Effects of a storybook about new leukemia diagnosis versus standard education on caregiver stress: a pilot randomized controlled study

by Erin Shields

Coauthors: Mandy Flores, BA - Program Coordinator, Literally Healing Kaitlin O’rourke, RN - Research Nurse Troy Zeier, MS - Biostatistician Rebecca Barber, PhD, RN - Research Mentor

DEI Innovations

Background/Significance. Leukemia is the most common childhood cancer, accounting for nearly 24.9% of new childhood cancer diagnoses, with a median age of 6 years old. Certified child life specialists (CCLS) support caregivers in offering developmentally appropriate education to children in the hospital setting. Child life interventions include preparation and diagnosis education and are founded on theory, aimed at promoting positive coping and lessening the traumatic impact of hospitalization. One intervention tool that can be used with school-aged children to increase their understanding of a new diagnosis is therapeutic books.
Aims 1. The primary aim of this study is to evaluate the effect of storybook on caregiver stress measured at three time points: baseline, discharge, and follow-up. 2. The secondary aims of this study are a) to assess comfort levels and caregiver’s perception of their child’s understanding of the leukemia diagnosis at baseline; b) to assess perceived importance and readiness around discussing aspects of the diagnosis at discharge.
Methods. Caregivers (N=46) of children newly diagnosed with leukemia in the inpatient hematology-oncology units at CHLA will be randomized in the storybook group (intervention), or the standard child life support (control). Both the control and intervention group will be given both the Parenting Stress Index-Short Form (PSI™-4-SF) and Caregiver Comfort survey at baseline, discharge, and follow-up. Participants in the intervention group will receive the storybook as part of their child life intervention. The CCLS will introduce the book, and discuss common developmental considerations, offering the caregivers suggestions on how to utilize the storybook with their child and answer additional questions about the storybook. Summary statistics means, medians, standard deviations and interquartile range will be calculated to summarize variables, we will trend data using graphs, and we will perform pre-planned statistical tests in R.