Toggle Main Menu Toggle Search

Open Access padlockePrints

Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study

Lookup NU author(s): Professor Barbara HanrattyORCiD, Maisie McKenzie, Irene Soulsby, Margaret Ogden

Downloads


Licence

This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

© 2024 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for the Sociology of Health & Illness.Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of ‘academic’ and ‘PPIE’ did not stand up to scrutiny, with an increasing blurring of boundaries as people’s experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.


Publication metadata

Author(s): Forbat L, Macgregor A, Brown T, McCormack B, Spilsbury K, Rutherford A, Hanratty B, Hockley J, McKenzie M, Soulsby I, Ogden M

Publication type: Article

Publication status: Published

Journal: Sociology of Health and Illness

Year: 2024

Pages: epub ahead of print

Online publication date: 08/05/2024

Acceptance date: 21/03/2024

Date deposited: 21/05/2024

ISSN (print): 0141-9889

ISSN (electronic): 1467-9566

Publisher: John Wiley and Sons Inc

URL: https://doi.org/10.1111/1467-9566.13785

DOI: 10.1111/1467-9566.13785

Data Access Statement: The anonymised data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. Requests must be accompanied by a research protocol and letter confirming ethical approval from a recognised ethics board. Data are available on request from the corresponding author and on receipt of an ethics-committee approved protocol.


Altmetrics

Altmetrics provided by Altmetric


Funding

Funder referenceFunder name
128799
National Institute of Health Research

Share