目的 探讨青少年系统性红斑狼疮患者父母的照护体验。 方法 采用目的抽样法，选取2021年4月至2022年3月在济南市某三级甲等医院风湿免疫科住院的青少年系统性红斑狼疮患者的父母作为研究对象，对其进行半结构式深入访谈，采用Colaizzi现象学7步分析法对访谈资料进行分析。 结果 青少年系统性红斑狼疮患者父母照护体验可归纳为5个主题：负性情绪、知识缺乏、照顾负担、创伤后成长和期待未来。 结论 护士应关注青少年系统性红斑狼疮患者父母的照护体验和感受，并对其提供疾病知识及心理疏导等专业支持，从而改善其心理状态，实现对患者的最佳照护。

Objective To explore the parents’ experiences of caring for adolescents with systemic lupus erythematosus (SLE). Methods Purposive sampling was used to select parents of SLE adolescents for semi-structured in-depth interviews from the Department of Rheumatology and Immunology in a tertiary hospital in Jinan City from April，2021 to March，2022.The Colaizzi phenomenological 7-step analysis method was used to analyze the interview data. Results Five themes on the parents’ experiences of caring for SLE adolescents were summarized，including negative emotions，lack of knowledge，caring burden，post-traumatic growth and expectations for future. Conclusions Nurses should pay attention to the parents’ experiences and feelings of caring for SLE adolescents，and provide them with professional supports in disease information and psychological counseling，so as to improve their mental status and achieve optimal care for the patients.

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