慢性病（肌萎缩侧索硬化症）中的患病经历

Illness experience in a chronic disease--ALS.

作者信息

Cobb A K, Hamera E

出版信息

Soc Sci Med. 1986;23(7):641-50. doi: 10.1016/0277-9536(86)90111-5.

Abstract

The representative case study method was used in a 1-year longitudinal study of two individuals with a chronic, degenerative, terminal neurological disease, ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease). Participants were interviewed in their homes every 2 months to examine the effects of the illness on relationships with family, friends and the health care system. Changing ideas regarding causation, the use and evaluation of various therapies, use of illness role models, spiritual changes and symptom experience were also explored. Kleinman's concept of explanatory models guides the analysis of the data, although we argue for a greater emphasis on evaluation of therapies within this model.

摘要

在一项针对两名患有慢性、退行性、终末期神经疾病——肌萎缩侧索硬化症（ALS，又称卢伽雷氏病）患者的为期一年的纵向研究中，采用了代表性案例研究方法。每两个月在参与者家中对其进行访谈，以考察疾病对其与家人、朋友及医疗保健系统关系的影响。还探讨了关于病因、各种疗法的使用与评估、疾病榜样的运用、精神变化及症状体验等观念的转变。尽管我们主张在该模型中更加强调对疗法的评估，但克莱曼的解释模型概念指导了数据分析。