Adultos com síndrome de Down e seus familiares cuidadores: caracterização, qualidade de vida e estresse

Abstract

Technological and therapeutic advances have made it possible to increase the life expectancy of people with Down syndrome (SD), which requires the development of strategies and services aimed at improving the living conditions of this population, considering their needs throughout the course of development and no longer only during their childhood and adolescence. In addition, research with caregivers is also necessary, given the important role they play in providing support throughout the life course of the disabled person. This study aimed to characterize the adulthood of people with Down syndrome (DS), based on the reports of these people and a family caregiver, also focusing on the quality of life (QoL) of both and the stress of the caregiver. It took part in the research a total of 18 dyads composed by an adult with DS and his main family caregiver. Participants answered the Characterization Questionnaire of Family System, quality of life questionnaires, Inventory of Stress Symptoms and an interview. The results showed that adults with DS have routines characterized by low frequency of activities outside the domestic context, as well as a lack of activities performed with friends. There are few participants with DS who are in the job market as well as those who have loving relationships. It was identified low autonomy of the person with DS, with limitations in daily life skills and instrumental daily life skills. The results of the caregivers were positive in relation to the experience of having a relative with DS, but also pointed to difficulties related to adult care. Both adults and caregivers had higher QoL indexes in the Social relationships domain and lower in the Environment domain, with the highest overall QoL in the group of adults with DS. The data on the caregivers' stress were not related to their QOL. It is important to investigate the adulthood of people with DS in a systemic way, prioritizing different family members and social contexts.