Dameka Edwards-Hart: ‘I can make a difference.’

Community Voices interview with Dameka Edwards-Hart, who supervises community health workers at the South Side Pediatric Asthma Center and conducts home visits. Shanika Hoy is the mother of former patient Taelor Armstrong.

What does your job entail?

Dameka Edwards-Hart: Community health workers provide basic education and help children and their families understand how and when to use their asthma medication. We demonstrate remediation techniques for environmental triggers. For example, if someone smokes in the home and is not yet ready to quit, we help families reduce the harm to the child by asking if they are ok with doing things like smoking outside, washing their hands, changing clothes after they smoke and putting those clothes in an airtight container. If they have pets in the home, we recommend keeping the pet out of the child’s sleeping area, not allowing pets to be on furniture and keeping the pet in a different room than the child is in. We also provide resources for our families on everything from utility assistance to child care.

One of the great things about our program is that it’s specifically tailored to the child. Some children may require more time in our program, while others may only need a few visits. We also assist parents with talking to their child’s care providers about writing an asthma action plan, scheduling meetings with their child’s school in order to obtain a 504 plan, and other accommodations needed to ensure that the child is able to self-carry and self-administer medication, and has everything he or she needs to reduce symptoms while in school.

Shanika, how did you first connect with Dameka?

Shanika Hoy: It was winter two years ago and getting cold outside, and my son Taelor’s asthma was constantly flaring up. We were in the ER maybe three times in a 10-day time span. That’s when we met Dameka. Taelor was so young, just six, and he was having so many issues. The program was a perfect resource to help me understand the lingo — because that’s what I was struggling with the most, the medical terminology.

How did she help you?

Hoy: We had a few home visits spread out over a six-month period; Dameka came once a month. There was hands-on education for my son. I lived at home at the time and my mother smoked. We thought that because the house was so big that if she smoked in the front part of the house, it was okay. But we could not have been more wrong. Dameka had pictures and showed us a couple of YouTube videos and we learned a lot about environmental triggers. My mother started to go onto the back porch to smoke, doing things like that. We didn’t realize that there were so many small triggers involved with his asthma flare ups. Dameka also explained to me how the flare ups may have something to do with the seasonal allergies he was having. So it was definitely a lot of information that was given during those home visits.

Dameka also helped my son to be able to self-diagnose and recognize his own triggers. And she helped me to get his 504 plan developed so that he could have special accommodations in school when necessary.

Dameka, how would you describe the communities where you work?

Edwards-Hart: Under-resourced, overlooked and underrated. But the South Side is beautiful. It has beautiful people who deserve the very best of everything. I am a product of Englewood, and I am proud to serve the area in which I grew up. I love being an advocate and a voice for families in my community. It is a true passion of mine — so much so that I am willing to do whatever I can to get people to understand that we deserve everything that is given to suburban neighborhoods. This shouldn’t be viewed as a luxury or a bonus. This should be the norm.

What are some of the reasons that asthma is so prevalent on the South Side?

Edwards-Hart: Poverty, lack of access to care, and lack of knowledge and understanding of preventative care. In addition to increasing the prevalence of asthma, this lack of understanding can also lead to increased hospital use, ER visits and mortality rates.

I consider community health workers to be bilingual in that we speak medical jargon. But we can also speak the language of the “hood,” if you will.

How do you build trust with families?

Edwards-Hart: I let them know that I’m just like them. I have asthma. I’m a mom. I tell them: My goal is your goal. I just want to help your baby be well. I have a joke that I use with my families. I say: Think about it like this, I’m doing my job if you tell me that your baby is driving you crazy. Because if your baby is running around causing all kinds of havoc, then more than likely, he or she isn’t having asthma symptoms. They’re able to breathe, and they’re able to play the way that a kid should.

Not only are we able to put the family at ease, we build the trust factor with the family, where they’re able to share with us what’s going on with them, including having issues with utility bills, rental assistance and things like that. Because all of this plays a part in health disparities.

Shanika, what did you learn that made a difference?

Hoy: Now, Taelor’s asthma is very well controlled. We haven’t been in the ER for his asthma in over a year. So the education that Dameka gave us, we put into practice today. And that includes his diet and his intake of sugar. Sugar makes him hyper, which is going to make him bounce off the walls, and his asthma may flare up from being short of breath. So there are a lot of things that we took away from our conversations.

Taelor’s knowledge and his awareness of his own asthma is amazing. He knows when to take breaks. He knows what not to eat. He knows in the morning, after he brushes his teeth and washes his face, how to take his medicine on his own. I still check in to make sure. But it’s become a routine. That program was awesome. I hated that it ended. But after 12 weeks, his asthma was under control.

Dameka, how do social determinants of health play a role in your work?

Edwards-Hart: Social determinants of health can have an adverse effect on health. With some of the families we serve, as long as the child is breathing, the asthma may not be the biggest problem they’re dealing with. Mom may be worried because if she doesn’t have money by the end of the week, the lights may be disconnected. When we come in, we can try to help families obtain some sort of utility assistance. That puts their minds at ease, so now the lights aren’t going to get cut off and we can put more focus on the child’s asthma.

It breaks my heart because no family should have to decide between focusing on paying a light bill or worrying about their child’s health. This shouldn’t even be an option.

I went to visit the home of a nine-month-old, and when I walked in, the mom was really upset. The child receives medication by nebulizer, and she received a disconnection notice. If she doesn’t have electricity, how is she going to give her baby his medication? And this is just one example.

How are you making a difference in the community?

Edwards-Hart: I love that I’m able to advocate for those who cannot advocate for themselves. I have no problems speaking up for my families because I’m trusted in my community.

I consider community health workers to be bilingual in that we speak medical jargon. But we can also speak the language of the “hood,” if you will. So, I can help my families understand what the doctor is talking about in a way that makes sense to them. But I also take information that I learn in the community back to the physicians to say: The reason this patient isn’t meeting the standards that you set for them is because they don’t understand. And I explain to the physician the language I used to help the child and family understand how and when to use the medication. And this is a teaching moment for the provider.

I love that I can make a difference. Community health workers are essential in producing positive, evidence-based health outcomes. It is truly an honor to represent my community as a community health worker.

This interview originally appeared in the Chicago Tribune's Community Voices column. It was conducted by independent health writer Deborah Shelton on behalf of UChicago Medicine. Neither the Tribune newsroom nor the Editorial Board was involved in producing the content.