Adaptação familiar ao cuidado continuado de crianças com Síndrome de Down

Abstract

The birth of child with Down Syndrome (DS) is often an unexpected and unknew situation for most of the families, the presence of a child with especial needs brings challenges to the family including continued care and investments such as time, financial resources, interpersonal relationships and engagement of family members. This new context requires a familiar reorganization to answer the multiple requirements related to this care and daily life. The adaptation process is complex and has many facets, what affects the life of each family member of a child with DS. The aim of this study was to analyse from the primary caregiver prospective how the familiar factors interact with the adaptation process for the continued care of preschool and school age children with DS. It is about a qualitative study, oriented by Resilience Model of Family Stress, Adjustment, and Adaptation by McCubbin, M. and McCubbin, H. (1993). Twenty primary caregiver of children with Down Syndrome aged 3 to 7 years, living in Minas Gerais. For data collection was used an interview semi-structured script, and a script that oriented the construction of genograms and ecomaps of the families. The study got positive evaluation of ethics research committee of Universidade Federal de Minas Gerais under the CAAE number 52973916.6.0000.5149. Was adopted the direct analysis of content and followed the transcription steps, development of a codes system based on the theoretical referential used in this study, fluctuating reading and structuration of thematic categories, was used the software MAXQDA® version 12.2 for data organization and analysis. The analysis originated four thematic categories, they are: The birth of a child with Down Syndrome; Familiar demands and challenges on continued care of a child with Down Syndrome; Family appraisal about the situation, stressor, family scheme and the child with Down syndrome Familiar resources, problems solving, coping strategies and familiar social support. The diagnosis of DS was remarkable and unexpected for most of families that was thinking negatively about the fact to have a member with Down Syndrome, mothers was feeling unprepared and uncappable to look after their children, what had changed over the years caring their children. The main demands on care to DS children and the challenges related to the development delays, access to health services, child literacy and financial difficulties were identified. Change of origin of the challenges is verified over the years, maternal capacity to manage these challenges in the familiar and social context to ensure the needs of children and a positive change on familiar consideration about the child and the context. Therefore, the health professionals must consider the step which the child and family are passing through to plan their actions, and aim provide information, encouraging and support to family, pointing out the pathways for caregivers feel secure to face the daily life and care challenges, promoting a positive consideration about the situation, therefore adapting to the context.