Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project

Philosophical assumptions of the participatory worldview collide with the biomedical framework on which procedural ethics have been grounded. Consequently, obtaining or approving ethical clearance for participatory research can be challenging. Researchers may resent being pressed to water down parti...

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Main Authors: Sarah Cilia Vincenti, Paulann Grech, Michael Galea, Vince Briffa, Sarah Borg Spiteri, Maria Cachia, Sharon Del Bene, Jennifer Briffa Desjardins, Naomi Galea McKay, Mel McElhatton, Herma Privitera Brightwell, Marie Claire Saliba, Erica Schembri, Rachel Spiteri
Format: Article
Language:English
Published: SAGE Publishing 2025-07-01
Series:International Journal of Qualitative Methods
Online Access:https://doi.org/10.1177/16094069251364622
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author Sarah Cilia Vincenti
Paulann Grech
Michael Galea
Vince Briffa
Sarah Borg Spiteri
Maria Cachia
Sharon Del Bene
Jennifer Briffa Desjardins
Naomi Galea McKay
Mel McElhatton
Herma Privitera Brightwell
Marie Claire Saliba
Erica Schembri
Rachel Spiteri
author_facet Sarah Cilia Vincenti
Paulann Grech
Michael Galea
Vince Briffa
Sarah Borg Spiteri
Maria Cachia
Sharon Del Bene
Jennifer Briffa Desjardins
Naomi Galea McKay
Mel McElhatton
Herma Privitera Brightwell
Marie Claire Saliba
Erica Schembri
Rachel Spiteri
author_sort Sarah Cilia Vincenti
collection DOAJ
description Philosophical assumptions of the participatory worldview collide with the biomedical framework on which procedural ethics have been grounded. Consequently, obtaining or approving ethical clearance for participatory research can be challenging. Researchers may resent being pressed to water down participatory features to suit institutional requirements. Co-researching community partners’ trust towards academia may be compromised at the outset if the REC comes across unappreciative of their tacit knowledge or is insensitive to their self-determination appeals. REC members may be conflicted over unfamiliar dilemmas. A report detailing effective collaboration during design and approval of a protocol for a photovoice study aimed to empower ADHD women is provided. This collaboration culminated in study plans which satisfied one and all’s requirements. In an attempt to include co-researcher voice in publications and promote more positive perceptions of REC oversight in participatory scholarship, recommendations by academic and community partners and the REC chair who is overseeing this project are advanced. Many lessons were drawn from this positive experience by those who engaged in it. Ethicality, in the context of participatory research is certainly not straightforward, but its pursuit need not be a battlefield. It requires the mobilization of values embedded in the participatory worldview and, akin to the research itself, holds transformative potential.
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spelling doaj-art-9b1f65e76d41499dbc96e8f6a41672a02025-08-20T02:56:43ZengSAGE PublishingInternational Journal of Qualitative Methods1609-40692025-07-012410.1177/16094069251364622Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research ProjectSarah Cilia VincentiPaulann GrechMichael GaleaVince BriffaSarah Borg SpiteriMaria CachiaSharon Del BeneJennifer Briffa DesjardinsNaomi Galea McKayMel McElhattonHerma Privitera BrightwellMarie Claire SalibaErica SchembriRachel SpiteriPhilosophical assumptions of the participatory worldview collide with the biomedical framework on which procedural ethics have been grounded. Consequently, obtaining or approving ethical clearance for participatory research can be challenging. Researchers may resent being pressed to water down participatory features to suit institutional requirements. Co-researching community partners’ trust towards academia may be compromised at the outset if the REC comes across unappreciative of their tacit knowledge or is insensitive to their self-determination appeals. REC members may be conflicted over unfamiliar dilemmas. A report detailing effective collaboration during design and approval of a protocol for a photovoice study aimed to empower ADHD women is provided. This collaboration culminated in study plans which satisfied one and all’s requirements. In an attempt to include co-researcher voice in publications and promote more positive perceptions of REC oversight in participatory scholarship, recommendations by academic and community partners and the REC chair who is overseeing this project are advanced. Many lessons were drawn from this positive experience by those who engaged in it. Ethicality, in the context of participatory research is certainly not straightforward, but its pursuit need not be a battlefield. It requires the mobilization of values embedded in the participatory worldview and, akin to the research itself, holds transformative potential.https://doi.org/10.1177/16094069251364622
spellingShingle Sarah Cilia Vincenti
Paulann Grech
Michael Galea
Vince Briffa
Sarah Borg Spiteri
Maria Cachia
Sharon Del Bene
Jennifer Briffa Desjardins
Naomi Galea McKay
Mel McElhatton
Herma Privitera Brightwell
Marie Claire Saliba
Erica Schembri
Rachel Spiteri
Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project
International Journal of Qualitative Methods
title Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project
title_full Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project
title_fullStr Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project
title_full_unstemmed Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project
title_short Procedural Ethics for Participatory Research: Field-Specific Dilemmas and Recommendations From Researchers, Co-researching Community Partners and the REC Overseeing a Community-Academic ADHD Research Project
title_sort procedural ethics for participatory research field specific dilemmas and recommendations from researchers co researching community partners and the rec overseeing a community academic adhd research project
url https://doi.org/10.1177/16094069251364622
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