Making decisions on health care for children/adolescents with complex chronic conditions: A review of the literature

Abstract

The profile of pediatric care has gone through changes in Brazil and in the world. This process becomes more visible in surveys that deal with hospital admission or specialized outpatient care data. This fact leads us to the idea that it is in such spaces that these children and subjects who care for them are more visible and negotiate decisions. We aim to perform a state of the art literature review on decision making discussions and definitions, analyzing the current research in light of the theoretical Mol perspectives on the actors’ logics of chronic diseases care; And the perspective of care goods exchanges in the dialogue between Martins and Moreira, triggering the Theory of Gift. The synthesis of the literature shows that decision making may be understood as a care planning process in which family, patients and health professionals are involved, and is linked to the family-centered care model. In terms of difficulties, we point out the prevalence of a dynamic that favors a criticizable choice because of the risks of inequality, such as the lack of discussion on the options and the actuation of the family mostly in times of difficult decisions.