Why Black and brown kids are falling through the cracks [PODCAST]

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“Our primary care systems should be designed for all the kids and families they are intended to serve. Incorporating system navigators to support the needs of our most vulnerable families is a feasible step in the right direction.”

Jeffrey Shahidullah is pediatric psychologist.

He shares his story and discusses his KevinMD article, “Difficulties navigating the health care system are causing many Black and brown kids to fall through the cracks.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today on the show, we have Jeffrey Shahidullah. He is a pediatric psychologist. We’re going to talk about his KevinMD article, “Difficulties navigating the health care system are causing many Black and brown kids to fall through the cracks.” Jeffrey, welcome to the show.

Jeffrey Shahidullah: Thanks for having me.

Kevin Pho: We’ll get into the article in a little bit. First off, briefly share your story and journey to where you are today.

Jeffrey Shahidullah: Yeah, absolutely. I’m a pediatric psychologist at Dell Children’s Medical Center here in Austin, Texas. I’ve had experience over the past decade as an embedded, or an integrated, provider within pediatric primary care clinics and specialty medical clinics, and I’m currently embedded in developmental and behavioral pediatrics. Much of my career has been working in urban environments with ethnically and racially diverse and marginalized children and families. With Texas being one of four minority-majority states, we see a range of diversity related to race, ethnicity, language, SES, and insurance status.

I’m also an assistant professor in the Department of Psychiatry and Behavioral Sciences at UT Austin Dell Medical School. I’m a health services researcher, and what I’m interested in is looking at health disparities and models of health care, particularly integrated behavioral health models that can improve access to care for marginalized children and families.

Kevin Pho: Tell me about some of the typical cases that you see in a given day.

Jeffrey Shahidullah: That’s a great question. We run the gamut. I mean, we are a developmental behavioral pediatrics clinic, so we do work with kids on the early end of the lifespan, zero to eight years old, but most of our kids have some sort of developmental disability, delay, or concern: autism, ADHD. And then I’m an in-house referral, so kids with externalizing problems, noncompliance, oppositional and disruptive behaviors, toileting, feeding, sleep, anxiety concerns, depression, and mood concerns. And because we are a developmental clinic, most of the work that I do is actually training families, not working with the kids individually.

Kevin Pho: What are some of the challenges you face when talking and interacting with the families?

Jeffrey Shahidullah: Uptake of strategies, working with parents. A lot of times, the first question is, “Do we need to be there, or can we just drop little Johnny off on the call?” And I mean, it’s great for Johnny to be there, but I tell parents it’s more important for you to be there, because kids just react to their environment. So how do we sort of set up environments in a way that’s going to cultivate more of the behavior that we want and less of the behavior that we don’t want? So it’s just kind of getting parents to buy into that. If I can do that, then usually we’re pretty good.

Kevin Pho: All right, so let’s talk about your KevinMD article. It talks about one of your passions, which is health disparities. How did that article come about? Why did you decide to write it?

Jeffrey Shahidullah: It was a JAMA Pediatrics article that was published fairly recently by Dr. Salam Abdus and Thomas Selden at the AHRQ, the Agency for Healthcare Research and Quality. When I read the article, it really just confirmed a lot of the things that I see in practice, so it did speak to me in that more clinical sense. And that’s that children of color face additional barriers to accessing health care. This study specifically looked at their attendance at primary care wellness visits, and it found really alarming gaps between Black and Hispanic kids compared to white kids in attending these primary care visits.

I mean, everyone listening to your podcast probably knows that these are really important appointments where children and their caregivers can get preventative care and developmental services, like screening for autism. That’s where they get timely immunizations, and parents really get their questions answered about their child’s development. The AAP, or the American Academy of Pediatrics, recommends more frequent appointments early in the lifespan, and then after three years old, we space those out to once a year.

Now, in the study, 53 percent of Black kids and 58 percent of Hispanic kids actually attended all of their yearly primary care wellness visits, compared to almost 70 percent of white kids. They looked at a few other factors, like insurance status, so attendance rates differed by the family’s insurance status. Only 31 percent of uninsured families attended all of their appointments, compared to 59 percent of families who were publicly insured and 66 percent of families that had private insurance.

