Psychologist Lynne Kaplan, PhD, and child life specialist Sarah Pajak discuss the experiences of the siblings of a childhood cancer patient.
The Sibling Experience: Pediatric Families Coping With Childhood Cancer
Lynne Kaplan: Hello and welcome to tonight's event. This is the second in our webinar series titled, "First Steps Toward Healing." I'm Lynne Kaplan and a psychologist at The Children's Hospital of Philadelphia, where I provide support for patients and families in the Cancer Center.
Sarah Pajak: My name is Sarah Pajak. I'm a certified child life specialist at the Cancer Center at The Children's Hospital of Philadelphia. My goal as a child life specialist on the Oncology Bone Marrow Transplant Unit is to help children and families cope with the emotional stress and anxiety associated with cancer diagnosis, treatments and therapies, including transplants.
For those of you not familiar with child life specialists, I work with a large multidisciplinary team, including music and art, as well as school teachers to help families manage the stressors and anxiety that cancer and cancer treatment place on them by providing coping, education and psychosocial care, by normalizing the hospital experience for patients and families.
This normalization most typically involves a whole lot of play and why child life specialists are commonly referred to as the "play people," at the Hospital.
This presentation was prepared to offer you, the parent and caregiver, the opportunity to gain a background and insight into the experiences of your child, or children, who are not diagnosed with cancer. We hope to offer you throughout this presentation this evening helpful information, tips and suggestions to allow you to feel confident in caring psychosocially for your other children in understanding how the cancer diagnosis affects them.
After looking at research related to behavioral and emotional outcomes of siblings during and after their brother’s or sister's treatment, we'll provide for you ways to promote coping, interventions, programs and resources that are available to families.
Before we get started, we just wanted to make note of how to chat and submit questions tonight. So below the video feed is a moderated chat window. You can use this window to connect with each other as well as submit your questions. Questions will be posted as they're answered during scheduled breaks for question and answer. And just to note, we cannot provide specific advice regarding diagnosis or treatment.
Lynne Kaplan: So before we get into some of the research relating to siblings and the strategies for coping, we thought that it would be important to spend a minute or so really taking a look at some aspects of a sibling's potential experience. For me, it's helpful to think about this in terms of a story.
The story might begin with doctors’ appointments and a child in the family who gets diagnosed with cancer, whether it's meetings with doctors and other staff from the hospital. Perhaps they take place inpatient or outpatient, and then patient and parents and caregiver get lots of information and lots of support.
Then someone has to tell the sibling. The sibling hears about or learns about the diagnosis and may have a variety of questions and reactions. Maybe they ask their questions and maybe they don't. Maybe they go to the hospital with the family, but more often, they don't. This may be the beginning of the sibling starting to have a very different experience than the child with cancer and one or more of the parents or caregivers.
Throughout treatment, the patient and the caregivers often receive lots of information, continued support and encouragement. The sibling often gets less of this, at least from the hospital. Their lives change in several ways. They spend less time with their parents or caregivers and with their brother or sister. Their routines change, they may have different goals and increased responsibilities.
It's easy to see how … some of the reasons why it's so important to understand the experience and to learn ways to provide support for the siblings.
So, when asked about reactions around the time of diagnosis, the family members, including the siblings, report some of the following: experiencing shock, disbelief, denial, feeling confused and frustrated, anxiety and fear, feeling helpless, sad, mourning, feelings of grief, guilt and anger.
And siblings also report loneliness, feeling marginalized, jealous and worried. Within one month of diagnosis, 57% of siblings report impaired emotional quality of life, and close to 40% of siblings report feeling significant difficulties with memory, concentration and learning within one month after the diagnosis.
Sarah Pajak: When children of any age enter the hospital or healthcare environment, they're entering into an unfamiliar and sometimes frightening place, which in turn can create stress. These stressors vary greatly depending on multiple factors, including the child's psychosocial and developmental age, their previous hospital experiences, and the child's daily environment and support system.
So, let's think about how all these stressors in turn affect your other children when cancer treatment becomes the center of your family's life. Cancer treatment and cancer diagnosis affect each member of a family in very different ways. The patient experiencing surgery, radiation, chemotherapy and repeated hospitalizations causing them to look, feel, and often act very differently at times from the child they were prior to diagnosis.
The parent being present and learning to support their ill child in all these new uncertain situations. And then the siblings who may witness and be a part of some of these experiences, or be sheltered from them at home with other caregivers, imagining and creating misconceptions of where their family is. Though these uncertainties are endured in trips to the hospital do become routine, what effects are these experiences having on your other children? And how do you as the parent help them cope? How does this new routine or new normal, as many refer to it, impact your children not diagnosed with cancer?
Lynne Kaplan: So, for siblings in particular during treatment, there's many disruptions in family life which takes a toll on them. As we mentioned before, there's … they are absent from their brother or sister, they're separated from their parents, and that often fuels their confusion and anxiety.
