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Increasing Donation among Hispanics Understanding acculturation level is key to effective outreach

 

By Suzanne Stone
Originally published in the Sep-Oct 2005 issue of the UNOS Update as part 1 of a 2-part series


Educating individuals within the Hispanic community about donation is becoming increasingly important. According to a 2004 U.S. Census Bureau estimate, the Hispanic population in the United States now exceeds 40 million, more than one seventh of the nation's population.

 

The increase in the Hispanic population means more donors are needed who are compatible with the growing number of Hispanics waiting for organs. In 2004, 15 percent of all people in the United States waiting for an organ were Hispanic. But only 12 percent of all transplants performed were for Hispanics. Of the more than 7,000 people who died awaiting a transplant, 13 percent were Hispanic.

 

The importance of acculturation

Effective outreach to Hispanics requires knowledge about individual Hispanic communities. Dahiana De Francisco is vice chair of the Coalition on Donation's Hispanic campaign committee. She's also Hispanic communications coordinator at OneLegacy in southern California, which serves a diverse population of 18.3 million.

 

"Level of acculturation is the key to determining how to reach an audience and effectively communicate about organ donation," De Francisco said.

 

Stacy Underwood, chair of the Coalition's Hispanic campaign committee and community relations supervisor at the Organ Donor Network of Arizona in Phoenix, agrees with De Francisco's assessment of the importance of acculturation. She gave a presentation, "Getting to Know Your Hispanic Community" at the Coalition's spring workshop in Los Angeles.

 

Underwood explained that when discussing donation, presenters must connect emotionally, rationally, intellectually and culturally and that doing so requires a clear understanding of the Hispanic group's level of acculturation.

 

Key factors that influence the level of acculturation include the following:

  • length of residency in United States
  • language use/preference (home and work)
  • educational level
  • generation U.S. born (first-, second-, third-generation, etc.)
  • media preferences (Spanish or English) and
  • values and attitudes

Underwood especially stresses the importance of language.

 

"If people don't interact day-to-day in English, giving them an English brochure or talking to them in English will do absolutely nothing," she said.

 

It seems an obvious point, but the difference may be in "day-to-day," conversational use of English. Educational and promotional materials often use informal idioms and colloquialisms, which can frequently be lost upon a person whose first language isn't English.

 

Hispanics from Mexico

Both De Francisco and Underwood believe that particular sensitivity is required when educating fairly new (i.e., unacculturated) immigrants from Mexico, which is the origin of the majority of the Hispanic population in each of their areas. The two have found a number of common misconceptions within this group.

 

Some of the misconceptions resonate with those held by people in the general population. These include the belief that donation is against their religion (among Hispanics, predominantly Roman Catholic) and that less effort will be made to save a person who has signed a donor card. Some also believe that donation will cause disfigurement and make an open casket painful for family members.

 

Fears of the black market (that organs will be sold illegally) and that recovered organs are put in a "bank" and not used until they're needed are not uncommon. Another misconception is that only wealthy people receive organ transplants, which research has shown is a prevalent belief in the African American community as well.

 

Some also believe that if you "sign something," they will "chase you down to get your organ" or perhaps, for resident aliens, knowing who and where you are increases the likelihood of being found and deported.

 

Perhaps the most unfortunate misconception is that organs are taken while donors are still alive, necessitating that they literally "give their lives" to save someone else.

 

Other Hispanic populations

Karen Garcia, director of community and hospital services at the University of Miami/Life Alliance Organ Recovery Agency in Miami, interacts primarily with Cubans and those from Central and South America.

 

Garcia agrees that knowledge about an audience's level of acculturation is key to effective outreach within the Spanish-speaking community, but she hasn't encountered all of the misconceptions that De Francisco and Underwood have seen.

 

"In my area, church is a big part of Hispanics' lives, and most are aware that the Roman Catholic Church supports organ donation," she said. "And while recent immigrants might have black market fears, the more acculturated Hispanics know that the legal system in America has laws to help prevent this."

 

The different conceptions of organ donation observed by Underwood and De Francisco and those observed by Garcia might be due to the ways Hispanics from various countries view donation. Or — as all three believe — their views might be due to their level of acculturation.

 

"Some communities may find it helpful to collect data to determine if Hispanics of various national origins have different perceptions," said Garcia. "But nationally, we believe that the differences are based primarily on the particular Hispanic population's level of acculturation."

 

Discussing death often taboo

Although Hispanics in Garcia's region may have a better understanding of American culture and the legal system, some attitudes appear universal among Hispanic populations. All three women agree that effective outreach starts with introducing the subject and encouraging individuals to discuss it with their families.

 

"For most Hispanics — particularly those who are less acculturated — talking about death is taboo," Garcia said.

 

"It's really talking about anything bad that is discouraged," Underwood added. "Many believe that talking about something gives life to it."

 

Because of this significant hurdle, donation outreach first needs to help individuals become comfortable discussing the subject. Garcia has found an effective and simple manner to do this is to introduce organ donation by first talking about disease prevention and what would happen if they or a loved one ever needed an organ.

 

"Describe why someone might need a new heart or kidney. Talk about what a person's life is like when they are that ill," Garcia explained, "and what can happen if they don't receive the organ they need.

 

Bring up the question of where the organs for people in need would come from," she continued. "Then end with the statement that 'the organs come from people who have agreed to be donors.'"

 

Once the possibility of being a donor is fully communicated, one of the more difficult concepts to explain is that of brain death.

 

"Most Hispanics believe that death occurs when the heart stops beating. So if a person's heart is kept beating artificially, it is hard to understand that the person is brain dead and has no chance of recovery," Garcia said.

 

"Movies about people in comas recovering contribute to the misunderstanding. It's vital to explain the difference between 'brain death' and 'coma,'" De Francisco added.

 

>>Read Part 2 - Overcoming Misconceptions - Spanish media and the power of testimonials can help


About the Author

Suzanne Stone is a free-lance writer/editor in Carmichael, Calif. She writes frequently about health education and medical issues, including donation and transplantation. She can be reached at ssfreelance@sbcglobal.net.