Abstract Objective To identify how care for children with special health care needs and their families was addressed during training, from the perspective of future health professionals, and whether they feel prepared to provide such care. Methods A descriptive, cross-sectional, quantitative study with the participation of 141 graduating students from health courses at a federal university in São Paulo, using an online questionnaire. Results The topic was addressed theoretically (53.4%), practically (2.9%), and both theoretically and practically (43.7%) during undergraduate […]

Abstract Objective: To identify the information needs of family members regarding the care of children undergoing ventricular shunt. Methods: This survey-type study was carried out at a university hospital in the city of São Paulo from May 2022 to July 2023. Data collection included information on the indication of the device, signs of complications, surgical procedure, care, and guidance received. Results: Thirteen family members participated in the study. Around half (53.8%) of the participants were able to explain the indication […]

Abstract Objective To analyze the association of complex chronic conditions (CCC) with death in a pediatric intensive care unit and association with hemodynamic and ventilatory support, hospital infections and length of stay. Methods Retrospective cohort, between 2012 and 2017, with hospitalizations of children with CCC, considered an exposure variable. Poisson regression was used, with 5% significance and calculation of relative risk (RR). Results Of the 585 children, 51.3% had CCC. Encephalopathies, neoplasms and pneumopathies were more frequent. These children had […]

Abstract Objective Reveal the life history of children and adolescents living with chronic illness, based on their own reports. Methods This is a qualitative descriptive study. Thematic oral history was used as a method, and relied on the Atlas.ti 8.0 software to organize data. Results Eight participants were interviewed. Four categories were identified: Changes in life; School break; Impacts and Perspectives and dreams. It was revealed that participants know about the diagnosis and recognize its implications in their daily lives, […]

Abstract Cystic Fibrosis (CF) is a chronic disease with rigorous treatment and limited survival. Purpose of the study is to know the history of the family of the patient with CF who died. It is descriptive exploratory qualitative research. We interviewed four families. Analysis was by transcription and organization of reports; readings of the interviews, signaling the central ideas and identification of categories; and interpretation of information and cross between these and literature. Project was approved by the Ethics Committee […]

Abstract The diagnosis of cancer in a child is always an unexpected and devastating event for those people close to the child. Living this situation represents a long and unpredictable journey. This was the starting point for the development of an exploratory study, with the aim of deepening the knowledge about the person who assumes the responsibility of caring for such child. The study involved 17 people, of whom 16 were women (mothers) and one man (father). The data collection […]

Abstract Objective: To understand the strength parents find to cope with the disease and hospitalization of their child, affected by a chronic illness. Method: Qualitative and descriptive study, carried out at the Pediatric Clinic and Pediatric Infectious and Parasitic Disease nursing wards of a University Hospital in São Paulo City. Subjects were one father and four mothers/ companions who answered the question: “Tell me how you cope with the situation of having your child sick and hospitalized”. Results: The following […]