We've seen that there's been a three-fold increase in behavioral problems, a two-fold increase in emotional problems, decrements in quality of life, and sometimes declines in school performance. It's also important to mention that there are positive aspects of this experience too, which we'll get to in more detail.
So, what about siblings after treatment? So, sometimes the family patterns that were forged during treatment remain. The siblings may continue to feel marginalized and disappointed when things don't return to the pre-cancer patterns in the family. There haven't been evidence of increased anxiety and depression in the long run, but there's been very little research on this at this point.
So, one model that's been used to understand the experience of families and children diagnosed with cancer as well as the siblings, is the post-traumatic stress model.
So I just want to mention that there's been, as some of you may know, there's been an update to the DSM, which is the manual of the mental health related disorders, where there's been recent changes, but some of the research that I'm going to be referring to includes diagnostic criteria that I'm going to be talking about in the next few slides.
We're not going to spend too much time on the specifics of post-traumatic stress, but we wanted to give a quick overview of post-traumatic stress and post-traumatic stress disorder. So, what are the criteria?
First, the person has been exposed to a traumatic event. So, a traumatic event is one in which a person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of themselves or others. So, you can see that a cancer diagnosis of one's self or one's family member could qualify. And the person's response involves intense fear or … and hopelessness.
And there are symptoms of re-experiencing, which includes things such as recurrent and intrusive, distressing recollections or memories, acting or feeling as if the event is occurring, and a few of the other things listed.
And then another grouping of symptoms is the avoidance and numbing. So, for example, efforts to avoid thoughts, feelings, conversations, activities, certain people, inability to recall an important aspect of the event, feeling detached or estranged from others. And then for the symptoms of increased arousal, that includes things such as difficulty falling asleep, increased irritability or outbursts of anger, having a hard time concentrating, etc.
So to qualify for a diagnosis of PTSD, or post-traumatic stress disorder specifically, there needs to be the following in place. So, at least one re-experiencing symptom, three avoidance symptoms, two arousal symptoms that last over the course of one month and cause significant distress or impairment in functioning.
So, many of the symptoms I mentioned are common reactions to traumatic experiences. They become more problematic when they last over the course of at least one month and they cause significant distress or impairment in functioning, like I mentioned.
So, there's a lot of information on this slide, but I just wanted to point out a few things here. So, as you can see, close to diagnosis, 10% of patients were in the clinical range in terms of post-traumatic stress, 4% of parents were in the clinical range, and for siblings, 25% qualified for a diagnosis of PTSD, with 60% falling in the moderate to severe range.
So, clearly there are many siblings who experience higher levels of post-traumatic stress. And then looking at the symptoms, you can see … if you look at the bottom, the numbers in red, you can see the high percentages of siblings that reported symptoms of re-experiencing, arousal and avoidance; the 90%, 82% and 56%, and you can see that these rates are higher than the children diagnosed with cancer.
So, the symptoms can certainly be distressing and can have a negative impact on school and relationships with friends and with family. However, it's also important to mention that the symptoms can also be normative and actually help siblings to adapt and to cope. So, what are some of the ways that trauma symptoms may be normative and adaptive?
So, the feelings of distress communicate a need for support; they let people know that they need extra help. Some re-experiencing symptoms allows for a cognitive processing of the event. And we know that processing the event helps people better understand and get through the event and through their feelings and emotions.
Avoidance can help reduce distress and allow functioning, and arousal helps to keep the body ready to recognize and deal with any additional threats that siblings might be presented with.
So again, as we said, siblings do struggle in many ways but they also report many positive outcomes to having a brother or sister diagnosed and treated for cancer.
So, you can see them below. They reported increased maturity, responsibility, feelings of being independent, personal growth, empathy, thoughtfulness, and having more compassion for other people.
So, we'll take a minute to stop here and take some — we'll take a few minutes to answer some of your questions. Let's see, we'll read over some of them.
Sarah Pajak: So, the question is, "Is there a difference between the experience of the sibling who's still living at home and one who is grown up and has moved away?"
I think that that is a great question and a really good point to raise because some of the information that we're sharing, you could think would be directed toward a single family home in that that patient who is diagnosed with cancer would be living with the entire family unit, and we certainly meet many forms of families, and families who are living in different homes and children sharing different homes.
I think that some of the information Lynne has shared as far as some of these early, I guess you would call them "cries for help," but as far as what they're experiencing and their inabilities to cope have definitely carried through into later years with these siblings. And I think that what we're going to talk about further in the presentation is how to promote positive coping in your children, so that as they do continue to grow and your family moves away from diagnosis, that you feel confident you gave them that psychosocial support.
We're going to talk a lot about how honesty is one of the best things to utilize with your children, whether they're in the moment experiencing the diagnosis with you and your ill child, or like the question states, "They've grown up and moved away." Being honest in letting children know what you know can sometimes be the most helpful.
