Cultural health care
Strokes threaten keepers of Oneida traditions. Now tribe is working with UW to raise awareness of healthy foods.
Sitting outside at the Oneida Nation's organic farm, a barn cat curled in her lap as harvested white corn dried in the sun, Marlene Summers found herself transported back to her childhood.
At her parents' home, the family would cultivate heirloom crops and make bread – an Oneida staple called kanastóhale (guhn-ah-STOH'-hall) – from white corn.
Now, at a special health education event on the farm, she watched as Chef Arlie Doxtator, her nephew, cooked roasted corn mush in a clay pot and taught attendees about the benefits of traditional foods. Joining Doxtator remotely was Dr. Robert Dempsey, a University of Wisconsin-Madison researcher and neurosurgeon.
“There are a lot of Indigenous foods that we have, that they say (we should) go back to,” Summers said.
The event at the farm, in Oneida called Tsyunhèhkwa (joon-HEY'-kwa), was designed to elicit this response: to raise awareness, even a nostalgia, for the healthy, traditional foods that have long sustained the Oneida people. It was also held to teach attendees, many of them community elders, about one of the community's biggest health concerns: stroke.
According to the Great Lakes InterTribal Epidemiology Center, which collects health data from member tribes in Wisconsin, Minnesota and Michigan, stroke is the 7th leading cause of death among Native Americans in the region.
Many of the risk factors for stroke – which include heart disease and diabetes – affect Native people at disproportionately higher rates compared with white people and the general popula
tion. Native people nationwide are three times more likely to have diabetes and 50% more likely to have heart disease than white people, according to the American Heart Association.
Summers is one of the faces behind those statistics. Last year, the 76-yearold learned her diabetes put her at high risk of having a stroke.
Summers had her stroke risk evaluated because of an ongoing research project run by UW-Madison’s School of Medicine and Public Health in partnership with the Oneida Nation’s Comprehensive Health Division. Over two years, researchers have three goals: learn how to better measure stroke risk, find whether health coaching helps lower that risk and provide culturally tailored education about stroke prevention.
For Native communities, stroke is more than an individual health problem.
It threatens their very culture, as elders, whose stroke risk rises with age, are keepers of their language, traditions and culture. Elders and health experts are not only worried about the impact of full-blown strokes, but “silent strokes,” which do not have obvious symptoms, but cause brain-damaging effects that over time add up and can cause memory loss and early cognitive decline.
In the past, Summers admitted, she’s worried about what would happen if she had a stroke.
“That crosses your mind every now and then when you’re my age and you have the illnesses that I have,” she said.
Now, as a participant in the research study, she has weekly access to an Oneida Nation health coach who helps her get more activity in her day, eat better and follow a health improvement plan. Far from feeling afraid, Summers says she feels empowered by the knowledge she’s gained.
“I just feel like going through this testing and everything, it has relieved so much stress,” she said.
Native people at high-risk of stroke
Data on stroke rates in Native populations has long been lacking, for many reasons.
Dr. Dinesh Jillella, a vascular neurologist at Emory Healthcare in Atlanta who is not affiliated with the UW study, said the effort to collect data on stroke risk factors and what interventions work has a lot of potential. Jillella has studied stroke risk factors in Native Americans and treated many Native patients while practicing in New Mexico earlier in his career.
“The data is very scarce with regard to Native Americans,” he said. “They are a small subset of the population, but then an important subset that we need to make sure we take appropriate care of.”
It’s hard to nail down one specific rate of stroke in Native populations because of a huge range of issues, from a lack of data, to racial misclassification of patients, to the fact that Native people are not monolithic.
But one thing is clear, Jillella said: High rates of chronic health issues like heart disease, diabetes and substance abuse logically raise major concerns about how disproportionately strokes affect Native communities.
This high level of risk has not been lost on the Oneida Nation Commission on Aging, members of which initially reached out to UW-Madison experts about conducting the study.
“In many research projects across the country, Native people aren’t even considered,” said Lois Strong, the former coordinator of the commission.
Dempsey is the leader of the study and chair of the neurosurgery department at UW-Madison. He is the founder and co-lead of the university’s Comprehensive Stroke Program, which seeks to find better prevention, treatment and possibly even ways to repair the injured brain after stroke.
Preliminary data from the Oneida study jarred the doctor.
“You can read about it all you want, but when you see 80% of the patients you see are in danger, you really know you’re at the right place,” Dempsey said. “I’m glad we’re here. “
One-on-one support gives elders control
There are 120 participants in the study.
Summers and the other participants started out by being evaluated for their stroke risk. The health evaluation included blood work, cognitive testing, a health and family history and an ultrasound of their carotid arteries, which deliver blood to the brain and head. The ultrasounds showed if the structure of the arteries was weakened or if they had plaque buildup. Either could cause a stroke.
Twenty had a low risk of stroke, and they are in the study’s control group. Of the 100 participants at high risk for a stroke, 50 were randomly assigned a health coach for the two-year duration of the study. The remaining 50 were not given a health coach, though all patients have access to the study’s doctors for treatment and health education, and other community health events like the one at the organic farm.
Researchers will measure if health coaching helps lower stroke risk factors.
