家長的自我調適—探討澳門有早療需要兒童家長的處遇與問題應對策略

This study aims to explore the experiences and coping strategies of parents of children in Macao who require early intervention services. With a significant increase in the number of students with special educational needs in Macao, the demand for early intervention services has grown rapidly. However, issues such as limited resources, long waiting times, and inefficient inter-departmental collaboration persist, leaving parents facing multiple challenges including insufficient information, financial pressure, and psychological burdens. Adopting a perspective of educational phenomenology, this research analyzes the reallife experiences of 16 parents of children who have received early intervention services in Macao through in-depth interviews. The study reveals that parents encounter three main types of predicaments: first, resource shortages and uneven distribution, including prolonged waiting times for assessments and services, fragmented information, and high costs of private therapy; second, inadequate system responsiveness, such as low sensitivity of doctors in identifying children's developmental issues, vague diagnoses, and opaque referral processes; third, internal family and social pressures, including parents' limited understanding of child development, family disagreements, and social discrimination. In response to these difficulties, parents have developed four main coping strategies: proactively seeking services (e.g., paying for assessments, seeking medical treatment across borders); actively fighting for resources (e.g., joining parent groups, advocating for problemsolving); family collaboration and self-learning (e.g., promoting family consensus, integrating training into daily life); and adjusting attitudes and expectations (e.g., accepting the child's unique developmental pace, seeking emotional regulation). The study suggests that Macao's early intervention services could draw lessons from the models in Mainland China, Taiwan, and Hong Kong, optimizing service processes (such as establishing case managers), enhancing service flexibility and quality, strengthening parent support systems (such as building information platforms and providing psychological support), and promoting social inclusion and inclusive education. This research not only fills the gap in qualitative studies on parents of children receiving early intervention in Macao but also provides empirical evidence for policy optimization and service improvement, aiming to better support children with special needs and their families.

本研究旨在探討澳門有早期療育（簡稱「早療」）需要兒童家長的處遇及問題應對策略。隨著澳門特殊教育學生人數逐年增加，早療服務需求日增，但存在資源有限、輪候時間長、跨部門協作不順暢等問題，家長面臨資訊不足、經濟壓力、心理負擔等多重挑戰。 研究以教育現象學為視角，透過深度訪談 16 位曾接受澳門早療服務的兒童家長，剖析其在早療過程中的真實經歷。研究發現，家長的處遇主要面臨三大困境：一、是資源短缺與分配不均，包括評估及服務輪候漫長、資訊零散、私人治療費用高昂等；二、是系統響應不足，如醫生對兒童發展問題識別敏感度低、診斷模糊、轉介流程不透明等；三、是家庭內部與社會壓力，包括家長對兒童發展認知局限、家庭觀念分歧、社會歧視等。 在面對上述困境時，家長發展出四大應對策略：一、主動尋求服務（如自費評估、跨境求醫）；二、積極爭取資源（如加入家長群組、維權推動問題解決）；三、家庭協作與自我學習（如推動家庭共識、將訓練融入日常生活）；四、調整心態與期望（如接受孩子獨特發展節奏、尋求情緒調節）。 研究建議參考中國內地、台灣及香港等華人地區的早療模式，優化澳門早療服務流程（如設立個案管理員）、提升服務靈活性與品質、強化家長支持體系（如完善資訊平台、提供心理支援）、推動社會包容與融合教育。本研究不僅填補澳門早療家長質性研究的空白，更為政策優化與服務改進提供實證依據，以期更好地支持特殊需要兒童及其家庭。