Abstract:

Objective To understand the illness experience of adolescent patients with systemic lupus erythematosus，so as to provide references for clinical medical staff to formulate targeted intervention strategies. Methods Semi-structured interviews were carried out from January to April 2022 by phenomenology. 11 adolescent patients with systemic lupus erythematosus from the pediatric clinic or ward of a tertiary A hospital in Beijing were recruited，and Colaizzi’s 7-step analysis method was applied to analyze and refine themes of interview data. Results 4 themes were extracted. Theme 1：bad physiological experience（pain and fatigue）； theme 2：negative psychological experience（suffer harm from others，prejudice against oneself，fear of disease，and worries about the future）； theme 3：disease coping style（conflict and resistance，compromise and concession，acceptance and adjustment）； theme 4：po-sitive psychological experience（feel the support of others and gain self-growth）. Conclusion Pediatric medical staff should pay attention to the physical and mental feelings of adolescent patients with systemic lupus erythematosus in the course of illness，and give scientific and effective interventions to promote their physical and mental comfort.

Key words: Adolescents, Systemic Lupus Erythematosus, Symptom Experience, Psychological Experience, Qualitative Research, Pediatric Nursing

摘要：

目的 深入了解青少年系统性红斑狼疮患者的疾病体验，为临床医护人员制订针对性的干预策略提供参考依据。 方法 采用现象学研究方法，选取2022年1月—4月在北京市某三级甲等综合医院儿科就诊或住院的11例青少年系统性红斑狼疮患者进行半结构式访谈，使用Colaizzi 7步分析法提炼主题。 结果 青少年系统性红斑狼疮患者的疾病体验可归纳为4个主题：①不良生理体验，包括疼痛、疲劳；②负性心理体验，包括遭受他人的伤害、对自我的偏见、对疾病的恐惧、对未来的担忧；③疾病应对方式，包括抵触与抗拒、妥协与屈服、接纳与调适；④正性心理体验，包括感受到他人关爱、获得自我成长。 结论 儿科医护人员应重视青少年系统性红斑狼疮患者在患病过程中的身心感受，针对性地给予科学、有效的干预，以促进其身心舒适。

关键词: 青少年, 系统性红斑狼疮, 症状体验, 心理体验, 质性研究, 儿科护理学