Beyond the Cancer Diagnosis: Dialogue with Clarissa Schilstra, Hosted by Adrian Pogacian

In the recent episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian highlights the Psychosocial impact of childhood cancer – new old story, together with Dr. Clarissa Schilstra, the Staff Chair for a new Family Advisory Committee at Kids Cancer Centre in Sydney.

Clarissa Schilstra is a postdoctoral research fellow at the Behavioural Sciences Unit at the Kids Cancer Centre, Sydney Children’s Hospital and UNSW Sydney. Clarissa is also a two-time cancer survivor (Acute Lymphoblastic Leukaemia, treated from ages 2-5 and 13-16). Clarissa completed her PhD in 2023, focused on assessing and addressing psychosocial well-being in adolescents and young adults (AYAs) with cancer, and was awarded the UNSW Dean’s Award for Outstanding Thesis.

Clarissa is now an internationally recognised survivor-scientist, serving as an advisor for the World Health Organization Global Initiative for Childhood Cancer as well as the International Late Effects from Childhood Cancer Guidelines Harmonization Group. Clarissa’s postdoctoral research is focused on co-designing novel health service solutions with children and AYAs with serious illness, to promote their quality of life and improve their access to high quality healthcare.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Hello everyone, welcome to a new edition of Beyond the Cancer Diagnosis interview series. Today my guest is Clarissa Schilstra from Sydney, Australia. Hi Clarissa, thank you for joining in this discussion about childhood cancer.
The same new old story as I put it and we’ll try to see what is the psychological impact of the literature and all the research that has been done so far.

So to start our interview, first I would like to define a little bit the notion of childhood cancer because I see in the literature different notions like childhood cancer, pediatric oncology, children with cancer. So if I can ask you what is the correct way or where are the differences, so if you can explain a little bit broadly this concept.

Clarissa Schilstra: Sure, sure, absolutely. So childhood cancer can be defined a little bit differently depending on what country you live in. But I would say the kind of standard internationally tends to be any child or young person who is diagnosed with cancer between the ages of zero or from birth until about 14.

And then anything diagnosed sort of from 15 and up we might classify differently as adolescent or young adult cancer. And so I would consider childhood cancer mostly that which is diagnosed in children under the age of 15, so 14 and under.

Adrian Pogacian: Okay, and the concept of pediatric oncology, that it relies only to children or to childhood cancer or also to AYA?

Clarissa Schilstra: Yes, so that’s a great question because that’s very variable internationally. So there are some countries like here in Australia where we have separate care. Although our adolescents and young adults are cared for in our pediatric cancer center, they’re in that center receiving care from a different sort of specialist team for adolescents and young adults.

Whereas, for example, in the U.S. where I’m originally from, adolescents and young adults are just treated within pediatric cancer centers and there isn’t so much separation. And then in the United Kingdom, for example, they have very separated care where there are separate wards even for adolescents and young adults compared to younger children and older adults. And so that really depends on sort of the country and health system.

But in general, pediatric oncology can cover any children diagnosed with cancer up until adolescents and young adults, but typically not caring for young people who are beyond the age of 18. We might see 18 or 19-year-olds, but nothing really beyond that. At that point, they might go into an adult hospital.

Adrian Pogacian: Okay, because after 18, as we know, they are called adults. So theoretically, they should go on the adult hospital. But as you mentioned, it depends very much on the country, on the cultural background and so on.

It is said that in cancer diagnosis, the first six months are critical, especially for caregivers. In the case of childhood cancer, this means the parents. Could you tell us what is different in childhood cancer in these first six months, despite the emotional factor that it’s much stronger, let’s say, than in other cases?
But are there some particularities that are only related to childhood cancer in these first six months?

Clarissa Schilstra: Sure, definitely. So I think what we see with childhood cancer is that it tends to be a lot more of a family disease than you might see in cancer diagnosed in other age groups because of that factor where the parents have to do so much caregiving and are really there to advocate for their child and be a representative for their child at all stages of the cancer care process. And so that means automatically, you’re having multiple family members involved in healthcare decisions and in the healthcare process for the child.

And oftentimes, the impact of that is that parents are then having to stop their jobs, or at least drop down the amount of work that they can do or the hours that they can work. And the impact of this then trickles down to other members of the family. So the parents are then less available to care for any other children that they might have, which affects then any siblings in the family.

And that also then requires support from maybe more extended family members. So we often see grandparents getting involved to help or aunts and uncles and other family members. And so it really requires a lot of people to support the parents to be able to support their child through the process.

