中高齡智能障礙者主要照顧者復原歷程之探討

Abstract

本研究旨在探討中高齡智能障礙者之主要照顧者，如何在面對「雙重老化」所帶來的多重照顧挑戰中，於身心壓力、資源限制與情感糾葛的風險情境下，展現韌性並推進復原歷程，以為長期照顧體系中高壓照顧者的支持策略提供具體方向。研究採用質性研究方法，透過深度訪談蒐集資料，共訪談八位居住於北部地區、具長期照顧經驗的主要照顧者。研究結果指出：一、照顧挑戰不僅來自智障者身心退化，亦包含照顧者自身老化、配偶離世與資源斷裂等多重壓力，而照顧韌性多源自早期照顧經驗的累積與調整。二、照顧者復原歷程呈現「惡化—適應—恢復」的動態循環，並非線性發展，部分照顧者仍陷於「反覆惡化—短暫適應」的困境。三、照顧者展現情緒調節力、調適與應變力、資源整合力與意義轉化力四項關鍵復原特質，這些特質讓他們即使身處不穩定情境，仍支撐其於高壓下維持生活秩序與心理穩定。四、復原歷程深受個人、家庭與社會層面的風險與保護因子交織影響，這些因子並非靜態存在，而是會隨時間轉化、彼此滾動，皆深刻影響復原的速度與深度。五、親情與文化交織的責任感是照顧者承擔照顧的重要動力，但同時也可能成為轉銜規劃的內在阻力，使其陷入「無法久撐、難以交棒」的兩難處境。基於研究發現，建議政策面設計「照顧者支持歷程」追蹤機制、推動跨服務「資源整合與服務協調」機制及信託制度，並建立資源聯繫窗口；實務面應發展文化敏感的照顧轉銜引導與心理調適服務，推出「照顧資源簡化包」並強化資源可近性；社工教育面則應培養對復原歷程波動性的敏感度、文化倫理的理解力與跨專業整合能力。This study investigates how primary caregivers of middle-aged and older adults with intellectual disabilities demonstrate resilience and progress through the resilience process in the face of multiple caregiving challenges caused by “double aging”—the simultaneous aging of both the caregiver and the care recipient. Under risk-laden contexts involving psychological stress, limited resources, and emotional entanglements, the study seeks to offer concrete directions for supporting long-term caregivers under chronic strain. Using a qualitative research design, in-depth interviews were conducted with eight experienced caregivers living in northern Taiwan. The findings reveal the following:1.Caregiving stress arises not only from the physical and cognitive decline of the care recipients, but also from the caregivers’ own aging, spousal loss, and service disruptions. Resilience is often shaped by early caregiving experiences and accumulated adaptation.2.Caregivers’ resilience journeys follow a dynamic cycle of deterioration–adaptation–resilience rather than a linear path. Some remain stuck in repeated loops of decline and short-term coping.3.Four key traits of resilience were identified: emotional regulation, adaptive flexibility, resource integration, and meaning-making. These traits help caregivers maintain order and psychological stability even under high-pressure and uncertain conditions.4.Resilience is deeply influenced by interwoven personal, familial, and social risk and protective factors, which shift over time and collectively shape the speed and depth of adaptation.5.A strong sense of responsibility, rooted in familial bonds and cultural norms, serves as both a core motivation for caregiving and an internal barrier to long-term care transition planning—leaving caregivers torn between burnout and reluctance to hand over their role.Policy recommendations include establishing a caregiver resilience tracking system, integrating service coordination and trust planning mechanisms, and improving resource accessibility. Practice and education should emphasize culturally sensitive support, simplified resource toolkits, and interdisciplinary collaboration.