Caroline Cortezia, MS, CCLS, UCSF’s supervisor of child life services, describes how a trauma history informs behavior and impacts physical, mental, emotional and social health. She explains how the pandemic has increased toxic stress in the pediatric population, especially in kids with behavioral disorders, and describes simple steps providers can take to relieve anxiety and avoid re-traumatization in these patients. Bonus: an autism resource to share with parents.
thank you very much for joining me today. So my topic is trauma informed care of behavioral patients and some of the learning objectives today. Um I hope that you come out of this presentation, being able to identify some key trauma related concepts. Um really have a focus on trauma informed care, evaluate how trauma affects the behavior, recognize some tips for de escalation. Um be able to advocate for your patients on the spectrum and really examine some approaches to support patients during office visits. A few things to know about me. Um as how that stated, I'm a certified child life specialist. I've been here at Benny off in san Francisco for 3.5 years. I also teach a course on trauma at Mills College. I relocated here from Miami. Um I worked at Nicholas Children's Hospital and um and some other hospitals in south florida and that's really where I got my passion for the behavioral population and specifically was able to complete some research studies and some lean projects in really being able to improve the care of patients in the spectrum. I wanted to start this presentation by talking a little bit about pre pandemic, what was the state of pediatric mental health disorders. So in 2018 to 2019, the Kaiser Family Foundation had put out a study that talked about um what was the current state of pediatric mental health disorders and it showed that between the ages of three and 17 years old, we had 5.2 million Children suffering from anxiety disorder. 2.3 million suffering from depressive disorder and 5.3 million suffering from attention deficit disorder. So, you could see that the state of pediatric mental health disorders was already pretty intense pre pandemic. It was about um October and November of 2020 that the Kaiser Family Foundation um reached out to parents and asked them how was the current mental state of their child, whether they had a history of mental health issues or um they just they were coping with the pandemic. And uh this study showed that parents were reporting an overall worsening of mental health and emotional health. There were elevated symptoms of depression, elevated symptoms of anxiety and elevated symptoms of psychological stress. Mm hmm. In 2020, we started looking through um what was already the limited availability of psychiatric beds and what were the state of those psychiatric beds availability during the pandemic? All facilities had to start decreasing the number of psychiatric beds because of the the the surge that they had in COVID-19 patients. So, a lot of the beds that were already available for patients were being repurposed for COVID-19 patients also, a lot of different hospitals had to close in patient psychiatric units entirely because of financial heart hit that was caused because of the pandemic. So this starts painting a picture of the stress cycle that Children and young adults have faced during this pandemic and continue facing. It was a study that was brought upon Harvard the child development center at Harvard started thinking about what was the impact of the stress that Children were facing with their particular child development. So the study really demonstrated that Children were facing and seeing their caregivers either having loss of their jobs or having to work from home, having their families and community members affected by the COVID-19 virus having unequal access not only to education, but to a lot of things in the community that we're helping them cope and having to be faced with racial inequalities and act of violence. We also had a change in demand and supply. So there was an increase in demand for services from our patients in the community and an ability from us to be able to supply these demands. We saw caregivers and Children having movement restrictions, loss and income in their family, being concerned about COVID-19 and returned in the hospital setting, we're having supply chain disruptions, having um redeployment being face full of healthcare workers, um losing their lives And having a high capacity in all of our hospitals because of the COVID-19 care. So, a lot of stress being placed on medical professionals as well. And in 2021, the Child Mind Institute came out with a report that was talking about the impact of the COVID-19 pandemic on Children's mental health. So it showed that consistently during the pandemic. Certain subgroups actually recorded higher levels of stress and symptoms of mental health disorders, particularly anxiety and depression, regardless of their environment. And these groups that showed this increase in um having this impact in these areas where women, racial minorities, particularly latin, X people, people with pre existing mental health problems and parents of young Children. In addition, um we started looking over that data and really looking about how that particularly was affecting Children and adolescents. So like adults, Children that lived in urban areas and who families were experiencing economic uncertainty, um, we're often exhibiting signs of anxiety, depression, attention use issues, and sleep disturbances. Child Mind Institute also looked further to see what was the impact of this pandemic, particularly taking out one of the behavioral populations and looking at autism spectrum disorder As we know. Um