智能障礙者手足關係的探索之旅

Abstract

摘要 本研究採質性研究法，探索四位智能障礙者之健康手足的成長故事，並從中了解手足關係的發展與轉變。我帶著家庭理論的觀點，透過與健康手足及其家人的訪談或互動收集資料，為期八個月。經資料的整理和解釋，先厚實地呈現四位主角的個別故事，再歸納出以下事實：

一、智障者手足關係與一般手足關係類似，唯內涵有些不同：手足間情感或經驗的交換不平等；健康手足會為得到父母同等的關心而競爭；負面衝突來自彼此無法尊重對方的角色；健康手足難卸代理親職的工作。

二、智障者手足關係的發展有其特殊性：智障者手足關係有如一般手足相同的U型曲線，但曲線較窄且在父母過世後急升，並可能從原本的橫向關係轉為縱向關係。每一生命階段中，健康手足對智障者都是重要的。

三.父母的引導及良好的親子關係有助於智障者與健康手足關係的發展：父母在子女手足關係發展關鍵期的童年時扮演重要角色，尤其父母與健康手足的良好親子關係可帶動手足間正向的互動。

四.健康手足經歷心理和生活上的調適：健康手足會擔心別人對遺傳的看法而不願與人討論；承接照顧智障手足的責任時，也會遇到需克服的難題。 根據以上發現，我提出一些發問、省思及給決策者、父母和教師的建議。In this qualitative study, I took a journey to explore sibling relationships in four families having children with intellectual disabilities. The data was collected in eight months mainly from in-depth interviews with four normally developing siblings, one from each family, and life stories were reported in thick description. The conclusions of this study were as follows: (1) Sibling relationships in these four families were similar to those in ordinary families, but differences still could be identified. Normally developing siblings had experienced unequal exchange of affection and thoughts with their brother or sister with intellectual disabilities, competed for attention and equal love from their parents, and could not evade responsibilities to care for their disabled siblings. (2) Sibling relationships in these four cases had developed in a similar way which siblings stayed close in early childhood and later years of life, however, they tied to each other earlier after parent’s death. Normally developing siblings played important roles in all stage of life for persons with intellectual disabilities. (3) It’s important for parents to guide their children especially in the early childhood for building warm sibling relationships. Close relationships between parents and normally developing children could facilitate the interaction with their disabled siblings. (4) To be the siblings of the intellectually disabled, all cases had experienced psychological adjustments and confronted with difficulties when they took more care responsibility for their disabled siblings. Based on the findings of the study, I raise questions and give my thoughts on some issues for readers, and offer suggestions for policy makers, parents, and teachers.