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An 82-year-old man requests removal of “these ugly growths under my eyes.” He states that the condition was first noted approximately 2 years ago and has extended to involve his cheeks. The patient has a history of precancerous skin lesions treated on his scalp and hands. He also had ample sun exposure spanning decades. The physical examination reveals multiple open and closed comedones in the affected areas.
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I’ve been a physician associate (PA) since 2000. I practiced clinically until September 2023, when I moved to an academic faculty position. I am still a proud PA-C, but my practice is now more focused on helping students in my program find clinical placements, which is sometimes challenging.
I’ve been reflecting on how, over the almost 24 years of entirely clinical practice, I did as a listener. How did I do as a conduit for my patients to obtain quality care? What could I have done better, and what can I do better should I return to clinical practice?
These are tough questions to answer, and ones that can lead to defensiveness and denial. I have recently been framing this self-exploration by looking back at my family dynamics; “family of origin” issues as the counselors say.
My father and mother were both highly trained educators, focused on the teaching profession. They both seemed to have strong listening skills, much to my appreciation; although there were times when they struggled as parents to listen fully to me or my brother. Certainly, the parent-child relationship brings challenges apart from those that face medical patients and medical providers, but I am convinced there is much to learn from both, with application to both.
My parents' biggest challenges were finding the knowledge, skills, and abilities to guide me through the call to listening that arose most acutely during my adolescent years. We all had pretty smooth sailing regarding listening to each other in earlier years, and I credit them for that, mostly because of their interest and willingness to put our family into settings that taxed our empathy and active listening skills. Their choice to put my brother and I into completely foreign and new-stress settings (moving from a small town in Oregon to Libya for a year in 1962, where my father was a principal of a high school on an American Air Force Base, then moving from Eastern Washington to Hawaii in my 10th grade year).
"
Dad, I don’t think you are hearing me, can we change seats, can you sit on the bed, and allow me to sit in the comfortable chair?
The biggest test for our mutual listening skills occurred during my 8th and 9th grade school years in Eastern Washington. Until then I felt I was holding up my part of the deal. We all spoke freely and warmly to each other, had lots of meaningful time together, and there was a general sense of mutual respect, openness, and honesty, with things apparently functioning smoothly.
Then in my 9th grade year, as I began to explore issues and relationships new to me and to them, we struggled. I recall the dread when my father would come to my room, in his suit and tie from his work, and ask if he could speak to me in my parents’ bedroom. There, he would tell me that he had heard from some of my unnamed friends and schoolteachers about some unacceptable behavior on my part related to school and peri-school activities. My father, in these meetings, was calm and would sit in a chair, with me sitting on his bed. Even then, I felt this was setting us up as less than equal, and I didn’t like it.
He asked me to explain myself, and I would defensively offer my story, trying to help him understand that there was nothing untoward in my behavior for him to be concerned about. I wasn’t drinking, smoking, using drugs, having inappropriate relationships with friends or classmates, but he was stubborn in his interpretation of my assertions. I was no angel, but I thought I was being a pretty responsible child.
This was frustrating to me, and I struggled to get him to shift his thinking. Finally, I pleaded with him, “Dad, I don’t think you are hearing me, can we change seats, can you sit on the bed, and allow me to sit in the comfortable chair?” He thought that was a little weird, but we did that.
Now in a more equitable-feeling position, I asked him, “please try to hear me.” He quietly nodded and agreed, and I made my case. In the chair, I was more comfortable gesturing, using my hands to make points, and even asking him questions.
There was a notable shift in his stance on the interrogation. He listened more, talked less, asked respectful questions, and restated my position in ways that were accurate and self-assuring. He allowed there to be moments of silence in the conversation, and I felt deeply heard.
After several minutes of this shifted dynamic, I asked him, “so can you believe me now? Can you understand why I would do nothing to harm your trust?” He nodded, and said “yes, and thank you for your effort here for us to hear each other.” We shook hands, and I left the room.
Now, when I think of this encounter, I examine my own listening malfunctions as a clinical PA for so many years. While I prided myself in being an active listener, in my work in addiction medicine I recall patients who were frustrated with me, and who felt I wasn’t listening to them, or even allowing them to speak.
As I think back to those patients, I remember my own devotion to trying to control the encounter, thinking that it was my job as the clinician to do so, and maintain control. I was now the one sitting in the comfortable chair calling the shots, and in doing so, I now see how I likely short-changed many of my patients over the 23 years of clinical behavioral health practice.
I wish I had some of the clinical encounters to do over. And to any patient who I have not fully grasped my responsibility to listen and hear, I wish I could see you to apologize. I hope that if I’m lucky enough to have another crack at clinical practice, that I can carry the lessons from above to my care for them. They all deserve at least that.
