台灣自閉兒母親的生活世界

The Life World of Mothers with Autistic Children in Taiwan

徐瑀謙(Yu-Chien Hsu)

指導教授 ： 許敏桃

高雄醫學大學/護理學院/護理學系博士班/博士(2015年)

摘要

自閉症類群障礙症(Autism Spectrum Disorder，簡稱 ASD），是神經發展上的障礙疾患，典型症狀常在兒童幼年期顯現，個案呈現在社交覺察上的明顯損害、自我照顧、自我處理以及其它生活功能上的困難。可想而知，對孩童本身、家庭及主要照顧者而言，所產生衝擊的鉅大。近數十年來，全世界ASD人口呈現急遽上升的現況，聯合國將4月 2日訂為自閉症關懷日，旨在提醒此議題需被關注的迫切意義。
本研究主要目的，在了解台灣自閉兒母親生活世界的主體經驗。研究以詮釋現象學哲學觀點取向，採目的取樣與滾雪球取樣併進，以深度訪談並輔以參與觀察方式（例如運用家族系統排列），進行資料收集與分析。資料訪談歸整出四個主題及十個次主題，依序是「崩解」：包括「轉瞬成空」與「幸福離軌」；「究責」：包括「自責難消抺」、「責難一肩扛」與「母子繫帶情」；「位移」：包括「轉求得『安』『位』」、「疾病為軸心」與「傾斜的天平」；「轉渡」：包括「在關係中修復」與「在意義中重生」。
研究結果將提供專業相關人員，對台灣自閉兒母親有更深層的理解，並據此提供未來實務工作的反思。

關鍵字

母親 ； 自閉症類群障礙症 ； 文化,詮釋現象學 ； 家族系統排列

並列摘要

Autism Spectrum Disorder (ASD) is neurodevelopmental disabilities, the symptoms typically are apparent in early childhood, and are normally seen in clinically significant impairment of social awareness, self care/self management, or other important areas of normal functioning. And impact on children, family and caregivers tremendously. There has been a dramatic increase in ASD around the world. The United Nations General Assembly declared 2 April as World Autism Awareness Day to make efforts to raise awareness of this worldwide issue.
This research explored the lived experiences of Taiwanese mothers with ASD children. Research based on the hermeneutic phenomenological approach with in-depth interviews and participant observation (family constellation included). Participants were recruited through purposeful sampling and snowball sampling. The researchers collected and analyzed stories from 11 mothers and the data revealed the following 4 themes and supported by 10 subthemes that represented the mothers’ experiences. Being broken down: "being hollow" and " being painstaking"; Being held responsible: "incessant self-blaming", "accepting all blame" and "adhesive genetic nexus"; Being trans-positional: "transferring to stable locales", "being preoccupied with the disease" and "imbalanced scales"; Being transformative: "bridging the relationship gaps" and "the renewed life with strength".
The findings provide a deeper understanding of common expectations of, and behaviors directed towards, Taiwanese mothers of children with autism. This offers healthcare professionals ways of re-conceptualizing therapeutic practice, thus benefitting these mothers.

KEYWORDS. Mother, ASD , Culture, Hermeneutic phenomenology，Family constellation

並列關鍵字

Mother ； ASD ； Culture ； Hermeneutic phenomenology ； Family constellation

參考文獻

一、中文文獻

孔祥明（1999）． 婆媳過招爲哪樁？婆婆、媳婦與兒子（丈夫）三角關係的探討．應用心理研究（4），57-96。[Intergenerational Interaction between Mothers- and Daughters-in-law: A Qualitative Study. Research in Applied Psychology, (4), 57-96.]

池永歆（2005）．由胡塞爾的觀點來看地理學的生活世界概念．鵝湖月刊，363， 25-35．

余德慧（2001）．詮釋現象心理學．台北市：心靈工坊文化．

余德慧、李維倫、林耀盛、余安邦、陳淑惠、許敏桃、石世明（2004）．倫理療癒作為建構臨床心理學本土化的起點．本土心理學研究，22，253-325。[Yee, D. H., Lee, W. L., Lin, Y. S., Yee, A. B., Chen, S. H., Hsu, M. T., & Shich, H.M. (2004). Ethical Healing as the Starting Point for Indigenization of Clinical Psychology. Indigenous Psychological Research in Chinese Societie, 22, 253-325.]