Written by Kelsey Mora, CCLS, LCPC and Carissa Menard, MS, CCLS
Medically Reviewed by Katie Taylor, CCLS
Parents of children with medical conditions or complex needs are usually familiar with an array of hospital staff, including doctors, nurses, and specialized therapists. But if your child is spending a significant amount of time in the hospital, there is one other pediatric specialist who can greatly improve both your child and your family’s stay: a Certified Child Life Specialist (CCLS).
Hildie Vega’s daughter, Olivianna, was diagnosed with a brain tumor with an unknown cause at six months old. She recalls that a CCLS, Josh, was there to assist her family before doctors had even shared the diagnosis. “Josh came in literally seconds before the doctors, handed us a notebook with a pen, and said, ‘Please take this and write down questions and names of everyone you will meet,’” says Vega. She and her husband quickly understood just how useful that notebook would become as their daughter was treated by an army of hospital staff over the next six weeks.
Now six years old, Olivianna requires ongoing medical care for vision loss, epilepsy, and other health conditions. Vega says child life specialists have been there for their family every step of the way—from explaining brain surgery and medical equipment to supporting Olivanna during procedures at their monthly inpatient visits. They “do their best to turn a scary situation into a positive experience for the whole family,” she says.
Most parents of children with medical needs have met a child life specialist. Many times, the hospital stay is overwhelming, so you may not have had the opportunity to take advantage of their services. Whether you have met a CCLS or haven’t, here’s everything you need to know.
WHAT IS A CHILD LIFE SPECIALIST?
A child life specialist is a healthcare professional trained in child development or psychology. They are most often found in children’s hospitals, where their services are integrated into the pediatric hospital experience. In some hospitals, a CCLS may visit your child at the beginning of their hospital stay to assess their needs. Other times, a CCLS is typically contacted by the medical care team when a child or their family needs additional support with a diagnosis, procedure, or overall coping.
A CCLS is trained to help your family adjust by making your stay more comfortable and positive. Their approach is focused on coping, education, play, normalcy, and pain management, which helps to improve the psychological, behavioral, and physiological outcomes of children and their families. Child life services help your child and your family cope with diagnoses and procedures as well as reduce overall stress throughout hospitalization, treatment, and care.
“A child life specialist is an integral role in the medical team,” says Lauren Rissman, M.D., a pediatric critical and palliative care physician at Advocate Children’s Hospital, in Park Ridge, IL. “From IV placements to more invasive interventions, child life specialists help to promote a more comfortable environment for everyone involved.” In fact, the American Academy of Pediatrics recommends that child life services be incorporated into standard care for pediatric patients in order to create more individualized support and increase collaboration between families and healthcare teams.
Child life services have expanded beyond hospitals to include outpatient clinics, palliative care, private practices, non-profit organizations, and other settings where children may experience stressful medical situations.
HOW CAN A CHILD LIFE SPECIALIST HELP YOUR FAMILY?
A CCLS begins by understanding the unique needs of your child and your family. They are trained to assist with difficult conversations and to help families navigate challenges during complex medical experiences.
Working closely with your child’s medical providers, they establish a care plan that prioritizes pain and stress management during procedures and tests. This includes applying techniques that are specific to your child’s age and development to help ease discomfort. They may also use therapeutic interventions to help kids with their emotions and coping skills.
Because hospitalization can feel overwhelming, CCLSs use a play-based approach to help you make meaningful memories. They might bring in play, sensory, or musical tools in order to adapt the hospital environment to your child’s abilities and development. Vega says she and her daughter have come to rely on child life support to help her daughter each month when they use a needle to access her port for her intravenous immunoglobin (IVIG) infusion medication. “I am super thankful that our child life specialist, Felice, is right there by Olivanna’s side, distracting her with Cocomelon or simply talking to her or holding her hand and arm,” she says.
They may also find ways to brighten your stay, including celebrating milestones such as birthdays and holidays. For example, when Olivanna lost her first tooth in the hospital, her CCLS printed a special certificate and made sure that the tooth fairy “visited” Olivianna’s room, says Vega. Some child life programs regularly collaborate with creative arts therapies and incorporate pet therapy and other special visitors, such as music therapists, to reach their therapeutic goals with kids.
Outside of play and coping strategies, your CCLS can also help with education. They are trained to rephrase medical jargon into simpler terms, in order to increase the family and child’s understanding of diagnoses, procedures, tests, and symptoms. This might mean guiding you as a parent so you’re better prepared to discuss these topics with your children on your own terms, or it may mean working directly with your child and their siblings. “Kids get curious and start asking questions,” says Vega. Olivanna’s CCLS at Children’s Hospital of Orange County (CHOC) answered all of her older sister’s questions using terms that she could more easily understand.
Child life programs can also provide you with a brief respite from caregiving by identifying a trained and dedicated pediatric volunteer to accompany your child for a short period during your stay.
Although CCLSs have a seemingly “fun” job built on play, “they are so much more than just someone who brings your child toys,” says Vega. They become a point of continuity between you and your child’s various medical care providers and they advocate, alongside you, for your child, adds Rissman. They often participate in family care rounds, palliative care meetings, and critical decision-making conversations. And they can make individualized recommendations or referrals for internal and external resources for ongoing support.
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