Output 2

3. Emergent themes and practice guidelines

3.2. The research environment

The issue of co-production and engagement with service users in research projects was discussed, highlighting opportunities and contradictions. The fundamental question was raised about why and how service users could be supported to become full partners in the research process, rather than being simple objects of study, and this to happen in the interest of making research findings correspond to the interests and needs of service users more precisely.

Traditionally this underlines the role of researchers as facilitators of change and their associated responsibilities. This means, however, that these responsibilities cannot simply be ‘delegated’ to other participants. For these reasons, the nature and limits of the role of service users as research participants needs to be articulated in each project. Research projects must shift to a situation where service users are ‘in the driving seat’ and are setting the agenda, focus and the research questions, not merely being consulted after these decisions have already been made. There should be constant monitoring of why and under what circumstances proposals for participatory approaches are being made and, importantly, when, and why, they are being resisted.

These issues can be addressed by asking the following questions:

How is contact with service users to be found, through what kind of channels and networks?
What criteria guide the identification of a service user as participant and which processes are used (direct or potential contact with a service, ongoing or past direct engagement with service, level of understanding of the research objectives, member of user groups who have come to attention through their past lobbying)?
How is the notion of representation understood (in terms of a spread of ’typical’ service users or is it the selection of the most articulate, the most willing to cooperate)?
What forms of language and information is used to help service users understand the research process?
Is informed consent followed through?
What were the criteria for funding and which modifications can be made arising from codetermination of goals with service users?
What are the levels of participation, and does it include only advice or more collaborative direction of the research?
Are the intellectual property rights made explicit and how can service users be included as co-authors in publications?
Are promises of tangible change incorporated into research outcomes?

Prior familiarity with local and national conditions is essential and establishing credibility with participants is also a precondition for authentic research in this field. It may be possible to agree common guidance for such research approaches as follows:

There should be an examination and acknowledgement of the pre-existing organisational culture of the institutions or groups and mainly whether they are disposed to change
There should be consideration of how the ‘credentials’ of the researchers are established (for example, in terms of the previous research record, quality of training, biographical elements that demonstrate a possible affinity with issues and familiarity with the milieu)
There should be authentic communication at all levels (for example, in the sharing of documentation, open discussion of aims, rules for the group and individual discussions. There should be external supervisors or experts with experience in participative research who consult and monitor the progress of projects.¹

Theme 2) Case Study Example: Embracing participatory approach and overcoming difficulties

In the Portuguese case study, the approach to the field and to the participants starts with the realisation of the "ecology of place", where the researchers do a reconnaissance, both of the social housing neighbourhoods, and of all the projects and structures that may be used in the intervention defined for the participants. Afterwards, an informal contact is made with the participants, often mediated by the family, since there are usual problems of insecurity associated to these contexts.

The close and regular contact between researchers and participants creates an environment of proximity and trust, essential for the participation of the elderly in the project.

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¹Indeed, it could be one of the outcomes of the INORP project to establish a pool of such international supervisors who can be consulted by projects with less experience in participative research (and teaching)