耐多药结核病患者患病体验的定性研究

A qualitative study on illness experience of patients with multidrug-resistant tuberculosis

对西安市胸科医院治疗的18例耐多药结核病患者进行深入访谈，了解耐多药患者患病体验，并探索治疗中存在问题和解决方法。通过资料分析得出耐多药结核病患者患病体验包括4个主题：治疗经历曲折、负性情绪严重、心理压力过大、社会支持系统薄弱。其中，88．9％（16／18）的患者存在耐药检测延迟，83．3％（15／18）的患者存在不同程度的抑郁等负性情绪，几乎每例患者都因疾病治疗费用及日后的生活而困扰，并希望得到亲友及医务人员的支持。因此，在耐多药结核病患者治疗管理过程中，不仅要为患者提供良好的医疗服务，更需要提供深切的人文关怀和情感支持。

In order to understand the illness experience of the patients with multidrug-resistant tuberculosis （MDR-TB） and to explore the problems and solutions about the treatment, we gave an in-depth interview to each of the 18 MDR-TB cases who received treatment in Xi＇an Chest Hospital. The related information and data were collected and analyzed. The illness experience of the MDR-TB patients were summarized as below four points： com- plicated treatment experience, negative emotional reactions, psychological stress and weak social support system. Among 18 patients, 88. 9%（16/18） of the patients were delayed in being performed the drug susceptibility testing （DST） ; 83.3% （15/18） of the patients were in the different degrees of depression and other negative emotions; al- most all patients worried about their treatment costs and their future lives, and they hoped to get the support of the family members, friends and health workers. Therefore, during the treatment and management of the MDR-TB pa- tients, we should not only provide good medical services to the patients, but also provide them with humanistic care and emotional support.