社会支持理论视角下“柠檬宝宝”家庭困境的服务路径探析

Analysis on the Service Path of the Dilemma on Lemon Babies'Families in the Perspective of Social Support Theory

目前,“柠檬宝宝”(甲基丙二酸血症患儿)作为最为常见的一种罕见病群体,却未能得到世人足够的关注。笔者采用田野调查法,以H省内5例患儿家庭为研究对象,针对“柠檬宝宝”家庭现有社会支持的不足,提出搭建以政府为主体,以三社联动的正式支持、亲属、志愿组织的非正式支持为支点,三部分有效结合的社会支持网络,首创“社工+网络社群”的帮扶新思路,为“柠檬宝宝”家庭提供更加优质的支持服务。

Currently,“Lemon Babies”,children with MMA,one of the most common rare disease groups,has received little attention in the world.Adopting the method of field study,the author took five families with MMA children in H province as the research object.In view of lacking social support for these fami⁃lies,this paper proposes to build a social support network effectively combining three parts,including the government as the main body,and the formal support of the linkage of three social mechanisms and the in⁃formal support of relatives and voluntary organizations as the supporting point,which initiates the assistance new idea of“social workers plus network community”,providing more highquality services for lemon baby families.