罕见病儿童家庭福利资源供给体系的优化  

The Optimization of Provision System towards Families with Children Suffered from Rare Diseases

作　　者：纪文晓[1] 王宁 Ji Wenxiao;Wang Ning

机构地区：[1]河南师范大学青少年问题研究中心

出　　处：《青年研究》2023年第1期35-44,95,共11页Youth Studies

基　　金：河南省哲学社会科学规划项目“高风险家庭儿童脆弱性评估及保护模式构建实践研究”(2022BSH014);2021年河南省教育厅基础研究重大项目“社会工作在社会治理共同体建设中的角色和作用研究”(2021-JCZD-30)阶段性研究成果;河南省社会治理软科学研究基地、2019年河南省科技创新人才计划(2019-CX-015)的支持。

摘　　要：基于2019年“中国罕见病患者综合社会调查”相关数据和相关访谈资料,探讨罕见病儿童家庭福利资源供给体系的现状及问题。研究发现,罕见病儿童家庭普遍存在经济收入水平有限、医疗康复成本高效率低、照护时间无保障以及服务资源支持薄弱等问题,亟待国家提供福利支持。从“国家亲权”的视角探讨福利资源的生产、递送和接收体系,主要包括:降低罕见病儿童的诊疗和康复成本,提供经济保障;提高罕见病儿童的诊疗效率,提供医疗保障;对接罕见病儿童照护的相关政策,提供时间保障;提高部门和社会组织的协同能力,提供服务保障。Based on the relevant data from"The Comprehensive Social Survey towards Chinese Patients Suffered from Rare Disease"in 2019 and relevant interview data,this article tries to explore the status and existed problem of provision system towards families with children suffered from rare diseases.According to the findings,for the families with children suffered from rare diseases,they commonly face several problems,namely the economic income level is limited,the cost of medical rehabilitation is high while the efficiency is low,the caring time couldn't be guaranteed,the support from service resources is weak,etc.Hence,it's imperative for the state to provide corresponding welfare support.From the perspective of"parental authority of the state",this article aims to explore the production,transmission and receiving system of welfare resources.This provision mainly includes the fllowing several aspects:lowering the cost of diagnosis and treatment,the cost of rehabilitation regarding children suffering from rare diseases,providing economic security;enhancing the efficiency of diagnosis and treatment regarding children suffered from rare diseases,providing medical security;coordinating relevant policies of caring children suffered from rare diseases,providing time security;enhancing coordinating competence between different departments and social organizations,providing service security.

关 键 词：罕见病儿童家庭 福利资源 供给体系 国家亲权 

分 类 号：D632.1[政治法律—政治学] D669.5[政治法律—中外政治制度] R197.1[医药卫生—卫生事业管理]