目的 探讨烟雾病患者从症状识别、求医和手术决策至早期术后恢复的经历及护理需求,为阶段化围术期护理提供依据。方法 2025年9月至2026年2月,采用描述性质性研究,以最大差异化目的抽样选取上海市某三级甲等医院12例行脑血流重建术的烟雾病患者进行半结构式访谈,采用归纳式团队主题分析。资料收集与分析同步进行。结果 提炼出4个主题:罕见病不确定性下的认知重构与求医辗转、风险权衡中的手术决策与专业信任、情绪波动及关系性支持下的调适、康复不确定性与生活重建期待。结论 不确定性贯穿烟雾病患者就医及围术期经历,护理人员应对其强化可理解的风险沟通、情绪支持和以出院准备为枢纽的连续康复护理。

Objective To explore the experiences and nursing needs of patients with moyamoya disease from symptom recognition,healthcare-seeking and surgical decision-making to early postoperative recovery,so as to provide evidence for staged perioperative nursing.Methods A descriptive qualitative study was conducted.From September 2025 to February 2026,12 patients who had undergone cerebral revascularization at a Grade A tertiary hospital in Shanghai were selected by maximum variation purposive sampling and interviewed using semi-structured interviews.Inductive team-based thematic analysis was employed.Data collection and analysis were conducted concurrently.Results Four themes were identified,namely cognitive reconstruction and a circuitous healthcare-seeking journey under the uncertainty of a rare disease,surgical decision-making and professional trust amid risk weighing,emotional fluctuations and adjustment supported by relational resources,and rehabilitation uncertainty with expectations for life reconstruction.Conclusions Uncertainty permeates patients' healthcare-seeking and perioperative experiences.Nursing staff should strengthen comprehensible risk communication and emotional support,and provide continuous rehabilitation nursing with discharge preparation as the pivot.

R473

国家自然科学基金面上项目(82572924)；复旦大学附属华山医院临床研究基金研究护士项目(KY2025-776)；复旦大学附属华山医院医院文化与医学人文研究课题(KY2025-1529)；上海市医学会伦理学会叙事医学分会研究课题(SHXS202602)