艱苦的航行－－一個養育小胖威利症幼兒家庭的故事

Arduous Navigation: The Life Story of a Family Raising a Young Child With Prader-Willi Syndrome

本個案研究是以敘說研究法，探討一家庭自小胖威利症兒出生後，因育兒等問題演變為母親攜子離家生活的歷程。乃以隱喻方式展現此一家庭生命故事內容―生命的航海圖相：(1)出航：航向未知的命運；(2)海嘯：由天而降的考驗；(3)觸礁：汪洋中的一葉輕舟；(4)孤島：相依為命的母子；(5)蛻變：生命的重整、再出發；(6)揚帆：實現夢想的旅程。研究者是以護理師兼個案管理員身份，與案家互動並提供健康照護、諮詢及支援服務近一年。患孩的母親經充能後，已逐漸走出悲怨，堅強地面對未來的挑戰。

The purpose of this narrative research was to explore the life experience of a family with a son suffering from congenital Prader-Willi syndrome (PWS). Difficulties associated with raising a PWS child led the mother to leave the family with her afflicted son. The author analyzed the story of this family and applied metaphors to describe the course of the family’s life in terms of a “navigational map of life”. This map included the six components of: 1. Leaving port (sailing toward an unknown future); 2. Facing a tsunami (undergoing a trial from God); 3. Striking a reef (a fragile boat in a vast ocean);4. Isolated on an island (the interdependent relationship between mother and child); 5. Transformation(adjustment and starting over); and 6. Hoisting the sails (staying to the course of making dreams come true). In this study, the researcher served as the nurse case manager and interacted with family members to provide health care, consultation and support as needed. The mother of this young PWS child has empowered herself, overcome her suffering and prepared herself well to face the challenges of the future.