Lamia Barakat, PhD, of The Children's Hospital of Philadelphia, discusses the ways childhood cancer affects the child, parents and siblings, focusing on the experience of post-traumatic stress symptoms and post-traumatic growth.
PTSD and post-traumatic growth after childhood cancer
Lamia Barakat: Good evening, my name is Lamia Barakat. I’m a pediatric psychologist. And I direct psychosocial services in the Cancer Center at The Children’s Hospital of Philadelphia. It’s a pleasure to have a chance to take two and hopefully have audio this time, as we begin this conversation about post-traumatic stress and post-traumatic growth in the context of childhood cancer.
Before I start, again, I just wanted to acknowledge Dina Sherwood and Arms Wide Open Foundation, and talk a little bit about how the concept for this webinar series started.
The psychosocial staff in the Cancer Center at CHOP had been thinking for some time about how do we reach caregivers, patients and survivors where they are. How do we provide education and support, not only within the confines of the Cancer Center, but for families when they’re at home as well?
At the same time, it seems Dina Sherwood was having that same type of conversation with the parents with whom she connects, and within her own organization.
At some point we came together and we put our heads together and said, “It’s time to start a webinar series.” This is the first in the series, and we’ll talk later about what some of the other topics will be.
So you might ask, why do we start with post-traumatic stress and growth? Well there are a couple of reasons. Dina certainly noted that many of her parents talked about how going through the cancer experience felt traumatic. And we, in our own history of research, have learned that many families talk about cancer as a trauma.
So we had done a good deal of work and research over time to learn about what is traumatic about the experience of childhood cancer. But also what are the opportunities for growth, for making meaning, or for benefit-finding within that experience. So tonight we’re going to talk a bit about what do we know about pediatric traumatic stress? How do we understand post-traumatic growth? And what are some of the opportunities you might have to address post-traumatic stress symptoms if you’re experiencing them, or your child or survivor is? And how can you create opportunities for growth within this experience?
Before we go on to talk about that, I do want to just explain the setup here for the webinar. We have, and we really wanted to be able to have everyone who’s participating have an opportunity to talk with each other. So if you scroll down below the video feed, you’ll see that there’s a chance for you to speak with each other, share your ideas and your thoughts with each other, in the window underneath the video feed. That’s a chance for you to experience moderated chat or connection with each other.
You’ll also be able to submit questions within that window. And we will stop periodically throughout this presentation to answer your questions. Our hope is that even though we’re coming to you virtually, that you will have a chance to feel supported by each other, and supported through the way that we have this conversation about post-traumatic stress and growth. In the end, if we're not able to answer all the questions, I’ll give you a link that you’ll be able to use to submit your questions for further discussion.
So let’s get started. I’d like to start with this slide, maybe that's because I think humor is a good way of coping. But it really, I think, encapsulates a lot of the experience that parents have when their child is diagnosed with cancer. First is that beginning line, which is “Life makes no sense.” Because a diagnosis of cancer doesn’t make sense, especially at the time, and can feel very unfair. But then the next question we ask is, “What can you do about it?” And within this comic strip, they really describe, you can become enraged, you can freak out, or you can just roll with it.
Most certainly rolling with it defines what we think of as growth, or resiliency. But that doesn’t mean that people don’t experience anger, and don’t freak out occasionally along the path to growth. And that’s what we’re going to talk about this evening.
So what are the responses that people have to childhood cancer? And this is just, I think, touching … it’s just the tip of the iceberg when we talk about it. But one of the things that I want to start by saying and recognizing is that for a long time people were focused on what are the challenges that families face? How might childhood cancer, or really any other chronic medical illness, derail children’s development, create stressors for families, and create long-term problems with adaptation?
And one of the things that we’ve learned over time, and one of the things that I experience in my role, is that families are remarkably resilient. Children have a drive to get back to their everyday life, everyday activities, and move on with development. And although families experience a great deal of challenge and stress, not just at diagnosis, but through treatment and even into survivorship, they also show remarkable strength and remarkable resilience. And many of our families tell us that although they had been challenged to deal with a stressor that they never imagined that they would have to face, that they also grew in positive ways as a result of having had that experience.
But that is not to say that some families don’t experience what we call persistent traumatic stress reactions. And for some caregivers, or survivors, that may actually interfere with their day-to-day functioning, their quality of life, their ability to continue to move along the path of life. And that’s what we want to … we want to address that wide range today.
The other thing I want to say is that sometimes people think if you experience post-traumatic stress, you can’t also experience growth, or visa-versa. But one of the things that we’ve seen is that families can experience both post-traumatic stress and post-traumatic growth. They're not mutually exclusive. And many families experience both at the same time. Sometime growth is prominent, sometimes stress is prominent, but both can occur for families.