Children on the spectrum usually have a variety of different services that help them be able to cope with their environment and be able to show up the best version of themselves and their interactions. So, in a survey of caregivers, it showed that 64% of caregivers reported that the lack of services that they were receiving, we're having a severely or moderate impact On symptoms and behaviors displayed by these patients, 80% of those who have preschool aged Children on the spectrum said that the disruptions were too extreme too and bringing extreme to moderate stress and though many therapeutic services were being continued via telehealth, most survey respondents stated that they were not taking advantage of them after a month and they were reporting minimal benefits when taking advantage of them. So this leads us into thinking if we already knew that a lot of systems that we had in the United States that support the mental health population, the behavioral population were already impacted before the pandemic. And now with the pandemic showing all of these deficits, What is the long term impact that this pandemic is having on Children that display behavioral issues and are part of the mental health or behavioral population? Well, We're not able to really state the long term impacts on what they will be as COVID-19 is a unique global phenomenon, but historical presidents can really show us what are the specific characteristics that put Children at greater risk for psychological deficits during and after a pandemic. And these characteristics include having a pre existing mental health disorder, having experience of previous trauma being food insecure or economically vulnerable and experiencing a disproportionate disruption to one's daily schedule. This leads us into thinking about the overall impact of toxic stress. What is the stress that this population already goes through by being part of the mental health population and the stress that this pandemic is causing in addition to the stress that they have already had. So it's important to think about what is toxic stress and toxic stress can be defined as the kind of experiences that happen, particularly in early childhood that can affect the brain and architecture and the chemistry of a patient. These changes cause actually changes to the brain and can have damaging effects on learning on their behavior and health. If you think about toxic stress and the different types of stress that they're out there. For example, positive stress, positive stress can cause a child's rate to increase, have mild elevation and stress hormone levels. Serious stress can lead to temporary stress response, but that can be buffered by the support of relationships that you might have in your life, toxic stress speaks on the prolong gated activation of stress and the response systems and the absence of these protective relationships. So I can give some examples. For example, a child coming into a clinic visit and initially just having to meet some new people that can cause some positive stress, but having their caregivers try to help them cope through it will help remediate some of the stress. A child that is faithful to death in the family can be quite impactful and cause a lot of the stress in a child, but by the family, child life specialists, social workers, case managers helping the child navigate through that stress. It leads the child to have a tolerable amount of stress that they can face. Now, toxic stress. I recently came across a patient, a patient that was an autism spectrum, a patient that was a teenager on the autism spectrum that came into our hospital setting because of self injurious behaviors. So he was actually causing physical harm to his body and was in our hospital for a very long time and we were trying to define what was causing some of those self injurious behaviors and we come to find out that there was an underlying um tone to all of the things that this patient was going through. This patient had a father that was um abusing the patient's medication, the mother was being physically abused by the father and in return, because of the mother not being able to cope with the things that were happening in her life, she was becoming neglectful towards the patient. So just understanding that toxic stress can come in a lot of different levels, can have a lot of um family factors and social factors that can lead a patient to display behavioral issues because of the things that are happening in their life. So behavioral issues sometimes come upon because of manifestations of this toxic stress that a child might be going through increasing your awareness about trauma and really understanding adverse childhood experiences. So Aces really helps you understand why a patient is becoming anxious or disruptive. The impact of trauma on a child's brain can really lead them to manifest and to manifest in a lot of different ways. You can see that the impact of childhood trauma can have an impact on a child's cognition on their brain development, on their physical health, on their emotions, on their relationships and on their mental health. But particularly you can have a big impact on their behavior. A child that has been exposed to trauma will demonstrate poor self regulation. Be socially withdrawn at times, demonstrate aggressive behaviors. Poor impulse control, risk taking, sexually, risk taking can lead to adolescence pregnancy and can lead to drug and alcohol misuse. So really putting trauma into proper perspective and thinking about as you're coming across these patients, that not might not be coming particular into your setting because of you knowing of the trauma that they've been through. But the trauma that we might be putting