Tips For Finding A Therapist:
Rare & Resilient Webinar 5
Rare and Resilient Part 5: Tips For Finding A Therapist
Tyler Bradley, Walter Perez, Female Speaker #2, Female Speaker, Caitlin Shneider, Melissa
Caitlin Shneider 00:02
That’s always the norm now with, with virtual presentations, just making sure that you can see what I think you can see. Awesome. Well, I’m so excited to see everybody today, and today is the last session of our Rare and Resilient webinar series. And so today, we’re going to be talking about the process of finding a therapist, and then also wrap up our series. So just as we’ve done in the past sessions, this is just a quick agenda of what we’ll cover today. So we’ll start by just reviewing some possible reasons to consider seeking out therapy. We’ve started to talk about that. And then we’ll dive into the process of finding a therapist and exactly what that looks like. What different kinds of therapists are? What are questions to ask? How does it typically go? And then I’ll open it up to questions from you all, if you have questions from the presentation, or your own lived experiences about trying to find a provider. And then we’ll finish up and just sort of put everything together. After after our month of a series, just sort of consolidate everything and we’ll we’ll wrap up.
Caitlin Shneider 01:13
So we’ll start by talking about reasons to consider therapy. Throughout this series, we really talked about possible coping skills and strategies to be able to turn down the intensity of itch. And throughout that, we’ve really talked about that these skills take practice. We’ve used that metaphor, a couple of times of that idea of running a race, that we have to build our muscles to be able to use them in a time of need. And so it takes practice, to be able to use these skills in the moment as well as also to get benefit from them. And so we’ve talked about that also, this is often easier said than done. Some of these sound very simple, but then trying to implement them can be a little bit more challenging. And so throughout, we’ve talked about that it can be helpful to work with a professional to implement some of these skills and strategies that if you’re trying them and finding, this is not going as smoothly as I would prefer, or it seems like it’s not working. Sometimes engaging a professional can be helpful for that. So that is, has been part of the conversation throughout the month that we’ve been, we’ve been meeting. But I think, as many of you know, there might also be other reasons to seek out therapy. We know that living with a chronic disease, particularly living with a rare chronic disease has an impact on the child beyond the experience of itch and scratch for kids with PFIC. That it can impact a number of different aspects of their life, how they show up at school, how they interact with friends, how they show up in the family. And I will actually be speaking more about this at the conference in May. I’ll be talking about the psychosocial impact of living with a rare chronic disease on the child, but then also on the family. So stay tuned, I’ll say more on this. But we know that beyond… we’ve really focused this webinar on itch, but there’s so much more beyond itch that is a part of living with PFIC. And living with a chronic rare disease in particular. And we also know that we have been living in unprecedented times. The number of stressors that we have faced in the past five years has been much more than has been in the past with COVID, and with all other kinds of stressors. And so there might be other stressors that are not related to PFIC that it can be helpful to get some support from and also things that are related to child development. Things that are behavioral parts of child development that it can be helpful to get support for are often things like challenging behaviors or things that are normal parts of child development that kind of stick around longer than you would expect. So psychologists can often help with things like bedwetting or other developmental concerns. And so those are other reasons why seeking out therapy could be helpful. And as I sort of alluded to, we know and you probably know, well, that PFIC doesn’t just affect the child. It impacts the whole family. And so you can see on this slide, there is an image of a little baby in the center and there’s lots of circles around the baby, which represents the communities that the baby exists within. And we know that the baby has interactions with all of these different things. So they will interact with their family. As they get older, they’ll interact with peers. They’ll interact at school. And so we know that the impact of PFIC from the baby impacts all of these other places as well. And so one of the biggest ways that it impacts others, is it impacts the family as you likely well know. And so everybody can benefit from family, everybody can benefit from therapy within the family as well. Oftentimes it can be helpful for you as a caregiver to seek support for yourself, or siblings might have a hard time coping with having a sibling with a rare chronic disease. So really, everybody in the family can benefit from therapy. And I, I want to address the stigma that surrounds getting mental health services, because I think it’s important to acknowledge that the stigma does exist. But I want to emphasize that it’s okay to need support. As we’ve talked about in the first and second webinars, having a child with a rare chronic disease is a constant stressor. We talked about this in the context of this analogy of a piggy bank, that we have a certain amount of resources, we have a certain number of tokens in here. And having a child with a chronic disease constantly is taking tokens out of your piggy bank, whether they’re physical resources of your emotional resources or financial resources. We know that having a child with a rare chronic disease means that your tokens are getting taken out more frequently and more often. And so any family that is impacted by a chronic disease, particularly a rare chronic disease, is going to have tokens taken out more frequently. And so that would mean that they would might need some more support to be able to put tokens into that piggy bank. And so it doesn’t mean anything about you or your family, or you and your family not being strong enough to handle something or able to handle something independently. But that any family in this position might need some extra support, given the amount of stress that comes with this. So I want to say that, just to set the stage for this, that it is okay to need support. And that families that are parenting a child with a rare chronic disease often need more support just because of the constant stress of it all. We also know that it’s not uncommon to go to therapy, or to get mental health services. So this is a picture of some data from the Centers for Disease Control and Prevention. It’s from 2019. So before the pandemic, but you can see that looking at any type of mental health treatment, whether it was counseling, therapy, medication, almost 17% of kids are getting mental health services, and that’s before the pandemic. And then when we look at five year trends, so from 2016, to 2020, so during the height of COVID, the number of kids diagnosed with anxiety grew by almost 30%. That is a very large increase. And we know that the number of kids diagnosed with depression grew by 27%. So the rates of mental health concern and need have skyrocketed. And this is, it’s also not uncommon for adults to seek out mental health services and to get mental health services. So this is data from 2019 to 2021, so capturing some of the pandemic. And if you look specifically by the aggregate, so that total of all adults combined, 21.6% of adults were getting any type of mental health treatment. So that’s more than one in five. And then if you look specifically within this age group of 18 to 44, it’s 23%. So almost one in four adults get mental health services. And so I think it’s important to acknowledge that even if people don’t come out and say that and openly talk about the fact that they’re getting mental health services, it is often much more common than folks might think.
