Experiences of care in advanced liver disease
Research type
Research Study
Full title
Care experiences in decompensated advanced liver disease: Perspectives of people with lived experience, carers and professionals.
IRAS ID
331914
Contact name
Cathy Beresford
Contact email
Sponsor organisation
Bournemouth University
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
Liver disease is an increasingly common cause of morbidity and mortality in the United Kingdom. In the advanced decompensated stage, individuals experience a range of challenging symptoms, often requiring multiple clinic appointments and hospital admissions. Although apparent in all age groups, liver disease particularly affects adults of working age (Office for Health Improvement and Disparities 2022). Liver disease can be challenging to manage and is associated with psychological and social issues for the individuals living with it, and for their families. The primary causes of liver disease are alcohol use, being overweight and viral hepatitis (Office for National Statistics 2023).
People need support to manage their symptoms and cope with their illness. It is increasingly recognised that palliative care should be offered to individuals earlier in the disease journey (Hudson 2019), but a systematic literature review conducted as part of this project found variations in clinical practice. While researchers have explored the lived experience of liver disease (Kimbell 2014), little focus has been paid to understanding the care experiences of individuals in depth.
In this study, a Constructivist Grounded Theory approach (Charmaz 2014) will be used to develop theory to understand the care experiences of people with decompensated advanced liver disease. This will be through semi-structured interviews with individuals who have lived experience, carers and professionals. A public involvement group has been set up to embed public involvement into the project, which is crucial to the research process.
REC name
West of Scotland REC 4
REC reference
23/WS/0150
Date of REC Opinion
26 Sep 2023
REC opinion
Favourable Opinion