家長對唐氏症者教養與就業準備之經驗

Abstract

本研究聚焦於唐氏症家長在教養與陪伴子女就業準備歷程中的經驗，試圖理解其中的照顧實作與行動邏輯。儘管臺灣對唐氏症者的關注逐漸提升，現有研究仍多集中於兒童階段與醫療議題，對成年後家庭支持與就業發展的探討相對有限。實務觀察發現，家長在照顧與陪伴唐氏症子女的過程中，經常面對制度資源不足、角色無法卸下等多重挑戰，然而這些經驗所累積的行動知識與判斷價值，卻鮮少受到關注。本研究採用質性研究方法，共訪談五位唐氏症者的母親，子女年齡介於20至45歲之間，皆具就業經驗。資料蒐集以半結構式訪談進行，並透過主題分析法，歸納出家長行動背後的判斷依據與教養邏輯。研究發現，家長普遍將生活情境視為教養的核心場域，透過長期陪伴與反覆練習，培養子女的生活自理與職業能力。隨著子女逐漸成長，他們在「正常化」的期待與子女實際能力之間，發展出具彈性的調整策略。當子女進入職場後，家長則延續原有的照顧邏輯，重視職場穩定與生活整合，同時以「不輕易介入」為原則，維持適當的支持距離。面對制度資源的不足，他們多採取實用性的補位行動，以穩定照顧步調，展現出高度的現實判斷與調適能力。值得注意的是，多數家長亦清楚意識到，照顧責任並不會隨子女成年而終止，對子女退化的風險與自身老化的擔憂，也持續牽動著他們的行動選擇與支持策略。本研究期待補足既有知識對唐氏症家庭實務經驗的理解落差，並指出家長於陪伴歷程中展現出的判斷力與支持策略。這些經驗不僅能為制度設計與實務應用提供參考，也讓我們看見家長在子女成長路上扮演的重要角色，並開啟與實務工作者合作的新可能性。

This study explores how parents of children with Down syndrome provide child-parenting and prepare for employment. It focuses on their parenting practices and the logical thinking behind their decisions. Although public awareness of Down syndrome has gradually increased in Taiwan, most research still focuses on the stage of childhood and medical issues. Up to now, support for families and employment preparation for Down syndrome in adulthood are still not well understood.In daily life, parents often face many challenges, such as limited resources and the difficulty in stepping back from the role of caregivers. However, the street smart and values they develop in parenting are not often discussed.This study uses a qualitative approach and includes semi-structured interviews with five mothers whose adult children with Down syndrome (aged 20 to 45) all have work experiences. Thematic analysis was used to understand their decision-making and caregiving logic behind.Findings show that parents see daily life as the main field where learning happens. They help their children build self-care and work skills through long-term companionship and repeated practice in life. As their children grow, parents develop flexible strategies to balance the idea of “being normal” with what their children can actually do.After their children enter the workforce, parents continue their caregiving mindset. They focus on helping their children keep a stable job and fit work into daily life, while trying not to interfere too much. When formal support is limited, they find practical ways to keep providing care, showing strong adaptability and flexible judgment.Many parents also realize that caregiving never ends even though their children become adults. Worries about their children’s possible degeneration and their own aging continue to affect how parents plan and offer support.This study helps fill the gap in understanding families of adults with Down syndrome. It highlights the everyday wisdom and support strategies developed by parents—insights that could be useful for policy-making, social work practice, and future cooperation with professionals.