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

摘要：

目的 探讨急性淋巴细胞白血病患儿照顾者在诱导期间的营养支持决策参与体验及变化过程，为临床制订针对性的干预措施提供依据。 方法 采用目的抽样法，于2024年6—11月，选取广州市某三级甲等妇女儿童医院血液科的19名急性淋巴细胞白血病诱导期患儿照顾者作为研究对象，采用共时分析和历时分析，探索照顾者各阶段的营养支持决策参与经历和相应的变化趋势。 结果 提取3个主题和9个亚主题，即决策参与行为变化轨迹（诱导前期消极营养支持决策参与行为、诱导中期营养支持决策参与行为显现、诱导后期非理性决策参与行为突出）、自我感受变化历程（诱导前期期待与迷茫、诱导中期反思与困惑、诱导后期无助与挫败）、决策参与行为变化的影响因素（诱导前期-决策动力不足、诱导中期-决策指引不明确、诱导后期-缺乏正向结果激励）。 结论 急性淋巴细胞白血病诱导期患儿照顾者的营养支持决策参与体验呈动态变化，医护人员需根据其不同诱导阶段的决策参与体验轨迹及行为改变原因，采取针对性的干预，帮助照顾者形成并维持良好的营养支持行为。

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