Abstract
The present study aimed to know how parents dealt with the news of the diagnosis of Down syndrome at the time of their child’s birth and, later, in their adult phase. In this qualitative research, parents responded to a sociodemographic family data interview and to the Interview on the Place of Diagnosis of Down Syndrome in the Son’s Life. Based on the content analysis, two thematic categories emerged: The impact of the diagnosis for parents: “The child comes in half” and the diagnosis in the life of the grown up child: “Your grown up child is normal for you”. It was possible to perceive that the moment of the diagnosis was lived as a strong impact for the parents, associated with doubts and fears. After experiencing the mourning for the idealized child, the possibility of building a parents-child relationship of closeness and hope emerged. In addition, the parents indicated that they had improved as people, since they acquired lifelong learning from the coexistence with the limitations of the child and demonstrated to value the contact with the grown up child in the adult age. From this study, we highlight the parents’ ability to invest in the parents-child relationship, and argue that they should be considered as important figures to be included in actions to support the family and the person with Down syndrome.
Paternity; Down’s syndrome; Parent-son relationships