Mental Health Part 1: Understanding the Problem

It's no secret that mental health challenges are on the rise for children and teenagers, but imagine being a kid with a complex, chronic health condition. 

In a special two-part series on mental health, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health challenges. The first episode takes a look at this pervasive problem, and in the second episode, we’ll have a conversation about solutions and examine what is being done to help kids and teenagers.

The CARRA Podcast host, Claudette Johnson, explores how doctor’s appointments, treatments, endless tests, and medications are part of daily life for kids with a rare autoimmune diseases.  Missing school, sitting out from sports, not having friends who understand the child’s condition can be lonely and mentally challenging – on top of the struggles every kid and teenager faces.

In Mental Health - Part One, Claudette talks with a pediatric psychologist who is focused on helping kids living with pediatric rheumatic diseases. Dr. Alana Goldstein Lever is a team psychologist in the Department of Rheumatology, where she works with children, teens, and young adults with rheumatic diseases. She is also an assistant professor at the Ohio State University.

Dr. Goldstein Lever explains how and why mental health issues, such as depression and anxiety, are on the rise in young people and why kids with pediatric rheumatic disease face additional challenges that can strain their mental health, such as medication side effects and physical limitations like missing recess or sports. They also may feel lonely or isolated due to living with a rare condition that their friends have never heard of and don't know how to pronounce.

This episode also examines the intersection of chronic illness, physical limitations, pain, and treatment challenges.

Dr. Goldstein Lever and Claudette Johnson discuss how there is an increasing recognition of these very significant issues facing young people and of the importance of mental health overall.

For example, Nationwide Children's Hospital has a campaign called “On Your Sleeves,” which focuses on really giving a voice to mental health issues. The hospital also has an innovative program where Dr. Goldstein Lever serves in a full-time role as the team psychologist in the Department of Rheumatology.

Want to learn more about CARRA?

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) was started by a small group of dedicated physicians working in pediatric rheumatology. CARRA was established with the mission to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases. 

Since the very beginning, CARRA researchers have partnered with patients and families at every stage of research.

From humble beginnings in 2002, CARRA has grown into an extensive collaborative research network with 600 members at more than 120 institutions. CARRA has built the largest observational multi-center Registry for pediatric rheumatic disease in North America, which has over 13,000 patients. CARRA also operates two biobanks – one in the United States and one in Canada.

Learn how physicians can join CARRA and how patients/family members can get involved with CARRA. 

Transcript

Mental Health – Part One

Claudette Johnson: [00:00:00] Doctor’s appointments, treatments, endless tests, and medications. This is life for a kid with a rare autoimmune disease. Handling it all, on top of the struggles every teenager faces is a lot. My mom used to say I've been poked with more needles than most adults, and that it makes me tough.

Despite my tough skin and how supportive everyone in the hospital is, it doesn't change the fact that missing tons of school, sitting out sports, having none of your friends understand what you're going through – let alone how to pronounce your disease – can be lonely and mentally challenging.

So, that is why we're going to dedicate two episodes to Pediatric Rheumatic Disease. In Mental Health Part One, we take a look at this pervasive problem. In Mental Health Part Two, we’ll have a conversation about solutions. Welcome [00:01:00] to the CARRA podcast.

CARRA is the childhood Arthritis and Rheumatology research Alliance. We are doctors, researchers, and patients all working together to prevent, treat, and cure pediatric rheumatic disease. My name is Claudette Johnson, and I'm your host. 

To help us understand the challenge of mental health and rheumatic disease, we begin with Dr. Alana Goldstein Lever, who is a pediatric psychologist at Nationwide Children's Hospital, and an assistant professor at the Ohio State University. Dr. Goldstein Lever is a team psychologist in the Department of Rheumatology, providing services for children, teens, and young adults with rheumatic diseases. Hello, Dr. Goldstein Lever. Thank you for joining us.

Dr. Alana Goldstein Leever: Hi, Claudette. Thank you for having me today. 

