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Patient and Public Involvement and Engagement in a doctoral research project exploring self-harm in older adults

Troya, M. Isabela; Chew-Graham, Carolyn A.; Babatunde, Opeyemi; Bartlam, Bernadette; Higginbottom, Adele; Dikomitis, Lisa

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Authors

M. Isabela Troya

Bernadette Bartlam

Adele Higginbottom

Lisa Dikomitis



Abstract

Background
The contribution of involving patients and public in health research is widely reported, particularly within mental health research. Less is written about such contributions to doctoral research. The research focus of this doctoral research, self-harm in older adults, was put forward by a Patient Public Involvement and Engagement (PPIE) group, who contributed to its development.

Aims
Critically reflect on the process, potential impact and identify challenges/opportunities in involving robust PPIE in a doctoral study.

Methods
Three PPIE members contributed to a systematic review (SR) and a qualitative study through a series of four workshops to meet the aims of the study. PPIE contributed to developing the SR review questions, protocol, data analysis and dissemination of findings. For the qualitative study, they helped develop research questions, protocol, public-facing documentation, recruitment strategies and data analysis. Involvement followed the GRIPP2-SF reporting checklist.


Results
PPIE enhanced methodological rigour, data analysis, interpretation and dissemination of findings. Challenges included lack of ethical guidance, time-related pressures and ensuring support for PPIE members. These were successfully managed through ongoing dialogue and regular communication.

Conclusions
PPIE can enhance the quality and depth of doctoral research, as lived-experiences shared by PPIE members, add to research’s components. Exposing early-career researchers to PPIE can build research cultures sensitive to PPIE’s potential contribution and develop the expertise needed to avoid tokenistic involvement. Capturing lay-perspectives is essential in mental health research to ensure research findings are accessible and that findings inform clinical practice. However, clear guidance on the ethical dimensions to PPIE is needed.

Journal Article Type Article
Acceptance Date May 5, 2019
Online Publication Date May 26, 2019
Publication Date 2019-08
Publicly Available Date Mar 29, 2024
Journal Health Expectations
Print ISSN 1369-6513
Electronic ISSN 1369-7625
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 22
Issue 4
Pages 617-631
DOI https://doi.org/10.1111/hex.12917
Keywords aged, patient participation, qualitative, self-harm, self-injurious behavior, systematic review
Publisher URL https://doi.org/10.1111/hex.12917

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