Lynne Kaplan: Part of our question was, "Is there a difference between the experience," and the experience certainly can be different if someone is in the home versus outside of the home, and I can see some pros and cons to both. So, if there's a sibling who's living in the home, then some of these changes in routine, and some of the things going on during treatment especially, can be much more obvious.
They might be siblings who have to be displaced or living with another family member, or have other people stay with them, and some of those things might be more obvious, whereas someone who is older and has already moved away, maybe those things aren't quite as obvious to them or a part of their daily lives.
However, some people say that if they are living outside of the home and they're not … sometimes they don't feel quite as connected, so maybe they're not getting as much information and that might be scary to them, too.
Sarah Pajak: And we will address further in the presentation, ways to sort of bridge the gap between home and the hospital. So hopefully that can be interpreted wherever home would be.
Lynne Kaplan: People are also wondering about some things that we can do to prevent post-traumatic stress disorder and post-traumatic — I would imagine post-traumatic stress in general — and that also will be some of … we are going to provide lots and lots and lots of suggestions about ways to help support your family and your … the siblings in particular. And those are all things that we recommend for healthy adjustment and healthy coping, but also to prevent things like post-traumatic stress and post-traumatic stress disorder.
I think that's all the question for now, and remember, you can keep submitting your questions and we'll stop again at the end to answer more of them.
Sarah Pajak: I think that the questions that were posed so far lead us in a great way into the next part of our presentation, which is "Helping Siblings Cope," so let us take a look now.
So, there are certainly positive outcomes that siblings report from their experiences of having a brother or sister with cancer, some of which Lynne just reviewed. However, it's so important to be aware of and use ways to support siblings and to help them cope. Next, we'll be talking about several ways that parents and caregivers can help.
First, we want to help you recognize that trying to navigate all of your children's concerns and fears during, throughout and post treatment is a large task and you are not alone in asking yourself, "How do I and how will I answer my children's questions?"
There are many commonly asked questions that caregivers expressed to medical staff regarding their ill child that they can quickly find answers to and often, when they are hard answers to give, can find within the hospital the support they need to provide their sick child with. The needs of siblings can often be missed and overlooked because the concern for an ill child's mental health is so great that we assume since siblings are often removed from the hospital and medical interventions happening there, that illness does not affect them in the same way.
This is why we really encourage parents and caregivers to think of their other children as a shadow diagnosis. That they too experience the illness, just in a much different way than their sick brother or sister. They still very much feel its impact on your family unit. As you as parents work to manage the responsibility and stress that comes with the hospitalization of a child, you're also faced with the difficult task of helping your other children make sense off what's going on around them.
Lynne Kaplan: When choosing which strategies and ways you think would work best to promote coping in your child, which we'll get to, keeping in mind developmental considerations can be very helpful, so we wanted to take some time to go through the following developmental age groups and point out to you key developmental milestones and common challenges, typical behaviors and reactions, and ways to help in each.
When a brother … when a child's brother or sister becomes ill and requires frequent hospitalizations, children may have many different emotions as they're faced with new and very often confusing experiences. What is important for your child to know is that there is not a right or wrong way to feel, and that each person grieves and copes in their own way.
We want your children to not compare themselves to anyone, to recognize they are unique individuals just as they were before these challenges … before these changes happen to your family. and that they are just as important to you, their parents or caregivers, as their ill sibling, and deserve to know what is going on and understand the changes they're experiencing.
What we hope for them is that they always know there's an adult or guardian figure in their life that can identify and connect with them and who will help them through the difficult and emotional times.
So, when we look at these specific age groups throughout one’s childhood into adolescence, there are many key developmental milestones found in each age group that can help you as a parent identify what are typical behaviors that children this age should and do exhibit, and what are the behaviors that are more reaction to life experiences.
Knowing these challenges throughout different ages of development is helpful, but then what? So, knowing that your child or children are behaving differently due to circumstances out of your control can be very hard on caregivers. So now, let's take a look at the milestones and what are ways to help.
So, infancy is considered birth to 1 year. Key developmental milestones that are occurring in infancy include developing a sense of trust and secure attachment to a parent and caregiver, that their needs will be met. Learning occurs through a lot of stimulation: sight, touch and sound, and exploration of their physical self and their environment. So, some common hospital … some common challenges for infant siblings is the separation from their parent or caregiver. The parent or caregiver needing to be at the hospital and not home as much, which then in turn affects their lack and loss of stimulation in a normal routine.
So, some typical behaviors and reactions that we see are fussiness due to a lot of inconsistency in their lives, and changes in their sleeping and eating patterns. Ways that can be helpful to support infants is encouraging consistent caregiving in all settings and maintaining the schedules and routines that you normally do in the home setting if the infant has to be in the hospital as well.