This was really important for me, because we look at all the disparities that we see for kids based on race and ethnicity and SES and insurance status, for developmental outcomes, mental health, and physical health outcomes. For example, we know that Black kids are diagnosed with autism about three years later than white kids, and oftentimes we see kids being diagnosed three years after parents had first expressed concerns about their kid’s development. We know that Black and brown kids have later diagnoses for things like ADHD compared to white kids, and we also know that children of color have a harder time getting their mental health needs met in primary care.

And for your audience members who are wondering why we’re talking about mental health care in a study that looked at primary care well-child visit attendance rates, we know that in the U.S., if a child is receiving mental health care, it’s probably not from a psychiatrist or a psychologist. More than likely, it’s from a PCP, or possibly a professional in the kid’s school. And so what my KevinMD article focused on was looking at some of the reasons that these disparities in primary care attendance rates exist.

Kevin Pho: Going to that, what are some of the obstacles that can explain some of the numbers you just talked about in the study?

Jeffrey Shahidullah: Yeah, I think one of the things that really strikes me is that a lot of the racial, ethnic, and economic disparities that we see in primary care visit attendance rates for kids really stem from factors that aren’t in the kids’ and families’ immediate control, right? So you think about things like implicit and explicit bias and discrimination, and lack of diversity in health care professionals, right? Sometimes that can affect the patient-provider relationship. And then just a lot of logistical barriers, right? Transportation is a big one, lack of child care, lack of parental work leave, financial barriers, or just other social needs that complicate or take precedence in these families’ lives.

Kevin Pho: Now, is there a story, an example, or a case study that you’ve seen in your clinic that can really illustrate that point?

Jeffrey Shahidullah: Yeah, absolutely. I mean, I think it’s usually not one thing. Sometimes it is as simple as, “I don’t have transportation. I don’t have a bus pass. The car’s in the shop.” Usually, it’s a confluence of a number of events. Maybe they’ve had negative experiences with help-seeking. Maybe they feel like the problem that we identify in primary care isn’t necessarily the biggest issue that the family is dealing with, especially with the COVID pandemic, and parents losing jobs, and kids falling behind in school, and things like that.

So usually, it’s not just those concrete barriers we tend to think about: financial, logistics, insurance, transportation. Very often, we think about those concrete barriers: If we can just get them to primary care, then all their needs will be addressed. But I think the case study that I see more often is more about those perceptual barriers. This problem really isn’t that big of a problem, or it is a big problem, but it’s not at the top of the family’s list, or maybe they’ve just had negative experiences with help-seeking in the past. So addressing those perceptual barriers, and those concrete or logistical barriers, is more often what I see.

Kevin Pho: Talk about some of the path forward, I guess. Are there any policy solutions, and are there any solutions from an individual practice level?

Jeffrey Shahidullah: Yes. The JAMA Pediatrics study didn’t specifically mention system navigators, so the use of nonclinician laypersons who function as health care workers, in their article. But in highlighting the problem, where my mind went was to some of the work that many folks around the country are doing, and that’s embedding system navigators onto health care teams to help engage families in health care, right? To help address those concrete and those perceptual barriers.

Kevin Pho: Tell us, what is a system navigator?

Jeffrey Shahidullah: Yeah, for your audience who isn’t familiar with what a system navigator is: Sometimes they’re called patient navigators, sometimes they’re called family navigators, community health workers, or promotoras, and they’re nonclinician laypeople who partner with and engage families in their health care. So these are individuals who may be trusted community members. They might share a common background, whether that’s race, ethnicity, language, or shared cultural or lived experiences, with the families that they serve. It’s really a means of providing support to address the barriers that might get in the way of someone accessing, engaging in, or maintaining their medical care.

It’s also emotional support, right? Not just the concrete logistical support with bus passes and things like that, but that emotional support, to help families that are dealing with real struggles, where that medical appointment may not be the top priority for the family. At the same time, for the reasons I stated earlier, we know that those primary care wellness visits are really important for early screening and detecting developmental delays, concerns, mental health problems, and mental health issues.

We know that many families and patients prefer to work with providers who share their race, ethnicity, or cultural background. Yet you look at the primary care physician workforce in the United States, and it is less than 9 percent Hispanic and 5 percent Black, while U.S. children are 26 percent Hispanic and 14 percent Black. So really, I think it’s a way to provide more cultural responsiveness within the primary care team. The problem is it’s just not a model that’s widely used, at least in pediatrics. It’s more so on the adult side, though.

