The place and role of the civil sector in the inclusive education and development of children with Williams syndrome (also) through music

IF 0.4 4区 管理学 Q4 PUBLIC ADMINISTRATION
Anita Tóth-Bakos, Agáta Csehiová
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引用次数: 0

Abstract

Williams syndrome (WS) is an extremely rare genetic disorder. Approximately 1 in every 20 000 people has WS. Because of this, most people have never even met a child with WS. WS occupies a unique place among genetic disorders because of the fact that, in addition to a unique mix of difficulties, symptoms and abnormalities, some of their abilities and performance in certain intellectual areas are adequate or average, and in many cases above average. Relatively high level of ability includes good communication skills, outstanding verbal skills, sociability and good musical abilities with highly sensitive hearing, good musical pitch and musicality, and a very positive attitude towards music. As is typically the case for rare disorders, the most important pillar of their advocacy is the civil sphere, where NGOs and foundations support WS children and families. The great affinity and positive relationship with music justifies that a prominent part of development and inclusion are specifically music-related activities, music therapy activities. The main objective of our research is to map NGOs in Europe and beyond whose activities focus on WS patients and their families. The basis for mapping the organizations is to summarize their aims, activities and achievements and to highlight their music-related activities in line with the mission of inclusion. Our main objective is to show that the development and rehabilitation of WS patients through music and musical activities is a significant and integral part of their care within the organized framework and possibilities of the civil sector.
民间部门在通过音乐对威廉姆斯综合症儿童进行全纳教育和发展方面的地位和作用
威廉姆斯综合症(WS)是一种极其罕见的遗传性疾病。大约每 2 万人中就有 1 人患有 WS。正因为如此,大多数人甚至从未见过 WS 患儿。威廉姆斯综合症在遗传疾病中占有独特的地位,因为除了各种独特的困难、症状和异常之外,他们在某些智力领域的能力和表现是足够的或平均的,在许多情况下甚至高于平均水平。相对较高的能力水平包括良好的沟通能力、出色的语言表达能力、社交能力和良好的音乐能力,包括高度敏感的听觉、良好的音准和乐感,以及对音乐非常积极的态度。与罕见疾病的典型情况一样,他们最重要的宣传支柱是民间领域,非政府组织和基金会为 WS 儿童和家庭提供支持。他们与音乐的亲和力和积极关系证明,与音乐有关的活动、音乐治疗活动是发展和融入的一个重要部分。我们研究的主要目的是绘制欧洲及其他地区以 WS 患者及其家庭为活动重点的非政府组织的地图。绘制这些组织地图的基础是总结其目标、活动和成就,并强调其与音乐相关的活动符合全纳使命。我们的主要目标是表明,通过音乐和音乐活动促进 WS 患者的发展和康复,是在民间部门的组织框架和可能性范围内对他们进行护理的重要组成部分。
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来源期刊
Civil Szemle
Civil Szemle PUBLIC ADMINISTRATION-
自引率
75.00%
发文量
3
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