View of organ donation shifting in Native culture

PIERRE, S.D. (AP) – Jerry Clown knows that asking for help can be difficult when it means asking someone to make a sacrifice on your behalf.

In Clown's case, that sacrifice is the donation of a healthy kidney.

A member of the Cheyenne River Sioux Tribe, Clown was diagnosed with a rare autoimmune disease in 2001 while living in Eagle Butte. He has been receiving chemotherapy ever since. The disease, known as Wegener's granulomatosis, also triggered the onset of diabetes and caused his kidneys to fail in 2008.

Clown has been on dialysis for about five years now, and is patiently waiting for a kidney on an Avera transplant list.

Despite his condition, he makes a point of avoiding asking his friends and family members to consider being a donor.

“It's really hard for me to ask someone to be a donor, because it's a big sacrifice that they have to give up,” he said.

It's also difficult for Clown and many other Native Americans suffering from kidney disease to ask for help because in Native American circles, donating an organ is often viewed as not only a physical sacrifice, but a spiritual one as well.

EMPHASIZING EDUCATION

Living organ donation in Native American communities is a current topic of research by Nancy Fahrenwald, an associate professor at South Dakota State University's College of Nursing.

Since 2003, Fahrenwald and a team of researchers, tribal elders and health care professionals have been working to bridge the gap between the decline in Native American health and living organ donation by distributing culturally relevant educational materials.

Fahrenwald's latest research will focus on collecting information from Native American dialysis patients on three reservations in South Dakota and providing educational materials about the process, benefits and risks of living kidney donation. She'll also focus on how to have a conversation about organ donation with family members.

“There are many people on dialysis who could still benefit from a transplant who have never talked to their family about considering being a living donor, or even about the possibility of getting a donor,” Fahrenwald said.

Her research will be funded by a five-year grant awarded to Sanford Research by the National Institute on Minority Health and Disparities. The grant will also bring health care professionals and tribal communities closer together with the establishment of a Collaborative Research Center for American Indian Health in Sioux Falls. Fahrenwald will serve as a principal investigator for the center's research on, culturally targeted education on living kidney donation.

TRADITIONAL BELIEFS VS. CURRENT NEEDS

“Culturally, Native Americans believe that when we leave this life and go onto the next, we need to have everything with us,” said Karla Abbott, nursing professor at Augustana College. “But with the increase in Native American health disparities – kidney disease, obesity, renal disease, and hypertension – we're going to need more organ and tissue donators.”

Abbott is a member of the Cheyenne River Sioux, and as a part of Fahrenwald's research team, she has a unique perspective. Abbott has taken special notice of the declining health of her people from the viewpoint of a health care professional and an enrolled tribal member.

More than 112,000 people are on the organ transplant list, and a disproportionate number of those are Native Americans, according to Fahrenwald. Chronic kidney disease is a major health problem in Native American communities, and compared to the county's white population, Native American's are 2.8 times more likely to experience End Stage Renal Disease related to diabetes, according to 2010 U.S. Renal Data.

“Some of this is due to genetics, but a lot of it is change in lifestyle,” Abbott said. “Colonization changed our whole way of life. We were a people that lived by the water. We were very active. But all of those (environmental) changes have really led to our health demise.”

During past research projects, Fahrenwald and her team used traditional storytelling and educational media to present the idea of organ donation to Native American communities in a respectful way. They reached out to native college students with technology-based media and spoke with tribal elders about what kind of messages they wanted to convey.

Fahrenwald consulted traditional healers, who acknowledged that diseases that lead to kidney failure are very real in their communities. The healers concluded that through prayer and ceremony, the spirits of the people who chose to donate or receive an organ could be at rest.

Storytelling was used to encourage Native American people to help each other through the Lakota virtue of generosity. Abbott said that in the old days, one's place in society was not determined by what you owned, but by what you gave away.

“For a successful organ donation, you have to have a good match,” Abbott said. “In order for Native Americans to have successful kidney transplants, you need Native Americans donating organs and getting tested. This isn't just limited to kidneys, but renal disease is our biggest problem bay far.”

These past research projects have helped set up Fahrenwald's new work – talking to dialysis patients to gather their opinions about what needs to be improved in the realm of education and what information they would find useful.

“It takes time to build relationships. I'm not a tribal member, but as a researcher, I need to honor tribal members' time and not conduct research for the sake of research,” Fahrenwald said. “We need to conduct research that makes a difference for the tribe.”

So far it seems that her research has indeed been making a difference. Fahrenwald's previous study with Native American college students resulted in 20 percent of all participants registering as organ donors.

The goal of her research in 2013 will be to bring resources to dialysis centers on reservations that lack adequate patient and family education. Normally patients like Jerry Clown would have to travel to larger cities like Bismarck or Rapid City for that kind of information.

Clown hopes that more education will help people understand the process of being a donor. Until then, he has yet to find a donor match.

“I would really appreciate if a lot of people were donors, because people that are on dialysis, they want to live longer and keep living,” Clown said. “There's hope when someone says, `I would like to get tested, Jerry, what kind of blood type are you?”'

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Information from: Pierre Capital Journal, http://www.capjournal.com