ONCE UPON A GENE - EPISODE 202 - Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor
Katie Taylor is a child life specialist and Founder of Child Life On Call, who is working to close the resource gap through the intersection of child life services and technology. Her mission is to educate, empower and bring rare disease families the support they never knew they needed. We're talking about how to harness the power and magic of your child life specialist's expertise and about the immense value they can bring to your rare disease journey.
EPISODE HIGHLIGHTS
What is a child life specialist?
We are psychosocial care and child development experts who work in healthcare and our job is to look at the whole family system with a child development lens and determine how we can best support families, equip them with tools and coping skills and make them feel like confident advocates in challenging situations.
What inspired the inception of Child Life On Call?
I was a child life specialist working at a small hospital with little resources for connecting parents. I first started the podcast to serve as a tool to connect parents and a platform for parents to share their experience and resources. With more apparent gaps, I knew I had to continue striving to fill it.
What do child life specialists do in a hospital and what gaps exist?
Typically we're procedure or diagnosis based and we're there to help prepare and support children and families during diagnosis and equip them with the education, tools and resources necessary in those situations. We also have non-clinical responsibilities such as training other staff and teaching child development and how to serve families. We also sit on pain management and bereavement committees and weigh in with a family-centered focus. Unfortunately, there are more families in need of support than there are child life specialists and there are multiple demands of our jobs, clinical and non-clinical. Through Child Life On Call, I'm trying to ensure families come to the hospital and have access to the Child Life On Call App and they can easily access resources they may need.
What are your future goals for Child Life On Call?
It's not health equity when one family gets a child life specialist and another family doesn't. We are working to sell the app to hospitals, which doesn't replace child life specialists, but it gives parents the resources they need. We're currently in one hospital and we'll be in three by the end of the year.
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