Service trajectory of children with Global Developmental Delay in Québec as viewed by their parents
Among families of children with developmental delays such as global developmental delay (GDD) or intellectual disability (ID), most of the challenges faced during childhood are increased by the consequences related to the child’s diagnosis. Families’ experiences surrounding diagnostic evaluation and early intervention services can have important repercussions on the family’s quality of life and the child’s development. To acquire a better understanding of the situation of Quebec families with a child having GDD or ID, this study document 61 parents’ perception surrounding diagnosis evaluation and early intervention services trajectory offered in the province of Quebec. Data was collected from an online survey made with multiple choices and open-ended questions. The results show that the determinant of assessment of the quality of the trajectory perceived most negatively by families was the accessibility of services. In addition, families positively assessed services offered to the child directly while those offered to the family surrounding the child were evaluated more negatively. A family-centered approach is suggested to maximize the support received by each family member both in terms of orientation of services and psychological support to the family.