So let’s talk about that, you know, what is the official definition of pediatric, or medical traumatic stress. And I think it is important to put this up. Most people are familiar with the term PTSD from the work that’s been done with combat veterans. And so some might say, “How does post-traumatic stress relate to childhood cancer?” I think for those of you who’ve gone through that experience, you’ll say, “There are many, many ways that there are similarities.”
First of all, what we know is that for post-traumatic stress to occur, people have to experience something that is life threatening. Well childhood cancer is life threatening. For post-traumatic stress to occur, people have to experience something that feels horrible, it’s frightening, people feel out of control in that situation. So that makes childhood cancer definitely an experience that can be traumatic.
And for the official definition, we have that up here for you to see. It’s a set of psychological and physiological responses of children and their families — that means caregivers and siblings too — to pain, injury, medical procedures, and invasive or frightening treatment experiences.
So let’s break that down just a little bit more. What do we know in the context of childhood cancer? This slide just shows some of our findings from one of our studies at CHOP. And one of the things that we learned in this study, which is something that may not be surprising to you, is that while children and siblings report experiences of post-traumatic stress following cancer treatment, parents experience those symptoms much more significantly. And I often hear parents say, “We went through this incredible experience. I am still trying to recover from it. But my children are kind of racing to get back to normal. They want to go back to school. They want to have their friends. They want to do the things they always did.” So while caregivers are still dealing with the horrible memories, children start to quickly shed them, and try to move back into life as it was before.
And we’re going to talk about why that is. The other thing I want you to note from this, because we often talk about these as kind of like the silent heroes in families, is that siblings are very much effected by the experience of cancer in a brother or sister. And this slide really shows something we’ve seen consistently. And that is that they tell us that they too have traumatic experiences within the cancer experience as well.
So I was just saying, you know, in PTSD, that concept was started with combat veterans. So we think a lot about what is traumatic in the medical experience. And I want you to maybe … I know going through this you’re going to start having your own memories of the cancer experience. Or you’re going to remember things that may have occurred recently if your child is on active treatment. So some of these things that are traumatic about childhood cancer may really resonate with you.
So trauma for parents really challenges our beliefs and assumptions. And as parents, we have assumptions about our role to protect our children. And when cancer is diagnosed in a child, it very much challenges that belief that we can protect our children from all dangerous circumstances. And it also challenges us because many parents that we hear talking say, “If only I had… If I could… If I’d pushed… If I’d done this.” And we often say to families, this is something that wasn’t in your control. But even that challenges an assumption of parenthood.
It also, for children, parents and siblings, challenges some of the assumption we have about being safe, about our level of vulnerability. And in many ways, the natural order, where older people become sick, or ill with cancer, but not younger people.
Another thing that is traumatic about childhood cancer in particular, as a medical experience, is what we understand with cancer is that it’s not just about the diagnosis. We know that at diagnosis that’s when people tend to be most stressed. And that’s what we call traumatized, or in shock. But in the case of childhood cancer, their ongoing treatments that serve as reminders or new traumas. And there are also, once people are off treatment, follow-up visits and ongoing tests to check to make sure that cancer has not recurred and to look for medical late effects. So there are opportunities for new traumas even post diagnosis. It’s not a one … cancer is not a one-time event.
And that relates to this third point, which is that the cure … the treatment can be as traumatic as the diagnosis. And we’ve heard many children and parents say that the painful treatments — the hair loss, chemotherapy, surgical scarring, etc. — at times is more difficult to manage or to cope with than the news that the child had cancer in the first place.
In addition, families talk about how making decisions under duress is very traumatic for them. What does that mean? Well we know in the context of childhood cancer that families are often asked to make decisions about treatment at a time shortly after diagnosis, when they feel the most vulnerable, the most confused, and the most emotionally challenged to make rational decisions. And many parents talk about that time as being incredibly difficult for them. No time to think, and yet making what they felt were life-changing decisions.
We also know that continued exposure can prolong that sense of trauma. And I talked about how people continue to come back for ongoing visits. But families also connect with other families in our cancer centers. And so seeing other children who are sick, knowing about other children who died, those things can also create a more difficult experience.
Some families have talked about continued exposure in the form of seeing information about cancer on TV. Having another child in their child’s school or school district diagnosed with cancer, those things can also continue to prolong that exposure, prolong the trauma.
