Costurando as redes de cuidado de crianças com paralisia cerebral

Abstract

Cerebral Palsy is a disorder characterized by movement impairment secondary to a non-progressive lesion of the brain in early stages of its development. Among the many possible presentations within this diagnosis, there is a spastic quadriplegic type, in which it is expected severe motor implication that makes impossible the ability to walk and have many associated comorbidities. This condition requires attention of the caregiver throughout the person's life because of his/her dependence. The mother is, in general, who usually assumes the role of caregiver. The present work aims to understand the process of caring for children with severe neurological disease considering the composition and function of the mother's social network, and where Rehabilitation team stands in this context. The survey was conducted with five participants, mothers of children cared by SARAH Network of Rehabilitation Hospitals - unit Salvador. As data collection instrument, semi-structured interviews and network map application were used. The analysis was performed taking into consideration Bioecological Human Development theory. It was observed that mothers went through an ecological transition which began right after the children with cerebral palsy's birth, considering the PPCT model (person, process, context and time). All mothers left their work and / or educational activities. The person's social network was reduced and, at the present, it is restricted to family, especially the female figures such as children's grandmothers and aunts, few friends and the Rehabilitation team. The way it appears, the personal social network seems to be fragile and overloaded of work, as the participant accumulates functions and attributions. Mothers reported fatigue and social isolation, but draw attention mainly to the feeling of loneliness. This context puts the caregivers in a position of vulnerability to physical and mental diseases. These results indicate the need of supporting the mother on the carrying process and show the importance of the family and the Rehabilitation Center in the process.