Florence Ana Carolina, Bocalini Mateus, Cabrini Daniela, Tanzi Rita, Funaro Melissa, Jordan Gerald, Davidson Larry, Drake Robert, Montenegro Cristìan, Yasui Silvio
Department of Psychiatry, Columbia University, New York, NY, USA.
New York State Psychiatric Institute, New York, NY, USA.
Glob Ment Health (Camb). 2023 Apr 5;10. doi: 10.1017/gmh.2023.12. eCollection 2023.
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.
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.
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.
参与式研究是指在从设计到数据收集、分析及发表的多个调查阶段，让相关社区参与并进行有意义的介入。传统上，有精神疾病诊断第一手经验的人、服务使用者以及有心理社会残疾的人一直被视为研究和知识生产的对象而非主体。尽管他们的参与在伦理和实际方面都有益处，但情况依然如此。在巴西本土之外，人们对巴西精神卫生领域参与式研究的知识现状了解甚少。本文旨在对巴西精神卫生领域的参与式和用户主导研究进行范围综述。
我们确定了20篇符合入选标准的文章。研究参与并未被视为与塑造精神卫生政策、推动护理或充分参与社会生活及享有社会和公民权利的更广泛权利的参与相分离。研究发现了全面参与的几个障碍，包括生物医学模式、学术和科学知识的首要地位以及系统性障碍。我们的提取、制表和综合得出了四个主题：权力、知识、自主性和赋权。
在这种背景下的参与必须解决既是巴西人又被贴上精神疾病标签的人所经历的交叉性脆弱性问题。参与式研究和全球南方的领导力必须突出当地认识论，这些认识论可有助于全球关于参与和精神卫生研究的辩论。
