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

  • Marie Louise S. Hamberg*
  • , Rikke Parsberg Werge*
  • , Susanne Vahr Lauridsen
  • , Thora Skodshøj Thomsen
  • *Corresponding author for this work
  • Copenhagen University Hospital
  • Hvidovre Hospital
  • The Parker Institute

Research output: Contribution to journalJournal articleResearchpeer-review

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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 languageEnglish
Article number874
JournalHealthcare (Switzerland)
Volume14
Issue number7
Number of pages18
ISSN2227-9032
DOIs
Publication statusPublished - 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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