农村脑瘫儿童社会支持状况调查研究

On the Social Support for Rural Children with Cerebral Palsy

农村脑瘫儿童是社会中的弱势群体,社会支持对于脑瘫儿童的康复和发展具有重要意义。目前,我国农村脑瘫儿童的社会支持系统主要由家庭、社区、政府、学校和非政府组织构成,其中,家庭支持是农村脑瘫儿童获得社会支持的主要来源,其他方面的支持十分薄弱。过度依赖家庭的社会支持给脑瘫儿童的家庭带来沉重经济与精神负担的同时,也不利于脑瘫儿童的发展和社会化。现有的社会社会支持系统还面临内部主体缺乏合作、社会支持的主体与客体之间互动不足、家庭以外支持的短暂性和间断性、注重康复支持而忽视情感支持和脑瘫儿童的潜能开发、不能满足脑瘫儿童不同成长阶段对社会支持的需求等问题,而父母的态度是影响脑瘫儿童获得社会支持数量和质量的决定性因素。建议:构建以家庭为中心、政府主导下由社区协调社会力量辅助家庭的社会支持网络,以满足脑瘫儿童成长不同阶段对社会支持的不同需求。

Rural children with cerebral palsy are a vulnerable group in society,and social support is very important for their rehabilitation and development. The current social support system for these children involves their families,the community,the government,their schools and non-governmental organizations,with the family support serving as the main source of social support. However,over-reliance on the family support gives great economic and mental burdens to these children＇s families,and is not beneficial to their development and socialization. In addition,the current social support system has such disadvantages as lack of cooperation between the subjects within the social support system,the insufficient interactions between the social support suppliers and accepters,the short-term and discontinuous support outside these children＇s families,the emphasis on rehabilitation but neglect of emotional support and potential development,and the inability to meet these children＇s needs for social support in different stages of their growth.In fact,these children＇s parents＇ attitudes are decisive factors influencing the social support of them. To meet these children＇s needs for social support,it is a must to build a family-centered,government-led,and community-coordinated social support network and thus bring together all forces of the entire society.