Claudette Johnson: There's so much talk these days about mental health in kids and adolescents. What are the most prominent reasons for this uptick and concern for mental health these days? [00:02:00] 

Dr. Alana Goldstein Leever: I would say that we have we have seen an uptick in mental health issues in the context of Covid certainly as we dealt with pandemic conditions. You can also regard this as a mental health pandemic that we've been through. Kids were missing the opportunity to socialize with their peers in the context of Covid. They had educational deficits occur because they weren't able to go to school. They weren't necessarily able to get the support they needed for their learning.

They weren't able to have normalizing experiences that help support their coping. We also know that even before the pandemic, that there has been rising rates of anxiety, depression, suicidal ideation in youth. There is also a culture that often tries to quiet these concerns. And I think now we are finally at a place where we're raising more concern for mental health, where we're talking about what we didn't talk [00:03:00] about before.

I know through my hospital at Nationwide Children's Hospital, we actually have a campaign called “On Your Sleeves,” which focuses on really giving a voice to mental health issues and I think that, you know, we are not alone in that at our hospital. Globally and in the U.S. we are just seeing that there is increasing recognition of this very significant issue that we have facing young people.

Claudette Johnson: Let's step back a little bit. As a pediatric psychologist, you are on the front lines of dealing with these mental health issues. Tell us a little bit about what you do. 

Dr. Alana Goldstein Leever: I’m a pediatric psychologist at Nationwide Children's Hospital in Columbus, Ohio. My role is to work with children, adolescents, and young adults who are affected by rheumatic disease.

I specifically work in a rheumatology clinic. I work with [00:04:00] patients admitted to the hospital with a rheumatic disease, as well as patients who are affected by an autoimmune illness that affects their nervous system – so a neuroimmune illness. So, I am able to work with patients in the context of their medical care.

When they're seeing their medical doctor, I'm also able to see them in the context of those visits. I see them independently for therapy services and I also consult when they're admitted to the hospital to provide support during that very stressful time. So that's a little bit of a nutshell of what I do.

I also provide supervision to psychology trainees who are learning about how rheumatic disease impacts young people and help them so that they are able to themselves provide such services. I do research as well, so I focus on integrating psychological services into Rheumatology care as well as [00:05:00] pain management and my line of research.

So that's a little bit of what I do, but I know today we'll be discussing more so the clinical end or the patient-facing parts of my role as a pediatric psychologist. 

Claudette Johnson: You mentioned you treat pediatric patients with rheumatic diseases. Why do you think that it is so important or that these patients are especially vulnerable to mental health struggles?

Dr. Alana Goldstein Leever: I think we need to start at a place that it is hard being a kid – just that in and of itself. So navigating going to school, peer and family relationships just developing your own sense of identity – that in and of itself is very challenging. And then on top of that, we add managing of rheumatic disease, which requires coping with doctor's visits, medication for those listening, they know that's ranging [00:06:00] from injections to multiple oral medications. You know, we know these medications can cause problematic side effects at times, but also there's limitations that we can have as a result of a rheumatic disease. So, all of these reasons make it even more challenging to be a kid, to be a teenager and to also manage, manage a chronic health condition like a rheumatic disease. 

Claudette Johnson: So you've talked a little bit about side effects there. I wanna ask, do you find that these mental health struggles are more driven by the disease itself or the disease's impact on the pediatric patient's day-to-day life? 

Dr. Alana Goldstein Leever: So I would say there is complexity here. We have kids that are facing significant stress of being diagnosed with an illness, having an exacerbation or a worsening of their illness, or taking these medications that they don't want to take. So, that's difficult from a stress [00:07:00] standpoint. Then, we can have the addition of medication side effects.

We know medications like steroids can impact our mood in particular, but, in in addition to all of those factors, we also know that it can just, the fact that we are dealing with a disease that causes pain or causes discomfort in our body can also lead us to feel more down, more irritable and have more impact our mental health. So, it really is very much we have an increased likelihood because we're dealing with all of the coalescing of all these different factors coming together. 

