Experience of Individuals Living with Decompensated Cirrhosis

Persons with decompensated cirrhosis are influenced not only physically but also psychologically and socially, as they are repeatedly hospitalized and discharged due to various physical symptoms. This study aimed to clarify the experiences of individuals with decompensated cirrhosis. Six individuals with cirrhosis after chronic hepatitis, treated as outpatients or inpatients at the Hepatology Department of two medical facilities by full-time hepatologists, were included in semi-structured interviews. The results were analyzed individually and comprehensively using a qualitative synthesis method (KJ method). The management of individuals with decompensated cirrhosis included "continued management" and "management that prioritizes daily life." Management was supported by two aspects: "recuperation supported by a connection with others" and "recuperation far from others." Furthermore, despite managing their disease and being conscious of the gradual progression of their condition, participants with decompensated cirrhosis oscillated between their "reluctance to accept life with illness" and "unrelieved anxiety about their future"; their "elusive body" influenced their management and emotions in their daily living. Although individuals with decompensated cirrhosis have managed their illness for many years, they may not fully understand the evolving physical changes in their bodies. Additionally, they may experience growing concerns about the future.