Challenging Dogma

Monday, May 7, 2012

Recruiting Adolescents in the Fight to Improve Organ Donation – Jody Grundman

            Transplantation of solid organs is an accepted therapy for many debilitating and life-threatening illnesses (1). A single donor gives on average over 30 additional life-years to patients awaiting transplantation (2), and contributes to a significantly improved quality of life. The number of organs procured for transplantation in the United States is insufficient to meet needs (1). It is estimated that only 42% of eligible donors actually donate their organs for a variety of reasons, but primarily due to lack of consent (2). The fact that eligible donors do not consent to organ donation translates into over 250 000 life-years lost annually across the country (2).
The majority of potential donors are young individuals involved in sudden and violent trauma. In 2004, the United Network of Organ Sharing (UNOS) reported that donation from people age 50 and older has increased dramatically, while donation from individuals under 34 has decreased (3). According to the Organ Procurement Transplantation Network and Scientific Registry of Transplant Recipients (OPTN/SRTR) Annual Report, only 405 of the 8 022 (5%) deceased organ donors in 2009 were 12-17 (4).  An intervention that increases organ donation among adolescents can have a huge impact on the organ donor insufficiency problem. In this paper I will discuss an intervention, provide arguments as to why it is not effective, and propose more effective solutions.
The Seattle Public High School Health Education Program
            One intervention that aims to increase organ donation among adolescents is a health education program in a Seattle public high school. The 40-minute program begins with a project coordinator from a community health promotion agency introducing the topic. After the introduction, a transplant surgeon talks to the class for 10 minutes. The surgeon explains systematic issues, including how the waiting list is composed, the nationalized computer information and allocation system, and the donor-recipient matching process. The surgeon also talks about facts relating to donation, such as the disparities in waiting times, the prevalence of diseases leading to transplantation, success rates of transplantation for different organs, and the current donor shortage (5).
After the surgeon is finished, 2 young transplant recipients talk about their personal experiences for 10 minutes each. Every segment is followed by a question and answer period. The program was found to significantly improve knowledge about organ donation among participants, and those with higher knowledge were significantly more likely to have positive opinions about donation (5). Nothing was reported about the intervention’s effect on donor registration behavior, which could be a possible flaw of the campaign.
Criticism of Intervention 1: The Intervention Does Not Work in Accordance with Current Legislation
According to the Kaiser Family Foundation, the adjusted rate of teen deaths (15-19) in the state of Washington in 2008 was 49 per 100 000 teenagers (6), while the overall rate of deaths in the population was 723.7 per 100 000 (7). Teenage mortality contributes approximately 6.8% of the state’s overall mortality rate, and in terms of potential organ donors, this is a significant proportion. Adolescents can have a huge impact on the organ donor shortage, but current state laws hinder this group’s potential.
            An intervention that is aimed at high school students in order to motivate donor behavior is extremely inefficient under current legislation. The intervention assumes that if an adolescent is educated about organ donation, his improved knowledge will cause him to register as an organ donor. Even if this assumption is valid, a minor registering as an organ donor in Washington does not guarantee that his decision will be honored. The law stipulates that you have to be at least 15½ years old in order to choose to register as an organ donor and get the donor symbol on your intermediate driver’s license or ID card. Until you are 18 or emancipated, your parent or guardian has the right to revoke your consent at the time of donation (8). Since the Washington legislation does not give minor consent legal authority without a parent or guardian’s permission, the intervention has little chance of being effective in increasing adolescent organ donation. Even if the intervention is successful in increasing organ donor registration at the time of licensing, the parent or guardian can reverse the progress of the intervention under current state law.
Many courts have recognized that so-called “mature minors” have the right to make decisions about their own medical treatment. The Supreme Court has held that mature minors have the right to decide for themselves whether to have an abortion. States cannot require a minor to obtain parental consent before obtaining an abortion if “she is mature enough and well enough informed to make her abortion decision…independently” (9). From the Supreme Court’s ruling, it is clear that the autonomy of a minor’s decisions is a very complicated subject that varies based on the contextual circumstances of the decision. Adolescents who have participated in an education program carried out in public school should be considered mature and well enough informed to make his decision about donation. There is tremendous pressure on medical and government policymakers to reform the present organ transplantation system to be both more effective and more fair in saving lives (10). A modification of how Washington organ donation laws deal with minor consent is imperative in order to increase organ donation among adolescents.
