Dandy-Walker综合征和粘多糖病II型患儿复杂沟通需求的案例研究

Agnieszka Kamyk-Wawryszuk
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引用次数: 0

摘要

很少有出版物描述被诊断患有两种罕见疾病的儿童的病例。其中大多数是医学案例研究。这项研究的目的是描述孩子复杂的沟通需求,以及我作为一个人在家庭、社会、教育、治疗和医疗环境中的需求。这项研究涉及一名初学男孩,他被诊断为Dandy Walker综合征和粘多糖病II型(Hunter综合征)。这项研究采用了个案研究的定性取向。这项研究历时四年(2016年至2020年)。在男孩身上诊断出的复杂沟通需求引发了“我作为一个人”领域的以下需求:注意自己行为的影响,有一种作为团队成员的感觉,参与有助于发展自己能力和获得经验的活动,并参与团队活动。研究表明,上述所有需求都存在于家庭和社会环境领域。在教育方面,已经确定不需要知道其他沟通方法、能够使课堂适应多模式沟通并培训其他人的助教/助手。就治疗而言,没有必要在机构中创造一个可控的空间,因为治疗和教育一样,都是在男孩的家中进行的。在医疗保健方面,Adam具备上述所有需求。
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Complex Communication Needs of a Child with Dandy-Walker Syndrome and Mucopolysaccharidosis Type II Case Study
There exist few publications describing the cases of children diagnosed with two rare diseases. Most of them are medical case studies. The purpose of the research was to describe the complex communication needs of a child and the resulting needs in the area of me as a person and in the home, social, educational, therapeutic and medical environment. The research involved a boy in early school age diagnosed with the Dandy-Walker syndrome and mucopolysaccharidosis type II (Hunter syndrome). The research was embedded in qualitative orientation using an individual case study. The research was conducted over a period of four years (2016 to 2020). The complex communication needs diagnosed in the boy triggered the following needs in the area of “me as a person”: to notice the effects of one’s actions, to have a sense of being a member of a group, to engage in activities that will help develop one’s own competencies and gain experience, and to be included in group activities. The research suggests that all of the above mentioned needs exist in the home and social environment area. In terms of education, it was determined that there is no need for a teaching assistant/aide who would know alternative methods of communication and could adapt the classroom to multimodal communication and train other persons. In terms of therapy, there was no need to create a controlled space in an institution, as therapy, the same as education, takes place in the boy’s home. In terms of medical care, Adam has all the above mentioned needs.
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