Persons with psychosocial disabilities have been systematically excluded from research, policy making and decision-making processes that directly affect their lives.
Thanks to the pioneering efforts of advocates with lived experience in High Income Countries, an academic tradition of “placing the voices of persons with psychosocial disabilities front and center was inaugurated in the 1970’s and continues to this day.” According to the authors of a forthcoming study entitled “State of the art of participatory and user-led research in mental health in Brazil: a scoping review”, the same has not been true in Low- and Middle-Income Countries where lack of funding, cultural differences and colonial attitudes have been ongoing barriers. They write,
To address this issue, we will conduct a scoping review of participatory research in Brazil and develop a survey to capture and synthesize non-academic knowledge production led by persons with psychosocial disabilities and their allies. We will gather national data on reports, books, conference proceedings, art, literature, participatory and survivor led research and other relevant materials in Brazil that would not be found through traditional searches of academic databases. The rationale is that LMICs are unable to participate in the academic global debate due to standards and traditions that systematically exclude other types of knowledge that would not be considered strictly academic. By systematizing the wealth of knowledge that Brazil produces, it is expected that further funding and support should follow allowing for the expansion of opportunities to engage in academic explorations. Our survey and scoping review will allow us to respond robustly to the Lancet Commission on Psychoses in a Global Context call for submissions of academic and non-academic knowledge production led by persons with psychosocial disabilities in the Global South on behalf of Brazil.
Open Excellence is proud to provide funding for this project in partnership with the Yale Program for Recovery and Community Health to enrich the international conversation with lived expertise from the Global South. The scoping review is a collaboration between Yale University and State University of São Paulo and Federal University of Rio de Janeiro.
“This project is giving us the opportunity to work on an original idea and bring together a multidisciplinary team of researchers from Brazil and the US, including people with lived experience of mental health challenges. It’s been exciting to see all the pieces coming together. I’ll give a special shout out to Daniela, Mateus and Rita, who have been the backbone of the project, working and learning as we chart new territory in participatory research and Global South representation,” writes project lead Ana Florence, PhD.
“Aim 1 will combine a systematic review of participatory research in Brazil with a survey to map nonacademic knowledge production led by persons with psychosocial disabilities. Using a combination of methods, the national data will be analyzed, systematized and presented in a user-friendly report in English and Portuguese that will be submitted to the Lancet Commission on Psychoses in a Global Context, and an academic paper that will be submitted to Lancet Psychiatry. Aim 2 will create an online database repository of non-academic publications (art, music, film, literature, etc) led and/or co-led by persons with psychosocial disabilities. This database will be available on a Website with easy access for public consultation working as a visibility tool for the productions of Brazilian individuals with psychosocial disabilities and their allies.” The authors hope to publish the systematic review in one year and have the website pilot ready in six months.