Affiliation:
1. Department of Nursing Science Faculty of Health and Social Sciences, Bournemouth University Bournemouth UK
2. Lewis‐Manning Hospice Care Poole UK
Abstract
AbstractBackgroundLiver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom.MethodA systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649).ResultsOf 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature.ConclusionThis review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life.Patient and Public ContributionAn online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic.
Subject
Public Health, Environmental and Occupational Health
Reference57 articles.
1. Burden of liver diseases in the world
2. Office for National Statistics. Official statistics liver disease profiles. March2023. Accessed May 11 2023.https://www.gov.uk/government/statistics/liver-disease-profiles-march-2023-update/liver-disease-profiles-march-2023-update
3. Office for National Statistics. Deaths registered in England and Wales: [online].2022. Accessed May 10 2023.https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/datasets/deathsregisteredinenglandandwalesseriesdrreferencetables
4. Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved
5. Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis