肌肉萎縮症患孩母親的心理社會衝擊

Psychosocial Impact of Muscular Dystrophy on Mothers

黃璉華(Lian-Hua Huang) ； 戴玉慈(Yu-Tzu Dai)

《護理研究》 6卷2期 (1998/04) Pp. 137-151

https://doi.org/10.7081/NR.199804.0137

摘要

X連鎖隱性遺傳疾病，如裘馨氏（Duchenne）肌肉萎縮症等，通常需要長時問的特殊照護，當家庭中有這類患孩時，會對整個家庭帶來很大的衝擊。尤其對母親更是一大打擊，因為X連鎖隱性遺傳疾病的遺傳方式是經由女性帶因者，也就是母親本身。本研究目的為瞭解肌肉萎縮症患孩健康與行為問題，和母親的心理社會衝擊及相關因素。本研究透過肌原性肌肉萎縮症基金會收集肌肉萎縮症個案的名冊，以郵寄問卷的方式收集資料。研究發出問卷195份，回收之有效問卷為78份，回覆率40%。所得資料輸入電腦以SPSS處理分析。研究結果顯示肌肉萎縮症患孩母親大多有悲傷、無助、不能接受等的情緒反應，患孩母親的焦慮程度與患孩的健康狀況、情緒反應、和適應能力有關。患孩健康狀況與適應能力有關，而患孩適應能力又與情緒反應有關。家庭適應狀況及患孩適應能力同時與母親的焦慮程度有關。影響母親焦應的因素有患孩的情緒反應和母親是否有宗教信仰。建議未來應建立國人肌肉萎縮症發生流行病學的資料庫，提供肌肉萎縮症家庭的護理與諮詢服務，提高醫療服務的品質，並強化家長支持團體。

關鍵字

肌肉萎縮症 ； 母親 ； 心理社會衝擊

並列摘要

X-linked recessive diseases, such as Duchenne Muscular Dystrophy, usually require a long period of special care. For families who must face the reality of an affected son, the diagnosis marks the beginning of a long and painful process. It inevitably has a tremendous impact on the entire family, especially on the mother, the obligate carrier. The purpose of this study was understand the health and behavior problems of children with muscular dystrophy, and the psychosocial impact on the mothers with affected children. The Study sample were recruited from the Muscular Dystrophy Foundation. Mailed questionnaires were sent to 195 mothers of children with muscular dystrophy; 78 valid questionnaires were returned, which gave a response rate of 40%. Data were analyzed via SPSS computer software. Study results revealed that mothers had emotional responses such as sadness, helplessness, and denial; mothers emotional responses were related to the child's health condition, emotional responses, and adaptability. The health condition of the sick child was found to correlate to its adaptability, and adaptability correlated to emotional responses. The adapability of the whole family and the sick child were related to mother's level of anxiety. The predictors of a mother's level of anxiety were the child's emotional responses and whether the mother had religious belief. It is recommended to establish an epidemiological data set for muscular dystrophy. Further, to provide nursing and counseling services to strengthen parents' support groups and to enhance the quality of services is also suggested.

並列關鍵字

Muscular dystrophy ； mothers ； psychosocial impact