EXPAIRs conference 2019

Table of contents

PEER SUPPORT: CURRENT CHALLENGES

DISABLING SITUATION, CHRONIC ILLNESSES, MENTAL HEALTH

Conference at the Human Sciences Institute in Brittany, on November 14 and 15, 2019

PROGRAM

PLENARY SESSION – CITIZENS IN A CHANGING SOCIETY

Chairman: Baptiste Brossard, Australian National University (Australia)

Elements for a participatory culture
Joëlle Zask, Philosopher, Aix-Marseille University
New social policies and their anthropological horizon
Jean-Louis Genard, Sociologist, University of Mons (Belgium)

PLENARY SESSION – FROM CITIZEN PARTICIPATION TO PEER SUPPORT

Chairman: Robert Dingwall, Nottingham Trent University (UK)

The participation of people receiving support/healthcare in France: expected effects, effects produced
Marcel Jaeger, Sociologist, CNAM Emeritus Professor
Peer support: context and public policy effects
Eve Gardien, Christian Laval, Sociologists, Rennes 2 University

PLENARY SESSION – PEER SUPPORT: THE CURRENT CHALLENGE OF PROFESSIONALISATION

Chairman: Eve Gardien, Rennes 2 University

The professionalization of peer support in mental health in France: objectives and challenges
Lise Demailly, Sociologist, Emeritus Professor, University of Lille
Peer support professionalization experiences: Should human experience be professionalized? Developing the link between lived and acquired experience
Chyrell Bellamy, Ph.D., Associate Professor and Peer Support Services Director, Yale University, Psychiatry Department (US)

AND 34 PRESENTATIONS MADE DURING THE WORKSHOPS.

RATIONALE

Since the 90s, French public policy has been marked by the dissemination of what L. Blondiaux called “a participatory imperative” (Blondiaux, 2008). “Institutional schemes” appeared in numerous public policy areas and were officially implemented by public authorities, on all levels. “The aim of the schemes was to involve all or part of the public in a discussion, of the best quality possible, to make them stakeholders in the decision-making process in a given area of public action” (Gourgues, 2013: p. 13). Whilst all these systems aim to reduce the “double delegative divide” between representatives and representees, and between specialists and laymen (Callon, Lascoumes, Barthe, 2001), the methods used vary widely (Fung, 2006). Differences include the way in which the public called upon to participate is defined or selected (appointment of representatives, drawing of lots, self-selection, etc.), to the way in which the debates and the process of producing a collective opinion are organized (deliberation or negotiation?) and also, as S. Arnstein (1969) pointed out, of the greater or lesser impact of participation on the final decision (simple consultation or real delegation of power to citizens?). These participative schemes differ in how they are implemented and their aims: participation can be a response to managerial challenges (improving public service effectiveness and efficiency by listening to user-consumers), and to political challenges (re-engage a representative system that has been widely criticized) and social challenges (strengthening social ties).

Public policies in the health, social and medico-social sectors are no exception to the rule and have made extensive use of this participatory option since the 2000s. The Law of January 2, 2002, on the renovation of social and medico-social action, introduced the principle of involving people in their personalized projects and at establishment and services level, with the creation of Social Life Councils and satisfaction surveys. The Law of March 4, 2022, relating to patient rights and the quality of the healthcare system, set in place a regulatory framework to facilitate the development of voluntary work in healthcare establishments, encouraged the participation of approved associations of patients and users of the healthcare system in various bodies with competence in healthcare matters, and strengthened users representatives’ roles on the boards of directors of public healthcare establishments.

Since the 2010s, this participative approach has taken a new direction with the introduction of peers in a range of public policies. Peers are a type of newly recognized actor made legitimate by the public authorities because of their experiential knowledge: experience of life on the streets; chronic illness experience; addiction experience; and disabling situations experience , etc. Some peers are selected to represent users, or to contribute to teaching or professional training, and others to support their peers. The conference will be dealing with the latter type of peers.

In concrete terms, peers who provide peer support are referred to by a range of titles. The most common include: peer supporter; peer supporter; peer worker; and peer healthcare mediator. Peer supporters are hired to work with the multi-professional teams of the Un Chez Soi d’Abord public policy scheme for homeless people. Others are asked to take part in the Accompanied Response for All program for people who are living disabling situations, chronic illnesses or mental health problems, and their families. And some peer supporters are expected to break the solitude and build mutually supportive relationships within Mutual Aid Groups. Some peer supporters are part of healthcare, and public health, schemes and take part in therapeutic education or health prevention programs, for example.

Following strong, current public policy interest in peers, peer support practices, contexts, and statuses are multiplying. Symmetry and reciprocity, the basic characteristics of peer relations, are even sometimes lost sight of. This raises questions about the issues underlying this participation.

Is it the development of the peer support function or the deployment of public policies that is favoured (Gardien, Laval, 2018)? Is there a desire to democratise targeted activity sectors and improve public policy, or, conversely, is there an ambition to get peers to endorse public policy through their participation? Is it a question of recognizing the experiential knowledge of peers and their potential contribution to our society? Or, could it even be a new means of developing citizen involvement? Is the aim of this peer participation to broaden peer support possibilities? Is it a call to laymen to limit public spending? Does peer participation intend to make the populations targeted by public policy more compliant? Or is it a question of normalizing and including peer support workers through ad hoc training and professionalisation?

The aim is to avoid making false accusations against peer supporters in the contemporary socio-political context. Why is this so?

Firstly because organizing and implementing peer support relationships (or support) are much older than the onset of public policy interest (Gardien, 2017). Many groups and individuals are involved in supporting their peers on their own initiative, without any particular link to public policy. Alcoholics Anonymous is a perfect example of this, as are various patient associations, and several peer-run groups.

Secondly because “taking part in” does not mean “being part of” (Zask, 2011). In other words, we need to distinguish between several possible peer postures: participating on one’s own initiative in a collective action that makes sense for oneself (Sen, 2010); taking on a social role as part of a public policy mechanism designed and organized by others; accepting or being subjected to a form of injunction to participate; aiming for the individual and collective emancipation of oneself and one’s peers, and consequently social order transformation (radical model according to Bacque, Biewener, 2013).

Thirdly, because contextual effects undeniably change the effects of individual and/or collective actions by peers. They can take part in a public policy context where multiple supports and facilitating elements are provided and organized by the State and other stakeholders to achieve greater social justice through schemes to: address unequal opportunities; overcome difficulties in accessing certain scarce resources; and reduce the lack of effectiveness of certain rights, etc. (liberal model). Peers can also take part in an environment where each person must be “the entrepreneur of their own existence” and where participation is a matter of individual injunction and public activation policies (neo-liberal model) (Bacque, Biewener, 2013). Self-management is yet another way of relating to the political and institutional environment.

This conference examined the issues underlying the many practical forms of peer participation in the health, social work sectors, and in self-management, beyond their scope. It was geared towards both identifying, defining, qualifying, and clarifying their practical consequences. The conference also took international case studies into account.