Caitlin Shneider 08:54
So how do we do it? How do we find a therapist? I have put together a little graphic that provides an overview of what the process looks like. This is based on my knowledge and my knowledge of the systems within the United States. So it may or may not translate to other countries. And some of this may be a little bit different for your own experience. But this is just a general overview of what the process might look like. And so I’m going to give you an overview, but then we’re also going to dive into some of the specifics of this. So first, we start by deciding that we’re going to seek out therapy and once we do that, we want to identify trusted providers for referrals for possible therapists, or trusted search engines that we can look in. From there, we want to figure out what is important to us. What do we want to search for specifically? From there, we want to be able to then run the search and create a list of possible people that would be of interest to us. And from there reach out to those people or practices or organizations, and express interest in services. As we just talked about, the demand for mental health services has skyrocketed within the past several years, so oftentimes there is a waitlist. So we’ll talk about getting on the waitlist and getting on many waitlists. From there, you’ll complete some paperwork, just talking a little bit about what you’re interested in getting support for, and then we’ll wait to be contacted, once there’s an opening for you. You’ll then do something called an intake session, which is your first meeting, which we’ll talk more about. And then at that point, after meeting with that person, you get to decide whether that person seems like a good fit for you or not. And from there decide to either go ahead and get started or keep looking and find someone else. So this is an overview of what the process could look like. And so digging into some of the specifics more, starting with how do we identify a trusted provider or a search engine that could be helpful for us.
Caitlin Shneider 11:09
So oftentimes, a provider that is a primary care physician has names and recommendations of mental health providers that are in their area or in their community that they might know. Particularly for kids, the pediatrician will often have names as well. So that can be a great place to start. Specialty providers also might have recommendations like the dentist or the dermatologist may have some names. And you can also call your insurance company. So your insurance company will provide a list of therapists that are in your area that would be covered by your insurance. And we’re going to talk more about the cost and insurance and that stuff later on. But that is another place that you can look, they can find people within your area. And of course, you can talk to trusted family and friends and community members about their experiences, if there are people that they like, or they’ve heard good things about certain providers. These are some search engines that are often helpful. I’m going to send this out to you so that you have this and don’t have to like frantically try and write this down or snap a picture or whatever, but I will send this information out to you. These are some search engines that allow you to be able to see who’s in your area and we’ll look at some of these. And then also for folks of color, there are often unique barriers to accessing mental health services. And some folks feel more comfortable working with a provider with a shared identity. So these are some search engines and some references or some resources that are specific for certain racial and ethnic communities. And I’m mindful that there are also other diverse identities that are important to folks, that are not specific to racial and ethnic identities and we’ll talk about how to search for those things later on when you’re looking for a provider. So these are some other resources. And another place to look is also within your community. So if there is a local children’s hospital nearby, most hospitals will have a behavioral health or a psychology department and so you can request services from that department. Typically, they’re staffed by advanced trainees, so people that are learning to be psychologists or psychologists within the hospital, as well as local universities that may have a counseling center or a psychology clinic. So for example I am, I provide services within the university that I go to, their psychology clinic. And this is often a lower cost option as well, because folks are training and so they don’t have their license yet. Typically, both of these are, I would say shorter term options. So oftentimes, they won’t give you a set number and say, “You have to be out in eight sessions”, or “You have to be out in three months”, but they typically will work with folks for more like a few months to a few years. And folks that want longer term support often are a better fit with providers that are based out of a private practice. And they might see somebody longer for like, five years or seven years or something like that. So we’ve identified where we can find possible referrals, some providers that we can ask, as well as search engines that we can use.
