End-of-Life Issues in US Child Life Specialist Programs: 2009–2019

Abstract

Child life specialists play a crucial role with children and their families when the child has a life-threatening illness and is hospitalized by trying to establish some degree of normalcy in a situation void of such. Programs designed to train child life specialists have expanded over the last 10 years. This is a follow-up of our previous study a decade ago to determine if offerings on end of life issues have changed in US child life programs since 2009. We surveyed the 48 child life academic programs in the U.S. in 2019 and compared these findings with the earlier survey in 2009. We also analyzed the websites of all 48 programs to obtain a better understanding of current death and dying offerings in U.S. child life programs. All child life programs now include content on death, dying, and bereavement. Child life programs continue to emphasize end-of-life issues, with child life specialists being the primary deliverers of such information. Communication with patients with life-threatening illnesses, communication with family members of such patients, and grief and bereavement were the three most covered topics in both 2009 and 2019. U.S. child life specialist programs have increased in numbers over the decade and continue to prepare child life specialists to relate to children with life-threatening illnesses and their families, thus playing a pivotal role in the lives of these individuals.