Abstract:

Objective To understand the real experience of patients with systemic lupus erythematosus（SLE） receiving glucocorticoid maintenance therapy.Methods Sixteen patients with systemic lupus erythematosus receiving glucocorticoid maintenance therapy were interviewed using semi-structured interview and data were analyzed by Colaizzi’s seven-step method.Results Four themes were extracted：theme 1：insufficient knowledge of patients on glucocorticoids;theme 2：reduced subjective well-being of patients;theme 3：increased self-perceived burden of patients;and theme 4：patients’ self-identification and acceptance. theme 2 included four sub-themes：self-realization constraints,marital and reproductive crisis,image disorders,lifestyle changes;and theme 3 included three sub-themes：increased negative emotions,increased economic burden,and insufficient social support.Conclusion SLE patients treated with long-term glucocorticoid maintenance therapy have multiple burdens and demands in physical,psychological and social aspects. Nursing staff should pay more attention to these patients,timely and targeted counseling intervention should be conducted to improve patients’ self-perception during maintenance treatment.

Key words: Lupus Erythematosus, Systemic, Glucocorticoids, Self-Perception, Qualitative Research

摘要：

目的 了解系统性红斑狼疮患者糖皮质激素维持治疗的自我感受。方法 对16例患系统性红斑狼疮、接受糖皮质激素维持治疗的患者进行半结构式访谈,并用Colaizzi 7步法分析资料。结果 提炼出4个主题：主题1为患者糖皮质激素相关知识掌握不足;主题2为患者主观幸福感降低;主题3为患者自我感受负担增加;主题4为患者自我认同与悦纳。其中主题2包括4个次级主题：自我实现受限、婚育状况危机、形象紊乱、生活方式改变;主题3包括3个次级主题：负性情绪增多、经济负担加重、社会支持不足。结论 接受糖皮质激素维持治疗的系统性红斑狼疮患者在生理、心理、社会等方面存在诸多负担与需求。护理人员应加强对此类患者的关注,做好针对性地疏导干预,改善患者维持治疗过程中的自我感受。

关键词: 红斑狼疮, 系统性, 糖皮质激素类, 自我感受, 质性研究