As a hospice child life specialist, I work with seriously ill children, their siblings or any other young people impacted by a child’s illness and impending death. I am one of two child life specialists at Gilchrist Kids.
An experience I had as a child helped shape my career as a child life specialist. When I was around 11, a neighborhood child my age became ill and passed away. His illness came on suddenly and spread quickly, which changed the way he communicated and related to his friends. A child life specialist came to speak with us to help us understand what was happening. Afterward, we were able to spend the last few months with him without being uncomfortable or scared. I will always remember how she helped me, and now I want to give the same help to other children and their families.
With the children I work with at Gilchrist, I spend the first visit determining the appropriate developmental approach based on the child’s age, severity of the illness and personal circumstances. I often use play and imagination to address the child’s social and emotional needs. For example, we may color, play Uno or another game, play hide-and-seek, paint or read together.
Sometimes I use “memory making”—either with the ill child or with siblings and other family members— such as putting together family photos, fingerprints, hand paintings or locks of hair. With a family recently, one of our child life specialists did all of these with the family while the child was in our pediatric hospice unit at Gilchrist Center Baltimore.
Usually, the parents have talked to the siblings about the child’s illness but not always. Sometimes the family is nervous or scared to have this conversation, and a child life therapist will help. In these situations, we will assess the child’s level of understanding and explain the illness in a developmentally appropriate way.
For the child who is receiving hospice care, often a doctor, nurse or parent has talked to them about their diagnosis. Child Life will help the child with whatever they may be feeling. A child may not want to talk about their diagnosis, so we will be there for support. Other times, the patient wants to know what they may feel, what will happen and whether they will be okay, and it is our responsibility to help them understand what is to come.
It is so rewarding to me to be a child life therapist for such an amazing organization. It is an honor for those of us on the Gilchrist Kids Child Life team to provide this care for children and families suffering with end-of-life situations.
To learn more about Gilchrist Kids, visit gilchristcares.org/gilchrist-kids.