The ethnographic method of virtual communities and its application: a case study of the survival dilemma of the ALS community
虚拟社群的网络民族志方法及运用——以渐冻症群体的生存困境为例

摘要

随着互联网技术的普及，网络平台逐渐成为特殊群体表达诉求、建立社会支持的重要场域。渐冻症（ALS）群体作为边缘化的弱势群体是社会工作理应关注和帮助的对象之一。研究发现，渐冻症群体存在三重困境：在心理层面，患者普遍经历从情绪失控到价值消解的心理链条；在家庭层面，长期照护导致家庭经济压力和家庭角色转换的困境；在社会层面，公众认知程度低和政策不完善加剧了群体边缘化。因此，本文采用网络民族志的方法，通过在线参与观察、在线访谈与在线互动来发现渐冻症群体的生存困境，从社会工作的角度出发探讨解决策略。

Abstract

With the popularization of Internet technology, online platforms have gradually become an important field for special groups to express their demands and establish social support. The ALS group, as a marginalized and vulnerable group, is one of the objects that social work should pay attention to and assist. Research has found that the ALS group faces three major predicaments: At the psychological level, patients generally experience a psychological chain from emotional loss of control to value dissolution; At the family level, long-term care leads to the predicament of family economic pressure and family role transformation. At the social level, low public awareness and imperfect policies have exacerbated the marginalization of groups. Therefore, this paper adopts the method of online ethnography to discover the survival predicament of the ALS group through online participation observation, online interviews and online interaction, and explores the solution strategies from the perspective of social work.