"At the mercy of the waves". Communication of diagnosis and parental accompaniment: a survey


This paper aims to investigate, with the help of an exploratory survey, the gap that exists between the moment a disability diagnosis is communicated and the subsequent state of isolation experienced in many cases by families, and thus the role that an accompanying educational pathway could play for all those involved, from the moment a child is born. Despite the presence of a solid and nationally recognized regulatory framework and well-defined diagnostic procedures, there seems to be a lack, in fact, of effective support for families from the moment they receive a diagnosis of a son or daughter's disability. Although some states have designated specific support figures for parents, especially after the birth of the child, such as, for example, the maternal caregiver, it seems that they still do not represent a point of reference in the later stages of the child's life. As a result, often, one of the two parents, especially the mother, finds herself in the condition of having to leave her job, to manage the complexity arising from the presence of a person with disabilities in the family; in other cases, the same nucleus may enter a crisis, even finding itself experiencing the separation or divorce of the couple. With this in mind, we emphasize the importance of identifying an educational figure who can increasingly serve as a bridge between the time of diagnosis and the family's decision-making regarding the identification of a sustainable life plan.