Cori Liptak, PhD, discovered her interest in pediatric psychology following a summer internship at Columbus Children's Hospital in Ohio. Her path eventually led to Dana-Farber, where in 2002 she began a two-year fellowship in pediatric neuro-oncology. Liptak loved working with the patients and families and became a full-time staff member. Now one of the senior psychologists in the Division of Pediatric Psychosocial Services, she sees patients with many diseases, though she specializes in pediatric neuro-oncology and survivorship issues. Her role is diverse and the days sometimes unpredictable – just the way she likes them. Liptak views her work with families as a privilege, establishing relationships with patients and allowing them direct involvement with the medical team.
The multidisciplinary division, made up of psychologists, social workers, resource specialists, and school liaison personnel, provides a wide range of services and support to pediatric cancer patients and their families. This includes play therapy, behavioral therapy, such as techniques to manage pain and anxiety, parent guidance, school consultations, and communication with the medical teams at Dana-Farber and Boston Children's Hospital. The 27-person team is integral to the care people receive.
The emotional support offered through the division is available to all immediate family members. It often includes parent guidance, helping parents maintain a routine at home, assessing how siblings are adjusting to the illness within the family, and helping parents manage the transitions between various hospital and clinic settings. Support extends beyond the immediate family and includes the patient's school team and classmates. Here, Liptak talks about the process a family goes through when a child is diagnosed with cancer and the role of the psychosocial clinician.
"The minute a family hears the diagnosis 'Your child has cancer. Your child has a brain tumor,' their lives are irrevocably changed. An enormous emotional roller coaster begins that takes on different meaning depending on where people are in the process: diagnosis, treatment, or post-treatment.
When a child is diagnosed, the family goes through different phases. They wonder, 'How am I ever going to get through this?' They do, however, learn to manage. In pediatrics, all families are assigned to a psychosocial clinician right from the start to help them adjust to the new routine. Here, we recognize that the psychosocial care is critical to support a family in addition to the medical care.
Some people don't understand what we do because we do so many different things. We might be playing the card game Uno with a patient or helping him or her with a doll and medical kit. Play therapy is a proven research-based technique. There's therapeutic value in it, and it provides opportunities to learn about the patient, his or her behavior, and approach to social situations. Playing also gives children a little bit of control and encourages them to just be kids. It's reassuring because they think, 'If I can play, I'm okay.'
For example, I work with a 10-year-old girl who comes for weekly chemotherapy treatments. The possibility for mood and anxiety struggles is always present because of the demands of the treatment, and the weekly play therapy sessions can be very helpful during the course of a lengthy treatment day. She loves art and decided that we needed to make a portfolio of all the projects that we work on. This has provided a means to document her treatment journey and a vehicle to express her feelings about illness. For instance, we wrote a story about a sick centipede, and it was a beautiful way for her to express her struggles, needs, and worries. When she is done with her treatment and walks out of Dana-Farber with her portfolio, she has something that will serve as a reminder of the work that she has done, the relationships formed, and how she can cope when things get difficult.
Behavioral interventions also play a role in helping children master their situation medically. Sometimes they aren't sedated for difficult procedures, and they need to sit still, and we help them to get through it. We can do work ahead of time to help them prepare so they understand what their job is throughout the course of the procedure. They might say, 'Cori, I'm going to sit like a statue right now.'Anytime you get to witness a child using something you taught and be successful as a result, that's rewarding. For instance, when I use medical play with a child and see him stop giving the puppet lots of shots, and instead hear him say, 'We're now going to put on your magic cream. It's numbing and you're not going to feel a thing. Don't be scared!' I'm watching him evolve in his ability to cope, and that transfers over into his real-life experience.
There are other behavioral interventions that go beyond what happens in the clinic. For example, a child who had been sleeping in his own bed before he got sick may all of a sudden want to sleep in his parents' bed. We help him work through that while encouraging families to continue to set limits. Upholding family rules and expectations is important; it encourages the child and family to have a regular routine – because that's what's going to be most helpful for him and the family.
We also address the complicated emotions that come with going through cancer treatment and handling side effects. And we give people an opportunity to talk about them and permission to not be okay all the time. That can be difficult, especially for adolescents. Their attitude can be, 'I've got it together. I don't need any help,' but when given the permission to "not be so fine," their walls come down, and you're able to learn what they really need that they haven't been able to ask for.
One of the biggest challenges is working with families around end-of-life issues. It is important that patients and families have someone to talk to about difficult treatment decisions, as well as their hopes, fears, and wishes. This can be comforting for families as they focus on whatever time remains.
Survivorship and treatment completion poses its own set of challenges.– Cori Liptak
I worked with one young woman who had things she wanted to do before she died, and we made a list: 'I want to go someplace with my friends, finish my scrapbook, get my room organized.' It's very simple, but it opened up a conversation about what was important to her. The list exercise also served as a concrete reminder that she had a choice about what her time was going to look like and provided her with a focus of how to get what she needed. It's special for family and friends to know that they helped her accomplish items on that list. That carries meaning for them now that she's gone.
Conversely, survivorship and treatment completion poses its own set of challenges. Brain tumor survivors struggle with multiple medical, cognitive, and physical challenges. These impact school, work, and friendships; many struggle socially. To help meet some of these challenges, I've started a program called STEPS (Success Through Education, Psychosocial Support, and Socialization) that holds a dinner once a month for brain tumor survivors and their caregivers. Patients know that they're going to see people who are like them and understand what they're going through, which is what has made people come every month. As part of the program, we took a group of brain tumor survivors to Project Adventure, where they worked as a team to overcome challenging tasks like climbing a tree and walking across a wire. One girl who is legally blind wanted to try the task, and the group worked together to help her get up the ladder and to the tree. They did this solely with communication and absolute trust, and it was successful because they all really care for each other. These are people who have established friendships outside of Dana-Farber. Once you've seen a patient connect with another patient and be able to say, 'I have a friend who understands,' the power of that type of success goes beyond anything I can really describe."
Fall/Winter 2008 Table of Contents
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