Learn how these care providers can be a valuable source of support for families navigating rare disease journeys.

By Katie Whelan

When I’m asked what I do for work, I’m usually met with the response “Oh, that must be so sad!” or “How do you do that?” But what these inquiring individuals don’t realize is that it’s the most inspiring job that I can imagine.

What is a child life specialist?

Most people don't know what my job involves—in fact, many have never even heard of a child life specialist before. I myself stumbled across the career path when a family friend invited me to volunteer for a pediatric palliative care event. I fell in love with the work. Fast forward seven years—that friend and I  are now co-workers, and I’m now the one who’s in charge of the events! 

A Certified Child Life Specialist (CCLS) is a person  who works with children and their families to help them cope with a procedure or normalize a diagnosis through play and education. In order to become a CCLS, there are several specific courses one must take at the college level. These include courses focused on child development, and death and dying, along with many psychology courses. CCLSs are most often found in the hospital setting, in inpatient units, or clinics, but we also work out in community programs such as palliative care or hospice teams. To be clear, palliative care is distinct from hospice. The children I work with are not dying, but they do have a significant disease burden to which they and their families must adapt.

 The pediatric palliative care team that I work for provides community support for over one hundred local families with a medically fragile child or children. Each family active with our palliative care program is provided a social worker and a nurse for support related to  school, equipment, medications, etc. The families are also offered the following complementary therapies (from which they typically choose two options): child life, music therapy, spiritual care, and art therapy. These therapies can be for either the patient or their sibling(s)—whichever the family and the team feel is the most appropriate at that time. As the family grows, so do their needs. , In many cases, we’ll switch out certain complementary therapies for others over the course of a family’s involvement with the palliative care team. 

Although palliative care is a growing service in most hospital settings, community-based programs like the one I work for are more unique and can be harder to access depending on where you live in the US or the world. 

What is a visit from a Child Life Specialist like? 

My community-based work  involves visiting  the families I serve in their homes. I truly feel blessed to be invited (and so warmly, I might add) into each family’s home. Whether I am working with the child who has needs themselves, working with their sibling, or chatting with a parent, I always leave with a full heart. The families I work with are the strongest people I know.

When I arrive for a visit, I have an agenda of activities. Sometimes this goes smoothly—sometimes, it goes right out the window! But over the years, I’ve come to realize that whatever I get done in my 45-minute visit is likely what the family needed at that time. Maybe a sibling just needed a break to enjoy a fun craft and not have to think about everything else going on in their life. Or maybe mom just needed a neutral party to listen to her as she vents. Flexibility and support is part of the nature of palliative care, and we are here to support patients and their families in any way they need. 

As with any job, there are frustrations in mine. But if you are in the field you’re meant to be in, the rewarding moments usually largely outweigh the frustrating ones. The small moments—a “thank you” text following a visit, a hug on my way out the door, or an update from a mom sharing progress made—are some of my favorite parts of my job, and some of the most rewarding. 

Recently, a child I work with was starting to notice and struggle with their physical differences compared to the children in their integrated class at school. I worked with their mom to create an Activities of Daily Living (ADL) chart for the child so that they could better visualize what they can do. Mom texted me one week into using the chart to tell me that the child had been filling it in with stickers, and had been very proud of their accomplishments thus far—even going on to practice new ADLs they had not yet mastered before. The children and parents I work with are so able to accomplish these milestones on their own, but sometimes the right tool or form of support at the right time is just what they need, and I’m able to provide that. I had the chance to ask the child in person about their new accomplishments, to which they replied, “Yes! I did it!”

I am beyond grateful to be working in pediatric palliative care, especially within the same community in which I grew up. Although I never pictured myself working in this particular setting, I never plan on leaving. I look forward to continuing to meet more and more of these amazing families for many years to come. 

Katie Whelan is a Certified Child Life Specialist & Family Engagement Coordinator for a community-based pediatric palliative care program.

To find out more about palliative care programs near you, visit the Palliative Care Provider Directory at getpalliativecare.org.