<b>Ways of weaving networks for the care by the family that is experiencing the chronic condition by adrenoleukodystrophy</b> - doi: 10.4025/cienccuidsaude.v11i1.18872

Abstract

In the search for health care caused by chronic condition, the family builds paths weaving networks that articulate with the family dynamics, so that the right to health can be guaranteed. Thus, we aimed at understanding how the family is affected in its daily life by the experience of coping with Adrenoleukodystrophy in a child, as well as the networks for the care woven by the family to get support in this experience. A methodological approach History of Focal Life, presented by the Depth Interview and the observation for the composition of the data corpus. We also used the designs of the spatial and temporal trajectory and of the networks for the care as analyzing tools of the Therapeutic Itinerary of this family. The results showed that, in the weaving of the networks, public and private spheres of different dimensions are placed in movement by the family in the perspective of having the permanent and constantly renewed care that the child’s condition demands. We highlight how the family was affected when facing the difficulties found in receiving effective answers for their needs, which leads to the erosion of their own care potentials.