And then the last thing I want to note about childhood cancer that I think makes is particularly difficult for parents in particular, is the fact that it’s not clear what the end of cancer is. And I think that will resonate for many of you. So families often talk about how moving off treatment is a time to celebrate. But we know from families who’ve moved off treatment, that they often say that that can be as or more challenging than the diagnosis itself. And there is this thought about how do you put cancer in its place? How did families forge a new normal for themselves while keeping in mind that their child had cancer, and worrying about uncertain outcomes and relax, and dealing with late effects.
So, I also want to … so these are the things that can make cancer feel like a particularly difficult or traumatic experience. And some of the reasons why we feel that the idea of post-traumatic stress may resonate with many of you, and certainly has in our work.
So just to summarize, you know, what is traumatic? And again, I want you to think about, you know, for your own child, what might have been most difficult? What was least difficult? This is a list of what children have told us were the most difficult parts of having had cancer. And it’s interesting to see, we kind of ordered this in the … like most frequent to the least frequent in terms of what they have endorsed. And what I want you do notice, when I show the next slide, is that what’s difficult for children is a bit different than what’s difficult for parents. And you may recognize that. But sometimes we as adults respond to our children based on what we’re most worried about, so this is an interesting way to think about, OK, what do child most worry about? And for them it’s really what’s immediate. They don’t worry about the big picture as much as they worry about what’s effecting them today. So, are they being left alone in the hospital room? They’re afraid of maybe being left alone in the hospital room. Are they going to have a painful procedure that day, or have to get a needle? Any noticeable injury or disability. Exposure to medical equipment that’s frightening. And fearing what their peers are going to think of them when they see them if they’ve changed in their appearance.
For parents on the other hand, what’s … they tell us is most traumatic for them is really around that period of diagnosis and/or relapse. Parents often go back to that time and relive it, and rethink about that time. And then parents think about the big picture. That is the ongoing, uncertainly about prognosis, worry about whether they’ll experience some treatment setbacks and relapse. And again, returning to that idea of parents as protectors, that feeling helpless in the context of childhood cancer, and being about to do something to save their child.
So here are what some families have told us in the context of our research. And also what some of the children have told us about what is most traumatic about childhood cancer. And I’ll give you a moment to read these quotes. But they really summarize a good deal of what I said about why post-traumatic stress does occur in the context of cancer, what families find most challenging about childhood cancer, its treatment and beyond.
So to highlight a couple of these, “I was so scared because my mom was not there,” and that fear of being left alone. “It was a horrible scene. I thought I was dreaming.” “The experience of cancer is a horrible, horrible experience.” And, “It all happened so quickly. I was out of it and in pain.” And I think the quote that is the most striking is the one which would be on your bottom left as you look at the screen: “We went from taking him to our family doctor thinking that he had some kind of flu. By the end of the afternoon being in the ICU and having him inundated with needles and tubes. And wow, how did the day end up like this?”
I’m going to pause now for questions. So the first question that we’re getting, “Is it possible for a parent or caregiver to suffer from PTSD?” I’m going to talk about that in a moment. And what I want to convey to you is that what we’ve learned from our research, as well as our interactions with patients and families, is that most parents experience some symptoms of post-traumatic stress during or after childhood cancer and treatment. It may be one symptom; it may be 20 symptoms. There’s a very wide range.
A smaller portion experienced true PTSD. That is meeting criteria for the diagnosis in a psychological term. So we think about 5 to 15%, depending on our studies, might meet criteria for PTSD. But many more endorse experiencing some of the symptoms of post-traumatic stress disorder. And we’ll go over those in a moment.
“How do I know if I suffer from PTSD?” I think that’s similar to the first question, again, I'm going to go over some of the symptoms. And if they resonate with you, we will give you some suggestions about how to follow up with that. One of the things I want to say from the outset is that we know from our own work, and the work of others, that there are ways to successfully manage those traumatic-stress symptoms, and find a way for you and your family, as I said before, to forge a new normal for yourselves as you move forward in your lives. And we have the example of many families who have gone on to find meaning and find joy in their futures with some attention to, and work on the aspects of childhood cancer that have been most distressing for them.
And then the last question is, “What interested you in working with children with cancer and their families?” I think that's a great question. And many of us within the Cancer Center actually are asked that question. And for me in particular, it goes back to what I noted at the beginning. So just a little bit on a personal note, when I first began training in psychology, we very much had a model of what we call pathology. And that is we looked for people to have psychological symptoms in the most difficult of circumstances.
As I went through training and started doing this work, I noticed that while many families struggled and experienced distress, there were also many more families who showed remarkable resilience within the context of very, very difficult situations.
