University of Reading, UK.
City, University of London, UK.
Autism. 2021 Jul;25(5):1234-1245. doi: 10.1177/1362361320984895. Epub 2021 Jan 11.
Parent caregivers play an essential role in the lives of individuals on the autism spectrum. The demands of caregiving can have negative effects on the mental and physical wellbeing of parents. Different types of formal support have been developed to help parents to cope with caregiving; however, many parents struggle to access services due to limited availability and busy schedules. The Internet could offer parents more accessible and flexible support. We asked 17 parents what content they would like to include in an online resource. Parents told us about their experiences trying to access and use existing formal support and websites. They overwhelmingly supported the development of an online resource informed by their suggestions. Parents emphasised the need for easier access to information through educational components and direct access to healthcare professionals online. Parents also wanted help with finding existing services and reliable, locally relevant information. Parents stressed the need for a safe environment to meet and chat with other parents online. This research forms the first stage in the development process of an online health resource for parents.
家长在自闭症谱系个体的生活中扮演着重要的角色。照顾的需求可能会对家长的身心健康产生负面影响。已经开发出不同类型的正式支持来帮助家长应对照顾问题；然而，由于服务的可用性有限和日程繁忙，许多家长难以获得这些服务。互联网可以为家长提供更便捷和灵活的支持。我们询问了 17 位家长，他们希望在在线资源中包含哪些内容。家长们告诉我们他们在尝试访问和使用现有正式支持和网站时的经历。他们强烈支持根据他们的建议开发在线资源。家长们强调需要通过教育内容和在线直接获得医疗保健专业人员来更轻松地获取信息。家长们还希望在寻找现有服务和可靠的、本地相关信息方面得到帮助。家长们强调需要一个安全的环境，以便在线与其他家长见面和聊天。这项研究是为家长开发在线健康资源的开发过程的第一阶段。
