Recovery, revisões e experiências: modos de envolvimento de usuários e usuárias de serviços de saúde mental em pesquisas

Abstract

How to involve mental health service users in research? From the practice with a mutual help and support group in mental health in Rio de Janeiro-RJ, and the long-term conviviality with its users, a research project was elaborated to answer to this question. Based on the concept of recovery, related to the protagonism of these users, who became co-researchers, the project presented a methodological orientation guided by the conceptual assumption. With the establishment of a co-researchers’ collective, meetings were held to plan the whole thesis, including its objectives and strategies. Based on this initiative, an objective was set to understand the recovery processes of other users of the mental health network in the referred city, through interviews on devices in which the co-researchers were inserted. From the opportunity to do part of the PhD at the Service User Research Enterprise of King’s College London, it was aimed to understand how the mental health service users are involved in research in that context, given the relevance of the British tradition for this area of knowledge. Due to the COVID-19 pandemic, the interviews were replaced by the author’s personal testimony about the research experience with the co-researchers’ collective, in addition to reviews of the world and Brazilian literature on research involving mental health service users. Two British categorizations of forms of service user involvement in research were adopted in the reviews: consultation, contribution, collaboration and control; and principles, purpose, presence, process and impact; the second structured the author’s testimony of the experience with the co-researchers’ collective, considering its formation, mode of operation and impact, besides issues related to ethics, authorship, power relations, group contextualization and transparency. Furthermore, the concept of recovery was debated according to criticisms apprehended in the British reality of mental health and to the conception produced by the collective. The service user involvement in mental health research in England is expressive, however, despite of the public policies that favor inclusion, the tokenistic participation in this area is denounced. In Brazil, the reality of research that includes mental health service users in a more significant way is still incipient. Therefore, the demand for incentives for collaborative research in the country is relevant, in addition to the defense of the role of mental health service users in the production of knowledge about public policies that support the Brazilian psychiatric reform, aiming at advances and the maintenance of democratic practices, considering the setbacks and serious threats to the public health system and social policies in Brazil.