End-of-Life Issues in US Child Life Specialist Programs

Abstract

A professional outlet in most children's hospitals for seriously-ill children is the child life specialist. Our objective in this study was to determine the extent that dying and death is emphasized in child life programs in the United States. Therefore, we surveyed via snail mail the 35 child life programs on the website of the Child Life Council. A response rate of 74% revealed that all programs offer something on this topic and over twothirds have a separate course for the topic of dying and death, with an average of 33 course content hours of instruction per program. The lecture mode is the most frequent teaching method, and the child life specialist is most often the instructor.

Twenty-First Century End-of-Life Issues in Selected U.S. Professional Schools

“…Return rates were 79% from medical schools (N = 99), 71% from nursing schools (N = 410) (Dickinson, 2007), 90% from dental schools (N = 52) (Sirmons, Dickinson, & Burkett, 2010), 74% from child life programs (N = 26) (Parvin & Dickinson, 2010), and 100% from veterinary medicine schools (N = 28) (Dickinson, Roof, & Roof, 2011). With the exception of dental schools (58%), over 96% of the various professional schools offered "something" on end-of-life issues.…”

“…This emphasis in child life indicates the importance of the topic of dying, death, and bereavement in child life educational programs. One child life respondent stated (Parvin & Dickinson, 2010): I can't imagine not having this be a required part of educational preparation for child life specialists. In talking with students, I've found that this topic by far creates the most anxiety in regard to future clinical practice.…”

The Role of the Certified Child Life Specialist With Adolescent and Young Adult Patients in Japanese Hospitals

“…Many researchers have found that children and adolescents with chronic diseases tend to have more psychological problems when compared with healthy children and adolescents (Carter, 2014;Doka, 1996;Litt et al, 1982;Parvin & Dickinson, 2010). Rollins and colleagues (2018) found that the potential effects of chronic illness or disabilities for adolescents increase their sense of feeling different from their peers, limit job or career opportunities, increase concern about why they have the disorder, limit opportunities for heterosexual friendships, decrease their abilities to master their medical self-care, and lead to difficulty with the transition from the pediatric to adult unit.…”

“…Specifically, pediatric patients with chronic disease respond to strict treatment regimens with regressive and dependent reactions, aggressive nonadherence, and impaired self-esteem (Doka, 1996;Rollins et al, 2018). In addition, adolescents may begin to fear that their life span could be limited by chronic disease or death (Parvin & Dickinson, 2010;Rollins et al, 2018).…”

“…One of the essential roles for child life specialists in the hospital setting is supporting children and their families with issues related to death, dying, and bereavement (ACLP, 2018c). Most child life programs in the United States offer interventions for pediatric patients and their families at end of life, specifically child life education programs about death and dying (Parvin & Dickinson, 2010;ACLP, 2018c). Child life specialists have an understanding of all aspects of death, dying, and bereavement and are prepared for psychosocial crises or end-of-life events in the hospital (ACLP, 2018c).…”