Criticism of Intervention 2: The Messenger Does Not Match the Target Audience
            A messenger of a behavior change campaign is a model appearing in the message that delivers information, demonstrates behavior, or provides a testimonial. A messenger can be important for attracting attention, personalizing abstract concepts by modeling actions and consequences, bolstering belief formation due to source credibility, and facilitating retention due to memorability (11). The Seattle High School Health Educational Program uses a community health agency employee, transplant surgeon, and transplant recipients as the communicators. Although these individuals are credible and knowledgeable, they are not the most effective message sources for an adolescent campaign.
            Messenger credibility is an important quality to consider. Perception of credibility might be a critical determinant of the efficacy of health-promotion initiatives (12). A messenger that is knowledgeable about the facts may not be the most effective person to motivate a behavior change among adolescents (13). Healthcare experts are certainly credible messengers, but this is not the most important characteristic for an adolescent audience. The extent to which a teen identifies with both the way the message is presented as well as with the messenger may affect its impact on behavioral change (14). These messengers are knowledgeable and credible, but students would probably have a difficult time relating to adult experts.
Inappropriate messenger is a common flaw in traditional health education campaigns (14). The intervention was successful at improving knowledge and attitude toward organ donation. These results demonstrate that the credible messengers were able to impart knowledge and influence attitude successfully, but their influence on behavior is unknown. Prioritizing credibility over similarity was a poor choice for a campaign aiming to motivate a behavioral change. The intervention did not focus on messenger attributes that have been proven to be affective with teenage audiences.
The messenger must be someone that teens can readily identify with (14). The professional adults are non-relatable for adolescents, so it is unlikely that their messages would prompt a behavioral change. The transplant recipients are young, but similarity in age does not outweigh the obvious differences between the messengers and the audience. The intervention actually highlights the differences between the messenger and the audience that perhaps a teenager would not have otherwise noticed. The transplant recipients appear to look similar and relatable to high school students, however after they share their organ donation experiences they will no longer seem comparable. Healthy high school students will not understand the challenges associated with their illnesses before they received a transplant. The intervention would probably be much more successful at motivating organ donor registration if the messengers were more relatable and similar to the audience.
Criticism of Intervention 3: The Intervention is Aimed At Changing Individual Knowledge and Attitude
            The decision to donate your organs is more of a joint decision than an individual choice. Making the decision to sign a donor card and actually donating are not equivalent. Organ donor registration is the targeted behavioral change of the program, but it is a vague promise whose fulfillment is usually in the distant future (3). This is true for all donors, regardless of age. The lag that exists between the decision and action of donation is even more complicated for minors. Adult consent is an extra element that must be satisfied in order to complete the behavior. The program’s complete disregard for motivating adult consent hinders any progress that the intervention has on the potential adolescent donor.
If the patient’s intentions are unknown, the donation decision is typically made at the time of enormous grief. Several factors shape whether consent is given (15), and these can be different than what might be considered at a time when the family is not mourning the loss of a loved one. Families are typically unprepared for such overwhelming circumstances, and they have frequently never before considered the decision whether to donate (3). Making such an important decision at a time that the family is in shock and pain jeopardizes the probability that donation will be thought about in a composed and rational context. An intervention targeted at the individual does not provide for an adolescent to make his decision known to his parent or guardian. Presence of an organ donor card lets family know the patient’s intentions, but it is not enough to secure permission to proceed with organ donation (15). If the family only finds out the patient’s intentions at the time he is declared brain dead, it is possible that the sorrow and sadness will cause the family to disregard the patient’s wishes.
            Family that does not know a lot about organ donation is even more unlikely to respect the wishes of the minor. Donation knowledge seems to be acquired typically through nonmedical sources. As a result, an abundance of misconception and fear is association with organ donation. It is common for individuals who have not been properly educated about organ donation to believe that organs will be removed before the patient is dead, death will be declared too soon, or that donors are maintained on life support unnecessarily long for the purpose of removing organs (16). The current intervention abolishes these misconceptions among the adolescents, but they persist in the majority of people whose only exposure to organ donation knowledge is sensationalized media.
