The role of family in treatment plans and pediatric inpatient care in complex chronic health conditions

Abstract

This article examines the family’s role and the interaction with professionals when developing treatment plan and providing care for children with complex chronic health conditions in a pediatric unit of medium and high complexity, reference hospital in Rio de Janeiro state. Through a qualitative research, participant observation and interviews with patient’s mothers and managers analyzed based on the French psychosociology were performed. The results point out limits in the inclusion of family members in decisions and directions of treatment. Among the professionals, we found different attitudes, in which communication with families by using irregular informational communication intensified when faced with difficult decisions to be made was predominant. In some situations, hospitality to the family member was observed. Little of the psychosocial context was considered. Mothers became responsible for technical tasks of the nursing routine, to which they added the zeal and affection inherent in mothering. Recognizing the combination between technical and mother’s functions favors the mother’s vitality and autonomy, but also causes anguish and considerable psychological pressure. Then, they were an instrument in care, reducing their singular space as subject.