Healthcare (Basel, Switzerland) · 2026
Becoming a Different Person: Living with Hepatic Encephalopathy as a Condition in Everyday Life-A Qualitative Explorative Study.
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Hamberg Marie Louise S, Werge Rikke Parsberg, Lauridsen Susanne Vahr, Thomsen Thora Skodshøj
Аннотация
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.
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.