New center to include research on culturally targeted living kidney donation education
South Dakota State University said it plans to use its portion of a $13.5 million grant from the National Institute on Minority Health and Disparities to establish the Collaborative Research Center for American Indian Health in Sioux Falls. The new center will be led by Amy Elliott, director of the Center for Health Outcomes and Prevention Research at Sanford Research/USD.
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 of kidney disease is 1 in 5. Native Americans also have the highest rate of diabetes in the world. The rate of end-stage renal disease among Native Americans with diabetes is six times higher than among non-Native Americans with diabetes, according to dialysis provider DaVita Inc.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.
Image: Nancy Fahrenwald
Kidney donation education
Initially, the center's research component will target three areas: pediatric asthma, emergency room usage and kidney disease Nancy Fahrenwald, associate professor at South Dakota State University's College of Nursing will serve as principal investigator for the research titled, "Culturally Targeted Education on Living Kidney Donation," with $1.32 million in funding for the next five years.
"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," said Elliot. "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.
Learning the culture to spread the message of benefits of kidney donation
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.
Dealing with kidney disease early
"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 said she 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. There is a lifetime of work to be done for all of us, but this is one piece of the puzzle."