If your child has been diagnosed with cancer, you and your family will interact with a number of different members of the health care team at various times during treatment. When you walk into a doctor’s office, hospital, or cancer center, you may encounter nurses, physician assistants, social workers, doctors—the list goes on. In this series, we talk with some of these health care professionals to learn more about their jobs and the role they play in providing high-quality cancer care.
Most children with cancer are treated at specialized cancer centers. These centers usually employ the newest approaches to treatment and provide extra support services to address the unique needs of children with cancer and their families. Child life specialists implement many of these special activities and programs designed to help children and families cope.
To learn more about the support child life specialists provide, I talked with two certified child life specialists: Carolyn Schneiders Fung from Children’s National Health Systems in Washington, D.C. and Molly Spragins from Duke Children’s Hospital & Health Center in North Carolina.
Q: How would you describe the role of a child life specialist in the cancer care team?
Molly Spragins (MS): A child life specialist is an advocate for the child. Educating children about their diagnosis and treatment, teaching children positive coping techniques, and supporting children through painful procedures and long hospitalizations are all roles of the child life specialist. The child life specialist can be the voice of the child within the cancer care team to ensure his or her best interests. Overall, our goal is to keep the child happy and free from traumatizing experiences.
Carolyn Schneiders Fung (CSF): Personally, my role is centered on helping patients adjust to being diagnosed with a form of childhood cancer and walking with them step-by-step through their treatment. During that process, we are often asked to help assist with coping techniques, teach pill swallowing, and celebrate the milestones reached during treatment.
Q: What are some of the most important things you do for patients on a daily basis?
CSF: In the clinic setting, a child life specialist’s role begins with providing child-friendly language and tools to help patients understand their disease. The role then evolves and focuses on procedural support for lab draws, IV starts, and port access. Over the last two years, my role has expanded to be involved with bone marrow transplantation, working on pre-transplant assessments and the creation of incentive programs once the child is admitted to the hospital. These incentive programs help patients become more active participants in their care and reward compliance with required medical procedures. As you can imagine, this helps to motivate them to do the difficult but necessary things they have to do to get better.
MS: My hope is that at the end of each day, my patients feel more equipped to cope with their diagnosis and hospitalization as a result of the work I do with them. This is mostly accomplished through play, which is a child’s language. Through playing with them each day, I clarify misconceptions and help my patients better understand what is happening to them and more positively cope with their experience.
Q: Why did you become a child life specialist?
MS: I became a child life specialist because I believe in children having a voice in the hospital. The hospital is a scary place, and children do not have the life skills yet to be able to understand and cope well with their hospitalization. Having a family member who had pediatric cancer, I have always had a heart for this population. I took a job in the pediatric bone marrow transplant unit when I graduated from college and have been here ever since.
CSF: I became a child life specialist out of my love for choices. I love being given choices and giving choices. In a hospital setting, patients and caregivers have many choices taken away from them. The idea that this role can be important in finding ways for patients to have a sense of control seemed vital in the health care setting.
Q: What is the most rewarding part of your job?
CSF: The most rewarding part of my job is seeing a child work week in and week out on coping with their port access. They start their treatment journey frightened with anticipatory anxiety. These patients then show up day after day, week after week, month after month to have labs drawn and chemotherapy administered through their port. To see the role that these children and teenagers play in their care is extremely rewarding. When a patient has come to the place of knowing how to practice deep breathing techniques, holding still, and then having the capacity to reflect on how the procedure went—that is a huge success and what I live for!
MS: The best part of my job is seeing children incorporate the skills I am trying to teach them to cope positively with their health care experience. It’s also extremely rewarding to see how resilient children are in the face of some frightening things!
Q: Do you have any tips to help parents better communicate with the cancer care team?
MS: Buy a journal and write your questions and thoughts down. When you have an opportunity to talk with your team, go over everything you have written. Everyone on your team has the same goal—the well-being and health of your child. It’s important to remember that you are a part of the team and not to be intimidated by silly white coats!
CSF: When it comes to your child, you are the expert. Please do not hesitate to remind us of what works best for you and your child!
Carolyn and Molly talk more about their experiences as certified child life specialists in the following podcast.