ITINERÁRIO TERAPÊUTICO NA DOENÇA RARA E A IMPORTÂNCIA DA ENFERMAGEM NESSE PROCESSO

Abstract

Objective: To understand the therapeutic itinerary of individuals with rare diseases, from the onset of symptoms to diagnosis, in addition to the importance of nursing in this process. Methods: This is a qualitative, descriptive, exploratory study, carried out through the methodology of oral history. Data collection took place between September and October 2020, and was carried out through telephone calls, using a standard script, in which six individuals with rare diseases participated. Results: It took individuals between 1 month and 43 years to discover the diagnosis, with the main difficulty reported being the lack of knowledge of the disease by health professionals, with family support identified as a facilitator. In relation to nursing care, some participants highlighted this care and others did not. Conclusion: The therapeutic itinerary of patients with rare diseases is varied, showing the complexity of these diseases and that, for this reason, health teams generally do not know how to deal with rare patients, thus demonstrating the greater need to deepen and study this theme.