Síndrome de Down: Impacto do Diagnóstico e Mediações por Meio do Grupo Psicoeducativo com Progenitores

Abstract

The thesis addresses Down Syndrome, knowing the parents to understand this disability impact on families. The study is made up of four articles. The first and third were written in the literature review model, which objective is to evaluate the bibliographic production of research reports indexed in CAPES, SCOPUS and Scielo databases on the impact of diagnosis in in families with Down syndrome´s people coping strategies and interventions in psychoeducational groups. Articles two and four are empirical, produced with the intention of presenting and discussing a qualitative research results, whic general objective was to understand difficulties that children families with DS face from the diagnosis. In particular, to know the impact influence in changes promotion in the family dynamics and to offer a support psychoeducational group to the parents. The data were based on a biopsychosocial understanding, in which we sought to dialogue with ecological approach authors, in order to understand the various variables involved in the phenomenon studied, avoiding reductionism. 37 families participated in the study, who were interviewed based on a semi-structured interview script. The responses were examined through Bronfenbrenner's theoretical perspective on the human development ecology (1996). The results, presented in the second empirical article, revealed that the DS diagnosis news was a complex and challenging experience. The diagnosis impact of SD on the life of parents was intense, they point out the desire to overcome the expectations imposed, but, on the other hand, they experienced difficulties in the exercise of parenting, which presents specific needs arising from the clinical aspect in SD. The most frequent feelings are related to a deep sense of impotence, overload of responsibilities, loneliness, sadness, besides fear of dying and leave the child helpless as regards the needs of care, affection and material resources. Parents emphasize patience, information and financial resources as important parameters for the proper exercise of parenting. Among the factors that hinder parenting of the child with DS, the most regressive symptoms were identified, especially the impairment in social interaction skills, as well as the lack of specialized institutions and the lack of family support. The data presented in the fourth empirical article present a psychoeducational group, the results indicate that the follow-up offered to the direct DS people caregivers are of fundamental importance, since the group becomes a support network, and it minimizes the fragility or lack of social support, which may also be related to the expansion of feelings of loneliness and impotence on the part of the family, especially the parents.