When a parent is recovering from a substance use disorder, stigma can impact the entire family – including the children. This episode explores how that stigma affects children and what physicians and others can do to promote a more compassionate approach in pediatric health care.
Guests:
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland College Park, University Health Center
Host/Producer: Carol Vassar
Announcer:
Welcome to Well Beyond Medicine, the world’s top-ranked children’s health podcast produced by Nemours Children’s Health. Subscribe on any platform at nemourswellbeyond.org or find us on YouTube.
Carol Vassar, podcast host/producer:
Each week, we’ll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. And now that you’re here, let’s go.
Music:
Let’s Go! Well Beyond Medicine
Carol Vassar, podcast host/producer:
Today, we’re talking about stigma and how it can quietly but profoundly affect the health of children and adolescents, especially those whose parents or caregivers are receiving treatment for substance use disorders. Stigma doesn’t just affect the person seeking help. It radiates outward. Shaping how families are treated by society and even within the healthcare setting.
It can even change how providers communicate or don’t communicate, and how children experience trust, safety, and stability in their care. When stigma shows up in clinical environments, it can reinforce shame, limit access to treatment, and leave parents and children feeling isolated just when support is most needed. To help us unpack this really complex and often hidden issue, we’re joined by Dr. Andrew Terranella, medical epidemiologist with the CDC’s Division of Overdose Prevention, and Dr. Rachel Alinsky, medical director of the Substance Use Intervention and Treatment Unit at the University of Maryland, College Park University Health Center.
Together we’ll explore how stigma around substance use affects whole families and what physicians and the rest of us can do to create a more compassionate response in pediatric health care. Before we start, though, a couple of definitions of acronyms you’ll hear in this episode. First, CPS, that stands for Child Protective Services. It’s a state-level agency, and every state has one, though not necessarily known by that specific acronym. And it’s tasked with investigating child abuse, supporting family safety, and, well, protecting kids. The other acronym is MOUD or medications for opioid use disorder, which is sometimes used interchangeably with MAT or medication-assisted treatment.
All right, alphabet soup aside. Let’s talk about stigma. For the most part, it’s one of those I-know-it-when-I-see-it situations, but let’s set some parameters around stigma for our conversation today. Here’s Dr. Rachel Alinsky.
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So, stigma is really a set of negative beliefs and judgments that someone holds about a person or a group of people based on some sort of trait or fact that they believe about them. So when we’re talking about substance use and substance use disorders, there’s a lot of negative judgment that people have against people that use substances or have a substance use disorder, as historically that’s been viewed as a moral failing and not the medical condition that it actually is. So there’s multiple different types of stigma. There’s public stigma and structural stigma.
Some of that structural stigma is how we treat people that use substances in our health system, as well as laws that have really perpetuated harm against people that use substances and done so in a way that is particularly targeted at people from minoritized groups and people of color. There’s also internalized stigma, and so when people that use substances face all of this judgment from healthcare providers and the media everywhere. A lot of that gets turned into negative thoughts about themselves as well that can really impact whether they are able to engage in care, have conversations with doctors about it, and just their own self-view.
Carol Vassar, podcast host/producer:
It sounds like there’s a lot of shame involved.
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
A lot of shame.
Carol Vassar, podcast host/producer:
How does it affect the family? When a family member is in recovery, how does stigma affect the family unit, Dr. Terranella?
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
So I think stigma affects not just the patient themselves, but it also affects how the whole family is able to obtain care. So specifically, we’re talking about children in a pediatrics practice, and so when a family member, maybe in recovery or has a substance use disorder, it affects how the family may feel they are going to be perceived, say as a parent. When they’re coming in with their child, worrying about whether the pediatrician may have some stigma or have some judgment on the parent, and it may influence their willingness or ability to seek care for their child, because they may be worried about how they’re going to proceed.
For instance, if their child has an injury and they worry, is the pediatrician going to think that maybe that the parent was at fault or that they might call CPS. How the family… What’s going on in the family can affect how parents may see others are perceiving them.
