Background: Participatory research denotes the engagement and meaningful involvement of the community of interest across multiple stages of investigation, from design to data collection, analysis, and publication. Traditionally, people with first-hand experience of psychiatric diagnoses, services users and those living with a psychosocial disability have been seen objects rather than agents of research and knowledge production. This, despite the ethical and practical benefits of their involvement. The state of the art of knowledge about participatory research in mental health Brazil is poorly understood outside of its local context. The purpose of this article was to conduct a scoping review of participatory and user-led research in mental health in Brazil.
Findings: We identified 20 articles that met eligibility criteria. Participation in research was not treated as separate from participation in shaping mental health policy, driving care, or the broader right to fully participate in societal life and enjoy social and civil rights. Studies identified several obstacles to full participation, including the biomedical model, primacy of academic and scientific knowledge, and systemic barriers. Our extraction, charting, and synthesis yielded four themes: power, knowledge, autonomy, and empowerment.
Implications of the work: Participation in this context must address the intersecting vulnerabilities experienced by those who are both Brazilian and labeled as having a mental illness. Participatory research and Global South leadership must foreground local epistemologies that can contribute to the global debate about participation and mental health research.
Keywords: Mental health; community engagement; decolonization; developing countries; schizophrenia.