Participation publique et participation citoyenne des personnes utilisatrices de services en lien avec le Plan d’action en santé mentale 2005-2010 : leur rôle de porte-parole

Abstract

Among the guiding principles of the Mental Health Action Plan 2005-2010 (MHAP) of the Quebec Ministère de la santé et des services sociaux (Health and Social Services) is the recognition that persons who use mental health services (consumers) can be active agents of their own individual and collective recovery journey. In accordance with this principle, the MHAP called for greater participation of consumers in local, regional and national decision-making bodies within the network of health and social services in Quebec. The objectives of this article are to look back on the various forms of consumers' participation in connection with the MHAP since its enactment, and to better understand the complexities of being spokespersons through the Actor Network Theory conceptual framework. A scientific literature review was conducted. Different angles of analysis were used to highlight convergences and trends based on official governmental publications and ongoing research on consumers' participation in decision and policy making. It was thought that a vertical case study approach would offer an historical perspective going back to the early 1960s to discuss the foundations of an "ideology of participation." Another way of assessing participation is through a horizontal approach that would compare the terms of participation implemented from one regional authority to the other, in order to cover most of the Quebec territory. The MHAP did not provide clear indicators of how to assess progress made with regards to greater consumer participation. In some regions of Quebec, this participation was coordinated by community organizations that designated their representatives. In other regions, local authorities included consumers on a more individual basis to give their opinion. As all were not at the same stage in their recovery process, some were in a position to speak using the "we," while others still needed to express themselves using the "I." In either case, their function as spokespersons proved to be a bi-directional function. In one direction, the spokesperson informed the governmental and institutional stakeholders about the expectations of consumers and about their daily life realities. In the other way, they were able to explain and make more intelligible the intricacies of the system with a lay language, which helped non specialists they encountered to remain informed partners, even though indirectly. As they shared their experience as spokespersons with their peers, their peers were able to get a clearer understanding of the progress made to effectively promote active and effective participation. The lack of clear expectations and dedicated means to support participation, induced discrepancies from one region to another, making it difficult, though, to assess progress made overall. As the function of spokesperson got more professionalized with increased opportunities to participate in policy and decision-making, spokespersons spoke from an "us" rather than an "I" standpoint. The concept of public participation evolved to one of civic participation, with the possibility to transcend the "us" and "them" dichotomy, as members of a community are all citizens to one another. Still, the terms and conditions of participation could be better defined and more predictable for greater equity in terms of access to different levels of policy and decision-making.