Growing palliative and end-of-life care research in the United Kingdom: Findings from a mixed methods survey
7 affiliations
- 1Clinical Psychology, School of Health in Social Science, University of Edinburgh, Scotland, United Kingdom
- 2Department of Psychology, School of Philosophy, Psychology, & Language Sciences, University of Edinburgh, Scotland, United Kingdom
- 3Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom
- 4Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom
- 5School of Nursing and Midwifery, Queen’s University Belfast, Belfast, United Kingdom
- 6epartment of Palliative Medicine, Velindre University NHS Trust, Wales, United Kingdom
- 7Marie Curie Hospice Edinburgh, Scotland, United Kingdom
Abstract
Background: Globally the number of people with an advanced progressive illness is increasing. Research is essential to inform policy, services and clinical practice to meet their needs. We investigated researcher perspectives on conducting palliative and end-of-life care research in the United Kingdom and what is needed to grow this field. Methods: We conducted a mixed-methods online survey of individuals conducting palliative and end-of-life care research in an academic institution or any care setting. Quantitative data were analysed descriptively, while qualitative data from open-ended questions were analysed using a Framework Method. Results: Overall, 256 people involved in palliative and end-of-life care research responded (80% female, 85% white, 83% aged over 35). Most worked at a university (79%), 67% worked full-time, 47% had a permanent contract and 9% were clinical academics. Many reported positive aspects of their working environment, such as a collaborative culture and research rigour. Nearly all (90%) wished to continue palliative and end-of-life care research during the next five years, however only 69% believed this was likely. Most common barriers were lack of funding (56%), heavy workload (42%), job insecurity (39%), and limited career progression opportunities (33%). To sustain and grow research activity, participants identified a need for: (i) Greater visibility of palliative and end-of-life care as a vital research field; (ii) Increased funding to support those undertaking palliative and end-of-life care research, across career stages and disciplines; (iii) Increased opportunities for collaboration and networking; (iv) Protected research time, and (v) Support to build a more diverse research community. Conclusions: Despite a committed workforce, palliative and end-of-life care research lacks visibility and funding. Increased visibility through knowledge exchange and impact activities, alongside more targeted research funding opportunities, are essential to build research capacity for the future.
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BibTeX
@article{okamoto2026growing,
title = {{Growing palliative and end-of-life care research in the United Kingdom: Findings from a mixed methods survey}},
author = {Ikumi Okamoto and Alice Jin and Simon Noah Etkind and Donna Wakefield and Tracey McConnell and Anthony Byrne and Yesha Viren Dharamshi and Fliss Murtagh and Anne Finucane},
journal = {PLOS One},
year = {2026},
month = sep,
doi = {10.1371/journal.pone.0357024},
url = {https://doi.org/10.1371/journal.pone.0357024},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Growing palliative and end-of-life care research in the United Kingdom: Findings from a mixed methods survey
AU - Ikumi Okamoto
AU - Alice Jin
AU - Simon Noah Etkind
AU - Donna Wakefield
AU - Tracey McConnell
AU - Anthony Byrne
AU - Yesha Viren Dharamshi
AU - Fliss Murtagh
AU - Anne Finucane
PY - 2026
DA - 2026/09/15
JO - PLOS One
DO - 10.1371/journal.pone.0357024
UR - https://doi.org/10.1371/journal.pone.0357024
AB - Background: Globally the number of people with an advanced progressive illness is increasing. Research is essential to inform policy, services and clinical practice to meet their needs. We investigated researcher perspectives on conducting palliative and end-of-life care research in the United Kingdom and what is needed to grow this field. Methods: We conducted a mixed-methods online survey of individuals conducting palliative and end-of-life care research in an academic institution or any care setting. Quantitative data were analysed descriptively, while qualitative data from open-ended questions were analysed using a Framework Method. Results: Overall, 256 people involved in palliative and end-of-life care research responded (80% female, 85% white, 83% aged over 35). Most worked at a university (79%), 67% worked full-time, 47% had a permanent contract and 9% were clinical academics. Many reported positive aspects of their working environment, such as a collaborative culture and research rigour. Nearly all (90%) wished to continue palliative and end-of-life care research during the next five years, however only 69% believed this was likely. Most common barriers were lack of funding (56%), heavy workload (42%), job insecurity (39%), and limited career progression opportunities (33%). To sustain and grow research activity, participants identified a need for: (i) Greater visibility of palliative and end-of-life care as a vital research field; (ii) Increased funding to support those undertaking palliative and end-of-life care research, across career stages and disciplines; (iii) Increased opportunities for collaboration and networking; (iv) Protected research time, and (v) Support to build a more diverse research community. Conclusions: Despite a committed workforce, palliative and end-of-life care research lacks visibility and funding. Increased visibility through knowledge exchange and impact activities, alongside more targeted research funding opportunities, are essential to build research capacity for the future.
SN - 1932-6203
ER -