Carol Vassar, podcast host/producer:
I want to flip that around a little bit. When it’s a parent or caregiver who’s in recovery, how does stigma affect the child in the family or children, Dr. Alinsky?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So I think it can still impact the child in the way that the healthcare provider may interact with the family or judge something that is going on in the home based on assuming maybe bad parenting from the parent that may have a substance use disorder, but really understanding the context too of this child and the sort of anticipatory guidance you need to give to them is important. So knowing a parent’s substance use disorder history is really important to thinking about the risk for this child.
So when you’re counseling them, as the child may start to drink alcohol, thinking about if you have a family history of alcohol use disorder, the earlier that person has their first drink, the higher the risk they have of developing an alcohol use disorder. So it’s going to be really crucial to take the information and use it in a nonjudgmental way to provide anticipatory guidance to really help the adolescents not develop substance use disorders themselves or overall have better health.
Carol Vassar, podcast host/producer:
If they do develop a substance use disorder, that can affect health. How can stigma affect health outcomes for children and adolescents?
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
Well, one way that it affects, as I mentioned before, is because of that stigma that’s out there, and worrying about bringing kids into clinic, it may prevent kids from getting the healthcare that they need. When we’re talking about perhaps a youth with a substance use disorder, the stigma may actually prevent them from getting the evidence-based care that we know is out there. For instance, medications for opioid use disorder are really a gold standard for treatment of opioid use disorder.
I think because of both internal stigma, self-structural stigma, as well as stigma on the part of clinicians, so that kind of bridges all the types of stigma out there. MOUD is often not available for adolescents the way it may be for adults.
Carol Vassar, podcast host/producer:
Let’s talk about pediatricians who maybe carry some stigma with them. How does that play out when a stigma is fostered by the pediatrician themselves? Does that create an aura of mistrust perhaps between pediatrician and child that they’re trying to treat, Dr. Alinsky?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
Absolutely, it does. And there’s actually been a lot of research been done about stigma regarding substance use, and research has demonstrated time and again that when we use stigmatizing terms for people that use substances, we provide worse healthcare to them. So when we’re thinking of people as addicts or drug abusers, doctors, pediatricians will provide worse care than someone that has written in a medical history as having a substance use disorder. And so just the language itself biases how someone is going to think about a patient in front of them, and may treat them. And a lot of that can get perpetuated in the medical chart.
One person puts it in there, puts this person has a history of X, Y, Z, and then you walk in with those preconceived notions and automatically maybe start out from a stance of, “What is this person asking from me? Are they drug seeking? What is the ulterior motive?” As opposed to just walking in open-ended and getting to know the person actually in front of you and so it can start off the whole conversation on the wrong foot with this judgment. And people are smart.
They can pick up when there’s stigma and when someone is judging them, when they’re not being listened to, when maybe their pain is not being taken seriously, or there are other mental health concerns are just being blamed on substance use, for example.
Carol Vassar, podcast host/producer:
Dr. Terranella, you’re nodding your head.
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
I think pediatricians early on can start to combat that stigma and start to develop trust in the way that they interact with all of their patients in how they talk about substance use just starting off by screening every child for substance use and screening families in a non-judgmental way for substance use in the family or concerns that families may have about substance use in the home. Screening adolescents from early on, their own substance use, and doing this in a way that’s non-judgmental.
Not saying things like, “You don’t use substances, do you?” I’ve heard that often, which kind of sets up the right answer is no. And then if you do that early on, you set up a relationship of trust for later on, if an adolescent is using substances or if a family needs help with their substance use in the family. They know that you, as a pediatrician, are somebody they can come to.
Carol Vassar, podcast host/producer:
How can pediatricians challenge themselves, challenge their stigmas, and perhaps start thinking about the way they present to adolescents, children, and other family members who might be battling substance use disorders?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So I think the first part is just being really careful about language since words can be extremely powerful. We have a policy statement from the American Academy of Pediatrics, pediatricians can look at that as an explanation for what are some problematic terms that really harbor a lot of judgment, stigma, and what are more preferred terms. And so that is kind of one step in how a pediatrician can think about their own language in discussions with people and what they’re documenting and what they’re talking to colleagues about.