them through medical trauma during the interactions and thinking about the larger picture, what could be happening in that child's life and that caregivers life really help you start shaping the interactions that you have with your patients and your caregivers. You can see in this graph that childhood trauma and mental health disorders have a lot of overlapping symptoms. So a lot of these behaviors that you might see patients displaying during interactions being noncompliance, being afraid to come into hospital and clinic settings not being able to follow instructions being irritable, um defiant. These could be all different reactions from the child, not only being afraid of what is going to happen to them medically and physically, but it could be manifestation of different things that are going on in their body and because of their brain manifesting all of the trauma that they saw. The important thing is really focusing on how can you support thinking about concrete plans to actually be able to support the patients the best that you can, especially the pediatric behavioral population. So the first thing is just finding knowledge like this one. Be able to educate yourself. So you can start realizing that there's a huge connection amongst trauma behavior manifestations and things that might physiologically happen to a child because of that trauma. Being able to recognize the signs and the symptoms. So being able to look through your clients, the families, the staff, yourself and be able to recognize what are some signs that come about because of trauma. And then being able to respond in a way that not only integrate knowledge about trauma, but changing your policies and your practices, your procedures and the way that you interact with these patients and caregivers to really be able to respond to them in a manner that makes you sound like and be an ally to them. And ultimately thinking about these medical interventions that we're doing to these patients which are much necessary. But the way that we're going about these medical interventions, are we helping the child to become more traumatized? Are we? Re traumatizing them? So an example a patient that might come into my hospital setting that could be displaying aggressive behaviors, a behavioral patients that might have a co occurring mental illness that's already coming with a lot of traumas is the best option for us to interact with them by placing chemical and physical restraints. That could be an example of a re traumatization or a patient that's having an I. V. And the way that you're going about giving the ivy or giving the patient a shot. Are you thinking about what is that the trauma informed ones and be able to do these much necessary medical interventions in a way that are not so evasive mentally and physically? Um Most of us in hospital settings get training and through C. P. I. The crisis prevention institute. So what I really like about C. P. I. Training is that it really makes you think about the patient in different lens and think about what happened to the patient instead of saying what is wrong with the patient. So it's really important to look through these trainings and think about just how you go about engaging with patients. Are you being empathetic? Are you respecting their personal space? Are you focusing on the feelings that the patients are sharing with you? Are you being able to set limits and allow time for decisions and allow time for the patient to speak and knowing that creating meaningful partnerships are important. You're not going to be able to do this work alone, trauma informed care. Really talks about a whole entire group of staff that you're going to be able to engage with to be able to help you prevent some of this disruptive behavior. Um, potentially stay away from triggers that might have the patients act out behaviorally. If we focus in on nachos and spectrum disorder, you can see that um the prevalence has increased. Um, it was just um in the beginning, in the end of last year in december that the CDC demonstrated that One in four, Children in the United States are affected by autism. There also facing disparities, just like any other population. So the prevalence of autism amongst hispanic Children is lower compared to wider black Children. And black Children are usually identified with more severe forms of autism. And that is just because they have the tendency of being able to evaluate Children a little bit later. Um, when um they have deficits in their community compared to white Children that usually get um be able to have evaluations done earlier. There's also this frequencies when it comes between um gender. So boys are four times more likely to be diagnosed than girls. And there's a lot of discrepancies amongst race. Autism is a developmental disorder. So the court features really vary by age and developmental level. So you can have a toddler that um, it has single words and has superior intellect all the way to an adult that is nonverbal that has an intellectual disability. So really thinking about autism and a spectrum and not thinking that it's linear, Right? So there's not such a thing as less autistic or very autistic or high functioning or low functioning. Being aware of the words that you use, especially in front of patients that are on the spectrum. Um, terms like high functioning asperger's are often outdated. So really thinking about focusing on the strengths of the patients and thinking about how do the patients want to be identified as the same way that we think about pronouns, we should think about identity first language. So, really thinking about how is it that this patient identified themselves? Is it autistic? Is it on the spectrum? Or is there another