倾听患者的声音:中国2型糖尿病患者疾病管理访谈分析  

Listening to Patients’ Voices: An Interview Analysis on Disease Management of Type 2 Diabetes Patients in China

作　　者：李芳[1] 郭莉萍[1] Ulla Cornor 黄芳[1] 李俊[1] 刘晶晶[1] 牛颖[1] 乔玉玲[1] 吴朝霞[1] 邹漫云[1] LI Fang;GUO Liping;Ulla Cornor;HUANG Fang;LI Jun;LIU Jingjing;NIU Ying;QIAO Yuling;WU Chaoxia;ZOU Manyun(Department of Language and Culture in Medicine,School of Health Humanities,Peking University,Beijing 100191,China;Indiana Center for Intercultural Communication,Indiana University Purdue University in Indianapolis)

机构地区：[1]北京大学医学人文学院医学语言文化系,北京100191 [2]印第安纳大学、普渡大学印第安纳波利斯联合分校跨文化交流中心

出　　处：《中国医学伦理学》2019年第12期1553-1561,共9页Chinese Medical Ethics

基　　金：北京高等学校青年英才计划项目(YETP0067)

摘　　要：目的了解中国2型糖尿病患者掌握的糖尿病相关知识、获取信息的渠道,并呈现患者管理糖尿病的方法、效果和经验。方法选取38例中国2型糖尿病患者,对其进行一对一半结构式深入访谈,鼓励患者展开疾病叙事。结果①患者首次确诊糖尿病呈现出四种情形和三种心理回应模式;②患者对糖尿病的病症成因尚缺乏了解,但对治疗方法较熟悉;获悉途径从单一到多元渠道分布不均;③多数患者采纳了“服药、运动、饮食”三种基本的管理模式,但对疾病管理实施和效果尚不满意。结论糖尿病改变了患者的生活,疾病管理的本质是配合药物治疗、调整生活方式;患者有强烈的治愈疾病的愿望,但需得到当前社会环境、医疗水平、医患交流以及自我疾病和情绪管理等社会、机构和个人层面的有机配合,从而实现对糖尿病的有效管理和控制。Objective:To understand the diabetes related knowledge and access to health information of type 2 diabetes patients in China,and to present the methods,effects and experiences of patients’management of diabetes.Methods:38 Chinese patients with type 2 diabetes were selected,and a half structured in-depth interview was conducted to encourage patients to narrate the disease.Results:First of all,Patients’first-time diagnosis with diabetes covered four situations and three modes of psychological reflection.Secondly,Patients presented insufficient knowledge in defining diabetes but relatively sufficient knowledge on diabetes control and management measures;the distribution of the ways of knowing from single to multiple channels is uneven.At last,most of the patients adopt three basic management modes of“taking medicine,exercising and eating”,but they were rarely satisfied with the implementation and effect of disease management.Conclusion:Diabetes has changed the life of patients.The essence of disease management is to coordinate with drug treatment and adjust life style.Patients have a strong desire to cure the disease but are in need of support at social,institutional and personal levels so as to achieve effective management and control of diabetes.

关 键 词：2型糖尿病 疾病管理 叙事医学 医患交流 

分 类 号：R197.32[医药卫生—卫生事业管理]