And the impact of the parents having to make themselves available to help support their child through cancer care is really significant because it has that financial consequence of parents sort of employment often being affected. There’s also a really big time impact in terms of their ability to care for their other children. In Australia, especially, we see a really big impact on families because many of them are traveling very far to get to pediatric cancer care.

And so sometimes they even move from their hometown or home area to the city where the hospital is for months or even years to receive care for their child. And that affects everything from the jobs that they can to even the schooling for the siblings. So whether or not the siblings can attend school or they have to change to a different school, those impacts all have long-term consequences because then after treatment ends, families often relocate again and schools shift again and financial recovery has to happen.
And there’s just a lot of sort of long-term recovery from all of those consequences, not including the emotional impacts.

Adrian Pogacian: You mentioned the family and all the problems related because of this diagnosis. As you know, the family is the frontline, first line of support. And unfortunately, as you mentioned, they have to travel a lot to the pediatric hospital, sometimes maybe relocate.

Even though we are living in an area of new technologies and artificial intelligence, it is a problem because all these digital interventions, they don’t take into account the family. They are just related to the patient. But I guess, and here I would like to say your opinion, what should be improved or which way the future digital intervention should look like, especially for childhood cancer, into taking into account the family?

Clarissa Schilstra: Yes, that’s a wonderful question. I think we’re slowly moving into that space as we see sort of survival rates for childhood cancer improving and children doing better. And we’ve come up with a lot of great digital interventions for the children who’ve had cancer themselves.

We are moving into more family-focused interventions. And I do think there’s been a lot of great work done in this space. And even within the team I work in, so I work within a team called the Behavioral Sciences Unit, which is a pediatric and adolescent and young adult psycho-oncology research team based at UNSW in Sydney and at our Kids Cancer Centre at Sydney Children’s Hospital.

We’ve developed multiple interventions that are actually parent-focused. So, for example, one of my colleagues has developed an intervention to help support parents sleep while they’re on the wards in the hospital with their child, since we know their sleep can be really significantly impacted due to a lot of reasons, from the noise to the available place to sleep, to sort of privacy and things like that. And we’ve also had interventions that are more psychotherapy-based.

So, for example, we’ve had resources developed to help parents who’ve lost a child to cancer and to support them in their grief process. And so, I think there are many things that have been done online already. I think the challenge that is ahead of us is actually to make those resources that we do have more accessible to families, and especially to families that are receiving cancer care in low- and middle-income countries, where development of tailored interventions is a lot more difficult because the research and healthcare infrastructure isn’t there.

It would be wonderful to see if and how we can expand what we already have in more high- and high-income countries to be able to apply and be rolled out and more accessible to families in these lower resource settings.

Adrian Pogacian: Okay. You said about the resources and financial difficulties. That’s a problem because the person living also in rural areas have a problem accessing new technologies.

So, it is important to improve what we have other than develop new digital intervention, which is also very, very important. I would like to ask you, what is the average age of cancer diagnosis in childhood cancer?

Clarissa Schilstra: Yes. So, that really depends on the type of cancer specifically, but we tend to see the most diagnoses between the ages of two and five years old, beyond the age of five. And that’s, yeah, two to five range is more common.
But as I said, it can really vary depending on the type of cancer.

Adrian Pogacian: Two to five years, it’s a bad prognosis to put it this way. And, of course, for family, for parents, it is a struggle to try to overcome it. And I would like to ask you from your experience also as a researcher, are they teach to use, let’s say, copying mechanism, copying strategies to face these situations?
Or your colleagues, clinician, they are doing something in this way?

Clarissa Schilstra: Yes, a great question as well. I think that, again, really depends on the hospital in particular, where a child and family is receiving their care. There have been some really wonderful standards developed for caring for the psychosocial needs of children with cancer, led by a team in the United States.

And there’s been work to sort of adapt or implement those standards in other countries. But the challenge that we have is each country’s health system works so differently, that it can be sometimes difficult to meet all of those standards. And a lot of those standards have to do with supporting parents with the information and resources they need to be able to cope and providing children with opportunities for their education and their social development, which, if diagnosed between the age of two and five, that early childhood period is really critical for their long-term development.

And if they’re isolated in hospital, we can see really long-term consequences from that. So, there are some wonderful pieces of work that have called attention to what should be done to support families. But I think we still internationally have a significant resource problem, because I think there’s this idea still that the cure of cancer has to be prioritized in terms of research funding, above the support and health system funding, above the actual support for children and their families who are surviving through treatment.

