Purpose: This study aimed to clarify the actual communication between parents whose children have been diagnosed with Prader-Willi syndrome (PWS) and school teachers in charge of such children.
Method: An anonymous, self-administered questionnaire survey was conducted with parents of children with PWS (aged 4–15 years). The survey period was from May 2016 to the end of October 2016. The survey contents included questions regarding parents’ communication experiences with the teachers-incharge and the basic attributes of children with PWS.
Results: Responses were received from the parents of 20 children with PWS: 16 of 19 parents (84%) had experienced a desire to speak with the teacher-in-charge, 8 of 16 parents (50%) had experienced the feeling that they were not able to adequately communicate with the teacher-in-charge, and 7 of 18 parents (39%) were unable to communicate with the teacher-in-charge, despite wanting to do so. The parents expected the teachers-in-charge to be familiar with the characteristics of children with PWS, including their “cognitive distortions,”“physical characteristics,” and “reasons for maladjusted behavior.” In addition, the parents wanted the teachers-in-charge to be able to understand and identify children with PWS.
Discussion: Interactions between parents and teachers-in-charge are necessary for children who require special support to establish strong ties. In this study, nearly half of the surveyed parents had experienced confusion and concern regarding communication with individual teachers-in-charge. A “gap” between the awareness/knowledge of parents and that of teachers-in-charge was assumed to be one of the causes for these concerns. This “gap” may not only hinder parents from participating in children’s education but also obstruct children from receiving appropriate support. However, it is natural for such a “gap” to occur between parents and teachers-in-charge who have been raising a child with disabilities. Therefore, efforts are required from both parties to repeatedly implement communication plans.
Parents of children with PWS want the teachers-in-charge to recognize the special characteristics of their children as individuals. They believe that this helps teachers provide dignified support to their children.
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