Moving into toddlers and considering toddlerhood ages 1 through 3 years, we know that they're becoming extremely expressive in their skills, and that this is a skill that's beginning to increase but that their understanding is still very limited. The world is primarily focused on them, and they're beginning to master and grow in their motor and language skills, but again, recognizing that vocabulary is limited, and fearful when their family's not around, and this concept of stranger anxiety and attachment to caregivers.
So, very common challenges for toddler siblings is separation anxiety and not being with their primary caregivers, their inability to ask questions and being very confused about experiences of their brother or sister due to a lack of vocabulary.
Typical behaviors and reactions: We see much regression including the loss of newly-learned skills, for example, potty training, temper tantrums and aggression.
Ways that can be extremely helpful to support a toddler sibling is offering and repeating very simple explanations in language that they are familiar with. Explaining what a “boo-boo” is and keeping your vocabulary — as far as hospital vocabulary — very simple; maintaining their limits on discipline as you would normally; and keeping, again, their regular schedules and routines — bedtime, bath time.
Moving into preschool age, we know that preschoolers are beginning to imitate adults and their playmates and understanding their sense of self and engaging in pretend play. They object to major changes in routine and have an increased imagination and magical thinking. So, for many preschool-aged siblings, this continued separation from their parent or caregiver, though they're still beginning to separate and learn and explore their own needing that support from a consistent caregiver.
They too, similar to toddlers, cannot fully understand their sibling's illness, and with the beginning of imagination and magical thinking, begin to make up details about things that they may not fully understand or have been explained to them. So typical behaviors and reactions are acting out, aggression and regression, and clinginess from this fear of being away from their family.
So, we suggest for preschool age to reassure them that it's not their fault what is happening to their brother and sister in the hospital. Ask what they already know and address any misconceptions to clear up any magical thinking, and encourage questions and providing simple, concrete, honest answers.
Our school-aged siblings, we look at a key developmental milestone. Now, school-agers begin to have an ability to sort of understand the sequence of events. This is our age group of siblings who really begin to ask a lot of questions and begin … the age group who can really grasp and understand what a cancer diagnosis can mean. They have the ability to talk through problems and solve them, and are beginning to have, again, this increased independence.
Common hospital challenges for school-aged siblings is feeling feelings of worry or being scared for their brother or sister. They may also exhibit signs of being jealous of the special attention that their sibling is receiving, even though they're able to understand that cancer is not something that they want to have. They begin to feel that they're scared they might lose their sibling, or even guilty about having negative emotions about their hospitalized sibling.
So, we encourage families to allow this age group to really ask questions about the hospital and illness, giving honest, concrete answers, again, and acknowledging and supporting their feelings. This is an age group that we encourage families to know it's OK if they're not wanting to talk yet; them not talking is telling us a whole lot.
And into adolescence, which is what we consider 13 to 18 years, we know that this is an age group with an increased dependence on their peers and social groups. They're really working on establishing their own personal identity within these peer groups, and are naturally seeking to separate from their families and gain more independent.
So, some common hospital challenges is that this age group is often called upon to meet increased caregiving demands on their family, where a parent has … their presence has been removed from a family, needing to be at the hospital, adolescents are often required to step in, in turn sometimes losing the loss of their social support systems, which can be so vital at this age group.
They can also feel as though their privacy is violated and insecure about their family being different from their peer groups. So, some typical behaviors we see in our teenage population is really feelings of anger and frustration with the situation their family's been placed in, but also developing very adult-like coping skills in that they're being asked to maybe act much older than they actually are as far as helping.
Ways to support an adolescent through a cancer diagnosis: We encourage peer activities and expression. We want adolescents to know that it's OK to still connect with and be a part of their communities and their schools and their social support groups just as they were before. To be honest, to lessen their fears and anxiety, this is an age group that can clearly understand the effects cancer can have on a person. So providing them the opportunity to really listen to their concerns, and sometimes even involving them in decision-making for your family, while respecting their independence.
So, as you see, there's lots of suggestions given so far. We're going to provide a lot more suggestions for coping, suggestions in general, as well as really specific suggestions to help the sibling who has not been diagnosed with cancer. And we don't want people to feel like they need to do every single one of the things that we suggest, but it's really helpful to identify a few things that feel comfortable to you and really fit well with your family.
Lynne Kaplan: So, in terms of thinking about knowledge, it's really important, as Sarah mentioned a couple of times, to talk to the siblings to help them understand what's happening. As she said, it's often the case that their ideas about what are happening are a lot scarier than what's actually happening.
Sarah gave some really great ideas about finding age-appropriate strategies and really using developmentally-appropriate language when you are helping the sibling to understand what's going on. It's helpful to understand also what's coming up, so help them prepare for some changes that might be taking place, whether that's changes in the schedules in the family, changes that might be happening in the sibling's appearance, changes that might be happening in terms of different medications that their brother or sister might have to take and different side effects and things like that.
