【作者】 余佳；

【导师】 何云开；

【作者基本信息】 华东师范大学 ， 新闻与传播（专业学位）， 2023， 硕士

【副题名】以微博、微信中的玫瑰痤疮患者社区为例

【摘要】 在线患者社区日渐成为患者获取健康信息的重要渠道。从实践来看,非组织化的在线患者社区占据多数,但专门研究尚不多见,前人研究在社区实践和研究方法上亟待更新。本文以玫瑰痤疮患者跨微博、微信的在线患者社区为研究对象,采用参与式观察、半结构化访谈和扎根理论相结合的方法,综合社会心理、社会交换等视角来考察:非组织化在线患者社区为提供有效的社会支持,在宏观及微观层面经历了哪些过程,产生了哪些支持模式,其社会支持存在哪些局限和改进方向。研究发现,玫瑰痤疮患者社区的社会支持经历了宏观层面的支持性内容互动和微观层面基于心理距离和成本收益关系的社会交换。从宏观视角看,社会支持供给是在社会支持来源、社会支持外延的外部供给和社会支持需求的内部驱动下形成的。从微观视角看,不同类型的支持者通过公开平台与私密社群的联动搭建患者社区,最后在心理距离和社会支持成本收益两重机制影响下进行社会支持交换。支持者与被支持者基于个体异质性资源,借助策略性符号系统等平台基础设施,形成了平等互惠模式、公平交易模式、权威馈赠模式三类社会支持模式。各类模式围绕不同的交换原则、沟通策略、补充机制相互协作及限制,促进社会支持的传递、延续和规范,让这一从公开平台步入私密社群的定向跨网互动得以存续。通过以上分析,笔者发现能动的个体成员是连接在线患者社区社会支持各研究视角与议题的桥梁。个体成员凭借其能动性与自我支持介入社区支持性内容互动及社会支持模式运作,结合本文提出的支持性内容互动模型和社会支持模式分类方法,可以从患者视角提供社区健康发展、社会支持资源高效配置的切实建议。玫瑰痤疮患者社区的社会支持在延续性、可靠性和开放性上存在不足,后续应当从社区内外两部分改进:支持者协作建立社区自助手册,完善患者能力建设;被支持者应当充分利用各种沟通策略、交换原则,重视心理回馈和降低支持者执行成本;政府着力丰富医患沟通渠道,并打击社区失范行为;平台加强心理回馈展示、支持者类型标识与信息审核,共同推进社会支持的规范化、透明化。更多还原

【Abstract】 Online patient communities are increasingly becoming an important channel for patients to access health information.In terms of practice,unorganized online patient communities occupy the majority,but dedicated research is rare,and previous studies need to be updated in terms of community practices and research methods.In this paper,we use a combination of participant observation,semi-structured interviews,and rooting theory to examine what processes unorganized online patient communities have undergone at the macro and micro levels to provide effective social support,what support models have emerged,and what limitations exist in their social support and directions for improvement.The study found that social support in the community of rosacea patients experienced supportive content interactions at the macro level and social exchanges based on psychological distance and cost-benefit relationships at the micro level.From a macro perspective,social support supply is driven by the external supply of social support sources,social support extensions,and internal demand for social support.From the micro perspective,different types of supporters build patient communities through the linkage of public platforms and private communities,and finally social support is exchanged under the influence of two mechanisms of psychological distance and social support cost-benefit.Based on individual heterogeneous resources,supporters and supported have formed three types of social support models,such as equal reciprocity model,fair trade model,and authority gift model,with the help of platform infrastructure such as strategic symbolic system.These models collaborate and limit each other around different exchange principles,communication strategies,and complementary mechanisms to facilitate the transmission,continuation,and regulation of social support,allowing the survival of this directed cross-network interaction from public platforms into private communities.Through the above analysis,I found that the dynamic individual members are the bridge that connects the various research perspectives and issues of social support in online patient communities.The individual members,by virtue of their dynamism,intervene in the operation of supportive content interaction and social support models in the community.Combined with the supportive content interaction model and the classification of social support models proposed in this paper,they can provide practical suggestions for the healthy development of the community and the efficient allocation of social support resources from the patient’s perspective.Social support in the community of rosacea patients is deficient in continuity,reliability and openness,and should be subsequently improved from both inside and outside the community: supporters should collaborate to establish a community self-help manual and improve patient capacity building;the supported should make full use of various communication strategies and exchange principles,pay attention to psychological feedback and reduce supporters’ implementation costs;the government should focus on enriching doctor-patient communication channels and cracking down on community misconduct;and the platform should strengthen psychological feedback display,supporter type identification and information review,and jointly promote the standardization and transparency of social support.更多还原