Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.
de Wolf-Linder, Susanne
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Johnson, H., Ogden, M., Brighton, L. J., Etkind, S., Oluyase, A. O., Chukwusa, E., Yu, P., et al. (2021). Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.. Palliative medicine, 35 (1), 151-160. https://doi.org/10.1177/0269216320956819
BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
Humans, Palliative Care, Focus Groups, Communication, Qualitative Research, Hospice and Palliative Care Nursing
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership and Applied Health Research and Care South London (NIHR CLAHRC South London) Involvement Activity Funding and Research Capability Funding at King’s College Hospital NHS Foundation Trust. Support was also provided by the NIHR Applied Research Collaboration (ARC) South London at King’s College Hospital Foundation Trust. LJB is supported through a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017-10-009). CE is funded by HEE/NIHR Senior Clinical Lectureship. The views expressed in this publication are those of the author(s) and not necessarily those of the funders, the NHS, the National Institute for Health Research or the Department of Health.
External DOI: https://doi.org/10.1177/0269216320956819
This record's URL: https://www.repository.cam.ac.uk/handle/1810/313412
Attribution 4.0 International
Licence URL: https://creativecommons.org/licenses/by/4.0/