It's really helpful for the sibling to feel included in what's going on at the hospital and what's going on in terms of treatment. So, participation in medical discussions is helpful if it's appropriate for them to participate in certain discussions and if they want to actually participate in those discussions. It's really nice when families can provide the siblings an opportunity to ask questions of the medical team on their own so they can ask some direct questions to doctors or nurses and things like that.
We also suggest that parents and caregivers are open to the questions that the siblings ask, that the team is open to the questions that the siblings ask, and that we want people to be honest. We don't expect that you have all of the answers. We don't expect that the team always has all of the answers, but it's really important that siblings feel that people are open to their questions, even the questions that they may not be asking.
It's helpful to sort of take some time to think about things that they might be wondering and provide some of that information ahead of time.
It's also very, very important that siblings understand that cancer is not contagious, and that neither they nor anyone else did anything to cause the cancer.
In terms of connection, here are some ways that you can help your sibling stay connected to the family, especially when a family needs to be … spend lots of time at the hospital, and ways that you yourself can stay connected to your child without cancer. So, some suggestion include things like bringing family pictures to the hospital and from the hospital, sending cards and notes back and forth, with loving messages or funny messages, sharing updates about things that are meaningful to your child without cancer. That could be things like grades, what's going on with their friends, sports, music activities, things like that.
You can share videos, take videos of people of the family and send videos back and forth. Try your best to spend one-on-one time with your child, with the sibling. Encourage them to come to the hospital so that they can have a better understanding of what happened there and what it's like there. Sometimes, it's helpful for them to spend time at the hospital because sometimes siblings feel like the child with cancer is at the hospital with their parents and it's always some big party and they're always having all this fun, and it's helpful for them to have a better understanding of what goes on throughout the day.
It's helpful if you can arrange some daily contact with you and the child without cancer, with the sibling, or with another trusted adult. So, it could be someone in your community, someone in your neighborhood, someone in your family, someone at school. And it's also really important to allow them some time with their friends too.
So, thinking about communication, we always encourage people to really listen and talk with their child without cancer. So, as I said before, really showing that you're interested in their thoughts and feelings, scheduling regular times to talk, remembering to talk about what's important to your child without cancer. Maybe it's about the cancer or its treatment or just about other aspects of his or her life. It's helpful to find ways to ensure that your child knows that you're available to listen to them even if they don't want to talk in that moment.
And it's really helpful to share your own feelings, such as sadness and anger, to show them that it's OK to feel and express those feelings.
Another thing we encourage often is consistency, as much as possible. This can be especially difficult, but again remember just to choose the things that you feel you can do or that best fit for your family. So, some suggestions to promote consistency include things like having regular routines because that helps to promote a sense of normalcy and helps kids to know what to expect.
If possible, have them stay in the same bed each night, having consistent bed times, the same mealtime routines, have them go to school, have them engage in activities that they engaged in before. As much as possible, try to keep the same family rules that have been in place, and again, remember to be patient with your child because distress and new behavior difficulties are common.
So, you may be trying to enforce different family rules, or you may be trying to enforce your family rules and boundaries and you may see some push back, but again, it's important to be patient with your child.
So, what else? Focusing on love, always important in the family, not just for your child who's going through treatment or who’s been diagnosed with cancer, but definitely for the sibling as well. So, giving them lots of hugs and kisses if they want them from you. Certainly don't force them on them if they're not so interested.
Remind them of how much you love them. Remind them of how much you think about them even if you aren't able to spend as much time with them as you'd like. Provide lots and lots of praise, and provide updates about your child without cancer and do some bragging too.
You may find that people start to stop you all the time to ask about how your child is doing with their treatment and how they're feeling, and it's really important to make sure that you're focusing on your other children as well, so you can provide updates about them and some things that you're especially proud of that they've been doing.
Another thing that sometimes is really hard for parents and families but is so important to do which is relying on others. So, it's helpful to inform teachers and school staff that your child has a sibling with cancer. You can give them information about the diagnosis as well as some common reactions in siblings so that way, they know what to expect. They can think through different ways that people at school can provide more support for the sibling. And then stay connected with the school and ask them directly if they can provide some extra support, as much as is needed.
You want to, again as I said before, encourage caring relationships between your child and a trusted adult so they have multiple people that they feel care about them and are supporting them and that they could go to with questions and to talk. And then stay connected with those trusted adults and ask them to provide extra support to your child.
Sarah Pajak: So, some of you may have already been asked why are you constantly needing to be at the hospital? Why have you been upset or acting differently? Why does my brother or sister have to be in the hospital, and do you care about my brother and sister more than you care about me? All very commonly asked questions by brothers and sisters, and these are questions that develop as they try to understand and cope with the changes that are going on around them.
