Hsu Yu-Chien, Tsai Shu-Ling, Hsieh Mei-Hui, Jenks Michael S, Tsai Chang-Hsiung, Hsu Min-Tao
Department of Nursing, Yuanpei University, Hsinchu, Taiwan.
College of Nursing, Kaohsiung Medical University, Kaohsiung, Taiwan.
J Appl Res Intellect Disabil. 2017 Jan;30(1):147-156. doi: 10.1111/jar.12229. Epub 2015 Nov 3.
There has been a dramatic increase in autism around the world. However, little is known about the impact of the Taiwanese primogeniture system on mothers of children with ASD. Greater knowledge is needed to understand the life experiences of Taiwanese mothers with ASD children when a healthy male descendent is expected.
Research follows the hermeneutic phenomenological approach with in-depth interviews and participant observation (Agar, Speaking of Ethnography. Sage, California, 1986). The researchers collected and analysed stories from seven mothers who are the major caregivers of their school-aged autistic children.
The data revealed the following themes that represented the mothers' experiences: taking the blame, my world was turned upside down, a child-centred life and two lives as one.
The findings provide a deeper understanding of common expectations of, and behaviours directed towards, Taiwanese mothers of children with autism. This offers healthcare professionals ways of reconceptualizing therapeutic practice, thus benefitting these mothers.
全球范围内自闭症患者数量急剧增加。然而，关于台湾长子继承制对自闭症谱系障碍（ASD）儿童母亲的影响却知之甚少。当人们期望有一个健康的男性后代时，需要更多了解台湾自闭症儿童母亲的生活经历。
本研究采用诠释现象学方法，通过深度访谈和参与观察进行（阿加，《民族志访谈》。塞奇出版社，加利福尼亚，1986年）。研究人员收集并分析了七位母亲的故事，她们是学龄期自闭症孩子的主要照顾者。
数据揭示了以下代表母亲经历的主题：承担罪责、我的世界天翻地覆、以孩子为中心的生活以及两种生活合二为一。
这些发现有助于更深入地理解台湾自闭症儿童母亲的共同期望和行为方式。这为医疗保健专业人员提供了重新构想治疗实践的方法，从而使这些母亲受益。
