代际团结视角下痉挛性脑瘫患儿父母的危机应对与家庭支持  

Crisis response and family support of parents of children with spastic cerebral palsy from the perspective of intergenerational solidarity

作　　者：张雪松 朱俞岚[2] 林怡[2] 闫鹏飞 ZHANG Xuesong;ZHU Yulan;Lin Yi;YAN Pengfei(School of Sociology and Political Science,Shanghai University,Shanghai 200444,China;Huashan Hospital,Fudan University,Shanghai 200040)

机构地区：[1]上海大学社会学院,上海200444 [2]复旦大学附属华山医院,上海200040

出　　处：《现代医院》2022年第12期1943-1947,1951,共6页Modern Hospitals

基　　金：上海市教委科研创新计划人文社科重大项目(2021-E00133);上海市医院协会医院管理研究基金青年课题(Q2021061);上海市残疾人联合会康复政策研究专项立项(2022ZC1012)。

摘　　要：目的了解不同家庭成员在面对痉挛性脑瘫患儿成长过程中的危机应对方式与代际支持模式。方法采用半结构式访谈法,从代际团结视角对19名来自上海某三甲医院康复治疗科中脑瘫患儿的父母进行访谈调查。结果在应对方式上,患儿父亲承担了更多的经济压力,而母亲则更多的是照料压力和精神压力,绝大部分父亲选择辞职单干或身兼数职,超过半数的母亲选择辞掉工作成为全职妈妈;在家庭支持上,更多的家庭选择三代成员形成主干家庭,代际之间提供了照料行动、金钱资助和情感互惠。结论患儿父母经历了从消极到积极的过程,形成了“男性养家、女性顾家”的传统分工模式;而在强韧的家庭纽带下,代际间的照料、经济和情感支持是家庭走出危机的关键因素。Objective To understand the crisis coping style and intergenerational support model of different family members in the growth of children with spastic cerebral palsy.Methods In this study,19 parents of children with cerebral palsy in the rehabilitation department of a third class hospital in Shanghai were interviewed from the perspective of intergenerational solidarity.Results In terms of coping style,the father of the child bears more economic pressure,while the mother is more care pressure and mental pressure.Most fathers choose to resign to work alone or part-time,and more than half of the mothers choose to quit their jobs to become full-time mothers;In terms of family support,more families choose three generations of members to form a backbone family,and intergenerational care actions,financial assistance and emotional reciprocity are provided.Conclusion The parents of children have experienced the process from negative to positive,forming the traditional division of labor mode of“men supporting the family and women caring for the family”;Under the strong family ties,intergenerational care,economic and emotional support are the key factors for families to get out of the crisis.

关 键 词：痉挛性脑瘫 代际团结 全职妈妈 情感依赖 

分 类 号：R741[医药卫生—神经病学与精神病学] C91[医药卫生—临床医学]