcomes ranging from
increased knowledge and improved attitudes toward organ donation,
and increased intent to donate to actual demonstrated behavioral
willingness to donate (by signing a donor card or joining
a donor registry) and ultimately, actual rates of organ donation.
The scope of this report
This report reviews grant projects that were funded in fiscal
years 1999, 2000, and 2001 which submitted final reports by
December, 2005 containing sufficient evaluation procedures
that the level of success of the program could be assessed.
It should be noted that many projects file for one-year no-cost
extensions because the short 3-year time frame is often inadequate
to fully complete the project and/or evaluation procedures.
However, where solid preliminary data exist from ongoing projects,
this information is integrated into the report.
Overview of Interventions
The establishment of public campaign principles to encourage
donation have occurred only recently, given that only the
projects initiated in the years 1999 - 2001 have been completed.
One finding that has been clear is that organ donation promotion
efforts cannot rely on principles thought to be effective
with other health-related behaviors for several reasons, including:
- Donation happens only after death (no immediate consequences)
- Donation, the behavior that we are trying to encourage,
does not (directly) benefit the donor
- As part of our promotional efforts, we require members
of the public to think about their own deaths and to talk
about their own deaths with their loved ones.
Contrast these conditions with traditional health promotional
efforts such as smoking cessation, drug abuse prevention,
and diet and exercise and it becomes clear that organ donation
is indeed a unique health issue that requires innovative approaches.
The interventions funded by DOT can be divided into two general
categories: Public education and hospital-based interventions.
Public education projects include:
- Community outreach campaigns, many of which were focused
on a particular minority community
- Mass communication campaigns, virtually all of which
also include supporting grassroots efforts
- Campaigns involving the Division of Motor Vehicles as
the site of organ donation decision-making
- Worksite campaigns
- Professional education for members of occupations that
impact the public’s willingness to donate, including doctors,
lawyers, and funeral directors
- School-based interventions for high schools (including
driver’s education classes) and universities
Hospital-based interventions include:
- The development of in-house coordinator programs
- Transplant coordinator training, including communication
practices during the requesting process, cultural awareness,
and family grief processes
- System-wide hospital interventions to increase acceptance
of organ donation
Summary of Theories Used as Foundation of Interventions
A number of theories have been used as the foundation of DOT-funded
interventions. The most common primary theories include the
theory of reasoned action, theory of planned behavior, the
transtheoretical model (aka “the stages of change”), and the
diffusion of innovations. At their core, most of these theories
posit that behavior change (the willingness to sign a donor
card, tell family members about their donation decision, consent
to donation, or engage in improved potential donor referral
behaviors) is a function of people’s attitudes toward the
behavior, feeling that they are actually able to perform the
behavior, and their perceptions that their social group supports
the behavior.
Overview of the Most Effective Methods/Evaluative
Techniques
The two most solid evaluation techniques used in the grant-funded
programs are:
- Tracking an entire population’s actual behaviors before
and after and intervention (e.g. increases in DMV donor
registries, number of referrals, family consent rates) in
both control (no campaign or program to improve organ donation-related
outcomes) and intervention locations.
- Random sample surveys before and after an intervention,
comparing responses between the group/location that receives
the intervention and another similar group that did not.
It should be noted that the random sample and the number
of people who respond to the survey must be large enough
to make valid comparisons between the two groups.
Summary of Most Important Findings from the DOT Grant
Program: What Works
General findings:
- The involvement of a researcher from the start of project
planning process yields the most valid program evaluation.
- University-based researchers (rather than commercial
research firms) generally have more experience with rigorous
program evaluation research. Academic researchers often
have both more experience with and motivation to write peer-reviewed
publications, which enhances the dissemination of findings
of the DOT program.
- The Principal Investigator or de facto project leader
(sometimes the Principal Researcher or co-Investigator)
should be either local or on-site. Long-distance management
of large project does not allow for adequate oversight of
project activities, often leading to missed deadlines and
a lack of adherence to the original project plan. Having
an experienced leader at the helm of a project also appears
to enhance the success of a project. Determination and problem-solving
skills are a necessity for overcoming obstacles or re-negotiating
access to intervention sites.
- Assembling an external advisory board with representation
from all stakeholders appears to enhance the quality of
the intervention that is ultimately developed for any given
population.
- Although it is easy to believe that improving knowledge
about organ donation (or the grieving process, or brain
death, or the necessity of notifying OPOs of imminent death
of a potential donor) will translate into actual behavior,
it is important to take the intervention one step further.
The targeted population must have this information translated
into very practical, specific strategies that directly address
the exact goal of increasing consent rates, referrals, etc.,
through scripting, communication training (practiced through
role-playing), or by telling people exactly how they can
become organ donors.
Campaigns centering on communities or the workplace:
- Campaigns that include an interactive component with
volunteers or outreach workers trained to address myths
common in each community appear to be more successful.
- Culturally similar outreach workers are an important
element in successful interventions that target minority
communities.
- Using appropriate settings within the community (e.g.
churches and doctors’ offices)—churches helps to overcome
perceptions that donation runs counter to religious beliefs
or that organ donation is part of a corrupt medical system.
It is worth noting that medical mistrust is generally directed
toward large medical institutions or unknown medical professionals
rather than family practitioners.
- Developing partnerships with ethnically-specific community
organizations, and developing a consistent presence at virtually
all major events central to a minority community enhances
the success of minority campaigns.
- Well-placed interactive kiosks offer the opportunity
for people to acquire information about organ donation and,
in the case of some states, the opportunity to sign up to
become a donor.
- DMV-based registries offer an excellent opportunity to
monitor the success of community outreach activities and
media campaigns because they provide immediate evidence
of increased willingness to donate.
- Community outreach campaigns work best when paired with
media campaigns (and vice-versa).
Media campaigns:
- A media campaign alone may not be enough to produce significant
behavioral change.
- Campaigns targeting Hispanics should use Spanish-language
messages with media placement in popular Spanish-language
television programs
- People featured in campaigns should be ethnically/culturally
similar to the targeted population.
- A single, general population campaign is unlikely to
improve minority population outcomes. Parallel campaigns
may be necessary.
School-based settings:
- A comprehensive curriculum needs to be presented to teachers
who are themselves exposed to training/education about organ
donation.
- Gaining the involvement of parents through a student
assignment to conduct “parent interview” helps to expand
the influence of a school-based intervention.
For hospital-based settings:
- In-house coordinators have demonstrated high effectiveness
in improving organ donation-related outcomes (referrals,
cooperation with hospital staff, consent rates) when compared
to traditional, OPO-based coordinators.
- Specific communication training of requestors, health
care providers, and other hospital personnel such as social
workers or chaplains should include scripting and role-playing,
especially with standardized patients, in order to improve
targeted outcomes.
- Culturally-similar requestors have demonstrated a significantly
positive impact on consent rates.
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