Vivências de famílias de crianças com estomia intestinal de eliminação

Abstract

An ostomy is a surgical procedure usually performed on children with certain conditions, such as congenital anomalies, anorectal anomalies and congenital aganglionic megacolon. Studies have highlighted the many difficulties parents face in adjusting to the post-operative condition. It can create feelings from denial to fear and anxiety, as the family's assistance is critical to meeting the child's needs, so parents require help to obtain new skills. The purpose of this study is to understand the experiences of families of children who live with a temporary or permanent ostomy. This is a descriptive, exploratory qualitative research study conducted with six families who have experienced or are currently experiencing the care of a child with an ostomy. These families were selected from a survey using medical records of patients who underwent an ostomy in the medical facilities of the University Hospital of Santa Maria from 2015 to 2021. Data was collected remotely via a digital platform (Google Meet) through audio-recorded interviews. They were fully transcribed afterwards and analyzed through inductive thematic analysis. Based on the analysis, the categories “Illness and treatment: from hospitalization to the impact on the family” and “Changes and challenges for care at home and sources of support" were created. The decision to proceed with the ostomy was found to bring discomfort, stress, worry, and anxiety to the families, because it was an unexpected event in a period of difficult acceptance. After the initial reaction to the decision, the families presented behaviors consistent with the adaptation process and developed positive expectations for their children’s hospital discharge as their condition evolved. At home, there was a significant reorganization of the family members' routines, with the mother having most of the workload of caring for the child. The creation of a support network contributed to the well-being of the family. Religious beliefs also helped to keep them together. An ostomy reversal was seen as a synonym for freedom and received with relief by the nuclear family. This study shows that the experience of families of children living with an ostomy is permeated by moments of anticipation and characterized as frightening within the family scenario since it defies the expected natural course of life. Family members restructure their care dynamics at home to favor the child's well-being, emphasizing the importance of building a support network.