And for me I remember this one experience of a child with cancer kind of running down the hall after a ball trying to play soccer in the hallways at the hospital where I was working at the time. Laughing and smiling, and having a wonderful time in the midst of his cancer treatment. And that to me was just a sign of how, even under the most difficult circumstances, children want to be children. They want to play. They want to find joy. And families want to support their children in being able to do that. And that’s really the kind of experience that keeps, I think, all of us engaged and involved in wanting to support families in finding their own strengths. And wanting to help families identify resources when they need them. So that they can experience, you know, the smiling boy chasing the ball down the hall in the midst of his cancer treatment.
OK, so a number of you are asking what is PTSD? Might I be experiencing PTSD? Do I know someone who might be experiencing PTSD? So let’s take a moment and really talk about, you know, what are those symptoms? When I say post-traumatic stress, let’s kind of dig a little deeper and talk about what does that really mean? So one of the things that I wanted to note is that post-traumatic stress responses are really related to the subjective experience of cancer. We’ve done some work where we’ve actually looked at, you know, if we have oncologist, or pediatric oncology, nurse practitioners, make rating of the severity of treatment, or the severity of the actual cancer diagnosis or its late effects, is that really PTSD?
Or is it, if you ask a family, “How life threatening was this for your child? How difficult was it for your child?” Which one explains post-traumatic stress symptoms more? What we found it’s a subjective experience. It’s how have you experienced the childhood cancer. As I said before, these symptoms vary in intensity. Some people endorse one or two, others endorse many of them.
For some families, the experience of post-traumatic stress is confined. That is, we often get calls from families who say, “You know, day to day we’re doing fine. But all of a sudden about a week or two before my child is due for their follow-up MRIs, or follow-up tests, the anxiety starts to build in our family. People can’t sleep. People are having trouble eating. There’s more irritability in the household. And there’s this build-up to the point of the actual test and follow-up visits.” And then when people get the information, or the news, following the follow-up visits, there’s kind of like this sigh of relief in the family. And then it all goes back to the way it was until it’s time for the next set of follow-up tests.
And then we also move on to families who actually experience that level of anxiety at all times. So there is quite a range.
For some families, it becomes disruptive to functioning. And when we talk about post-traumatic stress, we talk about the hallmark symptoms being re-experiencing, avoidance, arousal and sometimes dissociation. I just, for those of you who are more focused on the research and have heard, we have a new definition of post-traumatic stress disorder coming out with a new, what we call, DSM-5. But much of this work was based on earlier versions. So we’re going to focus on those symptoms.
I also want to say that these apply to both parents and children. So what is re-experiencing? I think this is the one that most families can relate to. And it’s really this thinking a lot about the diagnosis, treatments, or medical procedures, even when you’re not in the middle of treatments or medical procedures. So it’s kind of like this idea of a flashback to that. For children having nightmares, having nightmares in general or nightmares related to childhood cancer and treatment.
And then there’s really feeling distressed at thoughts or reminders of the cancer. So some examples from our families, “It keeps popping into my head.” “It feels like it’s happening all over again.” “I get upset when something reminds me of it.” That’s re-experiencing.
Avoidance is another symptom of post-traumatic stress disorder. This is not wanting to think or talk about cancer. Avoiding any reminders or triggers. That can show itself in missing or cancelling appointments or therapeutic activities. Medication non-compliance is another part of avoidance. Displaying less interest in usual activities. And sometimes families talk about feeling numb or detached from others, or that they feel different now from their former peer group or social supports. Families will say, “I block it out and try not to think about it.” Or they try to stay away from reminders. That’s avoidance.
We also see increased arousal. I had mentioned irritability earlier, that’s certainly one of the features. But you also see acting-out behavior among children, trouble concentrating or sleeping, an exaggerated startle response, especially for some children, and this hyper-vigilance, or overprotection for parents. And parents tell us, “I’m always afraid something bad will happen.” Children might say, “I get jumpy at loud noises.” And both parents and children tell us that they have trouble concentrating, or they have trouble sleeping.
And then finally we see these less often, but they are certainly part of post-traumatic stress. So that idea of feeling in a daze, or feeling spacy. And I would say that that would be having that feeling, not just at diagnosis, but beyond. Because many of our families at diagnosis really do feel like they’re in a daze or a dream.
Having new fears. That is being afraid of things that they might not have been afraid of before. And then sematic complaint that can’t really be explained by cancer or its treatment. And families will say, “I can’t even remember parts of it.” Meaning parts of cancer treatment, or it felt unreal.
That’s a quick summery of the symptoms. And then this table really explains what I’ve been talking about over time, over the course of this presentation. So this shows family distress over time. And what we’ve seen for families in general. And you have, you know, that big explosion at diagnosis. And you go from kind of how your family is functioning to all of a sudden to having high levels of distress. And that is typical. We see that across all families. And in fact, if we don’t see a high level of distress, we’re a bit more worried about a family. Because that is what you would expect to see in any family who receives the news of diagnosis of childhood cancer.
