209: Research on Parent Caregivers of Children with Medical Complexities - Elise's Story
Release Date: 03/06/2024
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Hope isn't about avoiding the hard truths. It's about staying grounded in them and still believing that something good is possible."- Katie Taylor In this final episode of 2024, Katie dives deep into the meaning of hope, exploring its role in navigating challenges for parents, children and Child Life Specialists. Reflecting on personal experiences and heartfelt conversations with families, this episode unpacks how hope isn’t blind optimism but a source of strength that coexists with pain and uncertainty. With stories, reflections, and an invitation to carry hope into the new year,...
info_outline 236: The Mix of Joy & Grief through Medical Parenting (autism, lissencephaly and lennox gastaut syndrome) – Joanne's StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin’s rare brain malformation, lissencephaly and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she’s experienced. As a mother and special education teacher, and now an...
info_outline 235: A Mother’s Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.”-Kathy In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy’s story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital...
info_outline 234: Expert Child Life Tips for Supporting Children Through an Upper GI ProcedureChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. “You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their...
info_outline 233: From NICU Nurse to NICU Mom: Premature Twins born at 33 weeks - Brittney’s StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
A huge thank you to our sponsor of today's podcast, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This...
info_outline 232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
A huge thank you to our sponsor of today's podcast, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes...
info_outline 231: Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should KnowChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots. The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app...
info_outline 230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story "We’ve joined a club that nobody wants to be a part of, but the good part is we have the best members." A huge thank you to our sponsor of today's podcast, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and...
info_outline 229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant’s diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of...
info_outline 228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's StoryChild Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki’s journey navigating her daughter Taylor's...
info_outlineAdvocacy, Compassion, Innovation: Elise's Child Life Journey
"Working with children with medical complexity and developmental differences isn't just a job; it's rooted in who I am." - Elise Cofer, CCLS
Research Article: Fitting the Pieces Together
In this captivating episode of Child Life On Call, Katie Taylor sits down with Elise, a Nashville-born child life specialist who brings her passion and dedication to the hematology oncology unit at Vanderbilt. Elise's journey into child life, driven by a background deeply embedded in caring for children with special needs, showcases her commitment to enhancing pediatric healthcare. Through her story, listeners will gain insights into the challenging yet rewarding world of a child life specialist. Elise discusses the evolution of her career, her groundbreaking research on caregiver support, and her vision for a more inclusive and personalized approach to pediatric healthcare.
"Elise's insights remind us of the critical role child life specialists play in not just supporting children, but whole families through their healthcare journeys." - Katie Taylor, CCLS
Key Insights and Lessons:
- The Holistic Approach: Elise's interdisciplinary background highlights the importance of integrating care for children with special needs, emphasizing a holistic approach to their well-being.
- Research as a Pathway for Change: Elise shares her research findings on caregiver experiences, revealing a profound need for targeted child life interventions that support not only the child but the entire family unit.
- Advocacy and Empowerment: Through her work and research, Elise emphasizes the power of advocacy by caregivers and the role of child life specialists in empowering families to navigate the healthcare system effectively.
- The Importance of Listening: One of the most critical skills in child life work, according to Elise, is the ability to listen—to truly hear the needs and wishes of children and their families, thereby tailoring support to each unique situation.
Recommendations:
- For Families: Elise recommends resources that provide guidance on navigating the healthcare system for children with medical complexities, emphasizing the importance of community support and advocacy.
- For Child Life Specialists: Insights into integrating research findings into practice, enhancing the child life specialist's toolkit for supporting families dealing with medical complexities.
🌟 Connect and Share Your Story: Join our community on Instagram @ChildLifeOnCall to share your journey and find support from others navigating similar paths.
As we continue to explore the depths of pediatric healthcare through stories like Elise's, we are reminded of the resilience, courage, and love that drive individuals to make a significant impact. Stay tuned for more inspiring episodes from Child Life On Call.
Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.
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Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.