Integration of patient and public involvement in a doctoral research study using the research cycle
Integration of patient and public involvement in a doctoral research study using the research cycle
Background: patient and public involvement (PPI) in research is widely acknowledged as essential to achieving successful and impactful research. Despite this acknowledgement, there are limited reports on how to approach and apply meaningful PPI throughout the research cycle and how to address challenges for researchers such as doctoral students, particularly when undertaking research on sensitive topics. This paper provides insights and examples for researchers new to PPI, on the impact of active PPI and recommendations for building and developing a PPI group in a paediatric focused doctoral research study with bereaved parents and carers.
Methods: PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research.
Results: PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes.
Conclusion: this paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.
Childhood cancer, Co-design, Co-production, Decision-making, Inclusion, Paediatric, Parents, Patient public involvement
Pearson, Helen
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Bell, Carol
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Cox, Leona
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Cox, Karl
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Kayum, Catherine
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Gibson, Faith
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Myall, Michelle
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Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Potter, Emma
1fc2cf4d-3bbe-4209-83e2-985666b8fa38
Bird, Nicolas
2fc570ce-9fe0-40cf-a7d6-af9ee7306969
9 August 2024
Pearson, Helen
1a9dfc7a-f1fa-4152-a618-55a946e655db
Bell, Carol
c6a56058-b3cd-4384-ad6f-cf28d186ecdc
Cox, Leona
fc99cab8-a4c1-45df-841b-97c8d800c6d6
Cox, Karl
55a128df-ca56-4794-99c6-4aa04e83d623
Kayum, Catherine
bbfd4d83-059b-41b8-b22e-69272f1419c0
Gibson, Faith
b537d483-3f20-4f15-a9b8-880758746728
Myall, Michelle
0604ba0f-75c2-4783-9afe-aa54bf81513f
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Potter, Emma
1fc2cf4d-3bbe-4209-83e2-985666b8fa38
Bird, Nicolas
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Pearson, Helen, Bell, Carol, Cox, Leona, Cox, Karl, Kayum, Catherine, Gibson, Faith, Myall, Michelle, Darlington, Anne-Sophie, Potter, Emma and Bird, Nicolas
(2024)
Integration of patient and public involvement in a doctoral research study using the research cycle.
Research Involvement and Engagement, 10 (1), [87].
(doi:10.1186/s40900-024-00620-z).
Abstract
Background: patient and public involvement (PPI) in research is widely acknowledged as essential to achieving successful and impactful research. Despite this acknowledgement, there are limited reports on how to approach and apply meaningful PPI throughout the research cycle and how to address challenges for researchers such as doctoral students, particularly when undertaking research on sensitive topics. This paper provides insights and examples for researchers new to PPI, on the impact of active PPI and recommendations for building and developing a PPI group in a paediatric focused doctoral research study with bereaved parents and carers.
Methods: PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research.
Results: PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes.
Conclusion: this paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.
Text
s40900-024-00620-z
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More information
Accepted/In Press date: 5 August 2024
e-pub ahead of print date: 9 August 2024
Published date: 9 August 2024
Keywords:
Childhood cancer, Co-design, Co-production, Decision-making, Inclusion, Paediatric, Parents, Patient public involvement
Identifiers
Local EPrints ID: 494456
URI: http://eprints.soton.ac.uk/id/eprint/494456
ISSN: 2056-7529
PURE UUID: 9503fe47-0dcc-49fe-a871-bdaa8f5a2323
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Date deposited: 08 Oct 2024 16:49
Last modified: 29 Aug 2025 01:45
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Contributors
Author:
Helen Pearson
Author:
Carol Bell
Author:
Leona Cox
Author:
Karl Cox
Author:
Catherine Kayum
Author:
Faith Gibson
Author:
Emma Potter
Author:
Nicolas Bird
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