EXPERIENCES OF FAMILY MEMBERS ACCOMPANYING ADULTS WITH ADVANCED CHRONIC ILLNESS IN EMERGENCY CARE NETWORK SERVICES

Abstract

Introduction: Non-communicable chronic diseases increase the demand for emergency services, requiring more humanized attention to family members during hospitalization. Objective: To understand the experiences of family members accompanying adults with advanced chronic disease in health emergency care network services. Method: This is a qualitative research conducted between June and August 2024 with family members accompanying people with advanced chronic disease in the Emergency Department of a municipality in southern Brazil. This was the initial setting, in addition to other hospital services and the participants’ homes. Data production occurred through semi-structured interviews with four family members, simple observation, and field notes. The data were managed using Atlas.ti and subjected to directed content analysis, being interpreted through Kleinman’s concept of illness narratives. The study was approved by Research Ethics Committee. Results: The experiences and narratives surrounding illness revealed similar perceptions among family members, marked by changes in daily routines and caregiving responsibilities. A sense of being welcomed by the healthcare teams stood out, despite difficulties with continuity of care within Primary Health Care services and the precarious physical conditions in the Emergency Department. Family members particularly highlighted the emotional support provided, evidenced by the respect and attentive listening offered by professionals. The team was  described as attentive and sensitive to the needs of family members, which contributed to strengthening the bond with caregivers and improving the experience lived in this context. Conclusion: The importance of more adequate support was highlighted, emphasizing the positive experiences reported by family members and demonstrating how small actions can significantly improve the quality of these experiences.