Organ donation is not a common topic of discussion in today’s society. Many people believe that discussing sudden, accidental, or unexpected death may jinx that person (17). Under current social norms it is unlikely that adolescents will discuss what they have learned from the intervention with their family or friends outside of school. A campaign that targets individuals is inefficient for obtaining the family support needed to ensure that the donor’s intended behavior will actually occur.
New Intervention Proposal: Use the Media to Communicate Effectively, Raise Awareness, and Shift Social Norms
            An intervention that aims to increase adolescent organ donation must accomplish several objectives in order to be successful. A new intervention that makes use of the media to communicate knowledge and positive attitudes will reach a large audience, influence social norms, and make organ donation a more normative aspect of daily life. The intervention will use adolescent television programming to convey accurate information about organ donation and the consent process. Because death and freak accidents are a common feature of popular young adult dramas, there is ample opportunity to incorporate organ donor content into adolescent popular culture.
Adolescent television characters will discuss organ donation with family and friends around the time that they are learning to drive or preparing to get their license. In addition to introducing discussion about organ donor registration, characters will model organ donor registration at the time they receive their temporary license, and families of a brain-dead character will decide to donate the available organs.
            After the episode has aired, a celebrity from the show that is popular among adolescents will talk directly to the viewer about organ donation and what to do next. The celebrity will talk about the current organ donor shortage, legislation regarding minor consent, and the urgent need to change the state laws. The celebrity will explain the campaign’s effort to create a new law that requires the parent or guardian to authorize the adolescent’s consent at the time that they register as an organ donor. The viewer will be directed to a website to get more information about organ donation, how to join the registry, and how to sign the petition to get the law changed.
A press release that highlights the increase in discussion about organ donation in young adult entertainment will be distributed to all state press outlets. The media attention will attract more public attention and rally the necessary support in order to pressure a legislative change and improve organ donor registration.
Defense of New Intervention 1: Public Awareness Will Be the Force for a Legislative Change
            Legislation should work in conjunction with health campaigns to improve outcomes, instead of serving as an obstacle on the path to improving the organ donor shortage. The laws must be changed in order to ensure that a minor’s wishes to be a donor have a better chance of being respected at the time of the decision. The intervention would raise public awareness and interest in the current state organ donation legislation.
Agenda Setting Theory explains the influence that the media has on public opinion and politics. The theory proposes that increased media attention is believed to lead to increased community concern for a particular issue.  The media does not mirror public priorities; they shape them (18). Agenda setting can be used to explain how political actors determine their priorities, give attention to or ignore issues, and do, or do not, make decisions concerning these topics (19). The intervention would make organ donation more dominant on the media’s agenda, and then on the political agenda. Adolescents who probably had no idea that their donation decision could be reversed by a parent or guardian would now be fully enlightened. The increased media attention and improved public support will in turn bring organ donation onto the political agenda of Washington legislatures, which will help to ensure that the laws will be altered.  
Psychological Reactance Theory also explains how adolescents will become motivated and passionate about the legislative issue. Psychological reactance theory explains how individuals tend to become psychologically aroused when their behavioral freedoms are threatened by overtly persuasive messages. The resulting reactance motivates attempts to restore the threatened freedoms (20). When minors realize that their decision to register as an organ donor has no legal autonomy, they will feel that the current laws threaten their freedoms. The information at the end of the television program provides adolescents with the resources in order to attempt to restore the threatened freedoms by signing a petition to get the law changed. 
            Advocating to give adolescents full autonomy over their organ donation decision may be controversial, and thus difficult to accomplish. In order to gain sufficient support for change, the intervention must unify people, rather than divide them on the issue. Donation of minors’ organs should not be presumed, in order to limit state intrusion at a time of parental grief (10). A law that would require the parent or guardian to make a decision regarding the minor’s organ donation decision at the time that the individual decides to register would be extremely successful in increasing donation. The law would work in accordance with the intervention, as it would enable family discussion about organ donation at the time that the adolescent is making the decision.
