Strong evidence suggests that parents of children on the autism spectrum face increased stressors to their physical and mental wellbeing due to the demands of caregiving and paucity of support. The disparity between the services currently offered and unmet needs indicates that accessible and flexible support through online delivery is needed for parents. This study presents the ideas and perspectives collected from five focus groups of 17 parents of autistic children, on the optimal content and implementation strategy of an online intervention. Using thematic framework analysis, we derived themes under the categories: the need for online interventions; content and design; and implementation. Parents supported the development of a multicomponent online intervention which combines psychoeducation with peer-support and access to healthcare professionals.

Lay abstract

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.

中文翻译：

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最终用户对自闭症谱系儿童家长在线干预发展的看法

强有力的证据表明，由于需要照顾和缺乏支持，自闭症谱系儿童的父母面临着更大的身心健康压力。当前提供的服务与未满足的需求之间的差异表明，父母需要通过在线交付获得可访问和灵活的支持。本研究展示了从 17 位自闭症儿童家长的五个焦点小组收集的关于在线干预的最佳内容和实施策略的想法和观点。使用主题框架分析，我们得出以下类别的主题：在线干预的必要性；内容和设计；和实施。

摘要

父母照顾者在自闭症谱系个体的生活中发挥着重要作用。照料的要求会对父母的身心健康产生负面影响。已经开发了不同类型的正式支持来帮助父母应对照料问题；然而，由于有限的可用性和繁忙的日程安排，许多父母难以获得服务。互联网可以为父母提供更方便、更灵活的支持。我们询问了 17 位家长，他们希望在线资源中包含哪些内容。家长告诉我们他们尝试访问和使用现有正式支持和网站的经历。他们压倒性地支持根据他们的建议开发在线资源。家长强调需要通过教育组件和直接在线访问医疗保健专业人员来更轻松地获取信息。家长还需要帮助寻找现有服务和可靠的本地相关信息。家长们强调需要一个安全的环境来与其他家长在线会面和聊天。这项研究形成了家长在线健康资源开发过程的第一阶段。