And I think, obviously, that’s valid. We wish there was a future with a cure for childhood cancer. But I think it’s also important for us to shift focus as treatments are improving to better funding and resourcing psychosocial supports for families.
I think when we think about coping with the pediatric cancer experience, for parents, it often comes down to giving them the space and time that they need for themselves. We’ve recently completed a piece of work at our hospital where we interviewed many families, parents in particular, about their care experiences and needs. And so many of them said, I really just needed to take time to go get a shower or have a nap at some point because I was awake for 24 hours while my child was going through a difficult time.

And there was no space for me to do this because there was one parent shower on the ward and no space to rest quietly. Or another parent said, I’m not in the family kitchen here. And to be able to order any takeaway foods, I would have had to leave my child’s bedside.

And I didn’t feel comfortable doing that. And so I think we’re still not, even in a high income country like Australia, we’re still not providing basic necessities for parents to be able to cope and meet their sort of basic biological needs of eating and sleeping. And beyond meeting those needs, we then also need to think about what they need to feel secure and having the skills and information and knowledge that they need to navigate their child’s experience.

We also hear a lot in interviews with families how overwhelming it can be. There’s so much new information that they’re required to learn. And they’re responsible for making decisions for their child when they’re not sure what the long-term outcome could be.
Often childhood cancer treatments can cause pretty significant side effects such as hearing loss or impact children’s fertility later on. And it’s a significant burden for parents to have to make decisions around these long-term consequences. And yet we’re asking them to do this with little healthcare information and knowledge.

And again, some hospitals and centers have resources like social work or psychology support to be able to support parents in their coping. But other centers might not. And where that’s not available, parents are facing a disadvantage.
And I think that’s really where this opportunity for digital intervention and information provision comes in. It’s still not very easy to find through Google all the information you might need in a central place as a parent of a child with cancer to be able to feel like you have the skills and the knowledge you need to make decisions. And that can cause stress.

And that’s not even including the other life factors like financial stress that parents often face or the time stress and the emotional stress of not being present for their other children potentially. So there’s so much that parents have to cope with. I think there’s a lot still to be done in terms of helping them in the first six months after their child is diagnosed to juggle and navigate all of these challenges.

Adrian Pogacian: From what you said, there are two questions that I really want to ask you. First, both are related to coping, but first is that the healthcare from providers is stopping when they leave the hospital or they keep contact with professionals also at home? Because if you have a child of two years diagnosed with cancer, okay, you are going home, but with a lot of stress and fear, maybe you can’t feel secure, you are insecure.

So does the head of the hospital, of the specialist, end when you leave the hospital or it go further when the parents are at home or they have, let’s say, a number where they can call in case of emergency?

Clarissa Schilstra: Yes, that also depends on hospital site. So in the US, for example, there’s often a phone number for an on-call physician or families might have the email address or phone number of their treating physician. And often that communication will happen directly with the physician or potentially with a nurse from the clinic where they attend.

Whereas here in Australia, our care is often coordinated for families through our clinical nurse consultants. So each family, when their child is diagnosed, will be connected with a clinical nurse consultant within their treating physician’s team. And that nurse consultant will help with the coordination of the child’s care and be the one that parents can call or send a message or email to when they have questions.

I think the challenge we often see with that actually is that the connection and the source of support for questions is really helpful. But actually, when the contact numbers are too available and too easy to access, parents can be calling up, you know, 5, 10, 15 times a day with sometimes minor questions. And it really speaks to the fact that they have significant information needs.

But just because that link to the hospital is there doesn’t mean it’s actually, you know, addressing the needs because the needs that they have can sometimes be through the day where they might have questions come up. So it’s a real challenge for the health care teams to be able to support all of families’ needs when they’re at home because there’s not a lot beyond sort of messaging and email that they can do to answer questions until the family comes back into hospital.

Adrian Pogacian: And the second one is related also to family. In the case of two, three, four children, how difficult is it for a parent to show to the other siblings that they are still important in their life? Because except the cancer diagnosis, this is, I guess, the most stressful thing to manage for a parent, to show to the other sibling that he still has the same importance as his brother or her sister.

Clarissa Schilstra: Absolutely, absolutely. All parents want all of their children to feel valued. I can’t speak on behalf of parents who have so many, like three or four children.
I only have two myself, but I can say from research that we know that it’s very difficult for parents because obviously they have limited time, often limited emotional resources as well, since they’re spending so much time and mental energy caring for the sick child. And it can also be really difficult because each other child or each sibling might react differently. So sometimes other siblings might withdraw or other siblings might have a lot of questions.

And if the parent isn’t sure of or feeling sort of nervous about how to best support the needs of each sibling individually, that can be challenging, especially if each one has a different sort of response and reaction to the sick sibling’s diagnosis. And so again, it really comes back to the need for more information and support for parents to be able to feel equipped with the knowledge and the skills that they need to have those conversations with their other children. And we see that when parents get the information that they need and sort of the guidance on how to have those conversations, that the siblings are often doing a little bit better.

