Study hopes to improve the outlook for native Americans with kidney disease

Americans have a 1 in 10 chance of suffering from kidney disease, according to statistics from the Centers for Disease Control and Prevention. For Native Americans, the risk doubles.

More than 112,000 people are on the organ transplant list, and a disproportionate number of those are Native Americans, according to Nancy Fahrenwald, associate professor at South Dakota State University's College of Nursing.

But with SDSU's share of a $13.5 million grant from the National Institute on Minority Health and Disparities awarded to Sanford Research and its partners, Fahrenwald hopes to improve the outlook for native people and their families facing kidney disease.

The five-year grant brings together the tribal communities and health care professionals through the establishment of a Collaborative Research Center for American Indian Health in Sioux Falls under the leadership of Amy Elliott, director of the Center for Health Outcomes and Prevention Research at Sanford Research/USD.

This center will then work with tribal leaders to educate and engage the communities in ways that will improve health care for American Indians in South Dakota, North Dakota and Minnesota.

Initially, the center's research component will target three areas: pediatric asthma, emergency room usage and kidney disease. Fahrenwald serves as principal investigator for the research component titled, "Culturally Targeted Education on Living Kidney Donation," with $1.32 million in funding for the next five years.

She explained that the best practice for kidney donation involves getting evaluated when kidneys begin to fail, and being placed on the transplant list or identifying a living donor.

"This is the best scientifically for anyone, but for this minority population, there are many barriers to having those conversations, to getting evaluated for transplant before they are on dialysis," Fahrenwald explained.

Elliott, who will oversee the new collaborative research center, said, "Fahrenwald's project will find the best ways to help open up the lines of communications for patients and families to talk about the options that are available to them. And those options can be life-saving."

Fahrenwald's work in South Dakota will take place with the Oglala Sioux at Pine Ridge, the Cheyenne River Sioux, and the Rosebud Sioux tribes. Based on past research among these populations, she said, "Everybody knows somebody who has renal failure because of diabetes, who needs a kidney, got a kidney, or died while waiting for a kidney," Fahrenwald said.

As a nurse scientist whose expertise is in behavioral research, Fahrenwald knows the theories but is still learning the culture. "I'm not native," she said, and input from tribal elders will shape how these messages are worded and shared.

Over the last 10 years, Fahrenwald has been co-leader of teams on two research projects aimed at American Indians in Pine Ridge, Rosebud, Cheyenne River and Sisseton-Wahpeton encouraging organ and tissue donation through posters, brochures and videos. She has just received funding for a third project focusing on kidney donation with the Hennepin County Medical Center targeting Minnesota tribes.

To do this, Fahrenwald consulted traditional healers and then worked with an American Indian advertising firm to craft messages that motivate natives to check the donor box on their driver's license applications.

The subsequent campaign carried a similar message to younger adults at tribal colleges in South Dakota, North Dakota, Minnesota and Montana using a website and videos featuring kidney dialysis patients. Fahrenwald found interpersonal communication through the oral tradition of storytelling to be the most effective in motivating the people to become donors.

Karla Abbott, who served on the advisory board for two of Fahrenwald's projects, said, "This was something that we always discussed that could occur, not waiting until patients are in dire straits." Abbot is a member of the Cheyenne River Lakota Sioux tribe and a nursing instructor at Augustana College in Sioux Falls.

As a public health nurse, Abbott has approached Native American families facing a loved one's death about the possibility of organ donation. She agreed with Fahrenwald that hearing the stories of people on the reservation living with kidney disease can help her people reconcile their beliefs about keeping the body intact for the afterlife with their culture's emphasis on generosity.

"We can't just not talk about it," Abbott said. From a health care perspective, it is more cost effective to deal with kidney disease and its challenges early on, rather than to wait until the condition worsens to take action.

Fahrenwald has high hopes for what this new center can accomplish. It provides a collaboration point, Fahrenwald said, "where we can be assured that navigating tribal approval can be done more easily and in culturally sensitive and appropriate ways."

"Health disparities are not acceptable, but getting at the root of them and resolving them is not a challenge that will be overcome in a short period of time," Fahrenwald said. "There is a lifetime of work to be done for all of us, but this is one piece of the puzzle."