Truth-telling experiences and preferences of school-aged children with acute lymphoblastic leukemia: A phenomenological study.

Abstract

Truth-telling in pediatric oncology remains challenging, and school-aged children's perspectives are seldom directly examined. This study explored diagnostic disclosure experiences and perceived communication preferences among school-aged children with acute lymphoblastic leukemia (ALL). This study employed a descriptive phenomenological design. Data were collected between August 2019 and May 2020 through semi-structured individual interviews with 15 school-aged children diagnosed with ALL. Interviews were analyzed using Colaizzi's method to identify emerging themes. Two primary themes were identified: (1) "Vague understanding of illness," reflecting children's experiences of limited or indirect disclosure within a parent-centered communication culture, intuitive awareness, and ambivalence about knowing; and (2) "Children's preferences for child-centered truth-telling," describing children's expressed preferences for information that aligned with their readiness, supported self-care, and was communicated in clear, gentle, and age-appropriate ways. These findings should be understood as context-specific and exploratory, reflecting school-aged children's perspectives on diagnostic disclosure within a family-centered cultural context. These findings may inform pediatric healthcare professionals about children's perspectives on diagnostic disclosure and underscore the relevance of developmentally sensitive, child-inclusive communication approaches in pediatric oncology care.