Funcionalidade de crianças e adolescentes com síndrome de Down: impacto de fatores contextuais

Abstract

This thesis aimed to explore the functioning of children and adolescents with Down syndrome (DS), and analyze the impact of contextual factors on it. This investigation was based on four studies developed before, during and after the easing of social distancing due to the covid-19 pandemic. Study I aimed to compare, in children with DS, functioning and environmental factors before and during the social distancing imposed by the covid-19 pandemic and determine which social, physical, behavioral and functioning aspects during distancing were correlated with each other. There was a significant increase in the frequency and involvement of participation at home and in the impact perceived by parents on the child's possibility to participate in daily activities, as well as a significant reduction in social support received by the caregiver. Furthermore, greater socio-emotional difficulties were associated with lower parental satisfaction as well as less physical activity. Therefore, the beginning of the pandemic affected the functionality of children with DS in several ways. Study II investigated, from the caregivers' perspective, the feasibility of remotely assessing the functioning of children and adolescents with disabilities during the covid-19 pandemic and the contextual factors related to feasibility. Remote assessment was considered easy and feasible by caregivers. Viability scores were inversely related to maternal age. The multiple linear regression model shows that the family's higher socioeconomic level, the mother's younger age, stricter social distancing, longer periods of social distancing from the mother, undergoing therapy during the pandemic and mothers who did not work explain 20.4% of the health feasibility score of remote assessment. Study III investigated whether participation opportunities at home (frequency and involvement) for children and adolescents with DS are associated with functional skills related to the domains of daily activities, mobility, social/cognitive and responsibilities. It was found that greater frequency of participation at home was significantly correlated with better results in the domains of daily activities, social/cognitive and responsibility. The involvement outcome was also significantly (positively) correlated with daily activities, social/cognitive and responsibility. The mobility domain was not correlated with frequency and involvement. Study IV aimed to describe current home participation (frequency, involvement), the caregiver's desire for change in the participation of children/adolescents with DS and home environmental factors. Additionally, explore the interrelations of personal and environmental factors with the caregiver's current participation and desire for change from caregivers. It was found that children's participation was highest in managing personal care and lowest in activities related to school. Most caregivers wanted changes in homework and household chores. Greater frequency of participation was related to male gender, less rigorous social distancing from caregivers and children receiving therapies. Greater involvement was related to the younger age of the children and greater environmental support. The older age of the children was associated with a greater desire for change in the caregiver. The findings obtained in this thesis contribute to advances in the investigation of the functioning of children and adolescents with DS, shedding light on factors that can be the target of clinical investigation and future research.