Adjusting to living with chronic liver disease among patients who continue regular healthcare visits for hepatocellular carcinoma surveillance: A grounded theory study

Abstract

Aim: To explore patients' process of living with chronic liver disease while continuing regular healthcare visits for hepatocellular carcinoma surveillance. Methods: Semistructured interviews and participant observations were conducted in this qualitative constructivist grounded theory study. The participants included 11 patients undergoing regular hepatocellular carcinoma surveillance every 1–6 months for 2–30 years. Data were analyzed using coding, memo-writing, theoretical sampling, and constant comparison. Results: The participants incorporated regular healthcare visits into their living cycle. The cycle's core comprised two categories (“inferring my liver condition” and “desiring status quo”). The cycle underwent a transition described by three phases (“seeking ways to live with my chronic liver disease,” “being overwhelmed by living with my chronic liver disease,” and “reconstructing my life to live with my chronic liver disease”). This transition involved adjusting to living with chronic liver disease while continuing regular healthcare visits. The relative importance of the cycle's core progressively shifted from “inferring my liver condition” to “desiring status quo.”. Conclusions: This study revealed the transition phases of patients' living cycles in adjusting to living with chronic liver disease while continuing regular healthcare visits. Understanding the different phases in which patients are and the psychological impact of healthcare visits can help them look forward to recuperative actions. Furthermore, patients who have a sense of ownership experience loneliness because of regular healthcare visits. A support system including nurses as part of regular hepatocellular carcinoma surveillance should be established to help ease patients' sense of loneliness by utilizing their sense of ownership.