What is a Child Life Specialist in the Hospital?

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).

Olivanna in the hospital
Credit: Hildie Vega | Olivanna in the hospital

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.

Olivanna with her CCLS
Credit: Hildie Vega | Olivanna with her CCLS, Felice

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.

Requesting child life services

If you aren’t met by a CCLS at the beginning of your stay, ask your medical team about the types of child life services available to your family and how to access them. For non-emergency visits, you may ask your practitioners prior to your stay.

Consider asking the following questions:

  • Does your facility have child life services?
  • If so, can I expect to meet with a child life specialist?
  • Will a CCLS be scheduled to visit us, or do we need to request a visit?
  • How do I contact child life services for my child or family?
  • What types of support services, activities, and programming are available to my child during and after their hospital stay?
  • Can a child life specialist meet with my other children?

How to get the most out of child life services

When you meet your CCLS, it’s helpful to provide them with details about your child’s needs. The CCLS will use this information as they work with your child’s medical team to provide individualized care. Consider sharing the following information:

  • Our family is made up of (children, parents)…
  • My child communicates by…
  • My child’s likes and dislikes are…
  • Things that make my child comfortable are (dimmed lights, quieter spaces, knowing what to expect)…
  • Things that make my child uncomfortable are…
  • Things that cause my child pain or distress are…
  • Concerns I have about my child’s emotional well-being are…
  • It’s important to me that…
  • Extra stress in our life includes…

What to expect once you leave the hospital

Every facility has different policies around where and when (and even if) they provide child life services outside of the hospital. For example, the child life team at CHOC provides out-patient support to Olivanna’s older sister, Mikaela, to help her process her emotions.

“Every time something happens with Olivianna, big sister Mikaela gets super emotional, and her anxiety takes over,” says Vega. “Child life asked if they could set up special one-on-one appointments with Mikaela after school so she could talk about her feelings and they could work through them together.” They even provided a school visit to help Mikaela’s classmates understand her sister’s condition and how it impacts Mikaela.

Sometimes, a CCLS is available when your child receives out-patient care, including in the radiology center, emergency room, and lab—but that’s not always the case. To continue child life services, ask your medical team or your in-patient CCLS for recommendations or referrals. Your in-patient CCLS can also help you establish plans to better prepare for and cope with any future out-patient procedures and appointments.

Working with a community CCLS

Children often need additional longer-term support after a diagnosis or after a traumatic event related to their disorder. That’s when a community CCLS may help your family. “The coping skills needed for a chronic, lifelong illness required more assistance than what the hospital was able to provide,” says Julie*, whose 5-year-old son Micah was diagnosed with ulcerative colitis in August 2017. Five years after his diagnosis, “we needed the additional support that our community CCLS was able to provide regularly to reinforce the tools and methods needed for healing and future emotional success.”

While hospital CCLSs usually have limited availability, community CCLSs typically have flexible schedules and can offer ongoing support at your home, their office, or online. Frequency and length of visits vary depending on your child’s needs, and you can access their services for as long as needed. “Kids spend so much more time out in their community than they ever do in the hospital,” says Laura Sufka, a community-based CCLS in Twin Cities, Minnesota.

A community CCLS can assist your family with:

  • Disorder Education. As your child grows, it can help to discuss their diagnosis from time to time to revisit their ongoing symptom management and future outlook.
  • Non-hospital medical experiences. After a potentially distressing hospital stay, a community CCLS can prepare and support your child through diverse healthcare encounters, such as regular appointments with their primary care provider or dentist. 
  • Mental health. Your child’s mental health needs are influenced by their health, support network, treatment plan, and more. A community CCLS can address a wide range of challenges and can help you connect your child with appropriate professionals.
  • School transitions. A community-based CCLS can provide additional support as needs arise over time. They may attend IEP meetings, advocate and collaborate with your child’s teacher, and adapt plans to ensure your child takes their medication at school.
  • Sibling support. Understanding a medical diagnosis helps to lower a sibling’s anxiety levels. A community CCLS can offer continuing education and help siblings process their emotions and verbalize their own needs, says Sufka.

After his hospital stay, Micah met with a child life specialist every week, “just to manage daily life, his chronic illness understanding, and his emotions,” says Julie.

To find a community CCLS, ask a nonprofit organization associated with your child’s diagnosis or your hospital CCLS for a referral. Consider how much hospital experience they have and if they seem able to adapt quickly to your family’s needs.

Keep in mind that while hospital CCLS services are included in your child’s care, community CCLS services are not covered by insurance. You’ll pay a community CCLS directly. Most offer sliding scale fees, financial assistance, or lower cash rates (since insurers are not involved).

Vega emphasizes that CCLSs can be a source of information and hope for families throughout their child’s healthcare journey. “When your child gets sick, your whole family gets thrown into this dark place—you have no idea of what your rights are or what programs and resources the hospital has to offer. Child life specialists will go the extra mile to make your whole family feel comfortable, safe, and prepared for what’s coming,” says Vega.

*Some families have asked to go by their first names only, to protect their privacy.

References and Further Reading

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