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In celebration of Asthma and Allergy Awareness Month, this physician profile spotlights Tyra Bryant-Stephens, MD, a pediatrician specializing in asthma who was the featured speaker at the American Thoracic Society (ATS) Diversity Forum during the 2024 ATS International Conference, held from May 19 to 22 in San Diego, California.
Dr Bryant-Stephens, Chief Health Equity Officer and a practicing physician at Children’s Hospital of Philadelphia (CHOP), is nationally recognized for her community-driven, evidence-based research on asthma and environmental asthma triggers. In 1997, she founded the Community Asthma Prevention Program (CAPP) at CHOP. This community outreach program offers community- and school-based asthma education and environmental mitigation and has delivered more than 21,000 home-based asthma visits to families in underserved, poorly resourced, inner-city areas. The program has since become involved in identifying and funding necessary home repairs to reduce asthma triggers, which has led to a reduction in hospitalizations among at-risk children with asthma.
What led you to become a physician?
Dr Bryant-Stephens: I started out in a rural community in the South. My grandma was the community nurse. She was a licensed practical nurse and really served mostly the Black neighborhoods in this small community. She didn't drive; she walked to people’s homes with a wagon that had all of her stuff on it. She would get a message that someone was sick, asking if she could come by, and she’d go there. Most of us [in the community] only went to the doctor for shots and broken bones, because she really was the healer of the community. I would follow her around and ask her questions like: why are you doing this or that? I really appreciated how she could make people feel better. I wanted to be a nurse like her.
Then in 10th grade, in a summer program for gifted students, I was asked what I wanted to do [after high school]. When I said I wanted to be a nurse, someone asked me: Did you ever think about being a doctor? And I thought: Are there Black doctors? I never knew that was an option! From that day on, I realized I could be a doctor, and that’s the road I went down, not knowing anything about what that road would look like.
Why has asthma been such an important focus for you?
Dr Bryant-Stephens: That goes back to my first year of residency. The first child I saw in the emergency room (ER) had an asthma attack. I was impressed that after being so sick when she came in, she left able to breathe and talk normally. That really sparked my interest. I wanted to know: What causes an asthma attack? And, if you can so easily reverse an asthma attack, can you prevent them? That’s what got me started with thinking about asthma.
Once I became a doctor, I saw asthma all the time. As we know, primary care doctors take care of 80% of the children with asthma.
Dr Bryant-Stephens: As medical director of the first off-site primary care center at CHOP, every Monday morning I would get a weekly report of the children who went to the emergency room, and there were always children with asthma. I thought: We do everything we know to do, according to the guidelines, in caring for kids with asthma, but our kids still end up in the hospital ER.
I realized that we were missing something. I saw that we need to go into the community and figure out what we were doing wrong and learn what gaps needed to be filled.
We started out with classes at a community site. We facilitated a very interactive program of 5 sessions on the ins and outs of asthma. During the second session, an environmental class, I kept hearing parents say they didn’t have the tools needed to do the mitigation strategies we were discussing. That’s what started my research career: I wanted to determine if having community health workers in homes providing one-on-one education, showing parents how to do the mitigation strategies, could make a difference.
The Community Asthma Prevention Program at CHOP now gives parents greater support for dealing with common asthma triggers, including dust, cockroaches mice, pets, tobacco smoke, and mold. For dust mitigation, we give parents mattresses, pillow covers, and vinyl tiles they can use to replace carpeting. They have to do the work, but we give them materials. For pest management, we give them cockroach and mice pest prevention cleaning strategies, but we also give them traps and things like that. Through a partnership with the health department, we are now able to bring in professionals to do integrated pest management as well. We also show folks how to do better job with cleaning strategies to keep out mice, which is the most common pest that we see in the homes. Mold and mildew are harder, because usually you don't get mold until you have a serious leak. But we teach cleaning strategies and we point out plumbing leaks that need to be fixed.
"
As a Black person who grew up in the Black community, the whole idea that people had worse outcomes because they were Black just never resonated with me. I realized that we, in the medical field, were missing something…and I was motivated to find it.
In 2018, CAPP started doing some structural home repairs. We now do roof repairs, plumbing repairs, all kinds of structural repairs to reduce asthma triggers in the home. We’ve now completed 200 home repairs. To my knowledge, there aren't any other programs that are really doing the structural things like we do. Our hospital invests about $15,000 per home, so it’s a big deal in terms of the investment we're making in these houses.
The CAPP program’s community education classes and one-on-one in-home education have shown measurable results that have been published. Obviously, with our more recent home repair initiative, it takes a while to see results; it’s not like giving people medicine, where you expect to see results right away. At this point we have seen a reduction of about 30% in hospitalizations among those who have received the home repairs.
