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Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.
Forbat, Liz; Macgregor, Aisha; Brown, Talitha; McCormack, Brendan; Spilsbury, Karen; Rutherford, Alasdair; Hanratty, Barbara; Hockley, Jo; McKenzie, Maisie; Soulsby, Irene; Ogden, Margaret.
Afiliação
  • Forbat L; Faculty of Social Sciences, University of Stirling, Stirling, UK.
  • Macgregor A; Faculty of Social Sciences, University of Stirling, Stirling, UK.
  • Brown T; Department of Sociology, University of Surrey, London, UK.
  • McCormack B; Susan Wakil School of Nursing and Midwifery, University of Sydney, Sydney, New South Wales, Australia.
  • Spilsbury K; School of Healthcare, University of Leeds, Leeds, UK.
  • Rutherford A; Faculty of Social Sciences, University of Stirling, Stirling, UK.
  • Hanratty B; Faculty of Medical Science, University of Newcastle, Newcastle upon Tyne, UK.
  • Hockley J; College of Medicine and Veterinary Science, University of Edinburgh, Edinburgh, UK.
  • McKenzie M; PPI Lay Member, Faculty of Social Sciences, University of Stirling, Stirling, UK.
  • Soulsby I; PPI Lay Member, Faculty of Social Sciences, University of Stirling, Stirling, UK.
  • Ogden M; PPI Lay Member, Faculty of Social Sciences, University of Stirling, Stirling, UK.
Sociol Health Illn ; 2024 May 08.
Article em En | MEDLINE | ID: mdl-38720523
ABSTRACT
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.
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Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2024 Tipo de documento: Article