Desenvolvimento de bebês com síndrome de down e suas famílias: adaptação, estresse e envolvimento parental

Abstract

The researches of the diagnosis of Down syndrome (DS) can have implications in cases of family functioning, since that the literature points out that this moment can be permeated by negative feelings and reactions to the information, because it is an unexpected event in the life of the parents. This study aimed to analyze the development of the baby with DS over time, the adaptation of the family, describing stress and parental involvement. Five families with a baby with DS have participated in the study, whose configurations were: father, mother and baby (n = 2); father, mother, baby and at least one child with TD (n = 2) and mother, baby, grandmother and maternal great-grandfather. The data were collected at the families' residence in three stages, after 3 months from one to another; and included the following instruments: Family System Characterization Questionnaire, Semi-structured interviews, Early Detection System for Developmental Disorders, Parental Involvement Scale and Parental Stress Scale. The results demonstrate that, over time, there were changes in families due to the baby. Initially, the parents reported having experienced a positive and satisfactory adaptation, but later, in some families, a negative and insecure adaptation was identified, in addition to the difficulties in accepting the diagnosis. In the developmental assessment percentages compatible with the classification 'risk-free' in development (n = 2) were identified and indicating stability. On the other hand, percentages compatible with the classification 'at risk' (n = 3) and an unstable pattern were evidenced. Most parents did not show changes in paternal involvement levels over time, except for an only one father where a reduction in involvement was found. The results of stress indicate that more mothers than fathers have reported in the interviews to feel stressed after the child's birth. Therefore, it can be observed that families experience events in a particular way and they have implications for adaptation and stress, which are also interrelated with the functioning of the group. The babies' development evaluations allow us to affirm that, although some percentages indicate risk in development, this result should be considered with caution, since due to DS, babies are already showing signs of delay. The importance of carrying out studies on the topic is highlighted for a better understanding of families with children with DS.