Defense of New Intervention 2: Celebrities are Effective Messengers for Adolescents
            Celebrities will be much more effective messengers for an adolescent health intervention. According to a recent national survey, 8-18 year olds spend on average 6-7 hours a day with some form of mass media (21).  It has also been found that public knowledge of a celebrity who endorses a health message is expected to influence the effects of the message on the intended audience (22). Spreading the intervention’s message through the media will ensure that adolescents will be exposed to the campaign regularly and repeatedly.
One of the effects of so much media use is the increasing importance that figures from the media and popular culture have in young people’s lives (23). Social Cognitive Theory describes the mechanism behind this phenomenon. The theory explains that people learn by observing others. Observation can take place directly in real life, but it can also occur vicariously (24). Adolescents can watch behavior on television and then apply this behavior in their own lives in a similar situation. When an adolescent gets their temporary license, they will remember the behavior that they saw on television by a celebrity, and this will motivate them to register as an organ donor. Celebrities provide cultural material for developing gender role identity, forming values and beliefs, and learning sexual and romantic scripts. Attachments to media figures in general are referred to as para social relationships, where, although all the interaction is one-way, the person feels as if they know the figure as a friend or colleague (23). This type of relationship perceived by the viewer supports social cognitive theory; an adolescent who perceives a celebrity as a peer will be more likely to want to apply observed behavior in their own lives.
             Another way that celebrities are a powerful message source for adolescents is because of the similarities that young adults perceive to exist. Research has shown that similarity between the message source and receiver increases liking, and liking another person increases the tendency to like objects that the other person likes. Similarity also enhances the communicator’s credibility, which further increases the force towards compliance. Attraction to the communicator is another well-known force towards compliance (25). Celebrities considered to be attractive role models by the public are expected to have the strongest influence on public attitudes and behavior (22).
Celebrities are the ideal messengers for adolescent campaigns, as they are recognizable, attractive, likeable, and perceived to be similar to young adults. Using a messenger that is well-liked and popular among adolescents will be much more influential on producing behavioral changes than messengers who are credible but un-relatable. All of these characteristics combined will make it more probable that adolescents will get involved in the legislation fight and register as an organ donor.
Defense of New Intervention 3: A Group Level Model Will Facilitate Behavioral Change
            The intervention must make organ donation behavior and discussion a more regular component of society. A group level model will be more likely to shift social norms and make organ donation a more prominent topic and behavior. According to the Social Norms Theory, individuals use their perceptions of peer norms as the standard against which to compare their own behaviors. People measure the appropriateness of their behavior by how far away they are from the norm (26). The campaign will create the perception that deciding to register as an organ donor at the time that you receive your temporary license is standard adolescent behavior. Shifting social norms will also help to gain support for creating new legislation that increases adolescent organ donation.
 A group level model that alters social norms will reduce the stigma associated with discussing organ donation, and make the issue a more ordinary topic of conversation. If organ donation becomes more popular in television, media, and politics, the negative misconceptions about donation will be replaced by the knowledge portrayed in the campaign. People often discuss current events, what they see on television, or read in the paper. Once organ donation enters the media, popular culture, and politics, discussion about donation will improve dramatically.
            Increased discussion will improve the likelihood that parents and guardians will follow an adolescent’s choice to be an organ donor. Conversation makes it much easier for the family to make the decision at the time of death, as it gives the family assurance and confidence in their choice (27). Family members agree to organ donation in well over 90% of the cases where family members have some indication of the wishes of the person who has died. Without communication, even a signed donation card may prove ineffective in reducing the need for organs available for transplantation (17). A group level model that targets everyone and not just the donor will be more successful at increasing adolescent organ donation.
            Improving organ donation rates is a very difficult issue to address. Many states have established easier ways to recruit and register new donors, but the waiting list for organs grows longer every day (10). Adolescents represent a large potential organ donor pool that has yet to be successfully targeted. An intervention that aims to increase organ donor registration amongst adolescents must also focus efforts on securing parental and guardian support. A campaign that aims to improve organ donation among adolescents must use effective messengers, promote knowledge and awareness on a group level, and alter social norms. This intervention will improve adolescent organ donor registration and ensure that their intended behavior is ultimately followed.

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