Tecendo vivências e sentidos do câncer infantil : família, doença e redes de apoio social em Natal-RN

Abstract

This paper discusses the experiences related to the treatment of children´s cancer which had children, their mothers and families as their main characters. They were mainly originated from areas in the countryside and urban poor areas in the State of Rio Grande do Norte. The non-governmental organization Grupo de Apoio à Criança com Câncer (GACC) was the privileged ethnographic location. In this setting, the mother, which was called acompanhante (companion), and the children, defined as pacientes (patients), were often sheltered in reason of therapeutic practices and the treatment undertaken by children in a nearby hospital. This study aims to focus on the therapeutic itinerary, beyond the children´s suffering, dealing with the family as a whole, since the moral values from these popular families imply the complete involvement of the family in relation to the illness and its treatment. Therefore, it is experienced as a family problem. We also intend to understand the construction of meanings to the illness, dealing with the ideological continuity in the relationships between the families and the GACC. These meanings were built in the intersection of these two spheres, which refer particularly to medical, religious and emotional explanations. Ethnographic methods were applied in this research at the entity and another social contexts, such as the family households. I also tried to retrieve the process of treatment outside the GACC, visiting the family context, when doing dense interviews or just having conversations with informants. It was found that the GACC, as a non-governmental organization, generates a negotiation of identities, which develops, then, through the family as a whole, but also through the child and especially the mother, affecting, in some way, their internal organization. Furthermore, the meanings of the experience of illness appeared to be shaped by the family sphere as well as by the logic of public health structures