Child Life Specialists Help Kids on Cancer Journey

March 21, 2019 | by Samantha Bonar

It’s hard enough for an adult to find out they have cancer. When a child receives a cancer diagnosis, it can be especially confusing and scary. That’s when City of Hope’s Child Life team steps in, to provide information and support during hospitalization and outpatient treatment for infants, children, teens and their families.
 
“We help educate children, siblings and parents about their diagnosis, treatments and side effects,” said Jo-Ann Namm, M.S., C.C.L.S., supervisor of the Child Life Services Program, part of the Department of Supportive Care Medicine at City of Hope. “For example, if a patient is newly diagnosed with leukemia, what does that mean? What is chemo? How will it make you feel? Why does it make your hair fall out? We also explain the cancer diagnosis to brothers and sisters.”
 
City of Hope’s three Child Life specialists are not psychologists — they hold master’s degrees in child development or child life. “We do help with feelings, but we don’t provide therapy or counseling,” Namm said, explaining that there are psychologists on staff to work with both adult and pediatric patients. (Namm and her colleagues, along with other Supportive Care staff, do facilitate City of Hope's Bereavement Support Group, however.)
 
Child Life specialists help normalize the environment for pediatric cancer patients while they are hospitalized by engaging them in bedside activities like reading, karaoke, game-playing — whatever a patient enjoys. “If a patient likes to paint, we will spend time painting with them,” Namm said.
 
A popular coping tool is the Beads of Courage program, which encourages kids to document their cancer journeys by putting together strands of glass beads, each one representing an event. “Treatments, surgeries, CT scans — you’ll see these long strands of beads that show their story,” Namm said.
 
For every pediatric cancer patient who comes to City of Hope, a Child Life specialist completes an assessment of the patient and their family’s needs, assessing their coping skills and “how I can help them, especially when they’re in-patient.” The specialist finds ways to help them cope better with their hospitalization and treatment, including finding things to do “that are fun.” “I find out what they like to do, and encourage them to be advocates for themselves,” Namm said, pointing out that many pediatric oncology patients receive bone-marrow transplants, requiring weeks-long hospital stays. Birthdays, graduations and other milestones are often celebrated in the hospital.
 
Each specialist sees around five to six patients a day, depending on what each patient is going through. Some of that time may involve prepping siblings to see their brother or sister if they are in the intensive-care unit, “which can be pretty scary.” If a child is at the end-of-life stage, the specialist will likely spend the entire day with them and their family.
 
For pediatric patients with terminal diagnoses, Child Life experts spend time making “legacy” craft items with them for their families (with the family’s OK), including special pillows, picture frames, wreaths, cards and other ways to collect memories.
 
“Families are very, very appreciative” of these items, Namm said.

Support for Children of Patients

While about 70% of the children Child Life specialists see are patients, another 30% or so are the children (or even grandchildren) of patients. An adult cancer patient with a child ages 4 to 17 can request support from a Child Life expert to help their child understand what the parent is going through, and to provide parental support as well.
 
“What do these kids know about what is happening? We explain what they are going to see,” Namm said.
 
It’s a challenging job, but one that all three specialists say they find extremely rewarding.
 
“Knowing that I can do fun and therapeutic stuff with them, even on days when they are struggling, and knowing that I can make a difference in the patients’ and families' lives, that makes me happy to come to work,” said Child Life Specialist Marisol Trujillo, M.S., C.C.L.S. “Also, we have patients who do very well, and they come back to visit, like at our annual picnic. It’s very comforting when we see them back at school and doing normal activities.”
 
“I always keep in mind that I can’t control the illness, but what I can control is while they’re walking the path of their cancer journey, I can try to normalize things. I can provide some joy and laughter. Basically just help them cope,” Namm said.
 
“We become so integrated with the family, like a team. Their victories become our victories,” said Child Life Specialist Megan Matthews, M.S., C.C.L.S. “We work together very hard. It can be scary coming into this environment. I love to see kids continuing to be themselves in the hospital. I love to see them still growing into who they want to be, even if they are in the hospital. They are more than just a cancer diagnosis, and we want them to remember that.”

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