上海孤独症家庭生活困境及互助组织研究

【作者】 潘洁；

【导师】 刘长喜；

【作者基本信息】 上海财经大学 ， 社会学， 2022， 硕士

【摘要】 党的二十大报告明确指出:“完善残疾人社会保障制度和关爱服务体系,促进残疾人事业全面发展。”截至2021年底,中国孤独症患者规模达1300万,这些患者及其家庭因病长期面对照护、经济、社交等多重困境。理论界和政策面虽已关注孤独症群体的困境,并开展了医疗、教育、社会保障等多角度研究,但如何激发如此规模弱势群体自身潜力,尤其是提升互助能力同样值得研究。本文着眼于上海孤独症家庭,展开对孤独症家庭生活困境与互助组织进行探讨,并提出了对于完善孤独症家庭互助组织的对策建议。本文通过对上海市311个孤独症家庭的调研和孤独症家庭互助组织CA服务中心的案例研究,发现上海孤独症家庭主要面临经济困境、幸福感缺失、社交缺失、家长身故后患者照护缺失等困境及社会支持在微观层面上的支持难点。孤独症家庭互助组织存在内受家庭条件限制,外缺物质条件支持,社会关注度不足及专业资源匮乏等发展困境。研究进一步表明,社会支持理论中主效应模型在孤独症家庭受助方面受到挑战。本研究结论表明,孤独症家庭互助组织有利于缓解部分孤独症家庭的生活困境,是对孤独症家庭社会支持的补充。鉴于此,通过国内外经验借鉴,从以下三个方面提出了孤独症互助组织改进的建议:第一,落实孤独症家庭需求显性化;第二,建设精准匹配的互助网络;第三,搭建线上-线下一体化的数字化服务平台。更多还原

【Abstract】 The report of the 20 th CPC National Congress clearly pointed out: "We will improve the social security system and care service system for the disabled,and promote the all-round development of the cause for the disabled." By the end of 2021,the number of autistic patients in China will reach 13 million,and these patients and their families will face multiple difficulties such as care,economy and social life for a long time due to illness.Although theorists and policy makers have paid attention to the plight of autistic groups and carried out research on medical,education,social security and other aspects,it is also worth studying how to stimulate the potential of vulnerable groups on such a scale,especially how to improve mutual assistance ability.This paper focuses on autistic families in Shanghai,discusses the difficulties of autistic families’ life and mutual aid organizations,and puts forward countermeasures and suggestions for improving autistic family mutual aid organizations.Based on the survey of 311 autistic families in Shanghai,this paper concludes that autistic families in Shanghai are mainly faced with economic difficulties,lack of happiness,lack of social interaction,lack of patient care after the death of their parents,and difficulties in social support at the micro level.Through case law,taking the typical autistic family mutual aid organization CA service center as an example,this paper explores the current development of the autistic family mutual aid organization,and finds that the autistic family mutual aid organization has development difficulties such as internal limitations of family conditions,external lack of material support,insufficient social attention and lack of professional resources.The research further shows that the main effect model in the social support theory is challenged in the aspect of autistic family assistance.The conclusion of this study shows that the autistic family mutual aid organization is beneficial to alleviate the life predicament of some autistic families and is a supplement to the social support of autistic families.In view of this,based on the experience at home and abroad,this paper puts forward suggestions for the improvement of autistic mutual aid organizations from the following three aspects:first,implement the explicit needs of autistic families;Second,build a mutual aid network with accurate matching;Third,build an online offline integrated digital service platform.更多还原