Olga Tennison Autism Research Centre, La Trobe University, Bundoora, Victoria, Australia.
PLoS One. 2023 May 19;18(5):e0285578. doi: 10.1371/journal.pone.0285578. eCollection 2023.
Early research indicates that autistic burnout is a chronic, debilitating condition experienced by many autistic people across the lifespan that can have severe consequences for their mental health, wellbeing, and quality of life. To date, studies have focused on the lived experiences of autistic adults, and findings suggest that a lack of support, understanding, and acceptance by others can contribute to the risk of autistic burnout. The study outlined in this protocol will investigate how autistic people with and without experience of autistic burnout, their families, friends, healthcare professionals and non-autistic people understand the construct of autistic burnout to identify commonalities and gaps in knowledge.
Q methodology will be used to investigate participants' subjective understandings of autistic burnout. Q methodology is a mixed-methods design that is well-suited to exploratory research and can elucidate a holistic and comprehensive representation of multiple perspectives about a topic. Participants will complete a card sorting activity to rank how strongly they agree or disagree with a set of statements about autistic burnout and participate in a semi-structured interview to discuss their responses. A first-order factor analysis will be conducted for each participant group, followed by second-order factor analysis to compare the groups' viewpoints. The interview data will provide additional insights into the factors.
Q methodology has not previously been used to examine autistic and non-autistic people's perspectives about autistic burnout. Projected study outcomes include enhanced understanding of the characteristics, risks, and protective factors of autistic burnout. The findings will have practical implications for improving detection of autistic burnout and identifying strategies to support autistic adults with prevention and recovery. The results may also inform the development of a screening protocol and identify potential avenues for future research.
早期研究表明，自闭症倦怠是一种终生困扰许多自闭症患者的慢性、使人虚弱的状况，可能对他们的心理健康、幸福感和生活质量产生严重影响。迄今为止，研究集中在自闭症成年人的生活经历上，研究结果表明，缺乏他人的支持、理解和接受可能会增加自闭症倦怠的风险。本研究方案中概述的研究将调查有和没有自闭症倦怠经历的自闭症患者、他们的家人、朋友、医疗保健专业人员和非自闭症人士如何理解自闭症倦怠的概念，以确定知识的共同点和差距。
Q 方法论将用于调查参与者对自闭症倦怠的主观理解。Q 方法论是一种混合方法设计，非常适合探索性研究，可以阐明关于一个主题的多种观点的整体和全面的代表性。参与者将完成一项卡片分类活动，对一组关于自闭症倦怠的陈述进行排序，以表明他们的同意或不同意程度，并参加半结构化访谈以讨论他们的回答。将对每个参与者群体进行一阶因素分析，然后进行二阶因素分析以比较群体的观点。访谈数据将为这些因素提供更多的见解。
Q 方法论以前从未用于检查自闭症和非自闭症人士对自闭症倦怠的看法。预计的研究结果包括增强对自闭症倦怠的特征、风险和保护因素的理解。研究结果将对改善自闭症倦怠的检测和确定支持自闭症成年人预防和康复的策略具有实际意义。研究结果还可能为制定筛查方案提供信息，并为未来的研究确定潜在途径。
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