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

Family Quality of Life: Experiences and Challenges in Developing Family Support through Best Research, Practice, and Policy

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。

Family quality of life has become an important international issue as parents who have children with intellectual and developmental disabilities take on a wide range of responsibilities for their children over the lifespan, a situation that aspires to community inclusion. Because of this, parents and other primary caters increasingly become knowledgeable about needs of the child or children with disabilities. They require to be involved in the decision-making processes not just about family and local community life, but about education, employment or allied work, as well as the health interventions that are now a possibility. The present article explores these developments using results from many countries, which underline major themes, concerns and action requirements to make more effective and normal lifestyles for these families and their child with disability. Many concerns are common amongst countries, yet all indicate a wide range of variability in terms of child and family needs, which require an examination of services and how they could be designed in collaboration with families. This article covers a series of studies into some of the maLor developments in assessment and identification of critical issues and explores some of the growing altempts to meet family needs as well as the needs of the child with disability. These needs are interlwined and can be resolved on an individualized basis. The article outlines practical suggestions based on research in the field. This requires changes to policy and new directions for research.