智力障碍儿童家庭照顾者的社会支持状况研究

Study on Social Support Conditions of Family Caregivers for Intellectually Disabled Children

智力障碍儿童家庭照顾者的社会支持状况不仅关系到照顾者本人的生活质量,还对智障儿童的生存和发展具有重要影响。本研究采用定性研究方法,通过对13名智障儿童家庭照顾者的半结构式访谈和参与式观察来了解研究对象的社会支持状况。研究发现,智障儿童的家庭照顾者在照顾过程中主要获得了工具性、情感性、信息性、陪伴性等四种类型的社会支持,这些支持主要来自照顾者的非正式支持主体,政府等正式主体提供的支持非常有限。同时照顾者对这些支持的需求呈现出动态变化的特征。此外,照顾者的社会支持系统存在着支持程度不高、支持主体不足、支持形式片面以及支持灵活性差等不足。基于此,本文提出了健全照顾者的社会支持体系、创新社会支持的形式以及为照顾者提供动态化和灵活性的支持等建议。

The social support conditions of family caregivers for intellectually disabled children is not only related to the quality of life of the caregivers themselves,but also has an important impact on the survival and development of intellectually disabled children. This study adopted a qualitative research approach to explore the social support conditions of the participants. Thirteen family caregivers of intellectually disabled children were recruited. Semi-structured interview and participation observation were used to understand their social support conditions. Through the study,we found that family caregivers of intellectually disabled children mainly obtained four types of social support,including instrumental support,emotional support,informational support and social companionship support. The providers of the these support comprises formal and informal networks,and mainly comes from their informal ties,rarely from formal ties such as the government. Meanwhile,caregivers＇ demands for these supports show a dynamic process as the situation changes. And there are some limitations on the social support,such as the low level of support,the lack of supportive subjects,the one-sided support form and poor flexibility in support. Based on the findings,this paper puts forward four proposals,which includes optimizing the caregivers＇ social support system,innovating the forms of social support and providing dynamic and flexible support for family caregivers.