Caitlin Shneider 14:28
And from there, we want to figure out what are our criteria? How do we figure out what we’re looking for when we’re looking for possible folks to work with? I think there are a number of things to consider, and that I’ve included here on this slide, the first of which is that person’s education, their training and their licensing. So looking at that, more specifically, there are a number of different folks that provide therapy and there are also a number of differences between them. A big difference is their level of training. So as you can see on the slide, some people that provide therapy have a doctorate degree and some people have a master’s degree. So starting with folks that have a doctorate, a psychiatrist is somebody that is medically trained, so they are a quote unquote, “medical doctor”. But they have expertise in learning how to manage psychological symptoms with medication. So they are the only one on this list that can provide and prescribe medication. The other kind of therapist that has a doctorate is a psychologist, and they either have a PhD, or a Psy D. And a PhD is a doctorate in philosophy, with training in psychology. And someone that has a PhD has specific training in providing clinical services, but also has specific training in conducting research and reading research and evaluating data. Someone that has a Psy D, which is a doctorate in psychology, their area of focus is explicitly on clinical training. So they don’t have training on how to do research, but all of their training has gone into providing clinical services. So you’ll often see these two types of degrees for folks that are providing therapy. I would say, it’s less common for psychiatrists to provide therapy. That’s, to my knowledge, not typically an area of training. It’s more so prescribing medication. And then there are also many folks that provide therapy that have a master’s level degree. So you might see a licensed social worker, which have these initials after this, these letters after their name, a licensed professional counselor. A marriage and family therapist is typically somebody that has expertise working within a family system, or providing support related to a partnership or a marriage, and then also a national certified counselor. And I’m happy to speak more about some of the differences between these at the end if that’s of interest, and if that’s helpful for folks. So that’s one thing to keep in mind is what is their education and their training. Another thing to keep in mind is their experience. How long have they been doing this? There are pros and cons to working with folks that have been doing this longer and for folks that have been doing this less. So I think folks that are newer to the field, obviously don’t have as much experience, but they may have more openings. You may be able to get in with them faster, because they’re trying to build their practice. They also may be newer to the science because they are more recently trained, versus somebody who’s been out in the field a little bit longer.
Caitlin Shneider 17:45
You want to think about their areas of specialty. Oftentimes, when you search for someone you can see it’ll say like specialize in treating depression, treating anxiety, treating OCD, it’ll say things like that. And you want to keep in mind whether that seems to match with what you were looking for. Obviously, you want to think about the age range. Some folks will provide services across the lifespan. They’re comfortable working with children, as well as with adults. Some that’s not the case. You also want to consider their orientation, which is a fancy way of talking about the psychological theory that informs their practice. So you can see I put CBT, ACT, MBSR under here. We started to talk about that in our webinar series of CBT, cognitive behavioral therapy, which is the idea that you change the thought and you change the behavior and that is how change happens. There are other orientations and other principles that guide people’s practice. And so wanting to know, how do they practice, and then also wanting to know how much they charge and whether they take your insurance. Related to this idea of orientation, it’s, it’s important to keep in mind and think about whether the orientation they use and the practice they use is evidence based. Is there data to support that what they’re doing is helpful for something that you would like support for? So I have this website listed on here, effectivechildtherapy.com, which allows you to see if you click on a certain area, what are evidence-based practices for that. So for example, you can click on anxiety, and it will show you these are the practices that have data to show that they’re helpful for lowering anxiety and treating anxiety. So this is a website that might be helpful. And while this is important, as we talked about at the beginning of the webinar series, doing therapy is an art. There is no hard and fast rule. There is no way of saying “This is absolutely going to work. This absolutely won’t.” But it’s important to just keep this in mind of, is the practices that are being used by this person, is it supported by science? And that’s something that you can certainly ask them about when you meet with them. And then it’s also really important to think about what’s important to you or to your child. We know from research that 1/3 of the outcomes from therapy comes from the relationship with the provider. So you have to like the person and you have to feel comfortable with the person. And then so it’s important to think about things that are important to you. What makes you feel comfortable? Is it their gender identity? Is it their sexual orientation and whether it matches with yours or it’s different from yours? Their age, their religion? The language they speak? Do you want to speak in a different language for therapy? Their cultural background? Do you want to meet in person or do you want to meet over the computer? There are lots of different things to consider. And so it’s if that is important to you, if any of these are important to you, that is something you want to keep in mind and you can look for actually, as you’re searching for a provider. But it’s okay to have personal preferences about someone that you work with. And we know that feeling comfortable with the person that you’re working with actually predicts outcomes, and so it matters.
