Epidemiologist helps bridge asthma care knowledge gap for Spanish-speaking parents

Twenty-six years ago, Luz Nieves faced a terrifying situation. During her daughter Valeria's first birthday, the baby experienced an asthma attack. Soon after, Valeria was diagnosed with asthma. Even with a nursing degree and master's degree in epidemiology, living in Puerto Rico, Nieves found that information and education about caring for a child with asthma were lacking.

A few years later, Nieves left Puerto Rico to pursue a doctorate in public health and epidemiology. To graduate, Nieves had to complete a dissertation, and the topic she chose was near and dear to her – asthma in Puerto Rican children and how parents' beliefs affect treatment adherence.

Nieves is a nurse with a master's and doctoral degree in public health and epidemiology. She serves as a health coordinator for Federal Services' Centers for Disease Control and Prevention CDC-Info call center and an epidemiology professor at AGM (Ana G. Mendez) University.

Why did you choose that topic for your dissertation?

When my daughter was diagnosed with asthma, I struggled to get the proper care, asthma education, and specialized doctors to take care of her. She suffered a lot. And that's why I chose that topic for my dissertation. I was a parent of an asthmatic child for so many years. Thankfully, she's doing a lot better now.

How has your research benefited others?

One of my proctors recommended and supported that I wanted to help other Spanish-speaking parents in Latin America because of the lack of education. I created a Facebook page, "Padres de Niños con Asma," in 2020 to share my knowledge about asthma with the Hispanic parent population.

Having a child with asthma can be a life-or-death situation for these kids. If parents don't have access to asthma-related information, they won't know how to deal with an asthma attack. It's a chronic condition. Many pediatric asthma fatalities are related to parents not knowing how to care for their children during an attack – before they take them to the emergency department. It is the same as if you have a diabetic child; you need to know about the medications and how to manage whether their blood sugar is low or too high.

How has the interaction on the Facebook page been since you created it?

We have about 1,100 followers on the page now. Parents are welcome to share their own experiences, and I share evidence-based information from the U.S. I look for information written in Spanish or translate it for parents.

What are some common topics or questions on the Facebook page?

When parents join the page, they often need help figuring out where to start. My first recommendation is to find their child a doctor – a pediatrician, a pulmonologist, and an allergy doctor to get an asthma treatment action plan in place.

We teach how to recognize an asthma attack and how to react quickly. It's not easy to see a child with shortness of breath. Sometimes, families must change their lifestyles completely. I always tell them that they are not alone. We are here for you.

We discuss medical treatments in Latin America. They use a lot of herbal medicine. As a nurse and an epidemiologist, I always explain they need a doctor involved in their children's care, too. There needs to be more education and knowledge about asthma.

We start with the most common questions:

• What is asthma?
• How is asthma treated?
• What causes asthma?
• Do internal or external factors trigger attacks? (Environmental contamination, cold temperature, genetic factors, or different allergens like food or pet hair.)

Have you seen a difference in cultural beliefs and behaviors among the parents on the page?

There's a difference in the level of knowledge among Spanish-speaking parents who live in the U.S. and those who live in Puerto Rico or South America, Cuba, the Dominican Republic, and Mexico.

There are a lot of asthma triggers in Latin America. They use harsh detergents and cleaners. Some parents don't know that food can trigger an asthma attack in a child. We educate the parents to check what the children are eating and prepare for a reaction when introducing a new food.

Sometimes, asthma medication side effects can make children very hyper, so parents don't give them medicine regularly. They opt to skip doses or use herbal remedies. I teach them that you must give the medication as prescribed by the doctor. I always tell the group that if they want to use herbal or natural medicine, the child's doctor needs to know because they can impact the effectiveness of the child's prescription medication.

What do you have planned for the future of the page?

We are planning our first asthma education symposium, which will stream and record on Zoom. We'll have speakers and allow parents to ask questions. I will speak as an epidemiologist and professor, and I have a dietitian, respiratory therapist, and a doctor lined up.

I want to share my knowledge. If you have access to all this information, you need to share it with others and be a part of social change. The information parents learn from the symposium or on the page might save a child's life one day. My mission is to help parents go through the process and understand that asthma is a chronic disease. With proper education and treatment, asthmatic children can live happy lives – that's what I want.