Determining Experiences and Difficulties of Parents Who Have Children with Williams Syndrome

Abstract

Williams Syndrome is a neuro-developmental disorder, which is caused by a deletion in a certain chromosome. Prevalence of Williams Syndrome is low and there is limited number of studies on Williams Syndrome both in our country and abroad. The purpose of this study is to determine experiences and difficulties of parents who have children with Williams Syndrome. It is a qualitative study. Five parents of children with Williams Syndrome were participated in the study. Data collected through semi structured interview via phone calls. Data were analyzed descriptively, with thematic analysis. According to findings of the study, all participants consider having a child with Williams Syndrome as a hard experience and they also have concerns for the future. Especially, problematic behaviors induced as main difficulties. Besides that, educators and health professionals' lack of knowledge and information, negative attitudes and inadequate services that they recieved become prominent difficulties. Additionally, the shortage of written resources and difficulties on accessing to information were obtained as findings.