摘要
本研究以“深度疾病”患者的叙事分析为方法,以中国本土社会学的“脸面”模型为框架,尝试从面子折损与获得的社交情境出发,探究以白化病为代表的这类“被看见”的病症,其患者从感知污名到污名内化为耻感的转化机制。研究发现,“月亮孩子之家”微信公众号的患者叙事呈现了“脸面”传导的三种效应:一致效应,家庭对“面子”的无视成为污名内化为耻感的重要“防线”;混合效应,白化病患者在获得社会支持后努力通过个人进取、为自己“挣脸”的方式以“回馈”帮助者、维护帮助者的“面子”,社会支持在一定程度上阻滞了病耻感的内化;异质效应,社会关系中的他人要求患者维护“面子”时,来自家庭与社会他者的双重压力使患者陷入习惯性自我怀疑与否定,污名转化为病耻感。在理论与方法层面,本研究尝试勾连中国本土面子理论与健康叙事的内容与结构分析;在应用层面,希望藉此唤起健康干预对患者因面子问题而陷入社交、失业等恶性循环困境的关照,亦探讨了研究对患者群体的意义、局限性以及可能进路。
Adopting the method of narrative analysis and the theoretical framework of“Face-Mianzi Model”,this study investigates the mechanism of how stigma is internalized and transformed into shame by albinos.Through the analysis of the life stories posted on the official WeChat account of the“Chinese Organization for Albinism”,three kinds of transmission effects of Face-Mianzi were found:the consistency effect,in which family members are brave enough to face the challenge of“mianzi-saving”,can prevent the stigma experienced by patients from internalizing into shame;the hybrid effect,in which patients strive for better performance after receiving support from others to save mianzi for themselves and their supporters,can effectively alleviate patients’shame;the controversy effect,when patients feel that significant others“lost mianzi”,can cause a feeling of“losing face”,with the result that stigma is internalized as shame in patients.Practical implications,research limitations,and future approaches are also discussed.
作者
宫贺
刘子聪
熊慧
林一洲
GONG He;LIU Zicong;XIONG Hui;LIN Yizhou(Research Center of Journalism and Social Development;School of Journalism and Communication,Renmin University of China;School of Journalism and Communication,Xiamen University)
出处
《国际新闻界》
CSSCI
北大核心
2023年第7期93-113,共21页
Chinese Journal of Journalism & Communication
基金
中国人民大学“双一流”建设马克思主义新闻观创新研究(项目编号:MXG202308)的阶段性成果
关键词
污名
耻感
脸面异质性
深度疾病
白化病
疾病叙事
stigma
shame
Face-Mianzi Model
deep illness
albinism
illness narrative
