尋找迷宮的出口─腦性麻痺兒母親的經驗敘說

本研究以自我敘說研究的方式呈現一位腦性麻痺兒母親在生育、教養的過程，像是走入迷宮，接二連三的遇到轉折處，在轉折過程不斷的「增強權能」，努力找尋出口處。本研究目的如下：1. 透過故事敘說，呈現腦性麻痹兒家庭的生活經驗。2. 透過故事敘說，呈現腦性麻痹兒及其家庭在早期療育過程中遭遇的問題，以及腦性麻痺兒教養的方式和困難，以提供支援網絡之建議。3.透過故事敘說，呈現腦性麻痹兒母親生命中轉變的歷程，面對過去、現在和未來。4.經由故事分析，呈現腦性麻痹嬰幼兒期、兒童期之發展，並以增強權能觀點提出有效助人之建議。研究結果與建議如下：1.由於早期療育需求者在於早期發現、早期診斷、治療，非常有時間性的限制，近年來專家提倡「以家庭為中心」的療育計畫。從增強權能觀點看早期療育家庭，倡導「領航父母」的成立，以社區與充權為基礎，將種子父母與需求父母以配對方式，進行一對一的直接諮詢與技巧傳授的服務，尊重家庭個別性與差異性，完整的服務，方能促使早期療育更具成效。2.「去機構教養化」，喘息服務的時數和內容更須大幅增加，服務對象可納入疑似腦性麻痹患者，如此才能降低照顧者的負荷感、抑鬱、健康問題，改善照顧者與被照顧者的關係及其家庭生活。3.增設早療機構或巡迴服務，廣設早期療育網路資訊，釋放專業知識於網路查詢，加強個別化專業服務，以符合個別差異的早期療育需求者。4.建議醫療體系以更人性化的方式對腦性麻痺兒診斷、治療、實行復健，專業治療應適時釋放出專業知識，以協助腦性麻痹兒的復厡。5.拓展各種社會資源，協助腦性麻痹兒及其家庭。總之，腦性麻痹兒教養的過程，是一長時間不斷增強權能的考驗，比起其他種類的身心障礙，腦性麻痹兒更需要肢體長期的復健治療。藉由夥伴關係的扶持或宗教信仰的支持，引導這些患者及其家屬勇敢的往人生旅途邁進。

關鍵字

腦性麻痹兒；增強權能；早期療育；敘說；生活經驗

並列摘要

This research presents a mother parenting child with cerebral palsy in the way of narrative. During the process of raising and educating child, she feels like to walk into the maze facing with lots of transitions. In transition process unceasing “empowerment”, pursues the exit diligently. The goals of this research are as follows: 1. By way of the story analysis, presents the development of cerebral paralysis during infant and childhood, and provides a helpful suggestion in view of empowerment. 2. Presents the problems that the children with cerebral paralysis and their families facing in the process of early intervention, and provides suggestion of the support network. 3. Presents the life experience of family of child with cerebral palsy. The findings and the suggestion are as follows: 1. For the demand of early discovery, early diagnosis and early treatment, the experts advocate plan of early intervention based on family in recent years. In the view of empowerment, advocating the establishment of “navigation parents”, taking the community and the empowerment as the foundation, pairing the seed parents and the demand parents, carries on one-by-one direct consultation and the skill instruction service. 2. After “De-institutionalization”, the respite service must increase largely, the target client may integrate the cerebral palsy-like patient, to reduce watcher's load, despondence and healthy problem, and improves the watcher and by watcher's relations and the family life. 3. To match the demand of individual difference in early intervention, setting up more early intervention service, constructing early intervention information network, enhance individual education plan are necessary. 4. Suggest the medical service system in a user-friendlier way to diagnose, treat the child with cerebral palsy. Besides, the special knowledge also should be provided to increase the ability of family on caring child. 5. Search more social resource to assist the children with cerebral palsy and their family. In brief, the cerebral palsy education process is a test taking long time to empower continuously. In comparison of other type of handicap, cerebral palsy needs much longer time of rehabilitation. By way of the support of partnership or religious belief, guides these patients and their family facing life bravely.