2018 Volume 56 Issue 1 Pages 11-20
The present study examined the relation between parents' awareness of educational support for their children with mucopolysaccharidosis and evaluation of their satisfaction with that support. Parents (N＝57) whose school-aged children had mucopolysaccharidosis and who were participating in a meeting of parents of such children completed questionnaires. Their responses on the items relating to their awareness of educational support for parents and their evaluation of their satisfaction with the support were analyzed using Fisher's exact test; responses referring to when the children were in preschool, elementary school, and junior high school were analyzed separately. When the parents were aware of individual and psychological supports for their children, they generally reported satisfaction. On the other hand, parents who indicated that there was no support when their children were in preschool and elementary school reported dissatisfaction. This appeared to be the result of the parents' lack of support from when their children were in preschool continuing to when they were in elementary school. These observations suggest that teachers should share the school's support policy with the parents, support any diffıculties that each family may be having, and be sensitive to their feelings.