Claudette Johnson: For a kid with a rare disease, there is not much of a community. I mean, this child, like they already feel apart from their friends in school because of this disease, and then let alone the fact that it's rare, it can be hard to find [00:08:00] other people to relate to them when growing up. How are you seeing this sort of loneliness impact patients in our care or community? 

Dr. Alana Goldstein Leever: I would say that the social impact can be quite significant. I will also say that there are some patients who tend to fare just fine, that they're able to find some avenues of good support in organizational resources through their community in different ways, or just have a really strong support system that helps them.

But there are also patients who are just feeling very lonely in this, very isolated. So, this is a very unique experience for a lot of kids, like you said, because this is a rare condition. There might not be other kids in their class who are dealing with this. Also, just as a kid we, we might not want to ask for help for things.

So it can be, you know, isolating in the sense of at school we might need help or some, a [00:09:00] adaptations to help us to navigate our situation, you know, our classroom, our daily schedule, and we might not want to ask for that. We might feel that it's just really hard to keep up with our peers that, you know, physically for a kid at recess.

It may be that they feel left out because when the kids are playing tag, you know, their arthritis is impacting them and it's not fun having to sit down and, you know, take a break in the midst of recess. Right? Or it's just so frustrating that they can't keep up with the other kids. So, I see this impact kids in different ways, but I think it's very fair to say that.

This loneliness, this isolation that can happen as a result of a disease of having, especially a rare disease is significant. 

Claudette Johnson: So just to talk about specifically the teenagers experience with mental health and having a disease, what do you find interesting about that? 

Dr. Alana Goldstein Leever: I would say for [00:10:00] teenagers, for adolescents with rheumatic disease, they are at an increased risk for having trouble with anxiety and mood problems. Sometimes these issues will co-occur with their rheumatic disease or their treatment like we've discussed already, but they might also represent a separate issue that still impacts their coping with the disease.

What comes to mind for me is, you know, it becomes pretty difficult to adhere to treatments, especially complicated or complex treatments, when you're really depressed, you're unmotivated. And when treatments aren't followed, we might start getting more of those physical symptoms that make it hard to do the things we like to do, which can make us feel more depressed.

So it becomes this, you know, this circular pattern that we have going on here where we're kind of getting stuck in this place where we're not able to care for ourselves in terms of disease, but also our mental health is worsening as well. Another concern that [00:11:00] I commonly see in teenagers is struggling with needle fears and phobia.

I see this in in younger kids as well, certainly. But these are patients that are dealing with needles since such a young age oftentimes, or they're kids that, you know, were otherwise healthy and get diagnosed with a rheumatic disease. And we can also see a similarly that these fears develop and potentially even a phobic reaction, a more significant anxiety in relation to the different medical procedures they have to undergo.

Particularly the injections the lab draws, they have to get the IV placements for infusions. So, I would say that, you know, that yes, anxiety and mood problems definitely are the most common referrals that I receive for teenagers that are dealing with a rheumatic disease, but that might specifically look like a specific needle fear or phobia. 

Claudette Johnson: [00:12:00] What are some signs when, with your patients you're looking for specifically to tell you there could be possibly a problem? 

Dr. Alana Goldstein Leever: That's an excellent question because you wanna know whether these concerns are in need of more of support. I would say, you know, we want to consider whether the problems we're having are pretty typical for your age or for your child's age.

How frequently these problems are happening? How long they last, when they occur? So is this something that, you know, for example, maybe once a month I find that, I get a little bit down, but I'm able to do something fun and that kind of snaps me out of it? Well, I'd say that sounds pretty appropriate, right?

We all have feelings, we all have negative emotions that occur, you know. Even more than, you know, once a month necessarily. Right? But if we're finding that we're having more of a persistent pattern, like we are feeling sad much of the time, that it's harder to feel [00:13:00] happy. For example, when, when we're less motivated, it's harder for us to do the things we usually do and that we're able to be productive with.

