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T his author has for the past four years been involved in a collaborative project with some other mental health professionals and service users of the psychiatric system as “CONKER,” CONsumers for Knowledge Exchange and Research. We believe that without having the people most affected by psychiatric practices contribute to mental health knowledge he evidence base will be incomplete.
A criticism of traditional academic research is that the subjects – people – are used, and then in effect discarded. A different approach, typically employed with marginalized populations, is a model called participatory action research (PAR). This approach differs not so much in the methods used as in having representatives of the population being studied identify the research question (participation) and then using the results to better the lives of that population (action). This is not to say that academic research never achieves any of these ends, but to say that PAR is more explicitly collaborative, praxis-oriented, and political. This discussion may be relevant in discussing research enterprises driven by persons identifying as clients of the psychiatric system, since according to Beresford (2006, 225) such research “tends to be associated with…..the empowerment of service users and the improvement of their lives, through both the process and purpose of research.” Canada’s own “Kirby Report” (Standing Senate Committee on Social Affairs, Science and Technology 2006) suggests that consumers and families favor “participatory action research and underutilized … qualitative methods” (244) as a means to “reclaim ones own story” (231).
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An article by Griffiths and colleagues (2004) identifies both potential advantages and challenges concerning consumer participation in research:
- Advantages to the research enterprise itself include the inside experience and knowledge of service recipients; a potentially broader perspective on the research question; the greater likelihood that feasibility, relevance and client-sensitivity will be highlighted; insights into the interpretation of data – a phenomenological perspective; increased researcher accountability; and, greater appreciation for research by the consumers participating.
- Public health advantages include, hopefully, improved services and improved health outcomes.
- Advantages to clients of the psychiatric system include the acknowledgment of consumer expertise; providing clients with both a voice and a sense of ownership; providing an opportunity to contribute; and, diminishing stigma by making clients partners.
- Challenges to the research enterprise include the possibility of consumer-researchers becoming unwell and having to break off from the project; a lack of research knowledge and credentials among consumers; and, whether the consumers offering their inside experience and views of the mental health system can be considered representative. With respect to participants becoming unwell, a parallel concern is the added stress of the work causing symptoms of mental illness to worsen. Possible challenges for the professional researcher include the additional time required to mentor consumer-colleagues, and the threat to a self-perception of “researcher as expert,” this having to do with “a feeling of ownership regarding the intellectual quality of their research” (Griffiths et al. 2004, 52).
 Truly participatory, consumer-driven research, particularly as it applies to working in teams, is still an underdeveloped field, which is not to discount the exceptional personal narratives that have been written by persons receiving mental health services in Canada (e.g. Carten 2006).As reviewed by Schneider (2010) service user roles in research fall within a continuum:
- Advisory: clients are invited to be part of a board or committee to represent the “stakeholder” group.
- Consultation: service users are regarded as having knowledge that may be valuable, for example in designing a survey, but control of the project is retained by the professionals.
- Collaboration: clients collaborate with professional researchers in all aspects of the project, including identifying the research question, study design, data gathering and analysis, and dissemination of results.
- Control: service users run the show, and if outside professionals are used at all this is at the request of the project team.
The fact that there are relatively few examples of the latter category may be because a collaborative approach is preferred by the parties involved, but also clearly has to do with service-users having limited resources in terms of finances and trained personnel. Academics and other professional researchers bring with them an infrastructure which includes, most critically, access to grant money. Client-only research teams are generally less eligible for grants, particularly ones of any size, so collaborative projects may be the default option. These partnerships may be fruitful, and there are certainly progressive academics who want to honour the consumer voice, but there is always the danger of tokenism and cooption to guard against. Examples of enterprises which could be considered “consumer-controlled” are the Consumer Research Unit in Australia and the National Empowerment Center in the U.S. In both of these the program directors identify as being in recovery from mental illness.
In Canada a number of collaborative projects have been undertaken by academics in partnership with service recipients, and one can point to the work of Professors Geoff Nelson at Wilfred Laurier University and Barbara Schneider at the University of Calgary as examples. As this book was being written researchers affiliated with the Mental Health Commission of Canada were in the process of facilitating the development of a consumer peer research network, to link consumer-researchers from different parts of the country
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