Caitlin Shneider 21:22
So we figured out what we want to look for. We know what our criteria are. We want to go ahead and run that search. So just so you have a sense of what it looks like, these are some screenshots that I took earlier this week of what it would look like if you were to log into one of these sites to look for a provider. So as you can see, I put in Atlanta, which is where I am, and you can select all of these different things. You can click on issues and say “anxiety, depression”. You can click on the type of insurance you have. You can look, you can select the gender of the therapist that you would like, all of these things, ethnicity, surf, sexuality, language, all of these. And so you can really be specific in what you were looking for. Another search engine we talked about is ZocDoc. This is what it looks like. This, similarly asks all these questions, but they do it in a more step by step way. So you’ll put this in and it’ll take you to another screen and it’ll ask you some more questions. Go to another screen. And then this is another one, the APA Psychologist Locator. This is what it looks like. But I think it’s helpful to just have a sense of what it might look like. And I will say several of these have options for other countries as well, including Canada, so not specific to the United States. So once we’ve run the search, we create a list of folks that were potentially interested in and we’ll write that down. And then we’ll reach out to them and express interest in getting services. And as I talked about, the demand for mental health services has been unbelievable in the past several months, and has really skyrocketed. And so many places have a list, a waitlist for services that can range in length. And so what I would encourage folks that are interested in getting services to do is to put yourself on multiple wait lists and so you take the first one that comes up. You do the intake, you get a feel for whether that seems like it would be a good fit or not. If it is, great. Then you can cancel your spot on all the other services. But if you do it and you just don’t, you don’t feel connected with that provider, your name is already on a list and we’ll get called shortly for another practice and you’re not starting over and waiting another six months for somebody else. So I would encourage you to put your name on multiple lists, that’s not uncommon. That’s the way it typically goes. People are putting their name on multiple waitlist and you can always cancel if you’re not if you don’t need that spot anymore. Related to that, if you’re interested in working with someone in a private practice, you can request something called a consultation. Sometimes folks will do a free consultation. It’ll be like a 30 minute phone call and it’s just a chance for you to get a sense of their style and how they work and whether you guys seem like you’re a good fit or not. And so that is sometimes something that you can do before doing an intake and starting therapy is just a 30 minute phone consultation. You can request that and ask if they’ll be willing to do that. Not everybody will. But sometimes folks will be willing to do a consultation that way you can get a sense of if this is somebody that you think would be a good fit or not without having to do you know the wait six months, do the intake and and go from there. So sometimes folks will do that. So once you get on the waitlist, oftentimes the practice will send you some forms to complete, just a little bit about what you’re looking for. So you’ll fill out the paperwork, and then you’ll wait for the phone call from the practice or the department saying that they have an opening for you. And once that happens, you’ll schedule that intake session, which we talked about.
Caitlin Shneider 25:09
And the intake is really focused on two main things, one of which is getting information about an area of concern or area that you’re looking for support in. But then they will also ask a lot of questions about other things that are completely unrelated to that to try and get a sense of other parts of your life, which can inform the area of concern. So just don’t be surprised if they’re asking you questions about your medical history, or like who lives at home or what do you do for work? It’s all related and all of that is a normal part of the process. When you’re meeting with someone for an intake, or consultation or your first session, you want to bring questions and ask them things that are on your mind. So some questions you might consider is asking about their experience. What is your experience treating depression? What is your experience working with kids with a chronic illness? Have you ever done that before? What is your training related to habit reversal or those kinds of things? Wanting to ask them about their experience. You can also ask them about their style? How do you typically work with clients in the past? Other questions, how much do you charge for a session? How long are your sessions? those kinds of things. And then talking a little bit about payment and the cost of sessions, there are a range of different options. Some are lower cost, and some can be quite expensive. So as I mentioned, the universities that have training clinics are often low cost clinics. There are also other centers that are lower cost centers, so you can certainly look for a low cost option. Many private practices, and providers will have something called a sliding scale, where their rate is X, but they’re willing to be flexible, and offer something lower to you if you ask about it and if you can show that you need a lower option. Insurance is also very complicated. Unfortunately, many providers don’t take insurance for a number of reasons. It’s very complicated. But some folks do take insurance, so if you can find someone that takes your insurance, that’s the most sustainable option. And if for some reason you can’t find someone that takes your insurance and you feel like you fit really well with somebody else, you can see them out of network, and you can submit the receipt for your session to your insurance and try and get some of it reimbursed. So that’s a little bit about the cost.