Those might be some signs that might be good to check in with someone. In addition to that, like as we discussed needle fears or, you know, that kind of anxiety. If you're getting nervous the day of your appointment, but you do all the things, you ask questions of your doctor that you have, that you need to, or you're able to get your labs drawn even though you don't like it.

That's super appropriate. But in comparison, like let's say you avoid that appointment because you know, you're just so anxious about going, or, you know, you are struggling to answer the questions that your doctor asks you, you shut down or become tearful. You are pushing away the technician if you're getting a blood draw and you're a teenager again, then I would say that maybe we're having more difficulty here and, and thinking about [00:14:00] all of these, all of these different points. So developmentally, is it most appropriate for your age as well as the frequency and duration of the problem can be really helpful in, in figuring out whether this is something that we should seek a little more help for.

Claudette Johnson: And that helps specifically if a teenager is feeling that maybe they're not doing so great. What do you think is the first step that they should take in order to receive this professional help? 

Dr. Alana Goldstein Leever: I would say telling someone, so one of the first things that we need to do is acknowledge that there's a problem.

We can't address the problem if we don't know it exists. So, talking to someone that you trust, you know, reaching out to someone who you feel like, can be helpful in this situation. If you can reach out to an adult, a trusted adult, that’s great, and it doesn't have to be a parent or a caregiver.

It can be a [00:15:00] teacher, you know, it could be someone who you feel like you could feel comfortable enough to open up with. I would say once, you know, we're more aware of this situation, I would encourage, you know. Trying to find a mental health support. So this could look like utilizing resources to get linked up with someone.

So contacting your primary care doctor or you know, your family, your parents being able to do that. There's some good resources nationally like “Psychology Today” where you can type in your zip code, you can type in your insurance information and get a list of local providers that may, may be accepting patients.

There is also the option of looking on your insurance website. So, you know, looking up your insurance plan and who's covered because I know for a lot of folks finances are going to have an impact on their access to care. But yeah, I would just recommend working with someone who understands, at least, [00:16:00] at the very least, how to work with children and adolescents.

So looking for a pediatric or child provider, I would say would be very important. It is a little more challenging to find someone who specifically works with kiddos with rheumatic disease. So I would say it's a bonus if you can find someone who works with patients who deal with a chronic condition.

I would say that would be a little bit more likely to come upon versus someone just like me who specifically works with rheumatic diseases in particular. But those will be my advice for first steps and for parents, I would just say, you know, for caregivers, I would recommend if your child, your teenager, voices, that they're having some difficulty, I would just say the first and most important thing is just listening. You know, not trying to fix the problem in that very moment. Just being very present, you know? Making sure and checking in on your understanding of where they're at. Just showing them empathy and showing them [00:17:00] that, you know, normalizing their difficulties and that you get it, that this, you know, the challenges that they've been having, that is the most important step to be able to get your child, your teenager, to feel more comfortable that they are more open to fixing the problem, to getting some help.

Claudette Johnson: And what are some solutions that you've seen out there? Make a difference in the child's life. 

Dr. Alana Goldstein Leever: We have some nice research that supports using behavioral treatments to manage mood and anxiety. So to start with, I would say, let's say you're having some mood problems even before you seek help. A, a first step you could take is trying to increase your activities and interact more with other people.

What we know about depression, sadness is it is it makes us reduce our engagement in the activities that we generally like. We do less, we stay to ourselves, we don't [00:18:00] activate to the behaviors that help us as much. It might be harder to brush our teeth in the morning, to take a shower, to make plans with friends 'cause we just don't have that energy in us.

Which in turn makes us more sad, right? If you're not doing what you like, you're not gonna, you're not gonna feel as happy. So this technique we call behavioral activation. It, it tells us to activate, to keep a schedule, to engage in our daily routine activities, to do the stuff that's fun for us.