way that they would like to be referred to? Thinking about the gender inequalities. Um, like I said, females are less likely to be diagnosed. So a lot of times you might come across caregivers that might have a little bit higher needs if they have a female on the spectrum, just because of the lack of interventions medically that they've had. And um, it happens with males as well, but a lot of females do a lot of masking. There's a lot of research that's out there that really shows that um, females can actually understand that there's a social reward by doing certain things, so mimicking behaviors, imitating gestures, forcing facial expressions which leads them into not being able to have a diagnosis sometimes done because they're able to mask some of those qualities that usually go along with patients in a spectrum. And they are the patients that um are in the spectrum really experience disparities with diagnostics early interventions. They might also have a lot of things that are going on that can cause them to have a lot of trauma. So putting that into proper perspective when you're coming across these populations, it's important to identify that patients in a spectrum usually have freaking form abilities. So you'll see a lot of these patients suffering from seizure disorders, G. I disorders, sleep disturbances, eating and feeling challenges. So it's important to think that sometimes it's just not the behavior that's manifesting because of trauma. It could be behavior that's manifesting because they have physically something going on with them that at times they're not able to communicate and that might be identified because of some of the barriers that they might face because of behavioral issues in the hospital settings. So it's important to recognize and treat anxiety and autism. It was just in 2016 to the journal of pediatrics first um created guidelines for recognizing anxiety and autism. A lot of patients in the spectrum have trouble assessing and expressing how they feel and you'll start seeing that you're able to see some of the anxiety that they display because they might display this anxiety through stemming. So stemming are self stimulatory behaviors, reputation of physical movements of sounds, movements of objects that can actually happen in some patients in the spectrum. And at times you're able to recognize how anxious they are because of these stems that they're manifesting. I want you to meet Matthew Matthew um, wants people to know that he's in the autism spectrum that he's a young adult that he stems when he's happy, but he can also stem doing during stressful times. So often when he goes into clinical settings or hospital settings, he displays some aggressive behaviors and some stems by hand flapping and he's trying to let people know that something is going on and he doesn't feel okay when you're coming across um, patients, it's important to really change the way that you're communicating, not using that. I not only using that identity first language, but really focusing in on the strengths and the challenges that you're going through. Not only our patients actively listening to what you're saying, but caregivers also appreciate you being able to focus on what are the patients strength and what are the patients challenges. Like for example, if I'm in the office visit and Nolan comes through and I see that Nolan is having difficulty following some district some directions and becoming frustrated showing some behavioral issues. So I could say something. For example, if I offer him a toy bus, I'll let the mom know I love the way that Nolan is able to interact with the bus. It seems like he can sing the song wheels on the bus that he's listening to and even identify some colors and some shapes on the bus. But I do see that he displays some speech delays and which really makes him frustrated when he's trying to communicate with me and when the doctor tries to place the medical, um, let's say a blood pressure cuff on Nolan, he becomes very frustrating and becomes, and he became, begins biting. So what are some tactics that were used in the past when were placing a blood pressure cuff on Nolan that has helped him in the past? So it changes the way that you're interacting with the family and it changes the way that you're interacting with Nolan by highlighting his strengths. I'm gonna share this. Um, I have this um, slide send out in addition to my slides that really helps you start considering what are the different things that might be happening to a patient and really trying to identify how to best assess them tips for more positive office visits. You might be wondering now that you've gotten a little information about autism and a little information about trauma and trauma informed lens. Um, it's important to have a couple of tips for you to know how to best interact with these patients. So, usually pediatric patients we know are very anxious about their doctor visits, the possibility of being separated from their parents, the fear of the unknown or even thinking about having to get a shot, which they're used to getting an office it visits can really trigger a lot of anxiety. So for Children, the spectrum, the spheres also get escalated because of possible sensory issues aversion to physical contact and changes in routine can really lead them into having behaviors that make it challenging for all. So one of the main things um that is positive about making changes in their environment is by reducing negative experiences in a medical setting. We actually allow for individuals in a spectrum to receive appropriate medical interventions, which often doesn't happen because of their behavioral issues. It also helps them in a long time in the lifetime. If they