What did it take to get the home repair asthma outreach program up and running?
Dr Bryant-Stephens: We got started through a grant, and we had matching funds from the hospital through CHOP’s Healthier Together initiative. Partnering with a Philadelphia home repair agency, we started with repairing 30 homes to really see if this was feasible and if it was worth it. Once we were able to show we could do the work and get results, CHOP starting fully supporting this work through philanthropy and community benefits dollars.
What motivated you to take the lead in creating this unconventional approach to asthma care — and what keeps you motivated to do the work?
Dr Bryant-Stephens: As a Black person who grew up in the Black community, the whole idea that people had worse outcomes because they were Black just never resonated with me. I realized that we, in the medical field, were missing something, that there was some kind of gap that we needed to fill and I was motivated to find it. I knew the education and the office visits we had been offering didn’t seem to be working. We had to admit that people weren’t doing what we asked them to do, and we needed to find out why — what the barriers were.
Those community education classes were really the launching pad. Listening to people at those community education classes gave me the information I needed on the barriers, so we could begin figuring out solutions to address those barriers. That’s what really started the new program for improving people’s homes.
What keeps me motivated? Asthma hasn’t gone anywhere! Unfortunately, we still have [health] disparities! We know that we are able to change things for people in our programs, but how do we create systemic change? I don’t have enough dollars to enroll [all the children who need these programs]. So how do we create change or advocate for change to disseminate the practices that work, to help children throughout the city?
The problem we are dealing with here is systemic. Systemic oppression, like redlining. So poor people, Black people, are living in these communities where there's been no investment, with poor housing conditions with most houses built at the end of the 1800s or in the early 1900s. You can imagine what it takes for upkeep, to maintain them. But people don’t have the resources to maintain these homes — and the children living in these homes who go to the hospital [with asthma] are then sent back to these houses. If we really want to change things, we have to address the environment where these children with asthma are living.
You were recently named director of CHOP’s new Center for Health Equity. What does this center do and what is your role?
Dr Bryant-Stephens: I'm now the Chief Health Equity Officer for the CHOP Center for Health Equity. Through this program, we try to discover, disseminate and implement best practices to reduce disparities and improve health equity and improve health outcomes for children. Our motto is “No harm and equitable care.” We're hoping to do a lot. There are many aspects of children's health where disparities are seen, so we try to support clinical teams in analyzing the problems and providing needed tools. We also partner with people in the community to help bring about change in health-related social needs — helping families obtain existing resources, identifying where more resources are needed, and working with partners to develop resources related to things like housing, food, financial stability, child care, and utilities.
What is your greatest professional accomplishment?
Dr Bryant-Stephens: That the CAPP program is still here, and that we've been able to evolve over time, organically, by listening to folks. I don't think we've reached everything that impacts asthma. But we've definitely made a dent in changing the things that make a difference in asthma outcomes. We're still here trying to achieve equity for all kids with asthma. It shouldn’t be about their skin color, it should be about the fact that these are children who deserve healthy living situations, so they can have healthy lives.
What do you still hope to accomplish? What is your ultimate goal?
Dr Bryant-Stephens: My overall vision is that children in Philadelphia be the healthiest children in the nation. Now that we’ve moved from the idea [that so many health-related problems] are rooted in race — now that people have recognized that race is a social construct, not a biological one — we need to think about those things that are barriers to all children reaching their best health. Maybe all children can’t be equally healthy, but they can all be at their best health. That's the lofty goal that will keep me busy for years to come!
Can you say more about the idea of race being a social construct and how that affects health care?
Dr Bryant-Stephens: Many of our clinical algorithms have been based on race. Let’s just talk about asthma and spirometry. Race was one of the predictors of lung function outcomes. If you look at the genesis of that, there wasn't really a scientific reason for this; it was based on assumptions [maybe even going back to differences in] looking at slaves’ build vs White men’s build and assuming that Black people had less lung capacity. And if you assume that, then your prediction for how Black people perform on lung tests will be less than that of White people. In the last couple of years, the American Thoracic Society has discounted this and determined that race should not be part of the algorithm.
These underlying racist assumptions have affected other areas of medicine as well. I don’t think it’s helpful to call people racist, but racism has been the reason that it has been assumed that Black people are not physically as capable as other folks, and that has permeated our thinking. Now that we’ve all had an “aha” moment and realized that’s not true, I think we move forward. I think we now say all children — and it doesn’t matter the color of their skin, or how poor or how rich — should achieve their best health, their best outcomes. And we realize that might look different for different children, but not because of the color of their skin.
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People often think of disasters as great equalizers. After all, a tornado, wildfire, or hurricane doesn’t discriminate against those in its path. But the consequences for those affected are not “one-size-fits-all.”
