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 Background Liver 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 li...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2024-02-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13893 |
| _version_ | 1797296179916046336 |
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| author | Cathy J. Beresford Leslie Gelling Sue Baron Linda Thompson |
| author_facet | Cathy J. Beresford Leslie Gelling Sue Baron Linda Thompson |
| author_sort | Cathy J. Beresford |
| collection | DOAJ |
| description | Abstract Background Liver 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. Method A 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). Results Of 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. Conclusion This 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 Contribution An 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. |
| first_indexed | 2024-03-07T21:59:39Z |
| format | Article |
| id | doaj.art-fb741ffdc0ee4263a32691ad11043627 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-03-07T21:59:39Z |
| publishDate | 2024-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-fb741ffdc0ee4263a32691ad110436272024-02-24T07:00:39ZengWileyHealth Expectations1369-65131369-76252024-02-01271n/an/a10.1111/hex.13893The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesisCathy J. Beresford0Leslie Gelling1Sue Baron2Linda Thompson3Department of Nursing Science Faculty of Health and Social Sciences, Bournemouth University Bournemouth UKDepartment of Nursing Science Faculty of Health and Social Sciences, Bournemouth University Bournemouth UKDepartment of Nursing Science Faculty of Health and Social Sciences, Bournemouth University Bournemouth UKLewis‐Manning Hospice Care Poole UKAbstract Background Liver 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. Method A 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). Results Of 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. Conclusion This 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 Contribution An 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.https://doi.org/10.1111/hex.13893empowerment/disempowermentend‐of‐lifeexperiencesliver diseasepalliative care |
| spellingShingle | Cathy J. Beresford Leslie Gelling Sue Baron Linda Thompson The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis Health Expectations empowerment/disempowerment end‐of‐life experiences liver disease palliative care |
| title | The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis |
| title_full | The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis |
| title_fullStr | The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis |
| title_full_unstemmed | The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis |
| title_short | The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis |
| title_sort | experiences of people with liver disease of palliative and end of life care in the united kingdom a systematic literature review and metasynthesis |
| topic | empowerment/disempowerment end‐of‐life experiences liver disease palliative care |
| url | https://doi.org/10.1111/hex.13893 |
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