For most families, they stay distressed for some time. And this is a process of kind of settling in. What does childhood cancer mean? What does my child’s particular diagnosis? What will treatment look like? How are they responding? How are we managing across all of our family members? What is the response of our community? As families start to figure that out, as well as kind of learn the hospital system and the medical team, for many families with some support, education and resources, they’re able to return to normal functioning over time. And that is over time while still on treatment.
But there are some families who remain distressed over the course of treatment. And even potentially as they move off. And other families for whom there might be an escalation in distress over the course of treatment.
So we’ll talk about what some of the risk factors are for that, but just for you all to know, that there are no right or wrong responses to childhood cancer diagnosis. What we’re talking about is what is it that we observe? What is it that you might be experiencing? And what do we know can be done to kind of set everyone back on that path of going back to their baseline in some way. At least in terms of their levels of distress.
So what do we know are the risk factors for children? Who are the children who will experience that distress and have much more difficulty returning back to some kind of normal? Well, certainly children who see cancer as highly threatening. And children who experience their treatments as severe pain. We also know children who were more anxious prior to diagnosis, who may have had other behavioral problems prior to diagnosis, or who may have been more isolated from their peers are also more likely to experience continued distress in the context of cancer.
Similarly for parents or caregivers, we know that the more families see cancer as life-threatening, which is realistic, but also a death sentence, the more hopeless families are about whether how their child will fair in the course of the treatment, the more likely they are to experience these symptoms. We also know that parents who’ve experienced prior traumas, recent losses, or other significant stressors, are more likely to have difficulty recovering from the initial diagnosis and treatment. And parents who lack social support as well.
So what is the impact? I think this slide summarizes some of what I’ve said already. Which is most families experience some traumatic stress reactions following life threatening illness, injury or painful procedures, and that includes cancer. About 20-30% of parents or 15-25% of children experience what we call persistent or significant traumatic stress reactions. And then a smaller number experiences what we would actually diagnose as PTSD.
When they do persist, and this may be what a number of you are experiencing, they can impair day-to-day functioning, making it difficult to kind of get back on track with life goals. They can reduce adherence to medical treatment. And they can impede optimal recovery, and also impede relationships.
On the other hand, we know that pediatric traumatic stress has an adaptive function. And I know that may be hard to believe in the context of talking about the ways in which post-traumatic stress can impede functioning, and even in referring to post-traumatic stress as distress. So maybe hard to believe that there is an adaptive function to those symptoms. But there is. There are a number of them. And this slide just list a few of them. One is that experience distress and being more aroused tells the people around you that you need help. And that can bring in the supports that you need. Now I know that families talk all the time about how some of the support they get is helpful, and some of the support that they get is not very helpful. And sometimes they’re being offered support and don’t really know what to tell people to do. But what’s happening is that those families are responding, or those social supports are responding to signals of distress.
Re-experiencing allows us to process and resolve difficult memories. One of the main successful ways to treat post-traumatic stress disorder is actually to walk back through, and in some ways re-live the trauma. And by re-experiencing, people are re-exposed to that traumatic experience. They go back and look at it, sometimes in new and different ways. And this will talk about somewhat times and ways that allowed them to see what is it that they did within that experience that advocated for their children. How is it as a child or a patient that you might have done something to make that experience less difficult?
So people, when they go back and look at what was originally quite traumatic, can pull out or see areas of control or strength that they may not have been able to see in the beginning. And that can reduce the stress when going back to those experiences.
And then avoidance and distraction helps people tolerate distress and get through the bad times. So sometimes it’s important just to turn off that high level of distress just to get through what you have to get through, whether it’s in terms of treatment, or taking care of other members of the family, or going to work every day.
So that leaves us to talk about if post-traumatic stress has adaptive functions, and if we know that families not only experience post-traumatic stress, but also post-traumatic growth, is it possible that they actually go hand in hand? And again, this goes back to a theme, and that is that resilience really does define how we understand adaptation in the context of childhood cancer.
So let’s talk a bit about resilience, post-traumatic growth, or benefit-finding. We use the same terms to refer to … all those terms to refer to the same concept. So benefit-finding has certainly been identified for survivors and parents. And just as most parents, children and siblings might be able to identify experiencing some symptoms of post-traumatic stress, they’re also able to identify some aspects of post-traumatic growth.
