Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation

Johnson, Halle; Ogden, Margaret; Brighton, Lisa Jane; Etkind, Simon Noah; Oluyase, Adejoke O; Chukwusa, Emeka; Yu, Peihan; de Wolf-Linder, Susanne; Smith, Pam; Bailey, Sylvia; Koffman, Jonathan; Evans, Catherine J

doi:10.1177/0269216320956819

Please use this identifier to cite or link to this item: https://doi.org/10.21256/zhaw-20725

Publication type:	Article in scientific journal
Type of review:	Peer review (publication)
Title:	Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation
Authors:	Johnson, Halle Ogden, Margaret Brighton, Lisa Jane Etkind, Simon Noah Oluyase, Adejoke O Chukwusa, Emeka Yu, Peihan de Wolf-Linder, Susanne Smith, Pam Bailey, Sylvia Koffman, Jonathan Evans, Catherine J
et. al:	No
DOI:	10.1177/0269216320956819 10.21256/zhaw-20725
Published in:	Palliative Medicine
Volume(Issue):	35
Issue:	1
Page(s):	151
Pages to:	160
Issue Date:	11-Sep-2020
Publisher / Ed. Institution:	Sage
ISSN:	0269-2163 1477-030X
Language:	English
Subjects:	Palliative care; Consumer involvement; Evaluation research; Patient involvement
Subject (DDC):	610.73: Nursing
Abstract:	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.
URI:	https://digitalcollection.zhaw.ch/handle/11475/20725
Fulltext version:	Published version
License (according to publishing contract):	CC BY 4.0: Attribution 4.0 International
Departement:	School of Health Sciences
Organisational Unit:	Institute of Nursing (IPF)
Appears in collections:	Publikationen Gesundheit

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Johnson, H., Ogden, M., Brighton, L. J., Etkind, S. N., Oluyase, A. O., Chukwusa, E., Yu, P., de Wolf-Linder, S., Smith, P., Bailey, S., Koffman, J., & Evans, C. J. (2020). 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

Johnson, H. et al. (2020) ‘Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation’, Palliative Medicine, 35(1), pp. 151–160. Available at: https://doi.org/10.1177/0269216320956819.

H. Johnson et al., “Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation,” Palliative Medicine, vol. 35, no. 1, pp. 151–160, Sep. 2020, doi: 10.1177/0269216320956819.

JOHNSON, Halle, Margaret OGDEN, Lisa Jane BRIGHTON, Simon Noah ETKIND, Adejoke O OLUYASE, Emeka CHUKWUSA, Peihan YU, Susanne DE WOLF-LINDER, Pam SMITH, Sylvia BAILEY, Jonathan KOFFMAN und Catherine J EVANS, 2020. Patient and public involvement in palliative care research : what works, and why? A qualitative evaluation. Palliative Medicine. 11 September 2020. Bd. 35, Nr. 1, S. 151–160. DOI 10.1177/0269216320956819

Johnson, Halle, Margaret Ogden, Lisa Jane Brighton, Simon Noah Etkind, Adejoke O Oluyase, Emeka Chukwusa, Peihan Yu, et al. 2020. “Patient and Public Involvement in Palliative Care Research : What Works, and Why? A Qualitative Evaluation.” Palliative Medicine 35 (1): 151–60. https://doi.org/10.1177/0269216320956819.

Johnson, Halle, et al. “Patient and Public Involvement in Palliative Care Research : What Works, and Why? A Qualitative Evaluation.” Palliative Medicine, vol. 35, no. 1, Sept. 2020, pp. 151–60, https://doi.org/10.1177/0269216320956819.