During my visit to St. Jude Children’s Research Hospital, one of the things that stood out to me was how they go above and beyond in all of the care and services they provide. What we most hear about St. Jude is the fact that they not only cover all medical care, but housing, food and travel as needed; the fact that patient families never receive a bill for this is noteworthy enough, but also phenomenal – and under-recognized, in my opinion – is the level of care provided. St. Jude is not just treating the illness itself, but looking at every aspect of both the patient’s physical and mental well-being as well as that of their families. Catastrophic illness devastates the entire family, and St. Jude works to provide coping strategies and resources for everyone involved. I had the privilege of meeting with some patients and their families during my tour, and what they emphasized was how the level of care at St. Jude makes it stand out from other hospitals, providing a very different experience for those who walk through their doors. St. Jude achieves this goal in several different ways, one of which is their Child Life program.
Child Life Specialists at St. Jude are experts ranging from the fields of psychology and counseling to child development and education. These specialists work with children and their families to help them make sense of what is happening and develop coping strategies. I had a chance to meet with one of these specialists for a Q&A about her job, and we had a great discussion about the many facets of what she does.
Easing Fears Through Play
When the Child Life Specialist walked into the room, she was carrying a big bag of medical supplies and teaching dolls like the one pictured above. These are used to help children understand the medical procedures that they are about to undergo and help them feel less afraid. Children have the opportunity to give these dolls “Treatments”, like putting a miniature blood pressure cuff around the doll’s arm, so they will know exactly what to expect when they undergo the same procedures. St. Jude also works to empower children by giving them choices whenever possible – something as simple as being able to choose whether they want to receive a shot in their right arm or left helps give children a little bit of control in a situation that would make any of us feel powerless.
Having Fun, Making Memories & Building a Legacy
One important way that Child Life Specialists interact with patients is by engaging them in a number of arts, crafts and special activities as a way to give the children a fun project that they can also use to express how they are feeling. These specialists aim to provide ways for children to create memories with their families and have lasting mementos; St. Jude focuses on the value and importance of every moment, regardless of the stage of illness or length of treatment.
One important goal at St. Jude is what they call “Legacy Building”: Creating a lasting legacy for each child. They offer “Legacy beads” to children for each procedure they receive along with treatment milestones, so they can collect them on a string as a way of recording their story.
Other ways that Child Life Specialists help create memories is by throwing holiday parties and helping patients celebrate other special moments, including “No Mo Chemo” parties when a patient completes chemotherapy.
Emotional Support For Families & The Community
When a child is facing a catastrophic illness, it impacts everyone around them. Child Life Specialists help everyone in the family cope:
- Siblings: St. Jude works to help siblings cope and feel included by offering a special legacy bead program for them. There is also a special room in the facility that is strictly for siblings: No one is allowed into this room except for the siblings of patients and the staff that run this particular area, and it provides a common area where siblings can hang out, socialize with each other, commiserate, and reflect in privacy.
- Parents: Child Life Specialists answer parents’ questions and are available to help parents talk to their children and explain what is happening. Their expertise helps families have the most difficult conversations imaginable in the most sensitive, profound way.
- Community: Sometimes Child Life Specialists will visit schools to help classmates understand a patient’s absence before they return to school by easing fears and answering typical questions the children may have – for example, “Why did my friend lose their hair?”. On occasion, these specialists will also visit a school to talk with pupils in the terrible circumstance that a patient passes away.
Teen Life Specialists
We spoke personally with a Child Life Specialist, but St. Jude also has Teen Life Specialists on hand to help teenage patients deal with their own unique circumstances. Teens have additional ways to build their legacy with projects like making music, recording videos, scrapbooking, and more. St. Jude is also working on developing a private social network exclusively for teens at St. Jude, with the ultimate goal of allowing them to socialize with other young people who understand what they are going through.
Child Life Specialists have an incredible perspective, and the compassion and sensitivity with which they approach these unthinkable challenges was really inspiring. They truly have the most amazing “Bedside manner” which is almost impossible to convey with words. Experiences like this made me understand why seeing St. Jude with my own eyes was so important. I wish that every family facing an illness had access to a Child Life Specialist like the one I met.
A $7 donation to St. Jude Children’s Research Hospital is enough to provide one child with a medical teaching doll. If you’d like to help out, you can donate online by visiting StJude.org/WaysToHelp, or shop for items through the St. Jude Gift Shop.