Creation and Validation of an Educational Booklet on Autism Spectrum Disorder.

Marciana Fernandes Moll, Carla Aparecida Arena Ventura, Aldo Matos, Ana Beatriz Rizzo Zanardo, Mary Carla Velasco Melo, Ronadia Dos Santos Silva
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Abstract

Objectives: To develop and validate an educational booklet that contributes to alleviating the difficulties experienced by family members of children diagnosed as being on the Autism Spectrum.

Methods: A descriptive exploratory study with a quali-quantitative approach. Ten families of children on the autism spectrum and twelve judges participated in the validation. Data collection took place through open interviews and data was analysed according to the procedures recommended by Bardin.

Results: Difficulties identified included problems in children's verbal and non-verbal communication, daily care, school inclusion, late diagnosis due to the lack of specialists, and lack of psychological support for the family and for handling the child during an episode of crisis. Informational needs included early diagnosis, evolution and management of crises, children's ability to learn daily life activities, and information about their right to inclusion in formal education. Based on these difficulties and needs, the booklet was created and validated by eight experts and four family members. Comparing the average of positive reviews in each section, which were obtained in the first and second evaluations, there was a general improvement in the quality of the booklet.

Conclusions: The validation of educational materials on this topic can be essential to improve the quality of life of children, families, and educators.

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自闭症谱系障碍教育小册子的制作与验证。
目的:开发和验证一个教育小册子,有助于减轻诊断为自闭症谱系儿童的家庭成员所经历的困难。方法:采用定性定量方法进行描述性探索性研究。10个自闭症儿童家庭和12位评委参与了验证。通过公开访谈收集数据,并根据Bardin建议的程序对数据进行分析。结果:发现的困难包括儿童的语言和非语言交流、日常护理、学校融入、由于缺乏专家而延迟诊断、缺乏对家庭的心理支持和在危机事件中处理儿童的支持。信息需求包括早期诊断、危机演变和管理、儿童学习日常生活活动的能力,以及关于儿童接受正规教育的权利的信息。基于这些困难和需求,这本小册子是由8位专家和4位家庭成员创建并验证的。比较在第一次和第二次评价中获得的每一节的平均好评,小册子的质量普遍有所改善。结论:对这一主题的教育材料的验证对于改善儿童、家庭和教育者的生活质量至关重要。
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