Caitlin Shneider 27:57
Once you do the intake and you meet with that person, you want to decide whether that person is a good fit for you or not, and it is okay for it not to be a good fit. And I often talk to families, like it’s finding a pair of shoes, where you might have to try on three or four pairs until you find the one that you like. You like the way it looks, it feels good on, it’s not slipping off your heels. And I think about finding a therapist in a similar way. It might take a couple of tries. And that is okay. And therapists will not take it personally, if you just say “Thank you so much, you know, I don’t think that we’re the best fit.” And oftentimes therapists are very used to folks asking them, actually, for referrals. “Do you have anybody else that you recommend? I kind of am interested in somebody who does this?” or “I like somebody that’s a little bit warmer”, or “I like someone who’s a little more direct.” It’s okay. You will not hurt their feelings. They’re very used to that. So don’t be afraid to say like, “I don’t know that this is the best fit.” And sometimes we aren’t able to do that. Sometimes we’ve been waiting six months, and we’re going to take whatever comes up and we’re going to do it short term. But I just want to put out there that it is okay to say, “This is not a good fit”. And as we said, a third of the outcomes from therapy is from the relationship with a therapist. And so if you don’t like that person or you don’t feel comfortable, it’s in your best interest to find somebody you do feel comfortable with. And then, as we talked about, either you get started or you keep looking and you find someone else. And so that is an overview about what the process looks like, some questions that might come up. I am mindful of time that we’re at 2:30. And so I want to pause and this is an anonymous way of submitting questions. We’ve been using Poll Everywhere throughout the webinar series and I’ll pause and you’re welcome to submit a question or if you want to just unmute or put it in the chat. We can address questions that way. And if there are no questions, we can skip over that too. But I want to make this as helpful as I can to you all and address any specific questions that you have about the process of finding a therapist or anything that I’ve talked about. Again, if you submit anything through Poll Everywhere, it will show up. So just be ready that it’ll show up on on the slide. But I’ll I’ll pause there.
Tyler Bradley 30:32
Yeah, I’ll go ahead and ask ask a question. So a lot of a lot of families might be thinking, you know, “I’m finding a therapist for my child.” But that doesn’t mean they have to be a pediatric psychologist or therapist, does it? Or are you specifically looking for pediatric?
Caitlin Shneider 30:52
If you’re looking for somebody that can provide services to your child, you want somebody that has training, working with a child. So a pediatric psychologist is somebody that has expertise and training working with kids with acute and chronic medical conditions. You may or may not be able to find someone that is a pediatric psychologist, but you definitely want somebody that has experience working with kids. So if you’re looking for a psychologist, someone with the doctorate, you do want a child psychologist, or experience working with kids specifically.
Tyler Bradley 31:26
Caitlin Shneider 31:27
But if you’re seeking someone that is a master’s level person, they’re not going to be a child psychologist. You just want to make sure they have experience and they have training working with kids.
Tyler Bradley 31:36
Gotcha. Yeah, sounds good. So it sounds like you know, if you’re kind of looking around your area, there’s not a specific pediatric, just making sure that whoever you’re going to work with has that experience with with children.
Caitlin Shneider 31:49
Exactly. Yep. And on the the website, when you’re searching, if you’re looking through one of the search engines, it will say what age range they have experience working with, so you’ll be able to see that. It should be pretty clear.
Tyler Bradley 32:02
Okay. I have another question, if nobody else wants to chime in. I know there’s been a lot a pretty big boom of websites like BetterHelp and things of that nature. Is that this an option that people could or should take if they’re having trouble getting on these wait lists? Or what’s your opinion on that?
Caitlin Shneider 32:28
Yeah, absolutely. To be, to be honest, I don’t know a ton about those applications. I’ve heard mixed reviews. But I know that the one of the nice things about apps like that is they have a little bit more flexibility. So you can text with a provider or you can talk to them on the phone. You don’t have to go in person, or do a video session, which I think can sometimes be helpful. I also know that I think it’s been harder for folks to find someone that fits and you might have to cycle through a little bit more to find a provider that is a good match. But I know that you can do that on the app and request a different provider. So I think those are great options. Just to be honest, I don’t know a ton about them.
Tyler Bradley 33:15
Okay. Gotcha. Thanks. That’s the two questions that I had for you.
Female Speaker 33:22
Caitlin, I have a question. So I’ve done I’ve done some research, like a few years ago, on finding a pediatric psychologist or counselor, for children specifically with the medical trauma or dealing with a chronic illness, and wasn’t able to find any but would you say that if there was a pediatric counselor or psychologist that was dealing with children’s trauma in general, that that would be a good fit?
Caitlin Shneider 33:53
Yeah, if they if they have experience providing treatment for child trauma, they should be able to do also medical trauma as well.
Female Speaker 34:01
Caitlin Shneider 34:02
Female Speaker #2 34:10
Yeah, I have a quick question. Would you recommend counseling for siblings of kids with PFIC?
