Cuidado à criança e ao adolescente com deficiência visual : experiência da família

Abstract

Visual impairment classification varies from low visual loss to total absence of vision. There are many alterations in the routine of children and teenagers who suffer with visual impairment, changing their independency, the way they do everyday activities and the relationship with other people, changing their family lives too. Based on this, we found the necessity and motivation to do this research, which aims to study the experiences of visual impaired children and teenagers. This is a qualitative and descriptive research conducted in two cities, with the Symbolic Interactionism as theoretical reference. In the city A, the identification of the families was done using the data supplied by the Secretaria Estadual de Educação do Estado de São Paulo (the official government institution for education in the state of Sao Paulo). In the city B, we obtained the data from an institution for people with visual impairment; eighteen families were interviewed, and the total number of participants was 61. Data were collected using semi-structured interviews, genogram and ecomap. They were recorded and conducted in their homes or in the institution; the research was approved by the University research ethics committee number: 1.034.350. The narrative analysis was used as the methodological reference to make the interpretation of the interviews and understand the trajectory of the families. For a better comprehension, the results were divided in themes, categories and subcategories and organized in three articles for the data analysis. The trajectory starts with the perception of the first signs of visual impairment and the surprise with the diagnosis. After, the families have to adapt their routines in order to facilitate patient’s life. Among the adaptations, there is the use of treatment resources, the necessity to adapt and accept the condition, to protect and to understand the limits to overprotection. The school environment was described as difficult and traumatic in the city A. The social support received by the family may not be characterized as social network, but as a social support. For the families who live in the city B, the support from a specialized organization was essential to deal with visual impairment. We may conclude that it is necessary the qualification of education and health professionals to modify the reality of these families. This research may support improvements in current public health policies and create new ones for the inclusion of visual impaired patients