骨肉瘤患儿家庭照顾者治疗决策体验的质性研究
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女,硕士在读,学生

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湖北省自然科学基金项目(2020CFB782)


Experiences of family caregivers of osteosarcoma children regarding treatment decision-making:a qualitative study
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    摘要:

    目的 探讨骨肉瘤患儿家庭照顾者在治疗决策过程中的真实体验,为优化临床决策支持服务,提升照顾者决策能力提供参考。方法 采用现象学研究,以目的抽样法选取13名骨肉瘤患儿的主要家庭照顾者,针对治疗决策过程中的真实体验进行半结构式访谈,运用Colaizzi 七步分析法进行资料分析并提炼主题。结果 共提炼出3个主题及9个亚主题:决策心理负荷的阶段演变(确诊初期的冲击、治疗过程中的决策倦怠、面对复发时的绝望与最后抉择),缺乏足够的决策时间(病情与治疗节点的客观紧迫性、信息获取与理解的时间困境、协调家庭意见的时间困境),对系统性决策支持的迫切需求(对可视化信息的需求、希望与医疗团队深度沟通、对决策支持者的期待)。结论 骨肉瘤患儿家庭照顾者在治疗决策过程中面临着随治疗阶段演变的心理压力、决策时间与支持不足等问题。医护人员应重视其阶段性心理变化、优化决策流程时间安排,并通过制度化沟通渠道,提升其决策能力。

    Abstract:

    Objective To explore the authentic experiences of family caregivers of children with osteosarcoma during the treatment decision-making process, aiming to provide a reference for optimizing clinical decision-support services and enhancing caregivers′ decision-making capacity.Methods A phenomenological study design was adopted. Purposive sampling was used to select 13 primary family caregivers of children with osteosarcoma for semi-structured interviews regarding their lived experiences during the treatment process. Data were analyzed and themes were extracted using the Colaizzi seven-step analysis method. Results Three main themes and nine sub-themes were identified:the stage-based evolution of decision-making psychological burden (the shock of the initial diagnosis, decision fatigue during the treatment process, and despair and final choices when facing recurrence); lack of sufficient decision-making time (objective urgency of the disease and treatment milestones, time dilemmas in information acquisition and comprehension, and time dilemmas in coordinating family opinions); urgent need for systemic decision support (demand for visualized information, desire for in-depth communication with the medical team, and expectations for decision-support personnel). Conclusion Family caregivers of children with osteosarcoma face challenges such as psychological pressure that evolves with treatment stages, as well as insufficient decision-making time and support. Healthcare professionals should pay close attention to their stage-specific psychological changes, optimize the timing of decision-making processes, and enhance their decision-making capacity through institutionalized communication channels.

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徐镇燕,彭历,邓鑫.骨肉瘤患儿家庭照顾者治疗决策体验的质性研究[J].护理学杂志,2026,41(10):52-55

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  • 收稿日期:2025-10-20
  • 最后修改日期:2026-01-11
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  • 在线发布日期: 2026-06-15