A mapping review of good practices of participatory research for an impactful collaboration in disabilities studies

Abstract

Introduction: Participatory research is particularly relevant to understanding the challenges faced by people with disabilities (PWDs), as it actively involves them as partners, enabling methodologies to be better adapted to lived realities and producing more relevant and applicable results. By reducing systemic barriers and promoting inclusion, this approach improves understanding and consideration of the specific needs of PWDs in research. Yet, studies have identified hurdles associated with this approach, prompting questions about how organizations portray PWDs, the dynamics among research stakeholders, the distribution of decision-making power, and the actual impact of research on its partners. Aim: This study aims to identify the factors that influence the process and results of participatory research in the field of disability studies. Methods: We conducted a mapping review following the PRISMA-ScR guidelines, and analysis the results according to the input-throughput-outcomes Bergen model. Results: This study identifies partners skills and training, power sharing and benefits of active involvement as facilitators of participatory research. On the other hand, contextual challenges, and lack of guidance are reported as obstacles. Conclusion: This study provides insight into how the various facilitators and obstacles to participatory research and its different processes interact to produce positive, valid and rigorous results.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This study was funded by the grant #295513 of the program "grands defis de societe 2021 to 2013" of the Fonds de recherche du Quebec for the Research Team Inclusive Society; under grant #2023SE7310780 for the Research Team Support program of the Fonds de recherche du Quebec Societe et Culture (FRQSC) (Participation sociales et villes inclusives) ; under grant #284142 for the doctoral scholarship from FRQSC to MC; under grant Concours 1 for doctoral scholarship from Centre for interdisciplinary research in rehabilitation and social integration (Cirris) to RJ and under grant #296761 for research scholar awards from Fonds de recherche du Quebec Sante (FRQS) to FR.

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I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

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I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

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I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data produced in the present work are contained in the manuscript

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