養育唐氏症兒對家庭的衝擊

The Impact of Raising a Child with Down Syndrome on the Family

黃璉華(L. H. Huang)

《護理研究》 2卷3期 (1994/09) Pp. 253-262

https://doi.org/10.7081/NR.199409.0253

摘要

唐氏症是一種常見的染色體異常疾病，除了有低肌肉張力、不尋常的臉部特徵外，尤其是會造成不同程度的智能不足，因此需要特殊的照顧與教育，而整個家庭所受的身心衝擊也是長期性的。本研究目的爲瞭解唐氏症兒家長的心理反應和適應過程，以作爲協助育有唐氏症兒的家庭對唐氏症作最好的調適之参考。
本研究採問卷調查及半結構性電話會談法收集資料，同意參與本研究的家庭數共有138家。研究結果顯示初得知唐氏症的診斷時，父母會産生悲傷、震驚、無法接受、害怕及無助等情緒反應，對唐氏症兒的未來期望能自我照顧、與人溝通與健康的成長。唐氏症兒的兄弟姐妹大部分表示喜歡唐氏症兒，但也有的認爲被剝奪了父母的愛。許多家長遺憾在孩子出生時，未有完整的資訊以瞭解唐氏症兒的教養知識及可能面臨的問題，以致錯失唐氏症兒早期療育的最佳時機。家長也表示在養育唐氏症兒的過程中，最缺乏教養知識、醫學常識，擔心唐氏症兒未來的發展及去向，尤其缺乏適當的特教或職訓機構的資訊。
研究結果是提醒醫護人員須有系統的協助唐氏症兒家庭的調查，應優先接觸低教育程度的家長，也建議落實對唐氏症家長團體的實質幫助，例如編譯唐氏症家長手冊等。

關鍵字

唐氏症 ； 衝擊 ； 家庭

並列摘要

Down syndrome is one of the most common chromosomal abnormalities in human beings. Besides low muscle tone and unusual facial features, it accompanies different degrees of mental retardation. For children with Down syndrome, they need special care and education. Therefore, the whole family suffers because of the long-term physical and mental impact caused by this condition. This study was aimed at exploring the parents' responses and their needs, so that we could better help those families with Down syndrome children. Data was collected by mailed questionnaires and semi-structured telephone interviews. One hundred and thirty-eight families participated in this study.
The results showed that when a mother learned that she had given birth to a child with Down syndrome, the most common responses were sorrow, shock, an inability to accept this fact, fear, hopelessness and disappointment. The fathers; responses were similar to that of the mothers'.
Most of the parents expected that, in the future, children with Down syndrome would be able to take care of themselves, could communicate with others and grow up nomally. Siblings indicated that they like to be with their siblings with Down syndrome, but some of them felt less loved by the parents who spent more time taking care of siblings with Down syndrome.
Parents indicated a need to know more facts about Down syndrome from the time the child was born. Parents also expressed a need of assistance from health professionals as to how to raise a child with Down syndrome. Especially needed is information about special education and training institutions. The result of this study suggests a more systematic way to assist parents, especially parents of low educational background. Other suggestions include supportive intervention to help the parents' group, such as a book to guide parents in raising children with Down syndrome.

並列關鍵字

Down syndrome ； impact ； family