A Pilot Study: Caregiver Burden and Life-span Issues of Autism in Families of Adolescents and Adults with Autism Spectrum Disorders in Taiwan

前驅研究：台灣的青少年和成年人自閉症家庭之照顧者負荷及自閉症終身議題

10.30072/JDR.200912.0005

林玲伊(Ling-Yi Lin)

自閉症 ； 終身議題 ； 照顧負荷 ； Autism ； caregiver burden ； life-span issues

身心障礙研究季刊

7卷4期（2009 / 12 / 01）

291 - 311

英文

台灣目前針對自閉症患者之母親照顧經驗之研究仍不足，比前驅研究的目的在於了解自閉症子女的存在對家庭的影響，並調查患者母親之身心健康、照顧負荷和終身議題之關係。本研究使用調查研究法針對北台灣的20位10歲以土自閉症患者的母親，採取立意取樣的方式，從自閉症協進會以及自閉症基金會的會員為取樣的對象。採用自填式結構性問卷和半結構式訪談方式，引述出台灣自閉症患者之母親在自閉症子女教養上的經驗及擔憂。研究結果顯示在台灣當家庭出現子女為自閉症患者時，自閉症子女的照顧重擔及核子的終身議題明顯影響患者母親的身心健康。很多母親表示她們有照顧自閉症子女的沉重壓力，因為她們缺乏社會福利的管道及有效的家庭應變的支援，在教導自閉症子女表現符合社會文化所期待的行為時早晨到困難。關於照顧的重擔與母親身心健康，80%的母親表示她們有中度至極重度照顧重擔，有60%的母親憂鬱傾向偏高。就終身主義題而言，多數母親對自閉症子女的未來都感到憂心，她們擔憂自閉症子女的長期照顧及適當安置的問題。調查發現描述性的研究提供資料協助我們深入暸解台灣自閉症患者家庭，研究結果有助於說明在中華文化之影響下台灣自閉症青少年與成年之母親身心健康狀況、照顧負荷與終身議題的關係，值得進一步擴大研究樣本。

Less research has focused on experiences of Taiwanese mothers caring for an adolescent or adult with an autism spectrum disorder (ASD). The purpose of the pilot study was to better understand how the presence of a son or daughter with ASD affects families in Taiwan and to investigate the relationships of maternal well-being, caregiver burden, and life-span issues of autism in families of individuals with ASD. This study took a survey The methodology: The data from 20 mothers of adolescents and adults with ASD in the North of Taiwan. The mothers for this study were chosen as participants by purposive sampling from local autism associations and advocacy groups. Self-administered structured questionnaires and semi-structured interviews were conducted to elicit mothers' experiences and concerns. Results: This study pointed to considerable caregiver burden for mothers and give some indication of the associated maternal pessimism and life-span issues when raising a son or daughter with an ASD in Taiwan. Regarding caregiver burden and psychological well-being, the mothers (80%) indicated that they had moderate to extremely heavy caregiver burdens and twelve out of twenty mothers (60%) reported a high level of depression as the cut-off score of 16 has been used. In terms of life-span issues, mothers had specific worries about the future of the individuals with an ASD. They were worried about the long-term care and appropriate placement for their son or daughter with an ASD. The findings of this study may help understand Taiwanese families of individuals with ASD and elucidate the relationships of maternal well-being, caregiver burden, and life-span issues of autism in families of individuals with an ASD in the Chinese culture, which may be worth replicating with larger samples.

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