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.”