ABSTRACT

This study describes the case of a student with congenital intestinal perforations and her experience with inclusive education in the Czech Republic. She is also a sister of an identical twin with cerebral palsy. The data were gained from semi-structured interviews and bio-graphical narratives of the student during her studies at the grammar school and from her parents. Van Manen’s analyses of lived experiences was used to identify important themes for each participant. The overarching themes present in their narratives concerned Lucy’s future and the choice of the most appropriate educational environment. The parents’ narratives focused more on barriers to inclusive education, benefits of inclusive environments, medical and educational care and family support based on close cooperation with school. For Lucy, the dominant theme was being a sister with a less severe disability and caretaking of her sister. In addition to enhancing the understanding of different needs of a student with congenital malformations and her parents’ experiences with inclusive education, it helped us to explore how the specific sibling’s constellation within her family and school contexts impacts her personal perspective on life, driven strongly by a wish for independence.

摘要

这项研究描述了一名先天性肠穿孔学生的案例以及她在捷克共和国接受包容性教育的经历。她还是一对患有脑瘫的同卵双胞胎的妹妹。这些数据是从该学生在文法学校学习期间及其父母的半结构化访谈和传记叙述中获得的。范马南对生活经历的分析被用来确定每个参与者的重要主题。他们叙述中的首要主题涉及露西的未来和最合适的教育环境的选择。家长们的叙述更多地关注全纳教育的障碍、全纳环境的好处、医疗和教育护理以及基于与学校密切合作的家庭支持。对于露西来说，主导主题是作为一个患有较轻残疾的姐妹并照顾她的妹妹。除了增强对患有先天畸形的学生的不同需求及其父母对包容性教育的体验的了解之外，它还帮助我们探索了家庭和学校环境中特定兄弟姐妹的星座如何影响她个人的生活观，这在很大程度上是由独立的愿望。