連江縣（馬祖列島）早期療育服務的文化適應：以Parents Taking Action介入方案為例

Abstract

本研究旨在探討如何將介入方案進行文化適應，以應用於不同地理區域的研究方法與實務，並以Magaña和Sandy所發展並經許玥老師改寫的《Parents Taking Action》（PTA）同伴輔導員手冊為例。該手冊基於「Promotora de Salud」（社區衛生工作者推廣模式）設計，通過培訓具有對當地文化和語言深入理解且曾經養育自閉症譜系障礙兒童的家長，讓他們在熟悉的社區中擔任「同伴支持」角色。此模式已在先前的研究中證實對不同族群有正向效果。 本次文化適應之地點選擇連江縣（馬祖列島）為目前臺澎金馬地區最北端之領土，全縣以列島組成，因島與島之間之海洋阻隔，使得早期療育資源有限。除此之外，當地過往也因為戰地時期之前線，有著「同島一命」之緊密社區互動關係。本研究首先會探索連江縣（馬祖列島）地區的文化特徵與當地居民對早期療育服務的接受度之間的關聯，並藉由文化適應過程，將具有實證基礎的早期療育服務方案轉譯為該地區社區可行的版本。 本研究採質性研究方法，透過田野調查、深度訪談和焦點團體進行資料蒐集。研究者記錄了2023年9月至2024年9月一年的田野筆記，並訪談了12位曾接受過早期療育服務的家長，其中6位家長參與了焦點團體討論。研究使用生態有效性模型對資料進行分析，以作為調整PTA同伴輔導員手冊的依據。旨在探討連江縣（馬祖列島）地區早期療育服務的現況，以及如何在具文化敏感性的框架下，向社區傳遞與醫療衛生相關的社會福利服務。 研究結果顯示，連江縣（馬祖列島）醫療資源差距大，各島之間的資源可近性存在差異。由於該地區具有特殊的戰地歷史與地理環境，社區間的緊密聯繫顯著，也持續成為影響早期療育服務仍面臨污名化與標籤化的因素，這使得以社區為基礎的早期療育服務推展困難。此外，針對不同兒童發展領域，社區的接受度也有所不同。例如，較易接受可觀察到的行為表現或與生活獨立性密切相關的發展項目，如語言發展或粗大/精細動作的發展，且家長能夠具體表達觀察到的現象，如「講話較少」或「手沒力氣」等。研究還發現，由於氣候與交通的特殊性，當地居民在尋求資源時常受到距離與氣溫的影響，尤其是在冬季或雨天，外出尋求服務的意願顯著下降。 基於上述研究結果，本研究對PTA同伴輔導員手冊進行了文化適應調整，重點修改了八個維度：語言（Language）、隱喻（Metaphors）、概念（Concepts）方面主要進行了詞彙選擇與解釋方式的調整，去除診斷相關的專業術語，並使用簡單易懂的語言；在內容（Content）與目標（Goals）方面，強調當地文化中看重的表現，如「打招呼」等社交行為；在方法（Methods）、人物（Persons）與社會背景（Context）方面，探討誰適合成為連江縣（馬祖列島）的「社區衛生工作者」，並設計包含親子活動與方案活動組合的方案，避免選擇冬季或雨季進行，從而提高社區參與的動機。 最後，本研究根據結果提出了針對政策、實務與研究的相關建議。政策方面包括：（一）對於離島早期療育資源的重新認識與佈建；（二）對於不同文化背景下早期療育服務介入方法及指標的建議。實務方面則包括：（一）早離療育服務社會工作者深入地方文化的工作方法；（二）早期療育專業人員工作者對於多元文化下工作倫理之建議。研究方面則提出：（一）文化適應研究的研究方法的發展；（二）對於文化與社會福利服務輸送的探討；（三）對於以發展遲緩兒童社區療育據點方案的介入方法實證。

This study aims to explore how intervention programs can be culturally adapted for application in research methods and practices across different geographical regions, using the Parents Taking Action (PTA) Peer Counselor Manual, developed by Magaña and Sandy and adapted by Xu, Yovia (Yue), as an example. The manual is based on the Promotora de Salud (community health worker promotion model) and involves training parents who have a deep understanding of the local culture and language, and who have raised children with autism spectrum disorder, to take on peer support roles within their familiar communities. This model has been shown to have positive effects across different populations in previous studies. The site chosen for cultural adaptation is Lienchiang County (Matsu Islands), the northernmost territory in the Taiwan-Penghu-Kinmen-Matsu region. The county consists of islands with limited early intervention resources due to the geographical separation between them. Furthermore, the region has historically been characterized by close-knit community interactions, shaped by its military frontline during wartime, fostering a "shared fate" among island inhabitants. This study will first explore the relationship between the cultural characteristics of Lienchiang County (Matsu Islands) and the local community's acceptance of early intervention services. Through the process of cultural adaptation, the study aims to translate an evidence-based early intervention program into a version that is feasible and appropriate for the local community. The study employs a qualitative research method, collecting data through fieldwork, in-depth interviews, and focus group discussions. The researchers recorded field notes over one year, from September 2023 to September 2024, and conducted interviews with 12 parents who had received early intervention services, six of whom participated in focus group discussions. The data were analyzed using the ecological validity model to inform adjustments to the Parents Taking Action Manual. The study aims to examine the current state of early intervention services in Lienchiang County (Matsu Islands) and how to deliver social welfare services related to health and medical care within a culturally sensitive framework. The results of the study reveal significant disparities in medical resources across the islands, with varying accessibility to services between islands. Due to the region's unique wartime history and geographical environment, there is a strong sense of community connection. However, early intervention services still face stigma and labeling, which hampers the implementation of community-based early intervention programs. Additionally, the community's acceptance of services varies across different areas of child development. For example, there is greater acceptance of observable behavioral issues or developmental areas closely related to independent living skills, such as language development or gross/fine motor skills, with parents able to articulate specific phenomena like "talking less" or "lack of strength in hands." The study also found that local residents' willingness to seek services is significantly affected by distance and weather conditions, particularly in winter or rainy seasons, when the willingness to travel for services drops. Based on these findings, the study made cultural adaptations to the PTA Peer Counselor Manual, focusing on eight dimensions. Adjustments were made to language, metaphors, and concepts, primarily modifying vocabulary choices and explanations, removing diagnostic jargon, and using simple, easy-to-understand language. In terms of content and goals, the manual emphasizes culturally valued behaviors, such as greetings and other social interactions. Regarding methods, persons, and context, the study explores suitable candidates to serve as community health workers in Lienchiang County (Matsu Islands) and designs a program combining parent-child and activity-focused sessions, avoiding implementation during winter or rainy seasons to enhance community participation. Finally, the study provides policy, practice, and research recommendations. Policy recommendations include: (1) the re-evaluation and distribution of early intervention resources for outlying islands, and (2) suggestions for early intervention methods and indicators in different cultural contexts. Practical recommendations include: (1) methods for social workers in early intervention services to engage deeply with local culture, and (2) ethical guidelines for professionals working with diverse cultural populations. In terms of research, the study suggests: (1) the development of research methods for cultural adaptation studies, (2) exploring the relationship between culture and the delivery of social welfare services, and (3) evidence-based approaches to community-based intervention programs for children with developmental delays.