摘要
以北京市Z癌症患者病友组织为例,通过分析癌症患者的疾病叙事,阐述病友组织中病友叙事共同体的构建与病友情感支持的运行机理。研究发现,第一,在病友组织群体抗癌理念的倡导下,患癌共性的身份认同和组织活动的参与频率是癌症患者成为癌症病友、建立叙事连接与形成情感关系的源头。第二,“话疗”的集体叙事活动是构建病友叙事共同体、开启病友互助实践的重要机制。第三,情感支持是病友互助的主要实践形式,叙事与情感的契合有助于强化病友叙事共同体,拓展病友组织的社会团结功能,从而形成病友与病友组织间的双向情感支持。故而,病友之间的叙事连接与叙事共同体的倡议至关重要,不仅在增强患者的社会心理支持、重新适应社会生活、增加全人疗愈等层面上大有裨益,同时亦有利于整个社会营造更加良好的癌症叙事生态,激励病友组织持续协助癌症患者克服生命困境、提高生存质量。
Taking the Z Cancer Patient Organization in Beijing as an example,by analyzing the disease narratives of cancer patients,this paper elucidated the construction of a patient narrative community and the operation mechanism of patient emotional support in the patient organization.This study found that firstly,under the advocacy of the group’s anti-cancer philosophy in the patient organization,the shared identity of suffering from cancer and the frequency of participation in organizational activities were the sources of cancer patients becoming cancer friends,establishing narrative connections,and forming emotional relationships.Secondly,the collective narrative activities of“talk therapy”were important mechanisms for constructing a patient narrative community and initiating mutual assistance practices among patients.Thirdly,emotional support was the main practice form of mutual assistance among patients,as well as the alignment of narratives and emotions helped to strengthen the patient narrative community and expand the social solidarity function of the patient organization,thereby forming mutual emotional support between patients and the patient organization.Therefore,the narrative connections and the advocacy of narrative community among patients are crucial,which not only benefits patients in enhancing their social and psychological support,re-adapting to social life,and increasing holistic healing,but also helps to create a better cancer narrative ecology for the whole society,motivating patient organizations to continuously assist cancer patients in overcoming living dilemmas and improving their quality of life.
作者
曾繁萍
ZENG Fanping(School of Health,Fujian Medical University,Fuzhou 350122,China)
出处
《中国医学伦理学》
北大核心
2025年第6期687-694,共8页
Chinese Medical Ethics
基金
福建省社会科学基金项目“主动健康视域下福建省老年癌症患者养老照护的人类学研究”(FJ2024C159)
福建医科大学启航基金一般项目“主动健康视角下老年癌症幸存者的互助养老研究”(2022QH1013)
福建医科大学高层次人才启动项目“癌症防控的社会技术史研究”(YJ230011)。
关键词
病友组织
疾病叙事
叙事共同体
叙事连接
情感支持
patient organization
disease narrative
narrative community
narrative connection
emotional support