In one of the early projects we did here, we asked families to do what we call a card sort. On these cards we had listed potential changes to one’s self or their identity, how you view yourself, to their relationships within their family, with their friends, with their community; and in terms of their plans for the future, what they saw for themselves or their families in the future. And we asked them to take those cards and put them into two piles. One for how that … thing that had changed for the worse because of cancer. And another pile saying that it had changed for the better because they had had cancer. And what we found is that most patients, and siblings, and parents identified at least one change for the better as a result of having gone through childhood cancer and treatment.
And some of our survivors even said that if they had to go back and do it over again, they wouldn’t take away having had the cancer experience because it made them who they are today. I know for many of you caregivers and parents that may be hard to believe, but that was their own experience, their own way of seeing something positive that had come from the cancer experience.
And again that’s that idea that many patients and caregivers develop a positive view of the impact of cancer on their lives. Others have called this a compensated life picture. Or that negative aspects of cancer compensated for positive life expectations.
And here I have listed the key aspects of benefit-finding, or meaning making for post-traumatic growth. And as you read through this list you might think about, do any of these apply to you? Have you had any of these experiences? Do you see some of these areas as changes for the better? Would you put that card in the change for the better pile versus the change for the worse? And some of these, I think, really have stood out for us as we’ve talked with families. So for example, that having had childhood cancer, or “My child having had cancer helped me take things as they come. And led me to be more accepting of how things happen in life.” “It’s helped me realize who my real friends are.” “It brought my family closer together.” “It led me to meet people who’ve become some of my best friends.” “And it made me realize the importance of planning for my family’s future.”
We’re going to take another moment and answer questions that have been coming in before we turn to talking about what are the resources you might access, or what you might be able to do to deal with the questions. So how does one get over PTSD? Is a question a lot of you are asking. We’re going to start that discussion next. Again, it’s just the beginning of talking about getting over PTSD. Getting over PTSD is possible as I said, but it does take some work. So we’ll start to have a conversation about how that might happen. And then certainly link you to resources that might be helpful for you.
Another one is, “Can therapy help me cope with the loss of my child?” One of the things I want to say is that when we talk about post-traumatic stress and post-traumatic growth, it very much applies for families who have a survivor as well as families who have lost a child due to cancer. And what I would do is encourage you to talk to a psychosocial provider at your cancer center, or to reach out to us. And we can help link you with resources in your communities. Many people who have experienced the death of a child due to cancer note that connecting with other families, or actually getting therapy can be helpful as they try to, you know, honor their child, remember their child, and rebuild their families and rebuild their lives. So we can talk about that. We also do have a webinar coming up that is focused on bereavement and grieving families.
And then another question is, “How can I help my sister express her fears? She has kept a strong front, but it is starting to take a toll on her.” And we do hear this from families. And I’m gonna talk about that next. You know, how do you have these conversations with your child, with your sister, with your brother, with other family members? How do you open the door to having a conversation about cancer and its effects on a family? We’ll talk about that next.
So I just put this up as a kind of funny way to start talking about interventions and supports. And in this comic she’s saying, “That’s my survival kit. It has a meditation tape, aspirin and rose-colored glasses.” And as I start to talk about some suggestions for you, for your family, I want you to think about what’s made up your survival kit. What’s worked for you? I’d actually be interested in knowing what you found most useful to have in your survival kit. And for us to think about how we can continue to incorporate that and make our services better.
I just want to put this up briefly, I know it’s kind of a fancy picture of a triangle, but this is a public health model that really guides how we provide psychosocial services within our Cancer Center. What we think about is that bottom part of the triangle is most families. And so we think about how do we provide supports to most of our families who will experience distress initially, but recover with adequate support and education? And then what we do is we increase the support and intervention for families who are experience some of those risk factors we’ve talked about before, but also families who’ve come in to cancer experiencing a lot of prior stress, or being under a great deal of stress as they go through the experience of childhood cancer.
So I want to start by just by talking about kind of those universal, and that is what’s helpful for everybody in the context of childhood cancer? What should everyone know or receive? Well one of the things we try and do is provide a base line level of education and support to all of our families. Whether that be through social work, a child life specialist, online handbooks and resources, and direct links to community resources.
We also very much work with the healthcare team, and as a parent you can advocate for that, to think about ways to make procedures and other parts of treatment less traumatic for your child. Whether that’s bringing in a bag full of fun things to do when you come to clinic, talking with doctors and nurses about what your child likes or dislikes when getting needles, or helping your child find a voice to be able to express what makes that experience less difficult for them. Those are some of the things we’re talking about there.
And then finally, what we want to do is help families identify what their needs and strengths are, and rely on their strengths while finding resources to meet their needs.
