Parents’ behaviors and thoughts with respect to the daily lives of children with acute lymphoblastic leukemia undergoing home-based oral chemotherapy

Abstract

 Maintenance therapy for children with acute lymphoblastic leukemia (ALL) requires continued oral anticancer drug treatment at home. This study aimed to explore the behaviors and thoughts of parents with respect to the daily lives of children with ALL who are undergoing home-based chemotherapy. Semi-structured interviews were conducted with 14 caregivers of children with ALL receiving outpatient treatment at the pediatric department of Hospital A. Data were analyzed qualitatively, and eight categories of parents’ behaviors, such as “strict infection prevention measures with awareness of the child’s immunosuppression,” and seven categories of parents’ thoughts, such as “expectations and concerns about living at home while continuing chemotherapy,” emerged. Parents held a strong sense of responsibility to ensure the accurate administration of oral chemotherapy and took thorough measures to prevent infection while holding the desire to allow their children to live a normal life. The extent to which parents implemented safety measures to prevent exposure to anticancer drugs at home varied. The findings highlight the importance of social support for parents, the need for environmental adjustments around the child, and the necessity of strengthening guidance on anticancer drug exposure prevention for families.