Even if it doesn't feel as enjoyable in that moment, it eventually, with practice, as we continue to do these things that we typically do enjoy, we start to cheer up a little bit. You know, you find yourself smiling a little bit more when you. You know, break out the paints and start painting again. Or maybe it's just you make plans with a friend and at first you're going through the motions, but eventually you find that you have a lot of fun and you kind of forgot about feeling so [00:19:00] sad for a little bit.

But we're just trying to reverse that cycle that started in terms of that downward spiral that we can see with depression. I would say similarly with anxiety there's, we have some different techniques that we can use for management. We can learn how to calm down our bodies, but most importantly, focusing on facing our fears or exposing ourselves to this, to the scary stuff, the stuff that we've been avoiding can be one of the most helpful things.

We don't have to do it all overnight. It might be that we're just trying to do it a little bit at a time gradually. I like the example of, you know, when we think about jumping into a cold pool, if we jump in full on, you know, belly flop, that pool's gonna feel really, really cold at first. But, you know, if you're able to walk in down the steps [00:20:00] and gradually get into that water, and once you're sitting in there for a while, you get more used to it and you, you acclimate, you get more comfortable in that cold water situation. So that cold water will be that scary thing for you, right? But we wanna gradually get ourselves doing some of those things that make us uncomfortable so that it becomes easier so that we can make new memories where we feel.

That is where we feel more competent, more capable of conquering our fears. I would also say like many of the things that help with our anxiety and mood can help with managing pain because something I know that we've mentioned just a bit on this podcast today was that, you know, the physical discomfort of our disease can have an impact on our mood and anxiety and vice versa.

But, you know, getting active while also pacing ourselves, you know, being gentle with our bodies because we have a disease that can impact our body significantly. So, you know. We wanna be thoughtful of, you know, if you're trying to [00:21:00] activate and do these more active things, that we're taking some pace breaks that we're, you know, being able to make sure that we're not overdoing it, which is gonna make pain worse and might also set us back with our mental health.

Staying distracted and relaxed or also key points here they can help with managing our pain as well as. You know, helping with our anxiety and mood as well. But just keeping our mind focused on the things we enjoy or those things that are productive for us can be really, can be really helpful in all these different aspects of our global health.

Claudette Johnson: So activation helps with the disease and with mental health. I find that very interesting. Yeah. I wanted to ask if you could get one more message across to our care listeners today, what would it be? 

Dr. Alana Goldstein Leever: Oh, I would just say that you know, you're not alone. I think for me, as a provider who specifically works with young people that are facing rheumatic disease, I think that's something I [00:22:00] often hear is that just that feeling of being alone in this. I see many, many patients who are facing these same struggles and I think I have that advantage of understanding how not alone you are. But I think trying to get your self-support when you need it is such a vital part of managing your disease and not just the physical part. You know, thinking about how your mental health, how your stress level can also impact your disease and vice versa.

Claudette Johnson: You talked about doing virtual sessions with patients today strikes me that being able to do virtual visits with doctors can help with access to mental health. 

Dr. Alana Goldstein Leever: Absolutely. What I find is that being able to use telehealth really can open up access to care. So for patients who have transportation difficulties, it really allows us to provide the same care. I will say for younger children, I find it's more of a challenge. So having a provider be in person, you know, able to interact in the office, really makes a difference with a younger child or a child or a teenager that that just prefers in person.

You really need to listen to what the preference is of the family and patient as well as, you know. Just how comfortable you feel with that modality because some folks just really feel averse to it. They don't like it. They like to see a person face to face, and I get that. So I offer both for patients so that you have that ability to really choose what works best for you.

