自閉症類群障礙症幼童的遠距家長訓練方案：家長成效之探討

研究目的：隨著更多的自閉症類群障礙症（autism spectrum disorder, ASD）幼兒及早發現及確診，早期療育服務更顯供不應求，由家長作為介入執行者的模式可能嘗試彌補此缺口，提高ASD幼兒接觸高品質療育的機會。而近年來受疫情因素影響，面對面的介入提供常被迫中斷，遠距家長訓練模式能跨越地域限制，以更彈性的方式讓家長接觸具實徵證據的介入模式。本研究以丹佛早療模式（Early Start Denver Model, ESDM）及讓家長成為孩子溝通訓練的老師（Improving Parents As Communication Teachers, ImPACT）為課程設計基礎，旨在探討台灣地區ASD幼兒之遠距家長訓練方案的可能性，並檢驗家長在接受本研究介入後，與介入相關的知識及技巧執行能力之變化，以及其對於親職壓力、親職效能及生活品質之影響。研究方法：本研究為隨機對照試驗（randomized controlled trial, RCT）設計，共納入33名生理月齡介於18至48個月之ASD幼兒及其家長，隨機分為家長自助組及治療師協助組。家長自助組家長獲得本研究設計之課程網站六個月之使用授權，治療師協助組家長除了上述網站內容以外，另外接受一週一次，一次一小時，為期13週的教練課程。兩組家長皆須於介入前、後完成紙本問卷及家中親子互動影片錄製，並前來實驗室進行幼兒評估及其他資料蒐集。在2021年5月疫情爆發後，研究參與方式改為全線上進行，現場評估內容皆替代為家長自填問卷及線上訪談。研究結果：（1）在初級指標方面，接受遠距家長訓練方案後，兩組家長之介入知識分數及介入執行真確度分數皆顯著提高。在治療師的協助下，家長的介入執行真確度分數有更顯著地提升。（2）在次級指標方面，兩組家長之親職壓力總分、親職效能總分及生活品質範疇分數皆未有顯著變化，但親職壓力量表中的親職角色投入及社會孤立次量表分數顯著提升。兩組家長在介入後皆對遠距家長訓練方案具高滿意度，大多數家長同意自己能掌握每週的主題課程，並在過程中觀察到自己與孩子的正向改變，未來也願意繼續在生活中執行介入。結論：整體而言，遠距家長訓練模式可能使家長更有機會接觸實徵介入，並在短時間內提升對介入的知識概念，但治療師的協助能讓家長更顯著提升在家中介入執行的品質。本研究建議持續蒐集更大的樣本，以釐清不同類型ASD幼兒及家長的學習歷程及困難，並深入探討介入過程中壓力感受的來源及可能的因應方式。

關鍵字

自閉症類群障礙症；丹佛早療模式；讓家長成為孩子溝通訓練的老師；遠距醫療；家長訓練；介入執行真確度

並列摘要

Objectives: With more early detection and diagnosis of young children with autism spectrum disorder (ASD), there are high levels of unmet service needs. Parent-mediated intervention (PMI) programs may fill this gap and increase access to high-quality treatment for young children with ASD. However, since the COVID-19 pandemic, face-to-face interventions have often been interrupted. The telehealth parent training model may transcend geographical restrictions, offering a promising mechanism for increasing access to evidence-based interventions in a more flexible way. Based on the Early Start Denver Model (ESDM) and the Improving Parents As Communication Teachers (ImPACT) intervention design, this study aimed to explore the effectiveness and feasibility of telehealth training programs for parents of ASD young children in Taiwan, and examined post-intervention changes in parents' intervention knowledge, implementation fidelity, parenting stress, parenting efficacy, and quality of life. Methods: A randomized controlled trial (RCT) was conducted. 33 children aged 18-48 months with ASD and their parents were randomly assigned to a self-directed or therapist-assisted program. Parents in the self-directed group received access to the website designed in this study for six months, while parents in the therapist-assisted group received the website and 13 weekly 1-hour coaching sessions. Parents of the two groups were required to complete questionnaires and record parent-child interaction at home pre- and post-intervention. An on-site child assessment and additional data collection would be administered in the laboratory. After the outbreak of the COVID-19 pandemic in May 2021, the study was adjusted to online participation. The original on-site children assessment was replaced by self-rated questionnaires and online interviews by parents. Results: (1) In terms of primary indicators, the results indicated that parents in both groups significantly improved in intervention knowledge and ESDM implementation fidelity. Parents with therapist’s assistance had greater gains in implementation fidelity. (2) In terms of secondary indicators, there were no significant changes in parenting stress, parenting efficacy and quality of life scores in both groups of parents. However, parents in both groups got significantly higher scores on attachment and isolation subscale in the Parenting Stress Index (PSI-4). Both groups of parents were highly satisfied with the telehealth parent training program. Most parents agreed that they could master the weekly courses, and observed positive changes in themselves and their young children during the process. They would like to continue implementing intervention in their daily lives in the future. Conclusions: Overall, the telehealth parent training program may suggest a potential role for parents to increase access to evidence-based interventions and improve intervention knowledge in a short period of time However, therapist assistance provided additional benefit for improving fidelity. Future studies are recommended to continue collecting larger samples, for clarifying the learning process and difficulties of different parents and young children with ASD, and for further exploring the stressors and possible coping strategies during the training process.

並列關鍵字

Autism spectrum disorder ； Early Start Denver Model ； Improving Parents As Communication Teachers ； Telehealth ； Parent training ； Intervention fidelity

參考文獻

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596

Hao, Y., Franco, J. H., Sundarrajan, M., & Chen, Y. (2021). A pilot study comparing tele-therapy and in-person therapy: Perspectives from parent-mediated intervention for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 51(1), 129-143. https://doi.org/10.1007/s10803-020-04439-x

Ingersoll, B., Wainer, A. L., Berger, N. I., Pickard, K. E., & Bonter, N. (2016). Comparison of a self-directed and therapist-assisted telehealth parent-mediated intervention for children with ASD: A pilot RCT. Journal of Autism and Developmental Disorders, 46(7), 2275-2284. https://doi.org/10.1007/s10803-016-2755-z

Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159-174. https://doi.org/10.2307/2529310

Vismara, L. A., McCormick, C., Young, G. S., Nadhan, A., & Monlux, K. (2013). Preliminary findings of a telehealth approach to parent training in autism. Journal of Autism and Developmental Disorders, 43(12), 2953-2969. https://doi.org/10.1007/s10803-013-1841-8

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自閉症類群障礙症幼童的遠距家長訓練方案：家長成效之探討

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