目的 深度剖析结外自然杀伤/T细胞淋巴瘤患者的患病体验，揭示其疾病经历的本质性结构。方法 2019年12月至2023年5月，采用目的抽样法结合最大差异抽样策略，选取上海市某三级甲等医院血液内科收治的21例结外自然杀伤/T细胞淋巴瘤患者为研究对象，运用半结构式访谈收集资料，采用Colaizzi 7步分析法进行分析。结果 结外自然杀伤/T细胞淋巴瘤患者的患病体验可归纳为五大主题：躯体症状的多维侵袭与功能受限、诊疗困境与心理应激的交互作用、疾病叙事下的生活重构、污名化语境中的社会关系嬗变、疾病体验的意义转化与生命叙事。结论 结外自然杀伤/T细胞淋巴瘤患者的疾病体验是生理痛苦、文化语境与个体能动性交织的复杂叙事。护理应构建“生物-心理-社会文化”一体化的干预网络，推动患者从“医疗对象”向“健康合作者”转型。

Objective To deeply analyze the illness experience of patients with extranodal natural killer/T-cell lymphoma (ENKTL) and reveal the essential structure of their disease journey.Methods From December 2019 to May 2023,a purposive sampling method combined with a maximum variation sampling strategy was used to select 21 patients with ENKTL admitted to the hematology department of a tertiary A hospital in Shanghai.Semi-structured interviews were conducted to collect data,which were analyzed using Colaizzi’s 7-step analysis method.Results The illness experience of ENKTL patients was summarized into 5 main themes: multidimensional invasion of physical symptoms and functional limitations,interaction between diagnostic and treatment difficulties and psychological stress,life reconstruction through disease narrative,transformation of social relationships in a stigmatized context,and transformation of the meaning of the experience and life narrative.Conclusions The illness experience of the patients with ENKTL is a complex narrative intertwined with physical suffering,cultural context,and individual agency.Nursing care should build an integrated intervention network encompassing “biological-psychological-sociocultural” dimensions,promoting the transformation of patients from “medical objects” to “health collaborators”.

R473.73；R473.55

新华医院护理学科骨干人才培养计划（xhlgg007）；新华医院学科攀峰计划（XKPF2024C306）