Abstract
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.
| Original language | English |
|---|---|
| Article number | 874 |
| Journal | Healthcare (Switzerland) |
| Volume | 14 |
| Issue number | 7 |
| Number of pages | 18 |
| ISSN | 2227-9032 |
| DOIs | |
| Publication status | Published - Apr 2026 |
Bibliographical note
Publisher Copyright:© 2026 by the authors.
Keywords
- chronic liver disease
- hepatic encephalopathy
- identity
- interpretive description
- liver cirrhosis
- patient experience
- qualitative research
- stigma
- vulnerability
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