remember that small positive interaction, it can lead them into wanting to have more interactions and being able to come into the hospital setting and making it more positive and productive. So it's important to have pre screening questions, asking critical questions at the time of scheduling. So maybe using your schedule, ear's to be able to support you with that if you have a schedule er but asking caregivers, sometimes they're not open and so um forthcoming with information that the patient is in the spectrum because they're afraid that that might change the kind of care that they get. So asking does the child have a developmental behavior diagnosis and my stash you know about does the child have any special communication needs? Does the child have difficulty coming to the doctor, a dentist visit haircut or similar appointments, asking follow up questions and knowing that depending on the way that they're answering these questions, you have to build in extra time to cushion that visit to be able to help them be successful. So asking them follow up questions. So if they do have difficulties with changes in routine, what is the time and date that will be best for you to bring your child in? So that would already help the child to have a visit that's within the time that allows them to be more successful. Is your child sensitive to light sound or touch? Those are child react to specific triggers and based on these answers, make small adjustments so you can start with minimizing await time, making environmental modifications, scheduling during a quiet time of the day, letting caregivers know what to expect. So sending paperwork and questionnaires in advance to minimize the wait time, Discussing the specific things that will happen during the visit to help the parents prepare. So letting them know they're going to come in, wait in the way room for 10 minutes. I'm going to have a member of my staff come take the child back with you. They have to go down a hallway. They have to go down five doors come into the office setting and I'm going to start asking you questions and I may have to use my stethoscope and whatever other tools that you're going to be using to just allow them to understand what is going to happen during the visit, asking the parents to bring along appropriate distractions, comfort items, any kinds of rewards and reinforcements for any kind of communication device the child might use and asking if there's specific things that can help the child calm down when they're anxious and giving caregivers tips. So letting them know, there's a lot of books and videos and different materials out there that explain the doctor visit. If you just google visit to the doctor or start looking for different materials, there's a lot of things that are out there that can already help them. Even if it's not a video that shows your particular setting can already give an expectation of what a doctor visit looks like. Social stories are also very helpful for patients in a spectrum. Social stories are stories with pictures and words that show and tell what's going to happen during a particular incident. So these stories can help a child know what to expect and how to behave. So there's a lot of ways that social stories can be created and even social stories that you can find online that will help a child understand what are the different steps of what's going to happen during the interaction. You can also um advise caregivers to practice some of the steps once they know with their child at home. So taking the child's temperature, the blood pressure, having them open their mouth, look into the years and the nose with a flashlight using a toy doctor kit that might have some tools that replicate some of the real things. And it could be fun for the child to play with. And even maybe practice with a dollar stuffed animals. Also scheduled boards. Um, a lot of times patients in the spectrum are used to using a schedule board. So it actually has real photographs of what's going to happen. So getting out of the car, closing a car door, a picture, they're walking into the doctor's office, a picture there breeding the person in the doctor's office. So as soon as they go through every single step, there's an actual little picture there, sometimes digital as well that they can flip and show that there step by step being able to meet their goal. And every time they're able to meet a small goal, they can get a small tree to high five verbal praise or an activity that the child enjoys. So a lot of times caregivers can ask, well what if the visit doesn't go smoothly, right? So um, letting them know, the less they tell their child, the more it can lead to a problem behavior. So omitting information from the child, not letting them know that they're going to go to the doctor's office and not preparing them can actually cause more harm at times. So sometimes doctors office and I have facilitated a lot of these different interventions, especially when I've had my private practice, I will go into the office visit, not the day of the visit with the child and help the child sit in the waiting room doing something that they're enjoying just so they can know that the raiding room is safe and doesn't always lead into something painful or interaction that's overwhelming. So knowing that doing a separate visit, if a child has needle phobia or has difficulty with needles, it's important to separate a wellness visit from a visit that they're going to be getting a shot or having blood drawn and having them know that not every single office visit that they have leads into interactions with nails needles and bringing a list of questions or issues that you want to talk with the child with the doctor. So prompting