腦性視覺障礙（Cerebral Visual Impairment, CVI）已成為現今兒童視覺障礙的主要成因之一，特別常見於早產兒或有腦部損傷的兒童。與眼球構造相關的視障不同，CVI 主要源自腦部對視覺訊息的處理異常。本研究旨在深入探討台灣地區 CVI 兒童之家長在實際照顧歷程中的經驗與需求，聚焦三個核心問題：1.家長如何理解並協助孩子在日常生活中使用視覺？2.在實施視覺訓練時遭遇哪些困難？3.家長最希望獲得哪些與 CVI 有關的資源與知識？本研究以問卷調查的質性研究，有四大方向：診斷歷程、視覺行為觀察與視覺訓練、照顧壓力、系統支持。共招募 47 位腦部損傷兒童之家長。分為確立CVI診斷組，及未診斷組。結果顯示：診斷困難普遍存在，包括：標準不一、症狀被誤解、臨床認知不足等。未診斷組有 47% 家長表示不確定孩子能看見什麼，顯示對功能性視覺的觀察與理解不足。多數家長雖積極觀察與調整環境，但56% 表示難以觀察視覺進步，導致訓練信心不足與情緒疲乏。89% 的診斷組家長表達對訓練方法的迫切需求。診斷組家長壓力指數明顯較高，92% 表示照顧壓力沉重，尤以對未來不確定性感受最深。結論:CVI的視覺表現異質性很高，協助CVI家庭的關鍵不僅在於診斷本身，更在於提供個別化、視覺化且具延續性的訓練工具。未來應強化跨領域合作、落實家庭為中心的支持模式，以促進CVI 兒童長期的視覺進展。

Cerebral Visual Impairment (CVI) has emerged as a leading cause of visual impairment in children, particularly among those born prematurely or with neurological injuries. Unlike ocular-based visual impairments, CVI results from dysfunctions in the visual processing of brain. This study aims to investigate the lived experiences and support needs of parents raising children with CVI in Taiwan, with a specific focus on three core questions: (1) How do caregivers understand and support their child’s visual use in daily life? (2) What challenges do they encounter when implementing visual training? (3) What types of CVI-related knowledge and resources do they most need? A qualitative questionnaire was developed based on four major themes: diagnostic process, observation of visual behavior and visual training, caregiving stress, and systemic support. A total of 47 caregivers of children with brain injury were recruited and divided into two groups based on whether a CVI diagnosis had been established. The findings revealed that diagnostic difficulties were widespread, including inconsistent diagnostic criteria, symptom misinterpretation, and low clinical awareness. Among the undiagnosed group, 47% of caregivers reported uncertainty about what their child could see, indicating insufficient understanding of functional vision. Although many caregivers actively observed and adapted the environment, 56% expressed difficulty detecting visual progress, which led to low confidence in training and emotional fatigue. In the diagnosed group, 89% of caregivers expressed an urgent need for visual training methods. Furthermore, caregiving stress was significantly higher in the diagnosed group, with 92% reporting high levels of burden and uncertainty regarding the child’s future. In conclusion, the visual behaviors of CVI are highly heterogeneous, supporting families of children with CVI requires more than a diagnosis. It necessitates the provision of structured, visualized, and continuous training tools. Future efforts should prioritize interdisciplinary collaboration and the implementation of family-centered support models to promote long-term visual development in children with CVI.

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