The hospital as the only place to live: Long-term hospital stays in a tertiary hospital for infectious diseases in Manaus, Brazilian Amazon.

Abstract

Long-term hospital stays represent a growing challenge for health systems, especially in tertiary hospitals that receive patients with clinically complex pathologies. This phenomenon is often related to social factors, such as abandonment, absence of caregivers and fragility of support networks, and the difficulty of relocation to intermediary institutions. This study aimed to understand the experiences and perceptions of family caregivers and health professionals about prolonged hospital stays in a referral hospital for tropical and infectious diseases in the Brazilian Amazon. This is a qualitative, exploratory study that is based on interviews with ten health professionals and eight family members of patients hospitalized for more than or equal to 180 days. The data were analyzed via thematic analysis. The analyzed cases show an overlap of vulnerabilities, including comorbidities, HIV/AIDS infection and fragility in family ties. The stigma associated with HIV/AIDS and the families' poor financial conditions hinder care after discharge, making the hospital the only possible space for these patients to stay. The analysis identified five major themes: (1) social hospitalization and institutional dependence; (2) dynamics of family and social ties; (3) routine care and impacts on the lives of caregivers; (4) clinical complexity and obstacles that impede hospital discharge; and (5) the need for public policies and infrastructure. It is concluded that, in the absence of alternatives outside the hospital and effective intersectoral policies, the hospital begins to play a role beyond that of clinical care, and functions as a place to stay and the only space for social bonds for individuals in situations of extreme social vulnerability.