重症肌无力患者症状经历及心理感受的质性研究

Symptomatic and Psychological Experience of Patients with Myasthenia Gravis:A Qualitative Study

目的:全面了解重症肌无力患者症状经历及心理感受。方法:采用现象学研究法,对17例重症肌无力患者进行半结构式访谈,运用Colaizzi 7步分析法对访谈资料进行分析。结果:归纳出3个主题,疾病相关症状:眼部症状、面部症状、球麻痹症状、颈部和四肢症状、呼吸症状;治疗相关症状;负性情绪经历:复发或加重的恐惧、病耻感、睡眠障碍、心理状态改变、灾难化解释。结论:重症肌无力患者存在多种症状困扰,承受着巨大的症状负担。

Objective:To gain a comprehensive understanding of the symptoms and psychological feelings experienced by patients with myasthenia gravis.Methods:Semi-structured interviews were performed by phenomenology in 17 patients with myasthenia gravis.Data was analyzed by Colaizzi’s 7-step analysis method.Results:Three themes were extracted,including disease-related symptoms(eye symptoms,facial symptoms,bulbar palsy symptoms,neck and limb symptoms,and respiratory symptoms),treatment-related symptoms,and negative emotion experience(recurrence or aggravation of fear,stigma,sleep disturbance,mental state change,and catastrophic explanation).Conclusion:Patients with myasthenia gravis suffer a wide variety and huge burden of symptoms.