TCU study finds Hispanics simply not exposed to concept of organ donation

Fort Worth, TX

7/29/2009

By: Saddyna Belmashkan
TCU Schieffer School of Journalism

The desire and willingness to learn about organ donation is prevalent in the Hispanic community, although that population is the least likely to donate, a 2009 TCU research study indicates. The goal of the study, “Hispanic Perspectives Regarding Organ Donation”, examined the Hispanic community’s thoughts and feelings about organ donation in order to improve Hispanic donor rates.

Dr. Kathy Baker, associate professor and director of the Harris College Doctor of Nursing Practice program at TCU, originally began the research while a member of faculty at the University of Texas at Arlington. Dr. Baker found it interesting how the state, with its large Hispanic population, had such a low number of Hispanic donors -- and wondered how it could be improved. TCU nursing student Jennifer Zemplinski was able to help Dr. Baker expand the research as part of her senior honors project at TCU’s Harris College of Nursing & Health Sciences.. The UTA Institutional Review Board approved the research and UTA School of Nursing Center for Hispanic Studies in Nursing and Health provided funding.

According to the U.S. Department of Health and Human Services, the number of Hispanics in need of an organ transplant shot up 260 percent from 1993 to 2003 -- and is on the rise. But as of 2007, they only make up 13.7 percent of donors. In addition to the increasing number of Hispanics who need transplants, Dr. Baker said Hispanics generally have increased health risks. Many have diabetes and other chronic conditions that could lead to the need for a transplant, Zemplinski said. Living in the United States and assimilation into the American culture, make it worse. Medical professions recognize lack of walking and consumption of processed foods, among other factors, make for an unhealthy lifestyle in the U.S.

The study involved 12 English and non-English speaking independent Hispanic adults. Eleven participants were female while almost all were of Mexican descent. Dr. Baker said organ donation in Mexico is “essentially non-existent” and not a common option for the typical citizen.

Zemplinski and the research team identified four main factors that influence Hispanics’ decision to donate: awareness, knowledge level, emotions, and values. The most surprising finding for the student researcher was that most of the participants had not considered organ donation before. They stated they had “no opportunity” to discuss the topic.

A majority of participants said they did not know much about organ donation, but more than half of the participants expressed a willingness to donate. Many had made the personal decision to donate, but none had made formal preparations to become a donor such as telling their family.

“To give life to many people, for me, it is something very, very important,” one participant said.

The study found the process of organ retrieval was misunderstood. The literature review by Zemplinski found more than 50 percent of Hispanics believed they receive lower quality health care than non-Hispanic whites. Furthermore, the misconception that physicians will not work as hard to save an organ donor existed.

The main misconception among the participants was that a person had to be healthy to donate an organ. In reality, even most illnesses allow for donation of unaffected organs.

Organ compatibility was another concern. Participants worried if organs would be healthy enough to help the recipient and not cause them any harm. The age of donors was also of concern, but people up to the age of 80 can donate if they meet certain criteria.

Interviews conducted during the study indicated some participants did not understand the concept of brain death. Dr. Baker explained it is difficult for families to understand that an individual is dead and permanently nonresponsive while the heart is beating, even if connected to a life respirator until organs are retrieved.

The study gave the research team significant insight about the thoughts and beliefs of the Hispanic-American culture. Another member of the research team, TCU instructor of Spanish and Hispanic Studies, Dr. David Bedford, helped explain these dominant Hispanic beliefs. Bedford helped the research team to understand how traditional beliefs impact a willingness to donate. Zemplinski said the way Hispanics view death and how they prepare for it influences their views about donation.

In addition to Dr. Baker, TCU nursing student Jennifer Zemplinski, and Dr. Bedford, TCU nursing assistant professor Dr. Susan Rugari was also a member of the research team.

Participants said their fears about organ donation conflicted with early religious teachings, too. Some believe the body is required to be buried in its entirety with all organs in place. Some incorrectly believe the Catholic Church is against organ donation.

Although “mixed feelings” were linked with organ donation, the desire and willingness to learn about organ donation is prevalent in the Hispanic community, the study showed. Hispanic cultural values such as altruism and selflessness were evident in the study. Participants did not want to be wasteful, and therefore, felt it was “good” to donate organs because their organs would be of no use to them after death. As one participant said, “Human beings should not be selfish.”

