关于自闭症成人生活质量和老龄化经历的定性访谈研究。

Hannah E. Viner, Nicola Yuill, Andreia P. Costa, Holly Radford, Anna E. Kornadt
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引用次数: 0

摘要

自闭症群体已将整个生命周期的生活质量确定为研究重点。然而,人们对老年自闭症患者的生活质量和老龄化经历仍然知之甚少。迄今为止,大多数研究都采用了通用的生活质量衡量标准,但这些标准可能无法准确反映自闭症患者的经历。这项定性研究旨在了解自闭症成年人如何体验和定义他们的老年生活质量。我们对来自英国和卢森堡的 16 名 40 岁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,我们确定了五个有助于提高生活质量的主题:(1) 诊断是关键,(2) 与他人的联系,(3) 对空间和时间的自主权,(4) "生活中的文书工作",(5) 脆弱性。本研究确定了自闭症患者生活质量的特定方面,并强调了老龄化与自闭症相互交织和影响生活质量的方式。
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A qualitative interview study on quality of life and ageing experiences of autistic adults
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. A qualitative analysis of interviews with 16 autistic adults older than 40 years in the UK and Luxembourg identifies five themes of great relevance to Quality of Life and Ageing.
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