Caring of children with special health care needs: challenges to families and pediatric nursing

Abstract

Children with special health care needs (CSHN) demand continuous and complex special health care at home. Qualitative research was applied to describe and discuss the challenges determined for these caring to CSHN’s caregivers at home. Four female caregivers of the CSHN in a room-in at teaching hospital in the southern Brazil on December of 2004 were interviewed and participated in group dynamics of the creative-sensitive method. And charts of these children were analyzed. French discourse analysis was applied to the empirical data. The caregivers unveil the complex nature of the CSHN’S care and the relevance to do that based on knowledge and practices which are no included in their existential daily life. This caring was characterized as a survival care, (super) natural and singular due to it complexity, high demand and dedication. As a priority, all care actions were in order to preserve of the child’s life. In conclusion, it is necessary to include these relative caregivers in the nursing care, aiming to amplify the negotiation power of these women beyond the survival of them. In this way, the CSHN present challenges to pediatric nursing due to care demands in different sceneries such as hospital, family and community