Family perceptions of prolonged hospitalization for children with complex chronic conditions: Between losses and adaptations in an uncertain future

Abstract

The aim of this study was to understand the family perception and emotional impacts on caregivers of children with chronic conditions who remained hospitalized in intensive care units for an extended period. A qualitative, descriptive-exploratory study, grounded in symbolic interactionism, was conducted with 10 primary caregivers of children with long-term experience in a Brazilian intensive care unit. Interviews were conducted, either remotely or in person, and were analyzed using thematic content analysis supplemented by lexical analysis. Through symbolic interactions, it was observed that families had to reorganize themselves in the face of a context filled with insecurities and permeated by losses. These losses begin with the diagnosis of the chronic condition and are intensified by prolongated hospitalization, which brings numerous uncertainties about the child’s future, leading to a reorganization of life. Over time, some families experience discharge and must adapt to home care; others remain hospitalized, continuing to face impactful experiences; and some have lost their child, having to reorganize themselves during grief. This study highlights the urgent need to reflect on ways to care for families, aiming to reduce the impacts experienced during prolonged hospitalizations and to empower them in the care of the child.