Empowerment in advanced liver disease: UK experiences of care from the perspectives of people with lived experience, carers and healthcare professionals.

Abstract

Objectives Liver disease is a leading cause of morbidity and mortality, with alcohol-related liver disease, metabolic-associated steatotic liver disease, and viral hepatitis comprising most cases in the UK. Advanced liver disease presents challenges due to unpredictable disease trajectories, high symptom burden, psychosocial impacts, and stigma. This study aimed to develop an explanatory theory of care experiences in decompensated advanced liver disease from the perspectives of individuals living with the condition, carers, and healthcare professionals, with public involvement embedded throughout. Methods Using Charmaz's Constructivist Grounded Theory methodology, semi-structured interviews were conducted across the UK with individuals with advanced liver disease, carers, and healthcare professionals. Data collection and analysis occurred concurrently using constant comparison, focused coding, memoing, and theoretical sampling. Results Twenty-four people participated in interviews. Analysis generated the Empowerment Continuum, an explanatory theory conceptualising empowerment as a dynamic, relational process shaped by personal, relational, and systemic factors. Five conceptual categories informed the theory: self-care, navigating healthcare services, healthcare professionals’ contributions, carers’ involvement and support, and information and communication. Discussion The Empowerment Continuum provides a framework for understanding care experiences in advanced liver disease. Supporting empowerment requires collaborative, accessible, and person-centred approaches involving people with liver disease, carers, and healthcare professionals.