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

Authors: Beresford, C., Baron, S., Dominey, J., Gelling, L., Gray, Y., O'Donovan, C., Rahman, M., Ramshaw, S., Williams, W.R.

Journal: Chronic Illness

Publication Date: 01/01/2026

eISSN: 1745-9206

ISSN: 1742-3953

DOI: 10.1177/17423953261491391

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.

Source: Scopus

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

Authors: Beresford, C., Baron, S., Dominey, J., Gelling, L., Gray, Y., O'Donovan, C., Rahman, M., Ramshaw, S., Williams, W.R.

Journal: Chronic Illn

Publication Date: 13/10/2026

Pages: 17423953261491391

eISSN: 1745-9206

DOI: 10.1177/17423953261491391

Abstract:

ObjectivesLiver 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.MethodsUsing 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.ResultsTwenty-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.DiscussionThe 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.

Source: PubMed

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

Authors: Beresford, C., Baron, S., Dominey, J., Gelling, L., Gray, Y., O'Donovan, C., Rahman, M., Ramshaw, S., Williams, W.R.

Journal: CHRONIC ILLNESS

Publication Date: 13/10/2026

eISSN: 1745-9206

ISSN: 1742-3953

DOI: 10.1177/17423953261491391

Source: Web of Science

Empowerment in Advanced Liver Disease: UK Experiences of Care from the Perspectives of People with Lived Experience, Carers and Healthcare Professionals

Authors: Baron, S., Beresford, C., Dominey, J., Gelling, L., Gray, Y., O'Donovan, C., Rahman, M., Ramshaw, S., Williams, W.

Journal: Chronic Illness

Publication Date: 03/02/2026

Publisher: SAGE

eISSN: 1745-9206

ISSN: 1742-3953

Source: Manual