That’s evident in recent storms, including deadly tornadoes over the 2024 Memorial Day weekend, and in the US Census Bureau’s national household surveys showing who was displaced by disasters in 2023.
Overall, the Census Bureau estimates that nearly 2.5 million Americans had to leave their homes because of disasters in 2023, whether for a short period or much longer. However, a closer look at demographics in the survey reveals much more about disaster risk in America and who is vulnerable.
It suggests, as researchers have also found, that people with the fewest resources, as well as those who have disabilities or have been marginalized, were more likely to be displaced from their homes by disasters than other people.
Decades of disaster research, including from our team at the University of Delaware’s Disaster Research Center, make at least 2 things crystal clear: First, people’s social circumstances – such as the resources available to them, how much they can rely on others for help, and challenges they face in their daily life – can lead them to experience disasters differently compared to others affected by the same event. And second, disasters exacerbate existing vulnerabilities.
"
Low-income and marginalized communities are often in areas at higher risk of flooding from storms or may lack investment in storm protection measures.
This research also shows how disaster recovery is a social process. Recovery is not a “thing,” but rather it is linked to how we talk about recovery, make decisions about recovery, and prioritize some activities over others.
Lessons From Past Disasters
Sixty years ago, the recovery period after the destructive 1964 Alaskan earthquake was driven by a range of economic and political interests, not simply technical factors or needs. That kind of influence continues in disaster recovery today. Even disaster buyout programs can be based on economic considerations that burden under-resourced communities.
This recovery process is made even more difficult because policymakers often underappreciate the immense difficulties residents face during recovery.
Following Hurricane Katrina, sociologist Alexis Merdjanoff found that property ownership status affected psychological distress and displacement, with displaced renters showing higher levels of emotional distress than homeowners. Lack of autonomy in decisions about how to repair or rebuild can play a role, further highlighting disparate experiences during disaster recovery.
What the Census Shows About Vulnerability
The 2023 census data consistently showed that socially vulnerable groups reported being displaced from their homes at higher rates than other groups.
People over 65 had a higher rate of being displaced than younger people. So did Hispanic and Black Americans, people with less than a high school education, and those with low household incomes or who were struggling with employment compared to other groups. While the Census Bureau describes the data as experimental and notes that some sample sizes are small, the differences stand out and are consistent with what researchers have found.
Low-income and marginalized communities are often in areas at higher risk of flooding from storms or may lack investment in storm protection measures.
The morass of bureaucracy and conflicting information can also be a barrier to a swift recovery.
After Hurricane Sandy, people in New Jersey complained about complex paperwork and what felt to them like ever-changing rules. They bemoaned their housing recovery as, in researchers’ words, a “muddled, inconsistent experience that lacked discernible rationale”.
Residents who don’t know how to find information about disaster recovery assistance or can’t take time away from work to accumulate the necessary documents and meet with agency representatives can have a harder time getting quick help from federal and state agencies.
Disabilities also affect displacement. Of those people who were displaced for some length of time in 2023, those with significant difficulty hearing, seeing, or walking reported being displaced at higher rates than those without disabilities.
Prolonged loss of electricity or water due to an ice storm, wildfire, or grid overload during a heat emergency can force those with medical conditions to leave even if their neighbors are able to stay.
That can also create challenges for their recovery. Displacement can leave vulnerable disaster survivors isolated from their usual support systems and health care providers. It can also isolate those with limited mobility from disaster assistance.
Helping Communities Build Resilience
Crucial research efforts are underway to better help people who may be struggling the most after disasters.
For example, our center was part of an interdisciplinary team that developed a framework to predict community resilience after disasters and help identify investments that could be made to bolster resilience. It outlines ways to identify gaps in community functioning, like health care and transportation, before disaster strikes. And it helps determine recovery strategies that would have the most impact.
Shifts in weather and climate and a mobile population mean that people’s exposure to hazards are constantly shifting and often increasing. The Coastal Hazard, Equity, Economic Prosperity, and Resilience Hub, which our center is also part of, is developing tools to help communities best ensure resilience and strong economic conditions for all residents without shortchanging the need to prioritize equity and well-being.
We believe that when communities experience disasters, they should not have to choose between thriving economically, ensuring all residents can recover, and reducing risk of future threats. There must be a way to account for all three.
Understanding that disasters affect people in different ways is only a first step toward ensuring that the most vulnerable residents receive the support they need. Involving community members from disproportionately vulnerable groups to identify challenges is another. But those, alone, are not enough.
If we as a society care about those who contribute to our communities, we must find the political and organizational will to act to reduce the challenges reflected in the census and disaster research.
This article, originally published March 4, 2024, has been updated with latest severe storm systems.
This article is republished from The Conversation under a Creative Commons license.
Read the original article.
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