Harrison, M. orcid.org/0000-0001-9874-921X, Gardiner, C., Taylor, B. et al. (2 more authors) (2021) Understanding the palliative care needs and experiences of people with mesothelioma and their family carers : an integrative systematic review. Palliative Medicine, 35 (6). pp. 1039-1051. ISSN 0269-2163
Abstract
Background:
People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness.
Aim:
To describe the palliative care needs and experiences of people with mesothelioma and their family carers.
Design:
Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115).
Data sources:
MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers.
Results:
The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients.
Conclusion:
The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2021 The Author(s). This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-s/nam/open-access-at-sage). |
Keywords: | Mesothelioma; palliative care; terminal care; family caregivers; review |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 15 Apr 2021 10:46 |
Last Modified: | 18 Feb 2022 11:42 |
Status: | Published |
Publisher: | SAGE Publications |
Refereed: | Yes |
Identification Number: | 10.1177/02692163211007379 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:172941 |