Development and Implementation of a Disease‐Targeted Storybook as a Clinical Tool for Children With Acute Leukemia

BACKGROUND: Although significant progress has been made in childhood leukemia survival, healthcare providers, and caregivers often face challenges in explaining this disease to patients. Disease-targeted storybooks have been proposed as a tool to facilitate the understanding of diagnoses and treatment. However, to date, no study has examined their effects on the anxiety of children with leukemia. OBJECTIVE: To examine the effect of the disease-targeted storybook in improving children's perceived disease- and treatment-related anxiety and in educating patients about the disease. METHODS: A single-arm pre-post study was conducted among patients aged 4-7 years with acute childhood leukemia in Thailand. A disease-targeted storybook was read to the participant, first by the researcher and then by their caregivers. This book provided information about illness and treatment while providing space for emotional expression. Disease- and treatment-related anxieties were measured using a visual analogue scale at baseline, immediately after reading, and 2 weeks later. Knowledge was assessed using a 10-item questionnaire. RESULTS: Twenty patients participated in the study. Disease-related perceived anxiety decreased from 4.4 (95% confidence interval [CI]-2.91-5.89) to 2.9 (95%CI-1.41-4.39) immediately (p = 0.066) and remained at 2.35 (95%CI-0.86-3.84) 2 weeks later (p = 0.012). Treatment-related perceived anxiety declined from 7.9 (95%CI-6.56-9.24) to 6.15 (95%CI-4.81-7.49) (p = 0.034) and to 4.1 (95%CI-2.76-5.44) (p < 0.001). Knowledge improved significantly. Most children and their caregivers reported satisfaction with the storybook. CONCLUSION: A disease-targeted storybook can serve as an adjunctive clinical tool to reduce anxiety and improve disease-related knowledge among pediatric patients with acute leukemia.