Living With Leukemia: A Phenomenological Study Of School-Age Children's Experiences During Chemotherapy In Indonesia

Abstract

Introduction: Leukemia is the most prevalent childhood cancer, and its primary treatment, chemotherapy, imposes profound physical, psychological, social, and spiritual burdens on affected children. Understanding children's own lived experiences of this illness and its treatment is essential to developing person-centered nursing intervention. The objectives were to explore the lived experiences and health problems of school-age children with leukemia during chemotherapy. 

Method: A Descriptive qualitative study using a phenomenological design was conducted with five school-age children (7-13 years) with acute lymphoblastic leukemia (ALL) in the consolidation phase. Data were collected through semi -structured child interviews, then analysed using qualitative content analysis by NVivo 12.

Results: Four themes emerged from children's narratives: (1) altered physical condition, characterized by fatigue, nausea, and limited mobility; (2)  pervasive negative emotions, including procedural fear, anxiety, sadness, and boredom; (3) restricted social and spiritual participation, encompassing loss of schooling, peer separation, and disrupted religious routines; and (4) transformed play experiences, marked by dependence on digital devices and absence of meaningful play in the hospital setting. 

Conclusion: Children with leukemia experienced multidimensional suffering during chemotherapy that extends well beyond physical symptoms. Integrated nursing intervention addressing physical, psychological, social, and spiritual dimensions simultaneously is urgently needed to improve their quality of life during hospitalization.