Caitlin Shneider 34:19
Great question. I think that it depends. I think if you are noticing that they are having feelings about what their sibling is going through, if you’ve noticed changes in their behavior, if you’ve noticed if there if there are signs that this might be hard for them, absolutely. And that is something I think that can be really helpful for siblings in particular, is having a place to talk about it with somebody that is not in the family, that is a place for them to process their own experience of it. So I was certainly think that that could be very helpful.
Female Speaker #2 35:09
Caitlin Shneider 35:10
I have a question.
Caitlin Shneider 35:17
You mentioned the waitlist. I know through someone dear to me that they are very bad. And especially for someone, let’s say who has an urgent need to receive healthcare for their ability to function healthily, but have no choice because of these waitlists. Do you have any suggestions for, you know, alternatives? Whether it’s a matter of how the people around them can help support them in the meantime or like, if there’s like, potential for seeking like telehealth in the interim?
Caitlin Shneider 36:03
Yeah, it’s a good question and complicated question. I think..it also depends on the level of acuity that we’re talking about. I think….I would hope that it might be possible, if someone is experiencing very acute distress, they might be able to get in with a provider more urgently. And that that would be… even if you contacted a practice and said, “This is what’s going on. We’re continuing to have problems finding someone”, that they would be able to find somebody that has an opening to get that person in as soon as possible. So even if their practice isn’t unavailable, that they would say, “Okay, this person needs treatment immediately. I know a number of providers have openings. Here are the names and these are folks to contact”. I would guess that that would probably be the case. I think…. if there is any acute distress or safety concerns, you always want to go to the emergency department. There are also now national numbers that can be called to keep people safe. I also think there are as you said, if that is not the case, that there are safety concerns, or there is acute levels of distress, there certainly are things that you can do to support that person that are not therapy. We know that social support is a big one and getting folks connected as much as possible to other people, people with shared experiences is a place to start. But it’s a complicated question. And I I have to be honest, don’t know exactly what happens if someone is in that level of distress, whether they will make space or whether they will, I would hope that they would say “Let me find someone that has an opening to get that person in.” But the first goal is to prioritize safety and make sure that they are safe, and then get them into treatment as soon as possible. So typically, the first first task is to make sure they’re safe, and then get them in as soon as possible. And folks would work together to try and get them in more quickly if possible.
Caitlin Shneider 38:34
Yeah, I wish I had a better, more concrete answer for that. And wish I could fix the system. But I’m….I want to share as much as I know about the system so that we can we can work together to try and work within it as much as possible. Any other questions? These were really great questions.
Female Speaker 39:06
I have one.
Caitlin Shneider 39:07
Female Speaker 39:07
How…. I guess how would you explain to your child where you’re taking them? Like how do you explain to them… like I had an incident with my daughter, unfortunately here in Ontario, apparently when you get put on a list, three, four years later, they still don’t call you.
Caitlin Shneider 39:23
Female Speaker 39:24
Yeah, that’s a whole other story. We’re we’re over and above that now. But the one thought in my mind was “How do I explain to Delilah why I’m taking her?”
Caitlin Shneider 39:33
Mm hmm, absolutely. I first want to say how awful that is to have to wait that long. And I think to that point, I would encourage as I’m sure you did, trying to check on the status of your… where you are in the waitlist is a really good idea if you’ve been waiting a long time. As we all have been stressed during this time, stuff gets lost in translation, and people make mistakes. And so you want to make sure that you haven’t gotten lost on the waitlist. So firstly, I want to apologize that that was your experience. That’s awful. I think what you say to your child, first of all depends on how old they are, and what their level of…yeah, how old they are as a place to start. So I don’t know how old your daughter is. I would say, it also depends on what the goals of the therapy is. So if it was related to this idea of implementing some of the skills we’ve been talking about in the webinar, I might say something like, “We’re gonna go meet with this person. They are going to help us figure out some ways that we can work together to try to make it not as bad for you.” something like that. Try and give them that level of information. I think it depends on the age of the child, though, and what the goals are and connecting that to what their experience is. If it’s more that this has just really impacted their mood, they’re not happy anymore, things with their friends are really hard, I might connect it to that and say, “This is a person that is going to help us figure out how to help you.” And you can also, if you’re not sure, you can also call the provider ahead of time and say, “I’m not really sure how to explain this to my child. Can you coach me? Can you give me some ideas of things to say?”, or they can do that with you in the first session. But that is also part of their job is helping the child understand what therapy is, who this random person is, why they’re there. So don’t be afraid to ask them if they can coach you over the phone of what to say ahead of time or if they’d be willing to open that conversation with you in the first session. Many folks will be happy to do that.