When we meet with families initially at diagnosis — all our families — we talk about 10 strategies for supporting their child, their family and themselves. And I’ll just go through these quickly because I think they’re relevant to some of the question that we’ve been seeing.
Be patient and give everyone time to adjust. That experience of distress at diagnosis, or relapse, or even as a family moves off treatment, can be quite intense and difficult to bear at times. But know that that distress many times is temporary and that over time, and with time, families learn, your family will learn to cope and adjust with the changes.
Help your child understand what’s happening in a way that’s developmentally appropriate. Certainly if you are a teen, or young adult, or your child is a teen or young adult, the information they need will be very different than the information a 2-year-old might need, or an 8-year-old might need. But it’s important to explain to the child in a way they can understand what is happening, and why they are getting these treatments. Often children are most anxious when they don’t understand why things are happening. And they don’t know what’s going to happen next. If you’d like some help with that, your healthcare team can support you or be a resource for you in thinking about when do you tell your child and how do you tell your child what is happening.
Think of the healthcare team as helpers. We always say this, and that is we talk about partnering with families around the care of our children. And we very much believe that for families and for children, that’s going to be the most successful way of treating them and helping families through this experience in a way that leaves the fewest scars, both the hidden and the physical, over time. So ask staff questions. Find staff that you trust and use them as guides. Ask psychosocial staff for support, for preferred activities, or help as needed.
Encourage your family to share their feelings, and this relates to the question that someone asked about their sister. This can happen in different ways depending on people’s age. People can talk about their feelings by talking. As weird as, you know, we could potentially be doing now, or you are doing with your online chat. But people can also talk about their stories through general storytelling, drawing, hugging, sitting quietly next to each other to provide support. We also know that families talk about feelings at different times. Not just when you schedule a time to talk. But sometimes children talk at the most unusual times. Dinner time, bed time, while you’re driving in the car, while you’re sitting in the waiting room at the hospital. So be ready to have that conversation at any time.
Sometimes parents say, “I don’t know. Like should I bring it up? Should I say anything?” We often say it’s often helpful to share a little bit about what your experience is. Family members often feel like you have to be strong for everyone else. And that’s important to give kind of the positive, hopeful message. But it’s also important to recognize that the experience is difficult. And by saying, “I feel sad sometimes.” Or “I feel scared sometimes.” And helping them see what it is that you’re doing to cope or deal with that, that opens the door to other family members sharing their own fear, or their own sadness.
Keep as many everyday routines as possible. And I’m sure there are families out there laughing because they’re not quite sure how in the middle of active treatment you’re supposed to do that. But we say, “Hold on to something.” It may be one of your family routines; it may be two; it may be none. If need be, bring them to the hospital with you. But be able to hold on to, especially the things that are most precious to your family, or most important about keeping connected to family. Whether that’s a bedtime routine, having the child maintain a household chore, or decorating the hospital room in comforting ways.
Set limits as usual. I know some of you out there may be laughing about this one too. Families often say, “OK, you know what, my child has cancer, I’m not going to set any limits.” And then, you know, six months later, a year later, they’re thinking about, “How do I, you know, re-create these expectations. Or help my child learn to follow rules that are important to follow in society?” Or whatever it might be. And we say, as best you can, you know, if you have a set of expectation for your child before, you want to maintain them as they go through cancer treatment. And most children are able to meet that standard with the appropriate support, and resources and nurturance.
Encourage your child to do some things independently. This, I think, is harder for parents than it is for children. And it can be the smallest thing, like putting on their own socks for young children, to taking their dish to the sink when they’re finished with dinner, to letting a teen have their friends come hang out and watch a movie, or just talk and visit with each other. But let them do some things independently. And encourage them to spend some time with their peers. Whether in the hospital, in the playroom. Whether that’s connecting through Facebook or other ways.
Stay connected with family and friends. Sometimes that takes some planning. You know, how do you answer questions? How do you respond to families and friends reactions to the fact that you have cancer, or your child has cancer? It can take some managing of the communications and planning, but it’s really important to stay connected in one way or another.
And then this also, I think, second only to helping your child do some things independently, families talk about they don’t want to take a moment to care for themselves. But we really encourage parents to take a few moments, catch their breath, do something just for them. So that they can be restored and have energy to come back and do what they need to do for their children. That includes taking breaks.
And then I just want to take the last minute or two to just introduce a couple of other interventions. And then we’ll wrap up. So in targeted interventions, what we do is this kind of stepping up care. We connect families to virtual, such as this webinar, or in-person supports and education. We provide specific interventions, that might be therapy for certain symptoms. But we also provide other coping support.
