As redes sociais de indivíduos com tetraplegia: mudanças e permanências

Abstract

The present study aims, on the one hand, to analyze the composition and recomposition of social networks of chronic quadriplegic individuals after spinal cord injury acquired and, on the other hand, mapping the tensions and paradoxes that emerge from the situation of complete dependence on the help of other people to ensure their survival. The research falls into the field of qualitative research and follows an interdisciplinary model of analysis. The research participants were four people with quadriplegia attended in a Physiotherapy Clinic-school in the city of Salvador, Bahia, and also the main caregiver of each one of them, totaling eight interviewees. The study included patients with secondary quadriplegia to spinal cord injury and classified as ASIA A; that had at least one year of injury. All the "cases" analyzed are male, aged over 18. It was excluded from the study those whose spinal cord injury would be of congenital origin, perinatal or even acquired in childhood. In regard to the caregivers, those were elected based on the analysis of the narrative of the people with quadriplegia, through the identification of those who take the biggest share of the activities and responsibilities relating to their care. The swab was guided by an ethnographic posture and the data were obtained based on the biographical narratives of the selected individuals and through interviews guided by semi-structured scripts prepared by the researchers. The analysis of the changes and continuities of social support networks of quadriplegic patients performed in this study proved to be an important methodological path and that allowed a better understanding of the dynamics of care in situations of high dependence. It was evident that the presence of a social network, even if emptied and fragile, is instrumental in the adoption of positive coping strategies of quadriplegia, which does not exclude the need to seek the development of strategies aimed at the 'normalization' of these networks, which, by increasing the size and diversity of the bonds, could provide less burdensome to caregivers and greater possibilities of social participation for people with quadriplegia. It’s undisputed the importance of a bigger presence of the State on supporting these families, as well as the sensitization of society in a way to accept and not to reject the diversity resulting from disability