One caveat I'll give is that for a lot of. Folks, they might not have consistent access to internet, so it, it might make it a really challenging experience. They might have some internet, but it's not consistent or not at all. So that might make it hard to have a private quiet space to be able to have a session.[00:24:00] 

Or if a home doesn't feel like the safest place for you, then you know, you might not feel as comfortable opening up via telehealth. So I would just say it depends on the person, but it has certainly opened up. A different avenue of reaching patients, which is always the goal that, that I have, that, you know, I have in my practice to be able to offer just more availability 

Claudette Johnson: Where you work psychology is integrated into the care of a patient. How does that work? And what if a family listening doesn't have access to that kind of resource? 

Dr. Alana Goldstein Leever: The way that our, our model of care works is that a psychologist, so my, it would be me works with patients alongside physicians. So we are able to allow patients access to meet with a psychologist on the same day as their medical visit, even potentially like co-occurring.

So I could meet with a patient alongside the rheumatologist so that I can hear. What are the disease updates? How is their pain management going? [00:25:00] But also, you know, be able to work with them a little bit on my own and independently on more of the mental health aspects. We do mental health screening as part of their routine care that we're, we're specifically rolling that out with our lupus patients and we're hoping to expand that out.

Mental health is addressed right alongside disease. And you know, that's really how, how I think it should be because that allows for more of a complete plan of care and a more cohesive treatment plan that addresses all the different parts of who you are, right? We're not just looking at you as a physical being with as disease, right?

You like you are all these things. You are someone with mental health, with this identity outside of. This medical system, and we wanna represent that. For those of you who don't have that kind of access to care, I think that just making sure that you're your own advocate and you're speaking up for what you need.

So whether it's with your rheumatologist, with your primary care doctor, you know, speaking up about having [00:26:00] these difficulties can be a helpful step. Like we discussed before, a child or adolescent reaching out to their caregivers, reaching out to someone in their immediate circle who's able to help get you linked with some mental health support, I think would be my best suggestion.

And again, like, you know, in working with CARRA and other folks, we're, we're, we're hoping really to champion this kind of a model so that we can have other, we can have more of this more of this kind of care being offered across the us. So this isn't just something that we're offering, you know one institution, but this can be something that is a little bit more commonplace for folks to be able to have increased access because they're dealing with this rheumatic disease that really does make them more.

Makes you more vulnerable to have some difficulties with your mental health. 

Claudette Johnson: Now I'd just like to ask a little bonus question here. Sure. You yourself must have a pretty [00:27:00] stressful job. I was wondering one thing you do outside of work that helps keep you mentally healthy? 

Dr. Alana Goldstein Leever: That's a really good question. I would say that for me, I really find that my job can be stressful at times, but I do find that my job really fills me up. So I'm able to help patients when they're at this difficult point in their disease and their mental health and, and helps support them towards, you know, making things better, which really does feel good. But you're right, like with any job that you know, you're doing nine to five and, and, you know, it’s gonna have an impact on your health. I would say for me, like taking walks is one of my go-to’s. I'm from a walking family, and we all find a benefit from that. That's really helpful.

But I also really enjoy painting. I think I gave that example of something you can [00:28:00] activate with, and that's because for me painting is something I really enjoy. So I do it with my kids, but I also do it on my own. And it's just a really good way to kind of get out your feelings and without even talking about it, a way to express yourself. I think just finding what makes you tick is what I recommend for others, but for me, that's definitely the things that I find the most comfort and bounce back from after a long week.

Claudette Johnson: Thank you so much for joining us. Dr. Goldstein Lever. 

Dr. Alana Goldstein Leever: Thank you, Claudette.I appreciate it.

Claudette Johnson: The CARRA Podcast wants to hear from you. If you have a topic for an upcoming episode, head over to our podcast page on the CARRA website and leave us a message through a SpeakPipe link. We might play your voice on a future show and we'll do our best to answer your questions. Finally, we encourage you to share the CARRA Podcast with friends, patients, and anyone else interested in learning more about the incredible work [00:29:00] of the CARRA community dedicated to creating a world free of limitations for children with rheumatic disease.

This podcast is produced and edited by Emily Newman. Our music is by Jonathan M. Horner. Thanks for listening.