孤独症患者的生命历程转折点与动态需求——基于20位上海市孤独症患者家长的质性研究  

Turning Points and Dynamic Needs in Life Course of Autism Community:A Qualitative Study Based on 20 Parents of Individuals with Autism in Shanghai

作　　者：陈蓓丽[1] 张之初 石渡丹尔 蔡屹 Chen Beili;Zhang Zhichu;Ishiwata Tanni;Cai Yi

机构地区：[1]华东理工大学社会与公共管理学院 [2]复旦大学

出　　处：《都市社会工作研究》2024年第1期52-73,233-234,共24页Research on Urban Social Work

基　　金：上海市曹鹏公益基金会“孤独症儿童家庭关爱服务及政策研究”项目资助

摘　　要：以往对孤独症患者的需求研究大多只关注某一阶段内的情况,且较少使用需求理论对需求进行全面的分析。本研究在生命历程视角下聚焦转折点,以ERG理论为工具剖析孤独症患者生存、关系和成长三个方面的需求,通过对上海市内20位孤独症患者家长的深度访谈收集资料,利用主题分析法提炼有关“孤独症患者生命历程及需求”的主题。研究发现,孤独症患者的需求在生命成长的时间线上呈现显著的阶段性与变化性,并根据动态变化构建出整合性的需求模型。Most of the previous research on the needs of autism groups only focused on the situation within a certain stage,and rarely used needs theory to conduct a comprehensive analysis of needs.This study focuses on turning points from a life course perspective,uses ERG theory as a tool to analyze the needs of the autistic group in three aspects:Existence,relatedness and growth.It collects data through in-depth interviews with 20 parents of the autistic group in Shanghai,and uses Thematic analysis was used to extract themes related to the“life course and needs of autism groups”.The study reveals that the needs of autism groups exhibit significant stages and variations along the timeline of life development and constructs an integrated demand model based on these dynamic changes.

关 键 词：生命历程 孤独症 转折点 ERG理论 

分 类 号：R749.94[医药卫生—神经病学与精神病学]