年轻系统性红斑狼疮患者患病体验的质性研究

The experience of young patients with systemic lupus erythematosus ： a qualitative research

目的探究年轻系统性红斑狼疮（SLE）患者对于疾病的切身感受及其在患病期间经历的情感体验与心理转变，了解影响疾病体验的相关因素。方法采用质性研究中的现象学研究法，通过目的抽样选取12例年轻女性SLE患者，采用半结构式深度访谈法进行资料收集，使用Colaizzi分析法分析、提炼所得资料。结果归纳得出3个主题：患病后的情绪体验；疾病带来的限制；疾病造成的病耻感。结论年轻SLE患者的患病体验呈动态变化，医护人员应加强关注，准确评估，提供针对性干预措施，构建延续性照护体系，营造宽容的支持环境，全方面提高患者生命质量。

Objective To explore the illness experience and perspectives of youth patients with systemic lupus erythematosus （SLE） in China. Methods The research was conducted following phenomenological approach of qualitative research. Twelve patients with SLE were selected through purposive sampling method. The interviewer conducted hour-long semi-structured interviews according to the proposed interview outline. Data were analyzed based on Colaizzi phenomenological research method. Results Three themes were identified, including emotional experience since illness, SLE related limitations, and perceived stigma. Conclusions There exists a dynamic variation in disease related experience of young SLE patients. Understanding the feelings of those patients can help eliminate the negative factors so as to provide effective nursing intervention for patients and improve the quality of young patients＇ life with long-term living.