Becoming a Different Person: Living with Hepatic Encephalopathy as a Condition in Everyday Life-A Qualitative Explorative Study

BACKGROUND/OBJECTIVES: Patients with liver cirrhosis experience a high symptom burden and low Health-Related Quality of Life (HR-QoL). Hepatic encephalopathy (HE) occurs in 75% of patients with cirrhosis but is sparsely described from the patient's perspective. Due to recurrent cognitive impairment, a marginalized diagnosis, and a healthcare discourse emphasizing involvement and self-responsibility, these patients appear vulnerable when navigating a complex healthcare system. This study aims to explore how patients with chronic liver disease experience living with HE as a recurring condition, and how these patients are met by healthcare professionals (HCPs).

METHODS: Eight semi-structured interviews were conducted with four patients and four HCPs. Data were analyzed thematically following Braun and Clarke's six-step analysis within the framework of Interpretive Description. The study was reported according to COREQ Guidelines.

RESULTS: The overarching theme "Becoming a different person" captured the profound identity changes experienced by patients. Three main themes emerged: 1. change and loss-in identity and self-understanding, in relationships, in relation to losing control, and in relation to experiencing isolation; 2. new paths-mental and practical alternative strategies; 3. HE in clinical encounters-requiring empathy, flexibility, and continuity. Stigma related to cirrhosis and its association with alcohol further intensified patients' vulnerability.

CONCLUSIONS: HE is experienced as a transformative and isolating condition, deeply affecting patients' autonomy and social roles through vulnerability. The clinical encounter is shaped by the cognitive impairment due to HE, requiring tailored and sensitive care.