腦性麻痺幼兒母親之日常職能活動經驗與調適

The Experiences and Adaptation of Daily Occupations of Mothers with Young Children with Cerebral Palsy

羅鈞令(Jin-Ling Lo) ； 蕭小菁(Sheau-Jing Hsiao)

《職能治療學會雜誌》 24卷 (2006/12) Pp. 11-24

https://doi.org/10.6594/JTOTA.2006.24.02

摘要

有腦性麻痺的幼兒除了有動作障礙外，還常會伴隨多種其他感覺或認知障礙，因此比一般幼兒需要更多的照顧，而這個工作通常是落在母親身上。過去一些研究發現，腦性麻痺幼兒母親比一般幼兒的母親花較多的時間在照顧幼兒上，而參與自我進修或休息的時間則較少，生活品質也較差。本研究採用質性研究方法，探究有腦性麻痺幼兒的母親之日常職能活動與職能經驗，找出影響的因素以及母親的調適方法，以供治療介入之參考。
本研究採紮根理論研究法，訪談了七位腦性麻痺孩童母親的日常職能活動經驗，訪談過程全程錄音，隨後並轉譯為逐字稿。七位母親皆為全時家庭主婦，其年齡介於24到42歲之間，教育程度為國中到大學之間，有腦性麻痺的孩童之年齡介於2歲6個月到5歲11個月之間。
分析訪談逐字稿發現，母親的日常職能活動之內容與安排主要受其對
母親角色的觀念之影響，大多是以照顧孩子為生活的重心，忽略個人的休閒娛樂、休息或工作需求。母親的職能經驗包括沒有自我、缺少控制感、時間與體力均感不足、生活步調緊張、以及生活單調缺乏變化等。家人的態度是影響母親職能經驗的重要因素。此外也發現母親採用了多種調適策略來平衡其生活與感受，包括調整觀念、降低生活的目標以及減少家務事、安排自我放鬆的活動、將孩子暫託他人照顧以及邀朋友來家裡玩或結交同樣有腦性麻痺幼兒的母親當朋友等。本研究的結果可提高職能治療師對腦性麻痺幼兒母親之職能活動與職能經驗的敏感度，並提供了許多有效的介入策略，可幫助治療師進行以家庭為中心的介入方案。

關鍵字

腦性麻痺幼兒 ； 母親 ； 職能活動

並列摘要

Children with cerebral palsy not only have motor disabilities, but also have many comorbidities such as visual, auditory and/or cognitive deficits. Therefore, they need more assistance in daily living than ordinary children and usually it is the mother's responsibility to take care of them. According to the results of some related studies, mothers of children with cerebral palsy spent more time on child care and spent less time on studying and resting than ordinary mothers. Their quality of life was poorer, as well. The purpose of this study was to investigate the mothers' daily occupations, their occupational experiences, the influencing factors and their adaptive strategies.
The grounded theory research method was used in this study. We interviewed 7 mothers who had a child under 6 with cerebral palsy about their daily occupations and the interview was recorded and transcribed verbatim afterwards. All the mothers were housewives from 24 to 42 years old with 9 to 16 years of education. The children's age ranged from 30 to 71 months.
After analyzing the transcriptions, it was found that the mothers' daily occupations were basically child-centered and were influenced by their concept about a mother's role. The needs for personal leisure and recreation, rest and work were ignored. The occupational experiences of the mothers included no selfidentity, lack of sense of control, lack of time and energy, and the feeling that life was busy and dull. The families' attitudes were an important affective factor to mothers' occupational experiences. Furthermore, we found many adaptive strategies that mothers used to balance the orchestration of their daily occupations and their affective experiences. They would modify their own concepts and decrease their goals for life, or they would decrease some home-making chores, arrange regular relaxation activities, ask families to take care of the child temporarily, invite friends to visit them at their house or make friends with mothers in the same situation whom they met at the hospital. The results of this study can serve to increase the sensitivity of occupational therapists to the mothers' daily occupations and their occupational experiences and help the therapists to design a family-centered intervention program for young children with cerebral palsy.

並列關鍵字

children with cerebral palsy ； mother ； occupation