Carol Vassar, podcast host/producer:
I’m curious right now, what are some of the terms that they shouldn’t be using?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So we used to talk about drug abuse versus drug dependence. That was kind of the old diagnostic categories in the DSM-4. Now that’s been replaced with substance use disorder, mild, moderate, or severe. And so we’re really getting away from using the term abuse or dependence because the word abuse has a lot of negative connotations that go along with it. Similarly, we promote using person-first language. So the same way we would for any other medical condition, we talk about a child with diabetes, a child with obesity, not the obese child.
And so similarly, instead of calling someone an addict or an alcoholic, we want to say a person with alcohol use disorder or a person who uses drugs, that sort of thing. So, recognizing the inherent that this is a person first, not solely defined by their substance use, can go a long way.
Carol Vassar, podcast host/producer:
I’m curious about policy. Is there policy with regard to reducing stigma that can be brought to bear when it comes to substance use disorders in the healthcare setting or more broadly across society?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So there’s a lot of policy statements that various organizations have put out. So the AAP was the first pediatric statement when we came out with this policy statement.
Carol Vassar, podcast host/producer:
When was that?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
I think it got published in 2022, our policy statement, but we’re the first pediatric society to have that. But before that, a lot of other medical societies published similar guidelines. A lot of journalism organizations have come out with guidance. Even the White House and federal government had issued guidance. And so none of these are obviously binding, not that I know of.
I don’t think there’s federal policy or state policy about these. A lot of hospital systems have also taken on a kind of words matter initiative where they talk about, try to have signs throughout the hospital, and have providers commit to using non-stigmatizing language, a words matter pledge. So that’s something that a lot of different healthcare organizations have done to try to raise awareness about this and change the way that we’re interacting and talking about it.
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
I also want to add, this isn’t directly stigma related, but I think it helps some policies related to treatment and recognizing these are ways that we can help by recognizing and really promoting that substance use disorders, particularly opioid use disorder, is a treatable chronic medical disease and there are treatments out there that work. And we used to talk about medication-assisted treatment, but buprenorphine is not a medication that assists treatment. Buprenorphine is treatment. And so advocating that and policies that…
Since the COVID pandemic, there’s been multiple changes in policies to improve access to buprenorphine, such as most recently eliminating the requirement for the X-waiver that used to be required to. So these are policies that have been done at the national level to recognize how important the treatment is and that recovery is possible. And the more we emphasize that, and the more that this is like other chronic diseases like diabetes or anything else, and that it’s treatable. And I think that can go a long way to helping physicians feel more comfortable treating these disorders and being able to offer the care that’s needed.
Carol Vassar, podcast host/producer:
I’m glad you stated that because I’m curious how physicians can support families in understanding that this is a medical issue rather than a moral failing. How can they do that, and how can that help to reduce stigma?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So one way is by screening for I,t the way we ask about other things. So when you’re asking about family history of cardiovascular disease, cancer, also asking about mental health history and substance use history, and talking about how these are similar medical conditions that have a lot of heritability, and important to understand family history. And then I think kind of explaining these sorts of things too, just talking about it as a chronic illness, and also recognizing that with any other chronic illness, relapses are also possible.
People may need different levels of care and different types of treatment at various stages, and that’s expected and not a moral failing if that happens. But again, I think just the way we talk about it, like any other medical illness, can go on to help reduce some of the ideas that people have that it’s a moral failing or a choice.
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
I also think making sure clinicians adopt an approach around harm reduction. So recognizing that everybody’s at a different place in their recovery or their readiness for recovery, and that recovery can have relapses, and recognizing that and still being there for your patients. If they’re not ready to start buprenorphine or go into treatment, making sure that they know that you are still here as their pediatrician, you’re here when they’re ready, offering them screenings for other things, STI prevention, reproductive health options, those sorts of things.
So that when they are ready to talk to you about treatment, that you’re the person that they know they can go to. And I think that can go a really long way.
Carol Vassar, podcast host/producer:
I think it’s really important to highlight that recovery is a process. Recovery is possible, but it’s not a straight line. There is oftentimes relapse in the recovery process. Can one of you talk about the fact that this is not straight, “I’m going to take buprenorphine and I’m going to be fine?”
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
I mean it’s exactly that. Recovery is a process. For many people, it’s a lifelong process collaboration with family, and your community, and your physician. And I think it’s really important to remember that it’s not just you take the buprenorphine and you’re done. I don’t think we know how long… We don’t have any standards for how long somebody has been on buprenorphine because somebody may be on buprenorphine for the rest of their life, and that’s okay.