So, what are some things that parents can do to help support these children? And some of the suggestions that are listed here are ones that have worked for other families, kind of stemming from the ones that Lynne just suggested. So, these are a lot of activities that can be family-driven, that can be sibling and child-life driven, but drawing pictures and making photo collages to decorate hospital rooms really gives the sibling an opportunity to feel like they're in charge of something, recording themselves reading a book or a special message that can be sent to the hospital.
A lot of times, we encourage families to create a journal that can be sent back and forth that all members can be involved in to share what's going on both at the hospital and at home.
Creating an "All About Me" made by a sibling for the ill child to really let the medical team know about their brother or sister. They might think that the doctors and nurses might want to know what their brother or sister's favorite colors are, the TV shows they like, things that make them happy. Knowing that they have done a part to help aid in their brother or sister's ease at the hospital can feel really empowering for siblings.
Kind of going along with that, writing a letter to the medical team to let them know about their sibling. Also connecting with your hospital’s Child Life Department for Skyping capabilities, and creating countdown calendars for both at the hospital and at home if you're able to.
Looking at some other resources for what else you can do. SuperSibs is a resource that's available on the Internet for any families that are interested. It's a resource that geared towards brothers and sisters of patients who are diagnosed with a chronic illness. It's a way to really support them in their journey. It's focused only on them and is a free service to families. It's a great website to check out.
Sibling support groups and workshops, seeking these out at your institutions. Here at The Children's Hospital of Philadelphia, we have a sibling workshop called "SibShop" that's available to all siblings of hospitalized children, and also an oncology-specific support group, "Oncology Sibology," which is actually occurring this coming November, November 2nd.
Camps for siblings, there's camps that are diagnosis-specific. There are camps that are available for patients, for siblings, for entire families, seeking out those opportunities for your family. Other resources such as Patches, the Feelings Bear that we use here at the Cancer Center. It's a bear that teaches children what different emotions are. We talked a lot about kids not having the vocabulary to know anything other than "mad, sad or happy."
"My Siblings Scrapbook," created by My Medical Memories, is a book that's geared directly towards siblings to help them understand everything from hospital terminology to the different people that their brother or sister may meet at the hospital. "Brother and Sisters Tools to Help Children When a Sibling Is Sick” is a book that a lot of the suggestions I included this evening come from, which is a book that was created here at the Cancer Center by child life specialists to support parents and caregivers in helping their other children that are not sick.
Utilizing child life specialists at your institution, whether that's touring a sibling for the first time at the hospital, sharing pictures and age-appropriate information about their sick brother or sister, and helping parents like you to convey difficult explanations about diagnosis and treatment to siblings.
Also, inquiring about whether your institution has family consultants that are available to you to sort of talk about similar experiences that they have been in comparison to you and how they have worked with their families in similar situations.
And obviously for concerns about ongoing difficulties, inquiring help through, like Lynne said, hospital treatment teams, schools, pediatricians, and community mental health providers.
Coping with cancer is tough for the child diagnosed, parents, friends and certainly for the siblings, as we've addressed tonight. With love, encouragement and support, siblings of children with cancer can more easily cope with their distress and can grow in many positive ways. Remembering that if we can learn to understand the impact that cancer diagnosis has on siblings, we can help support and create more positive outcomes and more positive coping in all our brothers and sisters.
So, we hope tonight that we've given you a better understanding of the experiences of siblings that some of the research that we provided related to behavioral and emotional outcomes has helped identify the positive outcomes as well, and that you found helpful the ways to promote coping through the interventions and programs and resources that we've shared. And that support encourages again, many positive outcomes and much positive coping.
Lynne Kaplan: So, we're going to take some time now to try and answer any questions as we can. It looks like there's quite a few. So, one question that was asked is, "How do families deal with jealousy and anger of siblings who think that all treatment scans and follow-up appointments are a fun day out of school and they don't see the difficult side?"
This is such a great question and this is something that we get asked often and that we see when families — when we see families in clinic or when they come to the hospital. And one of the things that can be helpful is, as much as possible, you know, thinking about bringing the siblings to different types of visits at the hospital, so again, that they can see that there may be times at the hospital that are fun and that not absolutely … not everything there is scary. But allowing them to see that not everything is fun and games, and helping them to see that there's a lot of work that needs to be done.
So, Sarah, I don’t know if there's any … I know that you do a lot of preparation for kids, especially if they have procedures like scans and appointments, and if there's certain ways that you kind of incorporate siblings.
Sarah Pajak: So, one of the things I was going to suggest, and I know that this is not a year-round suggestion, but one of the things we talked about is having a sibling come to the hospital and experience the hospitalization with their brother or sister. We talked a lot about how siblings sometimes will have this imagination that really wanders, and what they think actually happens at the hospital could sometimes be very different. Sometimes even thinking that it's this fun experience because their brother or sister gets to spend more time with you.