So there is a follow-on effect from how well the parents feel prepared to navigate that aspect.

Adrian Pogacian: And here comes another question because you mentioned the studies and I want to ask you from the studies that you’ve made or that you are aware. I would like to ask you, what is the, let’s say, the level of percentage of self-blame from parents or sibling for what is happening? And where is this, let’s say, issue of self-blame more accentuated to parents or to siblings?

Clarissa Schilstra: I can’t say exactly the percentage. My research hasn’t focused on siblings and parents in particular. I focus mostly on the children and young people with the diagnosis themselves.

But I would estimate that it would be potentially fairly common. I don’t want to say anything for certain, but I think what we do see often is maybe not so much self-blame so much as guilt. I think parents often recognize where they’re having trouble and where the limitations are, but they’re faced with sort of impossible decisions sometimes if they have to choose between spending time with their sick child and spending time with their other children.

That is often an impossible choice because they have to spend the time with the sick child. And so I think more often than not, parents might feel guilty that they can’t care for all of their children to the same degree during the sort of acute illness period. But I don’t know so much about.

Adrian Pogacian: And let’s say you mentioned also the young adults, children and to change a little bit on the positive part. How about hope, especially on young adults or children, let’s say over 10 years or 11 years when they start, let’s say, understand life or see different things. How do you feel or do you see hope, let’s say, in their behavior, in their eyes as you want?

Clarissa Schilstra: It’s a great question. I think ultimately that depends on each way that they see the world. This can vary a lot between young people.
I can speak a little bit from personal experience in this because I am actually a childhood cancer survivor myself. I was diagnosed with leukemia when I was two and a half and then a relapse at age 13. And so I think having had cancer as a very young child, I didn’t remember anything.

I didn’t really think about it all that much when I was a little bit older. But then after the relapse at 13, I was really aware and I understood a lot about what was happening to me. And I had a wonderful health care team who really made me part of the decisions that I had to make, that my family was making about my care.

And I think when you know what is happening to you in your body and you have that understanding as an older child or an adolescent, I think hope can either be more attainable, so easier to reach because you can understand what’s happening. You might understand your prognosis more. You might have a health care team that’s helping you be part of the decision making about your care and giving you, empowering you to sort of be a leader in your own health care.

And if that’s the case, it’s easier to feel hopeful. But I think there’s also a situation where for a lot of young people, they may not have an ideal relationship with their health care team, or they may be receiving care in a difficult, disadvantaged or under-resourced setting where that can be really stressful. And then hope is very understandably more difficult to sort of feel and carry with you through that experience.

So I think it can also be impacted by your family. Some young people have strong relationships with their family sort of beforehand, and that is able to continue following diagnosis and they have support from their friends. And if they are able to access all of that support through their treatment, they might feel more hopeful.

But on the flip side of things, it’s also very common for family relationships to break down after a diagnosis. Sometimes we see parents who end up actually getting divorced due to the stressors of the child’s diagnosis, which would obviously flow on to the young person. Sometimes we also see just the relationships between especially adolescents and their parents be strained because adolescence is a time where young people want to be increasing their independence, and a diagnosis of cancer really forces them to be dependent.

And that can be creating a lot of tension in families as well. So as much as I would love for everyone to be able to hope easily, hope can be a really challenging thing to reach for at a time like that.

Adrian Pogacian: And since we are arriving at the end of the interview, you mentioned about, I like what you mentioned like in the last sentence about hope. So as a last question, I would like to answer it like directly. In our field, they said that too much hope or strong hope is false hope.
Are you agree or disagree?

Clarissa Schilstra: I agree with that. I think you have to find somewhere in the middle. It’s becoming more common nowadays, especially in sort of the adolescent and young adult cancer research space to think about this idea of toxic positivity.
So when you’re thinking about too much optimism, too much hope, too much positivity, that’s not based in reality either. I think there has to be a balance where you’re recognizing that can be really difficult, and you can sit with those difficult and uncomfortable feelings, but you can still find moments of hope throughout. So I think, but ultimately, it really comes down to each person.

Some people are wanting to feel hope and find that hope more, and other people want to sit with the feelings that they have. And I think, ultimately, we have to support each young person, child, and their family to cope with and go through the emotions that they’re experiencing in whatever way feels best for them.

Adrian Pogacian: Thank you very much for your thoughts, for your information, and for your time, Clarissa, and good luck on your further activities and research. It was a very interesting discussion, and thank you very much for joining us today. Thank you.

Clarissa Schilstra: Thank you so much for your time.