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满足卡塔尔自闭症成年人的需求:利益相关者对服务差距和未来规划重点的看法。

Meeting the needs of autistic adults in Qatar: Stakeholder perspectives on gaps in services and priorities for future programming.

机构信息

Children's National Hospital, USA.

World Innovation Summit for Health, Qatar.

出版信息

Autism. 2022 Jan;26(1):88-100. doi: 10.1177/13623613211020623. Epub 2021 Jun 6.

Abstract

Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

摘要

卡塔尔正在扩大为自闭症患者提供的服务,但这些服务主要集中在诊断和治疗幼儿方面。由于卡塔尔的自闭症患者提供者不足,自闭症青年参与社区的机会很少,因此越来越多的自闭症青少年和年轻人在过渡到成年期时存在未满足的需求。这项研究的目的是对卡塔尔的成年自闭症青年及其家庭进行需求评估,以便为成人暂托护理和支持中心的发展提供信息。暂托护理是一项为家庭提供缓解压力和时间的服务,让他们有时间参与那些在残疾亲人陪伴时难以进行的活动。这项研究的目的是利用家庭和利益相关者的意见来确定为卡塔尔的自闭症青年提供暂托护理的需求和偏好。该项目是由卡塔尔的一个当地研究团队和一个专门研究自闭症的美国临床研究团队共同进行的。利益相关者,包括自闭症患者的父母和与自闭症患者合作的提供者,完成了调查并参加了焦点小组。卡塔尔的家庭和提供者非常有兴趣增加对自闭症青年的服务,以提高生活质量,但他们希望确保服务提供者是可靠和值得信赖的。这项研究的结果可能会极大地改善卡塔尔自闭症成年人的生活。

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