So, during the summer months, we encourage a lot of families to bring brothers and sisters into clinic appointments and visits. There's spaces that they can be during those appointments. But I think like we said, being very honest as far as what's happening at those appointments and what you're checking for, continuing those conversations daily, and helping to remind the brother or sister that this is a doctor's appointment very similar to what they have scheduled, just like they need to be checked out too.
Lynne Kaplan: Sometimes, it can be especially difficult to bring siblings to the hospital for appointments, again, depending on their age. So maybe thinking about some of the other ideas that we suggested to maybe give them a better understanding of what happens at the hospital even if they can't be there.
So, if parents are able to take some pictures of them, what their brother or sister has to do, kind of while they're at the hospital. Or they ask particularly about the scans or something like that, that they can take some pictures of what it's like when they're in the machine, or as they're kind of sitting there waiting, bored — what that's like.
Sarah Pajak: Yeah, and again, if your child who is not diagnosed — they may also be seeing that as an opportunity for their sibling to be spending special time with you. So maybe on days where you know you're going to have an appointment and you're bringing your child who is diagnosed to the hospital, that that's an evening that you really set aside some time to spend time with your other child and recognize that now they're getting some special time with you.
Lynne Kaplan: So, another question is, "What are some ways to approach a sibling who seems unwilling to talk about what is happening to their brother or sister?" So, thinking about kind of highlighting some of the suggestions that we made, I think that one thing that's really helpful to keep in mind is that kids, teenagers, young adults don't always necessarily need to be verbalizing what's going on, whether with their own experience or in terms of what's happening with their brother or sister.
So, I think that it's always important to remember to let the sibling know that you are available to talk, that you're available to listen, that you are interested in what they're thinking, that you're interested in what they're feeling. Also keeping in mind that for some kids, talking and asking question isn't what's most comfortable for them, and maybe there's other ways for them to share what they're thinking and what they're feeling.
So, that could be through drawing pictures or doing something creative. It could be through music. Sometimes it's those unexpected moments where some of the most poignant comments and questions come up. So, maybe there's — maybe people are watching TV together and there's a commercial or there's a television show that kind of exemplifies what you think that your child might be thinking or might be experiencing, and you could just kind of make a little comment or let them know that you're wondering if they're thinking this or you're wondering if you're thinking that. Or let them know what some other kids might be thinking and feeling and that might be true for them and if it is, that you're open to hearing what those things are for them.
Sarah Pajak: A lot of parents have expressed that you feel like once you're home in a normal routine and you're not talking about cancer, how do you bring it up? And if your child seems to be doing or interacting in something that they normally do and you wanting to keep that normalcy, why and how would you bring up cancer?
And the reason why child life specialists do so much of their teaching and education through play is because play is just what's known and most common to children. It's what they do best. So, really, when interacting with your child in a setting that they're familiar and comfortable in, can sometimes be the best time to bring up conversations. And like Lynne suggested, maybe rather posing a question, but also stating, "I just want you to know this is how I'm feeling," and being honest.
You know we talked about having answers, and we tell families a lot of time saying, "I'm not sure of that answer but I wonder if we can find someone who does know it," is an answer, and that's okay to be honest and say that you don't know because your child now trusts you that you're being honest.
So again, sometimes it can feel uncomfortable if your other children are doing something they're enjoying and you're not wanting to bring it up in that moment. They're also doing the one thing that they're most comfortable in, and may be the opportunity where they'll be most comfortable to talk.
So, another question has some similarities, and again, this is something that we get asked often which is, "When a child of different ages is not necessarily asking questions and doesn't really want to talk but may be having a difficult time with things going on, how do you balance kind of forcing information on them or forcing knowledge on them but not wanting to kind of keep them separated or shut out? What are some ways that you can bring information up to them?"
Lynne Kaplan: So, I think what's really important to point out too is that you — what's really important is that you're aware of this, and I think that that is the best place to start. You're aware that you guys are trying to be honest and that he's suffering from some of the things that we've pointed out.
So knowing that you shouldn't force knowledge on him is great really — he or she avoiding the topic of wanting to talk is I think telling you a whole lot too. There are certainly ways to maybe present talking to your child by giving them the vocabulary to do so. So, a lot of times, we as adults automatically are flooded with lots of concerns and questions in our head when we know about a cancer diagnosis or treatment, and sometimes children such as a 6-year-old wouldn't necessarily think of all those things.
So again, kind of going back to one of the things we said is that sometimes they're just not sure what to ask, or that they may have these adverse feelings of everyone around me is really sad or really upset and I don't feel that way. So, we talked about acknowledging their feelings that they are having and ensuring them that those are OK, too. But possibly opening up conversation stating how you're feeling to give them the vocabulary to know.