The literature review completed by Zemplinski as part of her study found knowing a potential donor was a greater predictor for becoming a donor than knowing a transplant recipient. Dr. Baker believes knowing a donor “makes it real” and “personalizes” the affair. She said people become more trustful and learn how beneficial or important it is to donate.

“I wish everybody could donate their organs because I have seen that people really need them, and I hope that people would not be afraid like me,” one participant said.

The study found a reason for Hispanics’ reluctance about organ donation is fear of disfigurement or suffering and concern about body damage. Dr. Baker said fears often come from a lack of education about the organ retrieval process. Zemplinski said the Hispanic population does not understand how the organs will be taken from the body and worry it will painful.

“Viewing the body after death is a very important cultural ritual,” Zemplinski said. “Many do not understand that prosthetic devices will replace those that are removed, making viewing of the body possible.”

Through her literature review, Zemplinski identified societal barriers preventing minorities from becoming organ donors, such as minority groups receive less health education and their primary form of health care is use of the emergency room. Compared to African-Americans and non-Hispanic whites, Hispanics are also the least likely to discuss organ donation with their families. Yet, those who do are 2.8 times more likely to become a donor.

Previous studies suggest Hispanics may be less likely to be donors because they culturally are not comfortable planning for or discussing death. Hispanic families often have an emotional mourning process that may interfere with organ donation.

Previous research finds, as well, that health care workers are less likely to approach the subject with minority families. Zemplinski thought this reluctance might result from not wanting to intrude in the dramatic grieving and language barriers that make conversation difficult.

It is essential to have conversations about organ donation before a crisis occurs, Dr. Baker advised, when a situation may be less stressful.

“The single most important thing is to let the family know you want to be a donor,” she said, and recommended getting the family’s feedback. In Texas, family consent for organ donation supercedes the individual’s directions to his or her physician, or even the individual’s indication of being a donor on a drivers’ license.

In most states, a person can choose to become an organ donor by signing t he back of his or her driver’s license or donor card. A disproportionately high number of Hispanic Americans, however, live in low-income communities and do not have driver’s licenses or are unable to access organ donor cards. Moreover, Zemplinski cited other studies that found donation is a middle-class and upper-middle-class value and the difference in donor rates may arise from socioeconomic and educational inequalities.

Based on the study, awareness and education are key to Hispanic Americans becoming organ donors. Most of the participants wanted the information and the ability to make an informed decision regarding organ donation. Almost all participants held education in high regard and wanted to learn as much as possible about it.

Esperanza Fernandez, 51, of Fort Worth says organ donation is crucial for the survival of certain people and everyone should elect to become a donor. “I will volunteer to,” she said.

Interventions taken from the study to target Hispanic’s about organ donation were provided by participants, who suggested church announcements, programs in the workplace and Spanish television programs.

Zemplinski said they need to be given true and accurate information so they can take the time to consider and make informed choices.

Dr. Baker found Zemplinski’s insight profound and thought it rewarding for an undergraduate to participate in such meticulous, upper-level work.

“We were all so impressed by how quickly Jennifer picked up on qualitative research,” said Dr. Baker, who served as Zemplinski’s supervising professor.

Zemplinski was a winner of the 2009 TCU Harris College Research Symposium for her study on Hispanic perspectives regarding organ donation. She said she was shocked to have won and is still surprised at how important the project is and the impact it can have in the community.

“This topic is very relevant today,” she said.

Both Dr. Baker and Zemplinski hope to raise awareness on the issue through the study's publication. An important area of research for them is a larger study of interventions looking into the best way to educate Hispanics about organ donation. Above all, the women want the findings shared with the Hispanic community.

So far the study’s findings have been displayed at two research symposiums, the Arlington Memorial Hospital and the Sigma Theta Tau Nursing Honors Society Symposium. Since her graduation in May, Zemplinski’s article has been selected for the peer-review TCU Journal of Undergraduate Research and Creativity.

Zemplinski is currently in the nurse residency program at Cook Children's Hospital in Fort Worth. She would like to continue this research in the future.

 

Media contact:
Shawn Kornegay
Associate director of communications
TCU
817-257-5061
s.kornegay@tcu.edu