(Condensed from CHiPPS E-Journal, August, 2015, Issue #40, pages 25-26)
Caring for a child with a complex and chronic medical condition requires an interdisciplinary team approach to best meet the varied and unique needs of the child and family. One vital member of this team is the Child Life Specialist. Child Life Specialists are trained professionals who specialize in therapeutic play and the developmental needs of children.
Child Life Specialists in the pediatric hospice setting play an integral role in providing the highest quality of care for children and families. Hands of Hope Pediatric Hospice and Palliative Care in South Carolina is one such organization. Hands of Hope is a comprehensive in-home pediatric support service organization that values the importance of Child Life Specialists when it comes to serving pediatric patients in the home. This care for the patient and siblings includes:
(1) Opportunities for facilitating memory making with unique pieces of art
(2) Encouraging expressive art and therapeutic play for coping
(3) Assisting to fulfill a patient’s final wishes through wish foundations and community support
(4) Providing individualized support for siblings
(5) Offering education on facilitating end-of-life discussions with a child and
(6) Making bereavement services available
April M., Pediatric Resource Nurse for Hands of Hope, reflects on the work of a Child Life Specialist with an eight-year-old patient,“Through expressive play, they are able to help the child have a voice. Many times this changes the course of treatment for the child. A great example is when I was able to sit in with one of our Child Life Specialists while doing ‘My Wishes’ with a patient in end stage mitochondrial disease. During the process of completing My Wishes, the child was able to express that she hated the hospital and never wanted to go back, even if she got really sick. The patient’s mother, while in the other room, overheard her child say this and decided that day to change her code status to an AND (Allow Natural Death) and refuse any more hospitalizations.”
Catrina D., whose seven-year-old son and cousins were seen by a Child Life Specialist before and after the death of their grandfather, writes, “Hospice and our Child Life Specialist have become a part of our forever family. They have helped us, never judged or criticized. They listened, hugged, laughed, cried, but most importantly, loved.”
When it comes to community education and support, the Child Life Specialists for Hands of Hope also assist in creating curriculum and serving as leaders at Camp Hands of Hope, a bereavement camp for children, ages five through eighteen, and their families who are grieving the loss of a loved one. Whitney Crislip, Associate Director for the Hospice and Palliative Care Foundation, states “Child Life Specialists are instrumental in assisting with the development and growth of our semi-annual weekend long bereavement camp. Their knowledge and expertise are essential in developing curriculum and activities that are appropriate for each of the age groups we work with. Their talent and skills are a necessity when it comes to developing a well-planned bereavement camp for youth of all ages.”
The presence of Child Life Specialists in the field of hospice is uncommon, but the need is crucial. When looking to enhance your interdisciplinary team and improve the quality of life for pediatric or adult hospice patients and families, consider child life.
Magellan Taylor, MA, CCLS is a Certified Child Life Specialist for the Supportive and Palliative Care team at Baylor All Saints Medical Center in Fort Worth, Texas. Her role involves supporting children, ages 0-18, who have an adult loved one with a serious, life-threatening or life-limiting illness. Magellan has a Master’s degree in Human Development and Family Studies with an emphasis in child life from The University of Missouri. She believes working with children and families facing end-of-life situations is truly her calling, and has a passion for serving others during these critical moments.