them to bring questions in advance instead of having to have those answers. Those questions answered during the visit. Some Children um will do well they can go over the order of the visit. So what happens first? What happens next? What happens less? And um some doctors can also at times and have helped facilitate this. Do schedule. Just some visits to meet alone with them just so they can get to know the doctor before they come in and um trying to get slots in a day where waiting times are shorter so they're not in the waiting room. Um when there's a lot of people inside of there and letting the office know what's the best time to have your child visit. So creating a calm and quiet environment as much as we can, eliminate any kind of harsh stimuli that you might have around even allowing them to wear noise canceling headphones or dimming down the lights, adapting care. Um that meaning any kind of noise that might be around or avoiding multiple staff being present, just having a staff that's necessary to be inside of the room under your interactions. Um, if you ever see me interacting with a patient that has behavioral issues, I really bring myself down to a com a soft tone. I allow the patient to warm up to myself when you're examining or doing vitals. So starting out distantly and then moving centrally so they can know that it was already safe to touch their hands when they're shoulder and then coming to the center knowing that the patient might not make eye contact speaking directly to the patient, even if they're nonverbal. And using concrete terms are very helpful as well as using timers. Sometimes I've had doctors even just use the timers on their phone to say this is how long it's gonna take for me to talk to mom, this is how long it's gonna take that you're going to have the blue rubber band around your arm. The tourniquet. If you do this, then you get a break. And ultimately, knowing that sometimes a lot of these traumas dis phobias, you're gonna actually have to have a child. Life specialists help you at least consult with you or somebody from behavioral medicine because sometimes they're just outside of the scope of a regular clinician just being able to engage. So with pain assessment, really thinking about that a lot of times the tools that we use for pain assessment are not optimal for patients in the spectrum because they have to identify their facial expressions, body language, assume that the child has the ability to understand words that describe pain or be able to actually um use a number to describe their pain. So optimal assessments are individualized. They take into consideration past experiences with pain. They're guided by the trauma informed ones. They consider medical comorbidities and the sources of pain and really think about the way that the patient engages with the world and communicates. So ultimately just being understanding, being an ally, knowing that when you're engaging with these patients to say what you mean, that you're at least attempting to reduce sensory input, reducing the pressure in the interaction by reducing the number of options that you give and giving clear expectations. So use your finger to point where your ouchy is instead of a pain scale, asking them to say where it is on a pain scale, giving a lot of different options. So making interactions more limited and giving that time for them to think when you have a neuro diversity, you might have a little um processing deficit that doesn't allow you to be able to respond in time when you have anxiety, you're not going to be able to respond in time. So pausing yourself and allowing at least six seconds in between the next prompt. Playing to their strengths and allowing them to be themselves. So coming into office visit maybe they don't have their shoes on, Maybe they prefer to sit down on the floor if that's something that's safe. Maybe they're bringing an item that um looks a little different than other items but just being open minded and adapting to what feels best for your patients. Want to share this great resource which is the autism response team, autism speaks has wonderful resources if you go onto their website. They have tool kits for professionals. They have a lot of things that have helped collaborate with. But the autism response team is an awesome 188 number that you can actually call. Um They also have that line in spanish and you can ask them anything you're having difficulty with a patient that's coming through because of behavioral issues. Um They need support with getting diagnosis, school, special education, advocacy, adult services, even community activities, if you call them, they're able to at times respond right away for at least give you a response if you allow them a little bit of time. So I shared um as well in my resources, the center of the developing child at Harvard University has a lot of great research on toxic toxic stress. I also am sharing the CP I trauma informed resources. That has a lot of valuable tips for de escalation and gives you information how to become trained in C. P. I. And lastly I'm sharing the Child Mind Institute Children's mental health report that already has great data for how this pandemic has affected this population. And ultimately if you take anything away from this presentation is just knowing that these patients that are in a spectrum these behavioral patients, they're just trying to cope with the world. The best that they can and doing things in their own time and space. So the more that you can just be aware the more that you can be open, the more that you can be aware brings you back to giving them the most that they need. Which is just human dignity during the interactions that you may have with them. Mm hmm.