Parents' Evaluation of Educational and Medical Supports for Children With Mucopolysaccharidosis

Abstract

The present study aimed to shed light on parents’ evaluations of educational and medical support for their children with mucopolysaccharidosis (an inherited metabolic disorder). Parents (N = 57) who had school-aged children with mucopolysaccharidosis and attended a Japanese mucopolysaccharidosis parents’ meeting completed questionnaires. About 40% of the parents indicated that children with mucopolysaccharidosis needed support in academic subjects, and about 70% that such children needed support in gymnastics. The parents reported their concern about educational and health support, but few indicated that they were teaching their children self-management skills Teachers and parents of children with mucopolysaccharidosis should support their children’s health, but they expect the children to manage their own health according to the children’s developmental stage. Because this is a progressive disease, the number of children with mucopolysaccharidosis who are enrolled in special education schools increases as the children’s age increases. Some parents reported that they had transferred their children to other schools because sufficient medical care was not provided at the special education school where their children had been registered. Medical care needs to be improved substantially in special education schools so that children who need care can receive it. (PsycINFO Database Record (c) 2017 APA, all rights reserved)