Taylor, B. orcid.org/0000-0003-4090-3047, Tod, A. orcid.org/0000-0001-6336-3747, Gardiner, C. orcid.org/0000-0003-1785-7054 et al. (8 more authors) (2023) Mesothelioma patient and carer experience research: A research prioritisation exercise. European Journal of Oncology Nursing, 63. 102281. ISSN 1462-3889
Abstract
Objectives
Incidence of mesothelioma worldwide is growing and the UK reports the highest global incidence. Mesothelioma is an incurable cancer with a high symptom burden. However, it is under researched when compared to other cancers. The aim of this exercise was to identify unanswered questions about the mesothelioma patient and carer experience in the UK and to prioritise research areas of most importance through consultation with patients, carers and professionals.
Materials and methods
A virtual Research Prioritisation Exercise was conducted. This involved a review of mesothelioma patient and carer experience literature to identify research gaps and a national online survey to identify and rank research gaps. Following this, a modified consensus method with mesothelioma experts (patients, carers and professionals from healthcare, legal, academic and volunteer organisations) was undertaken to reach a consensus regarding mesothelioma patient and carer experience research priorities.
Results
Survey responses were received from 150 patients, carers and professionals and 29 research priorities were identified. During consensus meetings, 16 experts refined these into a list of 11 key priorities. The five most urgent priorities were symptom management, receiving a mesothelioma diagnosis, palliative and end of life care, treatment experiences, barriers and facilitators to joined up service provision.
Conclusion
This novel priority setting exercise will shape the national research agenda, contribute knowledge to inform nursing and wider clinical practice and ultimately improve the experiences of mesothelioma patients and carers.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2023 Published by Elsevier Ltd. This is an author produced version of a paper subsequently published in European Journal of Oncology Nursing. Uploaded in accordance with the publisher's self-archiving policy. Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/). |
Keywords: | Caregivers; Clinical nurse specialist; Clinical practice; Consensus; Grey literature; Mesothelioma; Nursing; Patient experience; Research prioritisation; United Kingdom; Humans; Caregivers; Mesothelioma; Terminal Care; Palliative Care; Patients |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Health Sciences School (Sheffield) The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Nursing and Midwifery (Sheffield) The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Medicine and Population Health The University of Sheffield > Faculty of Social Sciences (Sheffield) > Department of Sociological Studies (Sheffield) |
Funding Information: | Funder Grant number MESOTHELIOMA UK CHARITABLE TRUST UNSPECIFIED |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 07 Feb 2024 13:19 |
Last Modified: | 10 Feb 2024 01:13 |
Status: | Published |
Publisher: | Elsevier BV |
Refereed: | Yes |
Identification Number: | 10.1016/j.ejon.2023.102281 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:208911 |
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