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Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise

“Epistemic injustice” refers to how people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experiences. In the mental health field, epistemic injustice occurs in both research and service delivery systems and particularly impacts people from racial...

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Autores principales: Okoroji, Celestin, Mackay, Tanya, Robotham, Dan, Beckford, Davino, Pinfold, Vanessa
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10086175/
https://www.ncbi.nlm.nih.gov/pubmed/37056406
http://dx.doi.org/10.3389/fpsyt.2023.1114725
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author Okoroji, Celestin
Mackay, Tanya
Robotham, Dan
Beckford, Davino
Pinfold, Vanessa
author_facet Okoroji, Celestin
Mackay, Tanya
Robotham, Dan
Beckford, Davino
Pinfold, Vanessa
author_sort Okoroji, Celestin
collection PubMed
description “Epistemic injustice” refers to how people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experiences. In the mental health field, epistemic injustice occurs in both research and service delivery systems and particularly impacts people from racialized communities. Lived experience involvement and leadership are often proposed as methods of combatting epistemic injustice, a tool for ensuring the views of people at the center of an issue are heard and can inform decision-making. However, this approach is not without challenges. In this paper, we draw on our work as intermediary organizations that center lived experience perspectives to challenge epistemic injustice. We highlight two problems we have identified in working in the mental health research field: “elite capture” and “epistemic exploitation”. We believe that these problems are barriers to the radical and structural change required for epistemic justice to occur. We propose a pragmatic approach to addressing these issues. Based on our work we suggest three considerations for researchers and our own organizations to consider when involving people with lived experience. These include reflecting on the purpose of creating knowledge, with a focus on impact. Embedding lived experience roles, with appropriate employment, support and remuneration, and acknowledging that it may be necessary to work alongside existing systems as a “critical friend” while developing new spaces and structures for alternative forms of knowledge. Finally, the mental health research system needs to change. We believe these three considerations will help us better move toward epistemic justice in mental health research.
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spelling pubmed-100861752023-04-12 Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise Okoroji, Celestin Mackay, Tanya Robotham, Dan Beckford, Davino Pinfold, Vanessa Front Psychiatry Psychiatry “Epistemic injustice” refers to how people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experiences. In the mental health field, epistemic injustice occurs in both research and service delivery systems and particularly impacts people from racialized communities. Lived experience involvement and leadership are often proposed as methods of combatting epistemic injustice, a tool for ensuring the views of people at the center of an issue are heard and can inform decision-making. However, this approach is not without challenges. In this paper, we draw on our work as intermediary organizations that center lived experience perspectives to challenge epistemic injustice. We highlight two problems we have identified in working in the mental health research field: “elite capture” and “epistemic exploitation”. We believe that these problems are barriers to the radical and structural change required for epistemic justice to occur. We propose a pragmatic approach to addressing these issues. Based on our work we suggest three considerations for researchers and our own organizations to consider when involving people with lived experience. These include reflecting on the purpose of creating knowledge, with a focus on impact. Embedding lived experience roles, with appropriate employment, support and remuneration, and acknowledging that it may be necessary to work alongside existing systems as a “critical friend” while developing new spaces and structures for alternative forms of knowledge. Finally, the mental health research system needs to change. We believe these three considerations will help us better move toward epistemic justice in mental health research. Frontiers Media S.A. 2023-03-28 /pmc/articles/PMC10086175/ /pubmed/37056406 http://dx.doi.org/10.3389/fpsyt.2023.1114725 Text en Copyright © 2023 Okoroji, Mackay, Robotham, Beckford and Pinfold. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Psychiatry
Okoroji, Celestin
Mackay, Tanya
Robotham, Dan
Beckford, Davino
Pinfold, Vanessa
Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise
title Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise
title_full Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise
title_fullStr Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise
title_full_unstemmed Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise
title_short Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise
title_sort epistemic injustice and mental health research: a pragmatic approach to working with lived experience expertise
topic Psychiatry
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10086175/
https://www.ncbi.nlm.nih.gov/pubmed/37056406
http://dx.doi.org/10.3389/fpsyt.2023.1114725
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