A experiência familiar no cuidado com gastrostomia em pacientes pediátricos

Abstract

Objective: To describe the experience of family caregivers in the process of caring for CSHCN with gastrostomy, identifying vulnerabilities and key processes of family resilience. Method: This is a qualitative descriptive exploratory study, which was conducted with 10 family caregivers through semi-structured interviews and application of a sociodemographic questionnaire. The inclusion criteria chosen were being over 18 years old, an exclusive family caregiver of children aged between one and 12 years old, using a gastrostomy for at least 6 months, who underwent follow-up at a public hospital in the capital of Mato Grosso do Sul, and who could live in the city or nearby regions. The exclusion criteria were family members of children who stopped using the device during the data collection process, and the family member being a health professional. Data analysis followed the steps of Content Analysis (CA) proposed by Bardin, which made it possible to identify the central categories about the family experience in caring for children with gastrostomy. Results: The analysis allowed the identification of three main categories: (1) Reacting to the New Imposed Reality - revealing the behavior of families when exposed to the gastrostomy procedure; (2) Reconstructing Meanings - addressing the scenario after experience and adaptation to the device; (3) Processing (Mis)information: Welcoming Helplessness - identifying the development of a relationship between health professionals and families and intrafamily relationships. Final Considerations: The study showed that, despite the challenges faced at the beginning of the process, families strengthen their resilience and care skills throughout the journey with the child. Continuous support, both emotional and technical, from health professionals is essential to promote the safety of the family caregiver in the management of gastrostomy and to ensure the quality of life and health of the child. This work reinforces the importance of interventions by professionals who welcome and empower families, offering effective interventions during the process of adapting to care management.