DOWN SYNDROME: COPING WITH DIAGNOSIS BY PARENTS

Abstract

The study addresses issues related to people with Down Syndrome, challenges faced and the impact generated on the routine and lives of family members, in addition, the resources available to help parents on this journey will be discussed, such as; multidisciplinary care, support groups, specialized therapies and social inclusion programs. Down Syndrome is a genetic condition identified by the presence of an extra chromosome in pair 21, resulting in distinct physical characteristics and changes in psychomotor and cognitive development. The diagnosis of this syndrome can occur during pregnancy, through exams, amniocentesis and Chorionic Villus Biopsy (CVS), or after the birth of the baby. Coping with the diagnosis of Down Syndrome by parents is a complex and emotionally intense process. They go through different emotional stages. In addition to adapting their lives to a new routine, always thinking about the well-being of their children, seeking support and available resources. Health professionals such as doctors, occupational therapists, speech therapists, physiotherapists, psychologists and other health professionals help parents deal with the adversities and comorbidities they will face on a daily basis. The general objective is to present the context of identified problems, as well as their causes and consequences, in addition to proposing reflection and discussion on the impact of nursing professionals' work on the lives of family members and people with Down Syndrome. The present study has a qualitative character, it is highlighted that in the expert phase the compilation of bibliographic and documentary research took place, with the main sources being the Scientific Electronic Library Online (SciELO) and the Ministry of Health databases between the years of 2014 to 2024. Through research and studies carried out, it was possible to identify common coping strategies and the main challenges faced by these parents. Parents who have access to resources such as accurate information about the syndrome, guidance from experts and family support groups have demonstrated a greater ability to deal with daily demands and challenges. However, there is a need for improvements and expansion in the support offered to atypical parents and children with Down Syndrome.