Caitlin Shneider 42:05
Good questions. I will say as well, I’m not sure I can do this every time, but there is, as I mentioned, at the start of the webinar, there is a division of psychology, the American Psychological Association that is specific to pediatric psychology. So it’s a certain division within that, that is professionals that are trained to be pediatric psychologists, and we have a listserv that people will often use looking for providers. So if you’re struggling to find someone, you can reach out to Emily, who can reach out to me and I can see if I can send out an email to that listserv of pediatric psychologists and see if anybody has referrals. Because sometimes, you know, everybody’s full, or you feel like there’s nobody that has experience working with kids or something like that. If you, if you get stuck, feel free to reach out to Emily, who can reach out to me and I can post on the listserv and see if we can find somebody in your area that might be able to work with your child. Any other questions before we shift gears and wrap up? Okay, well, if anything comes up, feel free to put it in the chat. And we can always circle back to it. But we’ll we’ll transition to to wrapping up in the last 15 minutes, and just putting together what we’ve been talking about for the past month.
Caitlin Shneider 43:53
So as you might remember, the purpose of this webinar series was really to offer a new perspective on the experience of itch of pruritus and offer some possible new ways of thinking about it and ideas for coping with it. And as you might remember, that we’ve talked about from the first and second sessions and throughout we talked about the idea that our mind and our body are connected that the way that we think influences our physical symptoms, and that our physical symptoms influence the way that we think and understanding this connection can help us understand ways that we might be able to shift or experience of certain symptoms in our body. And we also talked about data that are coming out from clinical trials for different medications being developed for it specifically for kids with PFIC, that suggests or I’m not sure if it’s specific to kids with PFIC, but medications that target ich. The data coming out suggest that there is a very strong placebo effect which tells us that the way we think about itch and what we expect really influences our experience of itch, suggesting that the way we think about our experience is very strongly associated with what we experience. And so we know that folks are developed working hard to develop medications that target different processes in the itch experience. We’ve looked at this model a number of times: pruritus, to itch, which is a symptom of pruritus, to the behavior, which is the scratch. And so folks are working to develop medications that will interrupt pruritus. Disrupt this, so we don’t have itch, we don’t have scratching. Also working to block some of the itch signals that get sent to the brain or disrupt those. And while we’re working on those, though, there are things that we might also be able to do to turn down the intensity of itch. Throughout the series, we’ve been specifically talking about the biological, psychological and behavioral factors that are associated with itch, and scratching. And pulling on what we know from other groups that experience chronic itch like dermatological conditions, as well as what we know from kids that experience chronic pain given that the neural pathway that sends pain signals, and itch signals to the brain is the same suggesting that potentially, the interventions might also be helpful for kids that experience chronic itch. And we talked about this really, in the context of a dimming switch on a light, that these biological, psychological and behavioral factors might act like a dimmer in that they can make itch brighter, stronger, more intense and they also might be able to turn down the intensity, make it dimmer. So it’s not the on and off switch, but we can affect how it shows up. And so throughout the series, we’ve been talking about strategies to consider to be able to turn down itch.
Caitlin Shneider 47:06
We specifically talked about the strong relationship between stress and itch. And we talked about evidence based strategies that have been shown to reduce stress. We first talked about the foundations of stress and making sure that we’re eating, drinking, sleeping, moving our bodies. And then these specific strategies that target the biological aspects of stress and the psychological aspects of stress. So diaphragmatic breathing, we talked about this also being called belly breathing for kids or square breathing. We talked about progressive muscle relaxation, which was targeting one muscle group at a time, intentionally tightening it and releasing it to get that relaxation effect. We talked about guided imagery, which was using our five senses to distract ourselves and to take our mind somewhere else. And mindfulness, also shifting our attention away from the itch. We also talked about specific thinking patterns that are associated with it and the intensity of itch. And that data has shown that there’s really two types of thinking patterns that are associated with itch intensity, one of which is thoughts that emphasize a negative meaning of itch. We specifically talked about itch catastrophizing, magnifying itch, getting stuck in a loop about worrying about itch and feeling helpless in the context of itch. And we also talked about thinking patterns that are associated with acceptance, which has been shown to be associated with decreased intensity of itch. And we talked about some strategies that can change our thoughts or change our relationship to our thoughts, which has been shown to decrease intensity of itch. And as we talked about, they come from often CBT based interventions or ACT based interventions. And the CBT ones are trying to change the thought. So we talked about that idea of playing detective with your child. Where is the thinking trap? Considering other evidence that might go against the thinking trap and trying to come up with a thought that is more balanced. And we also talked about some ACT based strategies that are changing our relationship to the thought, creating some distance between us and the thought. So we talked about leaves on a stream, putting the thought on the leaf, watching it go down the stream, attaching it to a balloon and letting the balloon go, being the pond, noticing all the fish with different feelings and different thoughts. And really wanting to encourage your child to keep participating in activities that are important to them while accepting and letting go, defusing, as we talked about, from some of these thoughts.
