关键词: 急性淋巴细胞白血病, 主要照顾者, 营养支持, 决策体验, 纵向质性研究, 儿科护理学

Abstract:

Objective To investigate how caregivers of children with acute lymphoblastic leukemia make decisions about nutritional assistance and how they undergo change during induction，so as to serve as a foundation for the therapeutic development of focused therapies. Methods Using the purposive sampling method，from June to November 2024，19 caregivers of children in the induction period of acute lymphoblastic leukemia in the Department of Hematology of a tertiary grade A women and children’s hospital in Guangzhou were selected as the research subjects. Co-temporal and ephemeral analyses were selected to explore caregivers’ decision-making experiences and corresponding trends at various stages. Results Totally 3 themes and 9 sub-themes were extracted，including trajectories of decision-making behavior change（negative characteristics of decision-making behavior in the early stage，emergence of decision-making behavior in the middle stage，and prominence of irrational decision-making behavior in the late stage），course of change in inner feelings（anticipation and bewilderment，reflection and perplexity，and helplessness and frustration），and influences on the change of decision-making behavior（lack of motivation for decision-making in the early stage，unclear guidance in the middle stage，and lack of positive result incentive in the later stage）. Conclusion The experience of nutritional support decision making in caregivers of children with acute lymphoblastic leukemia induction period is dynamic. Healthcare professionals need to take targeted interventions according to the trajectories of their decision-making experience and the reasons for behavioral changes at different induction stages to help caregivers form and maintain good nutritional support behaviors.

Key words: Acute Lymphoblastic Leukemia, Primary Caregivers, Nutritional Support, Decision-Making Experience, Longitudinal Qualitative Study, Pediatric Nursing