家庭生活质量:通过广泛调研、实践与政策发展家庭支持的经验与挑战

发布时间：2019-07-13 21:36

【摘要】：家庭生活质量已经成为一个重要的国际性议题。由于智力与发展性障碍儿童的父母终其一生都要对子女承担着广泛的责任,这种情况迫切需要社会介入。由于父母和主要照护者更加了解残疾儿童的需求,他们要求参与到政策决策过程中,不仅包括家庭和地区事务的决策,也包括教育、就业或相关工作以及健康干预等事项的决策。本文使用多国研究成果,重点关注重大主题、社会关切和对行动的要求,以推动残疾儿童及其家庭成员过上更有质量的正常生活。在提高生活质量方面,各个国家所关注的问题具有一定的共性,不过,涉及残疾儿童和家庭的需求时却呈现出显著的差异,这要求对服务项目进行细致分析,研究如何设计出与家庭需求相适应的服务项目。本文涵盖了一系列的研究,对重要的发展变化进行评估,明确了存在的关键问题,对于试图满足家庭和残疾儿童需求而进行的各种尝试也进行了评估和探讨。尽管家庭和儿童的各种需求交织在一起,但应能在提供个性化服务的基础上加以解决。在开展研究的基础上,本文提出了切实可行的建议。对于发展家庭支持计划,需要政策的改变和找到新的研究方向。
[Abstract]:The quality of family life has become an important international issue. Because the parents of children with mental and developmental disabilities have a wide range of responsibilities to their children all their lives, this situation urgently needs social intervention. As parents and key caregivers are more aware of the needs of children with disabilities, they require participation in policy decisions, including not only family and regional decisions, but also education, employment or related work and health interventions. This paper uses the results of multinational research to focus on major themes, social concerns and demands for action to promote a better quality of normal life for children with disabilities and their family members. In improving the quality of life, the issues concerned by each country have certain commonalities, but there are significant differences in the needs of children with disabilities and families, which requires a detailed analysis of the service items and the study of how to design services that meet the needs of the family. This paper covers a series of studies, evaluates important developments, identifies key problems, and evaluates and discusses various attempts to meet the needs of families and children with disabilities. Although the needs of families and children are intertwined, they should be able to be addressed on the basis of personalized services. On the basis of carrying out the research, this paper puts forward some feasible suggestions. For the development of family support programs, policy changes and new research directions are needed.
【作者单位】：加拿大维多利亚大学;北京大学人口研究所;北京大学残疾人事业发展研究中心;
【分类号】：C913.69

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