As redes sociais de apoio as crianças com deficiência e suas famílias

Abstract

Chronic diseases lead to changes in the daily life of the child and the whole family. Such transformations are not limited to organic or physical nature, being able to reach emotional and social aspects throughout the family. It is true that for the care of children with disabilities families need different supports. In this context, support networks are important tools in helping to cope with illness. This study seeks to understand how families recognize the need of social support networks and their insertion in the daily life of children with disabilities. In addition, it also seeks to map the elements of the social support network, describing how families of children with disabilities appropriate these organizations. Sluzki's social network is related to the interpersonal niche, being in constant process of construction, including family, friends, work, study and community relations, being the sum of all the relations that the subject perceives and experiences as meaningful. This network is built in the form of a minimum map of relations (MMR), which aims to portray the composition, distribution, and the specific characteristics of the relationships that form the personal network of a subject. The present research has a descriptive nature, with a qualitative approach of the case study type, which was developed with families of children with disabilities accompanied by the Rehabilitation Center of a municipality in the Northern Region of the State of Ceará, Brazil. Data collection was performed through the application of semi-structured interviews, which were performed with relatives of children with disabilities. The characterization of the sample was performed through the collection of socio-demographic data of the participants. The data obtained in the interviews were analyzed through the use of the Bardin’s content analysis technique and the categories mapping of Sluzki’s relations, family access to service networks, services used by children, leisure of children and needs of the child and his or her family. Social networks have proved to be important resources used by the family in the search for the reception of their anxieties and a higher quality of life for the disabled child and family. The results confirmed that the daily life of the family undergoes significant changes, necessitating new adaptive behaviors. It was evidenced that the mother remains the main caregiver of the child with disability, having centrality in the responsibility for the integral care of the child. The families have weak knowledge about the resources to which they are entitled. They recognize the importance of leisure, since it contributes to the development of the child. However, it is largely limited to play in playgrounds and squares. The main demand presented by families is related to school education, since they believe that the school is not prepared to accommodate children with disabilities. It is important to highlight that knowledge of the subjective and objective conditions about the lives of these families and children with disabilities contributes to the planning of singular care, so that it translates into positive impacts on the quality of life.