Kevin Pho: Yeah, so I was going to ask, how common is that?

Jeffrey Shahidullah: Not very common. A colleague of mine did a systematic review a couple of years ago, and there were only eight studies of pediatric navigation models that met our criteria for quality methodology and risk of bias. System navigation really started in the ’90s, the early ’90s, in cancer care clinics. We do see wider use today in adult populations, although a lot of children’s hospitals are starting to implement care navigation programs as part of their Medicaid or managed care plans for children with medical complexity, right? I mean, that’s due just to the degree of care coordination that’s involved in all the many specialists that these families see, all the appointments and scheduling, and the transportation and financial barriers that come along with that.

But thankfully, I think we’re starting to see people around the country realize that more children and families could really benefit from the model. So I think for the typical community-based pediatric or family medicine practice, there’s really a compelling argument for hiring a navigator, and I think some of the research is starting to bear that out.

Kevin Pho: If you were running the show, in your ideal scenario, walk us through what that ideal would look like.

Jeffrey Shahidullah: I think it starts with the financial climate that we’re in. I think that there’s a sort of initial barrier to practices maybe hiring that first navigator. In a perfect world, maybe, since a lot of the costs that come from not having a navigator, like higher use of the emergency department or hospital or acute care services, or missed appointments, since a lot of those costs are borne by insurers, it would be really nice if insurance companies or hospitals or health systems as a whole could sort of bear some of these up-front initial costs, so that the initial decision to hire isn’t necessarily borne by the primary care practice.

I think that for kids, for pediatrics, there are very few studies. There are studies, but they’re not all just in primary care. A lot of them are in complex care clinics within hospitals, or autism clinics, and things like that. There was a study out of California that was published earlier this year in the Journal of the American Board of Family Medicine that found that low-income persons of color in Los Angeles who worked with a navigator were actually three times more likely to have primary care access than those without a navigator. And they were significantly less likely to experience a lot of those barriers to care that I mentioned earlier, right? Such as not having insurance, not being able to pay for a visit, and not having transportation. So it would be really nice, for those financial next steps, if we could have more widespread navigation services, and maybe insurance companies could bear some of that cost.

Kevin Pho: Other than system navigation, are there any other solutions that we can do?

Jeffrey Shahidullah: There are systemic and structural reasons why families don’t receive care, and I think system navigation isn’t going to be the panacea, right? It can help them navigate sometimes unfair or inherently racist systems. As a pediatric psychologist who’s embedded in a subspecialty medical clinic, and who has done integrated primary care in the past, I think that’s a great model. It really aligns with that high-quality primary care model, that team-based model.

Think about moral injury and burnout among the primary care physician workforce. Dealing with behavioral health concerns is time-consuming. Dealing with suicidal 15-year-old adolescents isn’t necessarily something that primary care physicians are trained very well in, and even if they are trained well in it, they just don’t have the time. So I think embedding folks like system navigators, but then also behavioral health providers, to really share patient care supports families, but also the primary care physicians that they work with.

Kevin Pho: We’re talking to Jeffrey Shahidullah. He is a pediatric psychologist. His KevinMD article is titled “Difficulties navigating the health care system are causing many Black and brown kids to fall through the cracks.” Jeffrey, what are some of your take-home messages that you want to leave with the KevinMD audience?

Jeffrey Shahidullah: Yeah, I think it’s the point that I mentioned earlier: The reasons for a lot of the problems that our families face in attending these primary care wellness visits are so multisystemic. But I think for primary care physicians and nurse practitioners, trying to cram time into a medical visit or a wellness visit to help families address some of these needs is not going to be the long-term solution. What we need to do is think about how we can build these mechanisms into the system, the health care system as a whole, to help improve trust and rapport and care coordination and communication and engagement over the long haul.

And again, system navigation isn’t the solution. It’s not the panacea. Families still operate in unjust and unfair systems of care, through health care and economic disadvantage, lack of safe and affordable housing, and lack of access to educational opportunities. But this is a model that can help families better navigate those systems of care, and that can lead to better outcomes for families and children.

Kevin Pho: Jeffrey, thank you so much for sharing your time and insight. Thanks again for being on the show.

Jeffrey Shahidullah: Thanks so much.

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