Significados produzidos pelos cuidadores de crianças com doenças raras sobre a trajetória de cuidado em saúde: Um estudo qualitativo

Abstract

Introduction: Caregivers of children with Rare Diseases face difficulties in providing adequate care for their children, despite the existence of public policies aimed at these patients. Objective: Build a theorization about the meanings produced by caregivers of children with Rare Diseases in the health care trajectory. Methodology: A qualitative study was carried out using a Grounded Theory approach and the theoretical framework of Symbolic Interactionism. Data were collected at the Dental Hospital of the Federal University of Uberlândia through semi-structured, audio-recorded interviews and analyzed using Grounded Data Theory. Results: Eight interviews were carried out with mothers of children with Rare Diseases. The analysis of the qualitative material produced made it possible to identify the meanings produced in the care trajectories and the organization into five categories: 1) Unsatisfactory health network; 2) Context of doubts and fears; 3) Distress in the waiting time for care; 4) Relief and despair at the diagnosis; 5) Integrated dental care. The meaning of an unsatisfactory healthcare network was defined as the central category. Conclusion: The central meaning is an unsatisfactory public health network for dealing with Rare Diseases, whether in the structural aspect of the service network or in professional attitudes. In the context of this study, dental care was considered efficient.