Local solutions aim to help Navajo children with asthma

Joncita Todechine, a mother of four who lives on the Navajo Nation, knows all too well what can trigger asthma symptoms in her daughter Ashley. But she didn't always. She recalls a time in 2013, living in Phoenix and attending medical assistant school, when she rushed her then-three-year-old to the Indian Medical Center.

"She was really sick," Todechine said. "She was fevering, coughing, and had shortness of breath. We had no idea what was wrong."

Ashley was admitted to the hospital and stayed for an entire week before the doctors could make a diagnosis of asthma. Now a thriving 13-year-old, Ashley loves gaming, social media, and riding on her hoverboard. These days she lives on the Navajo reservation with her family, who moved there shortly after her mother finished school. For the most part, she keeps her asthma under control by taking medication and doing her best to avoid her asthma triggers.

But that can be challenging. On the Navajo Nation, there are many asthma triggers.

The semi-arid environment is plagued by drought, so on windy days, the gusts kick up ever-present dust and sand into the air. Shuttered coal-fired powerplants dot the landscape and, though they are closed, residual soot still dirties the air. Uranium and other heavy metals contaminate the landscape, and people breathe diesel fumes from the buses that take children to and from school every day. The many dogs and livestock roaming the reservation carry other allergens.

"And that's just the outdoor pollution," said Bruce Bender, Ph.D., professor in the pediatrics department at National Jewish Health in Denver, Colorado. "Seventy percent of households heat with indoor stoves that burn wood or charcoal and can leak a lot of smoke into the air."

Bender would know. He's co-project leader of an NHLBI-funded project focused on reducing health disparities in children living on the Navajo Nation, and he's studied some of the factors that make those disparities worse. He's also looked at the health data overall and found that while Native adults suffer from higher rates of chronic conditions like cardiovascular diseases and diabetes, it's asthma that remains one of the most common chronic diseases in children. Some 18% of children on the Navajo reservation have it, compared to 10.2% of children nationwide.

"Asthma can be incredibly scary for children and their families, especially those who cannot get emergency care easily or quickly," said Michelle Freemer, M.D., M.P.H., director of the asthma program in NHLBI's Division of Lung Diseases.

The Navajo Nation extends across more than 27,000 square miles, making it the largest Native land area in the U.S. "For families of children with asthma, the distances and travel conditions on the reservation may add challenges," said Freemer. "The investigators partnered with the community to find solutions that work where they live, not simply provide asthma care that has been shown to work in other places."

A local solution

Bender and his colleague, Lynn B. Gerald, Ph.D., assistant vice chancellor for population health at the University of Illinois-Chicago, started a large-scale effort to teach educators, children, their families, and local medical providers on the Navajo Nation how to identify an asthma attack and what to do in an emergency. (Gerald had worked previously at the University of Arizona and had gained a wealth of knowledge from the university's Native collaborators.)

The program rolled out in three Arizona communities on the reservation: Tuba City, Chinle, and Fort Defiance. Combined, these towns represent 43% of the Navajo Nation population and are home to more than 8,000 children with asthma.

But before they began, the investigators knew they needed to build relationships with the Navajo people—who refer to themselves as Diné—as the community's prior experiences with non-Native researchers had left them skeptical. The research team began by ensuring the program was tailored to the needs and wishes of the community itself.

"The Navajo Nation human research review board is very careful and thorough," Bender said. "They're protecting their population. We had to earn their trust."

Once the investigators got approval, they hit the ground running, starting in Tuba City. In the hospitals, the research team provided tools for medical professionals, using self-directed online learning and in-person workshops, to increase their use of practices that have been shown to be important in asthma care.

In the schools, the investigators provided education using the American Lung Association's Asthma Basics and Open Airways for Schools training, to teach school staff about asthma, its triggers, and what to do when a child is having an attack and to teach Diné children how to manage their asthma.

Using a "train-the-trainer" model, school staff, community health workers, respiratory therapists, and pharmacists became students and then instructors. This made it possible for the Diné participants to teach additional staff, ensuring the community can sustain the program after the research funding ends.

Still, there was another urgent need that Bender and Gerald realized had not been addressed. "Less than 15% of children with asthma actually have an inhaler at school when they need it," Gerald said. In response, the team helped start a program in two of the three communities that provided stock inhalers to schools for children who need them.

A global threat

After starting the program in Tuba City as planned and spending a year there, the research team moved their focus to Chinle. The goal was to be able to compare how well the program worked in each of the three communities. But a global pandemic had other plans.

"The COVID-19 pandemic hit right in the middle of our time in Chinle," Bender said. "After that, we weren't allowed on the reservation for two years."

While the pandemic changed life for all Americans, it devastated many Native communities. Schools closed and medical clinics focused on emergencies. The research team pivoted: they continued some training virtually and were able to keep learning from families about their needs, especially using the Diné members of the research team who were on the reservation.

Taking stock

Today, despite the challenges of the pandemic, all three communities have completed the original program, and 439 Diné members have been trained to identify asthma and its triggers. Yet the work is far from over. The investigators are analyzing the data they collected.

"Particularly important is returning the results to the community," Gerald said. As soon as they are ready, she said, they will be meeting with the school boards and health boards and joining community meetings to share them.

Freemer said that all the materials the researchers developed through their NHLBI funding are available to the community and have also been shared with those at the Indian Health Service leading the Asthma Control in Tribal Communities program.

"The researchers also took the opportunity to build research capacity," she said. They developed an agreement with Diné College, the only four-year college on the reservation, to provide training through their Summer Research Experience Program. "In that program, students learned about research and were able to readily reach the families who appreciated the interactions with Diné research team members."

Todechine said knowing that her child will be cared for if the worst happens has given her peace of mind. "Now the school systems have their own asthma alert systems that the employees and even the bus drivers take part in," she said. "For me, I feel safer for her to be at school without me."

More information:
Learn more about Asthma in Our Communities with specific resources for American Indians.

Provided by NIH/National Heart, Lung and Blood Institute