This is one if you want to learn more you can go to our website. It’s a coping kit that we developed here in the Cancer Center. It’s called the Cellie Cancer Coping Kit. These are the elements. It’s a kind of cute, stuffed creature. We’re not quite sure what that is exactly. And that’s the whole idea. It has a little pocket mouth where you can put coping cards that are in that blue box. And then it has a handbook for parents to guide them and their children around coping with cancer.
And it’s laid out into different situations. Communication around cancer, how to deal with appointments and procedures, managing treatment side effects, adjusting to treatment, and re-entering school, and reconnecting with friends. The caregiver book also has challenges that concern the whole family and how to cope with them.
And this is an example of one of our coping cards, but it is, “I don’t like needle sticks, port access, or spinal taps.” And some of the sample strategies that caregivers and children can work out together. And you can see that this enlists some members of the team to help with the coping. We also have motto cards. Like a motto for what you can do to get through cancer, as well as cards where children can come up with their own coping strategies as well. And here’s some comments on the kit. “I like that I sleep with Cellie. I keep her with me when I’m getting the needle in. Cellie’s the bomb… it helps me a lot.”
And then finally for those who are experiencing … as we’ve gone through this discussion, if the symptoms that I talked about in terms of post-traumatic stress really resonate with you, and if you’re experiencing less of the growth that we’ve talked about, then it is perhaps time to consult with a behavioral health specialist for an assessment and potential treatment.
Here’s more information. I’m going to leave this slide up as we handle some of the last questions. Just noting that these are some of the ways you can access resources. The CHOP Center for Pediatric Traumatic Stress has actually excellent handouts for parents and for children about what is pediatric traumatic stress, and what are some tips for managing it. On our own Cancer Center, we have a number of different resources, whether within our Cancer Center, in the community. And also there you can find a link, if you feel like your questions haven’t been answers, or this has sparked more thoughts and you’ve got more questions as you leave the webinar tonight, it’s a way for you to kind of reach out to us either e-mail or by phone to say, “I’ve got some more questions. I have some concerns.” And we’d be happy to try and respond to them after tonight. And then there’s the National Child Traumatic Stress Network.
So one question coming in is, “How do I cope with getting back to normal after all is said and done and being able to socialize with normal families?” So this is part of that feeling of the idea that families tell us of you can never go back. So once you have a child who’s diagnosed with cancer, you always have a child who had been diagnosed with cancer. And that’s why I use that term, “the new normal” and this is what families tell us that is really important. And that is after cancer it’s important to take a moment to redefine what normal means for you and for your family. And part of that process is thinking through, how are you now going to relate to other families who have not been through this experience? And my advice for families is to think about getting different kinds of support in different places. I think before families go through an experience like that, you think like you can get all your support from one type of friend. But after an experience like this, families often talk about building a network. They have their cancer friends. They have the friends that they make through their child’s school who are kind of like the normal families that you’re talking about. And then they have other families who are completely removed from children and from cancer who can provide them a different kind of support. So think about redefining your family’s new normal. Think about what are the goals? Or what you hope for, for the future of your family and this new normal? And think about who are the different people you can rely on for support moving forward? Because you may not be able to get it all in one place.
So, “Is it typical for parents to grow further apart during a cancer diagnosis and treatment of a child?” Families we see have very different reactions. Some grow apart, some come together. One of the things we know is that when family members, and that can be married couples, partnered couples, members within a family, whether it be children and their caregivers, when everyone is focusing on getting by and dealing with something that’s incredibly stressful, sometimes all the communication becomes about, “When is the next treatment? How are we handling the next treatment? Who’s picking up the medication? What did the doctor day today?”
So yes, it’s very easy in the context of having that kind of stress plus managing other family members and jobs, to grow apart. And that’s why one of the recommendations that we had up earlier, is to take some breaks, and take some time to take care of yourself. Even if it has to force a conversation about one of the siblings, or what someone did at their job that day, or news from other family members in other places. Or even if it’s sitting down to watch a favorite television show together that you DVRed and was shown a month ago. Whatever it might be to bring you back together is very important. So the answer to that is yes, some grow apart, but others grow together. But much more energy has to go into remaining connected across the family.
Another good question is, “What is the difference between remembering something, being very sad, and having difficulty remembering and PTSD?” So many people, when they remember cancer, will feel some sadness. Many people may have difficulty remembering some aspects of the cancer experience in part because there was shock, there was a lot going on. And for children, they were in pain, or didn’t feel well. So it can be hard to remember that experience.
In PTSD those symptoms are so severe that it makes it hard to get out of bed in the morning. Be able to function when you need to be at work. To maintain relationships with friends or other family members. So when it’s true PTSD, it’s so severe that you can’t maintain other aspects of your life.