The everyday life of families who experience the chronic condition of sickle-cell anemia

Abstract

doi: 10.5216/ree.v15i2.17687 - http://dx.doi.org/10.5216/ree.v15i2.17687

ABSTRACT

The objective of this study was to understand the everyday life of families who experience the chronic condition of sickle-cell anemia, emphasizing their dynamics, the form they organize to seek, produce and manage the necessary care. This Case Study was performed using Focal Life History by means of in-depth interviews performed between December/2010 and October/2011. We learned that the families’ everyday life is severely affected due to the need of continuous and renewed care to adolescents. In this process, families establish networks that may provide them with some sustainability and support; however, we found that health services and professionals have a specific and participation in the care to the patient and family who experience sickle-cell anemia. Therefore, understanding the everyday life of family care supports the a more effective design of professional practices, based on comprehensive care, which is able to meet the intense and mutable needs of each adolescent.

Descriptors: Anemia, Sickle Cell; Chronic Disease; Family; Social Support; Nursing.