微板在提高智障儿童及其家庭生活质量方面的作用

IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES
Susan Taylor, Jennifer David, Angela Dew, Joanne Watson
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引用次数: 0

摘要

残疾支持系统在为残疾儿童家庭提供支持时,并未始终采用以家庭为中心的做法。这些家庭经历了结构性障碍和人际交往障碍,这些障碍不仅对他们孩子的生活质量产生了负面影响,也对家庭生活质量(FQOL)产生了负面影响。国际智障科学研究协会(IASSID)定义的八个生活质量领域在澳大利亚微板协会(Microboards Australia)为儿童和青少年开发的以家庭为中心的支持模式中得到了体现。Microboards for Children [MB4C]模式反映了以家庭为中心的最佳实践,其所依据的原则与公认的 FQOL 领域(如家庭关系、来自他人和残疾相关服务机构的支持以及休闲和生活乐趣)完美结合。MB4C 模式旨在增强家庭的知识、技能、信心和幸福感,以支持他们与孩子一起建立一个积极的、与社会联系紧密的、幸福的未来。该模式包括一个由正式和非正式支持组成的结构化网络,不仅能增强孩子或年轻人的人际关系、社会网络和社区融入,还能使父母和兄弟姐妹获得教育、就业和享受社区生活--这些都是 FQOL 的指标。在本文中,我们将探讨 MB4C 政策和实践的这些特点如何与以家庭为中心的实践原则和 FQOL 领域相一致。我们认为, MB4C 模式提供了一个范例,说明以家庭为中心的整体残疾服务系统如何与残疾家庭合作,从而提高 FQOL。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The role of microboards in enhancing quality of life for children with intellectual disability and their families

Disability support systems have not consistently used family-centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family-centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability-related services, and leisure and enjoyment of life. The MB4C model aims to enhance families’ knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family-centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family-centered disability service system that works in partnership with families with disability.

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来源期刊
CiteScore
4.10
自引率
5.90%
发文量
38
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