The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis

Abstract

BackgroundLiver 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.

Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease

“…This does not just apply to PI though, but is also apparent in research more generally. For example, liver disease is more common in certain ethnic groups [31], but in the systemised review [10], it was found to be mostly white people who participated in the studies. The reflections presented in this paper demonstrate that a strength of the PI in this research is the inclusion of individuals from diverse backgrounds and life experiences.…”

“…None of these individuals knew each other before the meeting. A 90‐minute workshop was held to discuss the findings of the systematic review [10] and to consider the development of this research.…”

“…There has been little focus on the experiences of care received by people with advanced liver disease and it has been recommended that more research is needed to explore the perspectives of people receiving care [9]. A recently published literature review conducted as part of this study found variations in the care experiences of people in the United Kingdom with advanced liver disease towards the end of life, an overall lack of access to specialist palliative care services and lack of clarity about when the care of people with liver disease becomes palliative or end of life [10]. Conversely, when services for people with liver disease were reported to be person‐centred, people's experiences were found to be more empowering.…”

“…Other PhD researchers have demonstrated dedication to effectively implementing PI into their research to enhance the quality and relevance of the doctoral research [13, 14]. In liver disease, Hull et al [15] describe the increasingly important role of PI in the development and implementation of research, yet PI was sometimes found to be missing from studies in the systematic review undertaken as part of this project [10], reflecting Ocloo et al's [16] argument that there are still considerable barriers to PI that need to be addressed.…”