肌肉萎縮症照顧者的力量：口述歷史的見證

Caregiver's Power in Families with the SMA Child: An Oral History Testimony

游鯉綺(Li-Chi Yu)

《身心障礙研究季刊》 7卷4期 (2009/12) Pp. 260-274

https://doi.org/10.30072/JDR.200912.0003

摘要

本研究則以口述歷史的方式，透過肌肉萎縮症患者的家庭照顧者自己的述說，理解生命與疾病之間的關速，以及照顧者選擇採取什麼樣的行動讓生命持續前進，所3頁沉重的負荷、受影響的生活品質，在真實的生命脈絡中又是怎麼樣的一種經驗與面貌？本研究認為隨社會變遷與家庭型態的多元化，應該重新思考國家照顧政策的根本方向，一味將照顧工作私領域化，才是面對家庭照顧者最需要探討的課題。肌肉萎縮症患者的家庭，因為疾病本身的特殊性與環境互動的重要性，容易清楚的說明「家庭照顧者」的困境，是本研究選擇以肌肉萎縮症患者家庭照顧者做為研究對象的主因。透過三位受訪者不同的生命故事，看到不同年代的家庭照顧者，以不同的姿態面對生活環繞與社會條件，而他們所採取的姿態，正反映著他們如何看待自己身為「家庭照顧者」的角色，這些角色隨著時間、因著事件移動而來的位置帶著他們自身生存的力量。這樣的力量表現在日常生活事務的組織安排與對國家政策的感知與衝撞，史表現在肌肉萎縮症患者本身生命的韌性與毅力。換言之，政策思考的根本價值影響資源擺放的位置，同時亦與肌肉萎縮症患者本身的獨立生活，及其照顧者的生存樣貌緊緊相扣。雖然只是三個個別的生命經驗，盼望透過受訪者在有限的環境條件下發展出來的生存之道的視窗，提供一個社會圖像的思考。

關鍵字

口述歷史 ； 肌肉萎縮症 ； 家庭照顧者

並列摘要

In this study, by means of oral history, through family caregivers' own description of caring for children with spinal muscular atrophy (SMA), the relationship between life and illness is understood, and what kind of actions he/she undertook to enable life to go on are revealed. Also, what kind of experience and appearance would statistical data provided in past studies present in living examples? Life itself has the strength to find a way forward. From a life story, similarities and differences within a community can be discovered. With changing times and multiple family types, the basic direction of national caregiving policies should be reconsidered. In family care, inevitable privatization of caregiving work is the subject most needing to he addressed. Families with SAM child can easily describe difficulties faced by ”family caregivers”, due to the specificity of the disease and the importance of environmental interaction. This is the primary reason why, in this study, caregivers in families with SMA child were selected as research subjects. Through three different life stories from three interviewees, we could see that caregivers of different times faced their living environment and social conditions with different attitudes. The attitude they took reflected how they saw themselves in the role of a ”family caregiver”. These roles were not unchanging, but were determined by time and events, and accompanied by their own powers of survival. When this kind of strength is revealed in the organization of daily affairs and the understanding and impact of national policies, it further showcases the toughness and willpower of SMA child. In other words, core values indicated in policies affect resource placement, and are closely related to independent living and the lives of the caregivers. Although the stories presented here were individual life experiences, we hope to provide an image of society by looking through the window of the caregiver's survival path in a limited environment.

並列關鍵字

Family Caregiver ； Oral History ； Spinal Muscular Atrophy SMA

參考文獻

乙武洋匡著、劉子倩譯(1999)。五體不滿足。台北:圓神。

王佩辰()。

方凱企(2007)。發展遲緩兒童照護者壓力與其對遺傳諮詢資源獲取的需求研究(碩士論文)。台灣大學醫學院分子醫學研究所遺傳諮詢組。

貝谷嘉洋著、Tama譯(2003)。變成魚的日子：一位患肌肉萎縮症青年的柏克萊留學記。台北:聯經。

李宇宙(2007)。人文、醫學與疾病敘事。台北:記憶工程。