一项关于自闭症成年人生活质量和衰老经历的定性访谈研究。
A qualitative interview study on quality of life and ageing experiences of autistic adults.
作者信息
Viner Hannah E, Yuill Nicola, Costa Andreia P, Radford Holly, Kornadt Anna E
机构信息
University of Luxembourg, Esch-sur-Alzette, Luxembourg.
University of Sussex, Brighton, UK.
出版信息
Commun Psychol. 2024 Oct 25;2(1):99. doi: 10.1038/s44271-024-00142-0.
Quality of life across the lifespan has been established as a key research priority by the autism community. Still relatively little is known about the quality of life and ageing experiences of older autistic adults. Most studies to date have used generic measures of quality of life which may not accurately capture the experiences of autistic people. The aim of this qualitative study was to understand how autistic adults experience and define quality of life as they age. We conducted semi-structured interviews with 16 autistic adults aged 40+ from the UK and Luxembourg. Using reflexive thematic analysis, we identified five themes that contribute to quality of life: (1) Diagnosis is pivotal, (2) Connection with others, (3) Autonomy over space and time, (4) 'Paperwork of life', (5) Vulnerability. This study identifies autism-specific aspects of quality of life and highlights ways in which ageing and autism intersect and impact quality of life.
整个生命周期的生活质量已被自闭症群体确立为关键研究重点。然而，对于年长的自闭症成年人的生活质量和衰老经历，我们仍然知之甚少。迄今为止，大多数研究使用的是通用的生活质量衡量标准，这些标准可能无法准确反映自闭症患者的经历。这项定性研究的目的是了解自闭症成年人随着年龄增长如何体验和定义生活质量。我们对来自英国和卢森堡的16名40岁及以上的自闭症成年人进行了半结构化访谈。通过反思性主题分析，我们确定了影响生活质量的五个主题：（1）诊断至关重要，（2）与他人的联系，（3）对空间和时间的自主掌控，（4）“生活琐事”，（5）脆弱性。本研究确定了生活质量中与自闭症相关的特定方面，并强调了衰老与自闭症相互交织并影响生活质量的方式。
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