And I think that’s also an important thing to remember, that buprenorphine is not just a means to an end. Buprenorphine is an important treatment that somebody may be on for the rest of their life and there may be ups and downs with that. And as a physician, it’s important for you to be there with your patient and help them through that journey.
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
And going with the staying on buprenorphine, sometimes I talk about it, relating it to other medical illnesses and the treatments that we have for them. So blood pressure medications work while someone’s on them, and maybe lifestyle changes can help you get to a point where you don’t need to be on it anymore. But sometimes, then you have to go back on it, and that’s totally okay. No one’s judging someone for being on Lisinopril for 10 years. So kind of thinking about buprenorphine or other medications in a similar way. And I’ll also say that within the recovery community, because so much of it until recently has not been based in medicine.
A lot of it has been, these people were shunned from major medical communities, and 12-step programs were a huge source of support for people when they couldn’t go to doctors and talk about it. People have thoughts about, “My way of doing it is the right way,” or “They’re not doing it the right way,” or “Medication is the easy way out.” And I think recognizing that any other illness, again, there’s lots of different ways to treat it. No one way is the right way. You have to figure out what’s right for that person. And for a lot of people, medications are going to be extremely helpful and hugely lifesaving.
Carol Vassar, podcast host/producer
And for other people it’s just going to 12 step every day and making sure that you are on track with that. Everyone’s path is a little bit different is what I’m hearing. Final question. What resources should physicians recommend to families to help them cope with the emotional and mental challenges of supporting a loved one who’s in recovery?
Rachel H. Alinsky, MD, MPH, Adolescent & Addiction Medicine, Medical Director, Substance Use Intervention & Treatment Unit, University of Maryland, College Park, University Health Center:
So there’s a number of great resources out there for free on the internet. So the National Association for Children of Addiction is a wonderful organization that has resources to support children that have been affected by substance use in the family. Ranging from worksheets for providers and tip sheets to other resources or online things for children and the families themselves.
Sesame Street Communities also has some really great resources for families and kids can see their favorite, Elmo and Big Bird, but talking about difficult issues such as dealing with a parent with a substance use disorder and “Doesn’t mean that parent doesn’t love me, but they’re going away and getting some treatment,” or various things like that. And so there’s lots of materials that can make understanding this kid-friendly, that pediatricians can refer families to.
Carol Vassar, podcast host/producer:
Dr. Terranella.
Andrew Terranella, MD, MPH, FAAP, Medical Epidemiologist, Division of Overdose Prevention, Centers for Disease Control:
And I would also add, probably be remiss not to talk about the CDC has some great resources as well on their Stop Overdose campaign. It has some great resources and also tools for the community and for physicians in their offices or people working with health departments that they can use to talk about recovery and to get resources.
Carol Vassar, podcast host/producer:
Dr. Andrew Terranella is a medical epidemiologist with the CDC’s Division of Overdose Prevention. We also heard from Dr. Rachel Alinsky, medical director of the Substance Use Intervention and Treatment Unit at the University of Maryland, College Park University Health Center.
Music:
Well Beyond Medicine.
Carol Vassar, podcast host/producer:
Thanks so much to Dr. Terranella and Dr. Alinsky for sharing their time with us. And thank you for listening. Did you know that we have a new monthly e-newsletter with all the information on our latest podcasts and our upcoming guests? We do. And you can sign up for it by visiting our website, nemourswellbeyond.org. That is the central hub for anything related to the Well Beyond Medicine podcast, including access to all previous episodes, subscriptions to the podcast, and leaving a voicemail if you happen to have an idea for an upcoming episode.
Again, that website is nemourswellbeyond.org. You can also subscribe to the podcast on your favorite podcast app and on the Nemours YouTube channel. Our production team for this episode includes Lauren Teta, Cheryl Munn, Susan Masucci, and Steve Savino. Join us next time as we learn about integrating mental health services into the primary pediatric care setting. I’m Carol Vassar. Until then, remember, we can change children’s health for good, well beyond medicine.
Music:
Let’s go. Well Beyond Medicine.