Sarah Pajak: I think again, I'm thinking about the … not necessarily sitting kids down and forcing information or forcing knowledge on them, but having some of that information and knowledge come up naturally in conversation.
So, if for example, there was an appointment that day, and going back to one of the other questions, maybe scans were part of that appointment, having a conversation with your child with cancer who had to go through those scans while the sibling is either close by or is able to hear, again keeping in mind, using developmentally appropriate language.
So, kind of talking about the experience so the sibling is able to hear what's going on and then you can just kind of mention, "Oh, did you have some questions about that?" But just kind of talking about it generally, so if they are feeling uncomfortable with it, they can kind of go off on their own, but at least they had an opportunity to listen to some of that information.
Well, let's see — another question — these are kind of long so we'll read over them first as we're kind of formulating some of our thoughts. So again, another good one. I'm definitely noticing that a lot of these questions are things that people ask us, just as we're working with lots of kids and families at the Hospital.
So, one thing that people get concerned about are siblings kind of keeping score and really feeling jealous of some of the attention that the child with cancer has received, feeling angry about lots that have gone on, whether it's because of again, the attention that they've received, different gifts that they've received, things like that.
So, you know, we mentioned a couple of things and I think a few things to highlight, some ways to address this and prevent this is — in terms of the jealousy, one way I think that we see a lot of the jealousy is the attention that is given to the child with cancer from the parents, but also there's typically lots and lots of gifts that are given, and one thing that the parents can keep in mind, parents and caregivers can keep in mind, is to perhaps if there are lots of gifts coming in, maybe they don't give them all at the same time.
Maybe they sort of hold them and if there are special events or certain times that you think might be more appropriate to kind of give something to the child with cancer, maybe also thinking about at the same time, having something available for the sibling too. That can help address some of the jealousy and then some of the anger as well.
Again, in terms of feeling jealous about the time that people, that parents and caregivers are spending with the child with cancer, those are times to really think about identifying some special one-on-one time that you can spend with the sibling. If that's in person, that's great. If it's on the phone or FaceTime or some other type of technology that — to help with that special time so the sibling is also receiving special time and attention from the parent.
Lynne Kaplan: And I think recognizing too, when during this special times set aside for your other children not diagnosed with cancer, when conversations about the cancer diagnosis are affecting your family should happen and when it should just be protected time about that other child and what's going on in their life and you're not talking at all about the ill brother or sister.
I think that the suggestion of the sibling is coming and visiting at the hospital, most families we see spend a lot of time in the room and the care and attention again is directed all towards the patient. So, even doing something simple as taking a walk to the cafeteria, just you and that child to have dinner by yourselves, or walking around through the hospital going on a trip together, taking a break from the room to be alone.
Sarah Pajak: So, I think we have time for just one more question, so let me go over a couple of these. So people are wondering about considering a sibling who may be afraid to visit their brother or sister. Sometimes, those fears are related to kind of what it might be like at the hospital or some physical changes that — either that they know that their brother or sister has gone through or they wonder if their brother or sister has gone through.
I think one of the biggest things here is talking with them and preparation. So helping to describe what it's like at the hospital, and if there's a way to show pictures, you can take pictures and show it to them. You can show them pictures through the website.
Lynne Kaplan: Yes, some institutions/hospitals, the Children's Hospital has … when you go to their main website, you can actually take virtual tours of different parts of the Hospital, so your institution may have something like that. Most children when they think of a hospital or a doctor immediately think of shots, painful things, unpleasant experiences.
So, some children may have that idea in their head coming to visit their brother or sister, that they're going to just see very upsetting things. So, sometimes even reassuring them like that your brother or sister has gone to a music group, that they've been visiting the playroom, that they really want some of their toys because they're bored there can sometimes ease discussions into, "Yes, you can do fun things at the hospital too."
And again, understanding that they might be afraid of some of the changes of their brother — some of the physical changes, particularly from side effects that they might see in their brother and sister. And I think preparation is one of the best ways to help with that, and also allowing time to talk about what the experience was like after they do come to the hospital and see their brother and sister.
Sarah Pajak: Yes, so recognizing that again, children might need a little more time to process how they want to ask back a question, so allowing them the time to process why their brother or sister doesn't have hair anymore, maybe why they've gained some weight.
And again, going back to what Lynne had said before, that these are things that are not contagious, it's OK to still be in the room and touching your sibling, or being near your sibling, and reassuring them that some of these changes are just now and that they won't be permanent and forever and that they go along with getting this … and making the sibling better and helping treat the sibling to get them better.
Lynne Kaplan: These are such great questions but we have come to the end of our time. So, we wanted to thank you again for tuning into tonight's event, and we really hope that it's been helpful, that we've been able to provide some helpful information and ideas about ways to support your children who have a brother or sister with cancer. And remember that this will be available in a couple of days on our website at chop.edu/cancer if you wanted to watch it or recommend it to others.