Caitlin Shneider 50:05
And we also talked about the scratch itch cycle at the beginning, and strategies to disrupt this to be able to reduce itch. And these were often behavioral strategies. So we talked about Habit Reversal, and distraction. And really for Habit Reversal, trying to first increase the child’s awareness of the scratching behavior. We talked about how this is so automatic at some point, that we want to first, in a very neutral way, draw the child’s attention to the scratching. And then introduce something that is a competing response that they cannot do at the same time that they’re scratching. So some of the clinical trials we talked about, had kids clench their fists for 30 seconds or hold an object for 30 seconds, positively reinforcing that response, getting it to increase again, and then distracting the child after that, shifting their attention away from the edge and engaging them in something else. We talked about distraction as being something that’s been shown to be particularly helpful for kids that experience acute pain, is taking their attention away from that sensation of pain, which might also be helpful for kids that experience itch. And then we also talked about the power of the parent and the critical role that you all play in your child’s experience. We, you might remember from the second webinar, I showed that picture of the parent and the child and the loop, that it goes in that the way a parent feels, influences the way a child feels, which goes back to the way the parent feels. And it can be vice versa, that you play a role in your child’s experience. And one of the ways that you can help your child is to help yourself. And so prioritizing your own stress management, making sure you’re eating, making sure you’re getting enough water, making sure that you’re sleeping enough. That way, you have the most tokens in your piggy bank as possible. And we’re still learning about responses to itch, specifically in kids that experience itch, we know from the chronic pain literature, what’s been published, that the way that parents respond to children’s pain influences their experience of pain, as well as its impact on their life. So we know from that, that being able to give a very neutral, and minimal response to pain has been shown to be associated with decreased pain, more better functioning day to day, as well as better psychosocial outcomes, better mood. And being able to be calm in the context of pain, as well as monitoring pain and encouraging them to keep participating in activities has been shown to be associated with some of the best outcomes for kids that experience chronic pain, and might also be helpful for kids that experienced chronic itch as well, being able to monitor their itch while not giving too much attention to it.
Caitlin Shneider 53:22
And so looking at all of these things together, you know, we can’t change PFIC, yet. Hopefully, maybe in the future, that will be an option. But we can build our toolbox of strategies to be able to cope with the impact that it has on our child as well as on the family. And knowing that you don’t have to carry this burden alone. This is a lot for any family, for any child. And that there are communities that can support you through it, whether it is your family, your friends, getting connected to other folks with shared experiences online. I know there is a support group running, if you’re not already connected to that, that’s another option. And then as we talked about today, there are trained professionals that are there to support you as well. So knowing that you are not alone in this and you don’t have to do this by yourself. So that is all that I have. Thank you so much for being here and for coming. And we can we can wrap up and say goodbye.
Caitlin Shneider 54:30
Caitlin Shneider 54:31
See you later haha.
Tyler Bradley 54:34
Well, thanks. Thanks so much, Caitlin. That was… every every presentation was fantastic. And there’s a lot on there that can not just be taken from by parents, but a lot of anyone can take that advice. So I know Emily is not here but I’ll echo she’ll probably say “That was fantastic and thank you, thank you, thank you”, so
Caitlin Shneider 54:55
Happy to do it. Thank you so much for for coming. I’m I’m glad to get to meet some of you virtually. And as I mentioned, I’ll be at the conference in May, and maybe meet some of you in person. But thank you so much for coming.
Thank you again. And we’ll be in touch. Nobody has any final comments then. Walter?
Walter Perez 55:18
Not just thank you very much. Looking forward to meeting you in person in May and yeah, this was really good. Thank you.
Caitlin Shneider 55:25
Of course. I’m happy to.
Female Speaker 55:27
I concur. It was excellent. Every one that I attended. Thank you.
Tyler Bradley 55:35
Well, all right. Thanks, everybody. We’ll see you soon.
Female Speaker #2 55:39
Sounds good. Thank you. Bye.
For Rare Disease Day 2023, we offered a webinar series called “Rare & Resilient Resources: A New Perspective On Coping With Pruritus”. This is the final webinar in the series. This installment covers tips for finding a therapist and what to expect from a counseling session.
Throughout the series, we have talked about multiple skills and strategies to cope with itch. These skills take practice to effectively implement in live situations. It can be very helpful to work with professionals to develop them. In this final webinar, we explore the process of finding a therapist, and share helpful tips to make sure you get connected to the therapist that’s the right match for you and your family’s needs.
Remember: it is okay to need support. PFIC patients and families are often need more support because of the constant stress of it all. Whether to develop coping skills or to process the experience of life affected by a rare disease, everyone in the family can benefit from the support of a therapist.
Host: Caitlin Shneider
Caitlin is a Clinical Psychology Doctoral student at Georgia State University. Caitlin studies the influence of child pain catastrophizing and parent response to pain on psychosocial and functional outcomes for youth. This gives her a unique perspective on dealing with pruritus.