“One of the worst things a physician can do is to tell a patient to lose weight, stop smoking, and then walk out of the room, and expect something to happen,” said Dempsey, who has worked on health education efforts with Indigenous communities around the world.
The study is part of the tribe’s broader work providing health care rooted in its culture. The tribe has long had programs in place to encourage exercise and healthy habits among its members. They include group exercise days and recently, lessons on traditional cooking.
These types of events are especially important at a time when the pandemic has increased isolation and disrupted people’s routines.
Amanda Riesenberg is the stroke prevention wellness coach for the Oneida Nation.
She works weekly with each of the 50 study participants in the high-risk-plus-coaching group, sharing healthy recipes, encouraging them to replace their chicken broth with a low sodium version, telling them to drink more water, talking through sleep and stress issues, teaching exercises and connecting them to specialized health care.
Anecdotally, she’s seen several of the patients she works with improve their health by losing weight, getting their blood sugar levels under control or lowering their cholesterol.
“One question I ask people when we’re working on wellness visions is: ‘What makes you thrive? What makes you feel like you?’” she said. “‘What can
we do to get you to that point?’”
‘A good mind. A good heart. A strong Fire.’
For Bob Brown, 65, the time spent around his elders when he was a teen proved to be pivotal in his life.
“You always have that perceived notion that they’re always going to be around,” said Brown, cultural advisor at the Oneida Nation. “But then all of a sudden, from one year to the next, you’re seeing they’re not there anymore.”
Brown played hockey, volleyball, basketball and lacrosse – until injuries made it harder for him to stay active. He got diagnosed with diabetes, and both his feet are numb from the neuropathy caused by it. Then, a couple of years ago, he had a heart attack.
His role as an elder suddenly came into sharper focus, like an epiphany, he said.
Brown is the person who goes to Oneida funerals to talk families through their grief. He is a keeper of the tribe’s language, traditions and its history, all of which he is working to pass down to young tribal members he thinks of as his “apprentices.”
“I had the heart attack, but now, what if I had that stroke?” Brown said. “I like to keep a low profile, I’m not boastful. I don’t want to be boastful. But every aspect of who we are, as Oneida people, that’s what I know.”
Brown is not a part of the UW-Madison study, but he’s working in his own way to improve his health and encourage his community to do the same.
The impact that stroke has on the tribe’s elders can be easy to overlook because heart disease and cancer are by far the leading causes of death among Native people in the region.
But doctors remind anyone who will listen that many of these health issues are deeply interconnected and worth addressing – especially when the toll of stroke can be under-appreciated.
One type of stroke, colloquially called mini-strokes, are of particular concern.
There are two categories of ministrokes or “silent strokes,” Emory’s Jillella said. One is called a transient ischemic attack, or TIA. It is a stroke that only lasts a few minutes, but is often a harbinger of a larger one to come. The second is called small vessel disease, which over time causes small lesions throughout the brain because of a lack of blood flow.
Dempsey said mini-strokes are not as well recognized as large ones that cause blindness, paralysis and speech impediments, but should be just as much a concern.
“When you see this premature loss of cognition – exactly what the elders told us they were worried about – you begin to see the true impact of stroke, which is much more devastating than just those people that can’t walk, and probably much sadder,” Dempsey said. “Because that’s not only their culture, their language, but that’s how they know their grandchildren.”
Brown, for his part, has made it a point to eat better and take his doctors’ advice. For the Oneida, he said, a holistic approach to health is a key value, cemented in one of their mottos: “A good mind. A good heart. A strong Fire.”
Lessons to pass into the future
The Oneida stroke study has the potential to help more than just the community’s elders. Researchers hope to give other tribal communities struggling with stroke a blueprint to replicate and even are providing training opportunities for Native medical students.
In many Native communities, there is a history of researchers dropping into tribal communities to collect data and then leaving, said Melissa Metoxen, a member of the Oneida Nation and assistant director of the Native American Center for Health Professions at UW. This “helicopter research” has led to a general distrust of academic institutions and scientific research.
Metoxen said this study is different in that it is a two-way partnership between the tribe and the university.
Students from the center say working on the project has highlighted the importance of listening to patients and integrating their beliefs and traditions into their treatment.
“At the end of the day, it makes people more motivated. It shows them the provider really cares and understands their differences,” said Brady Kerwin, a second-year medical student.
Metoxen said it’s easier to establish trust between Native patients and their doctors when they have a shared background. Patients are more likely to open up and share freely.
For medical student Jacob Jones, a member of the Choctaw Nation of Oklahoma, the opportunity to work with Native people was the reason he signed up to help on the study.
The son of a tribal health care worker, Jones didn’t always enjoy doing research. But the UW study showed him that research can be a powerful tool, when done with plenty of community involvement.
“Including the Nation and the people as the primary people in charge of their health is really super empowering,” Jones said. “We shouldn’t go into a place assuming a lack of health. We should see what they have, what they’re doing well right now and improve upon what they already have.”
Over the course of the study, he has seen study participants become advocates for their own health.
That is the case for Summers, the 76year-old participant.
“I can’t stress enough how it has helped me,” she said. “A year ago I was a do-nothing. Now I’m back to exercising.”