Introducing Mental Health Service Users in Research: critical sociological perspectives.

As we mentioned briefly  in the Spring newsletter, a brand new book about the work of mental health service users in research, compiled and edited by a service user, has just been published. As the editor, I’d really like to tell you a bit more now about the book. When I first began to attend a service users research forum, run by my local mental health Trust, I could not have dreamed that a book like this could emerge, and very much less could I have thought I would be editing it. We mental health service users argued and criticised what was being done and how it was being done but we did not at that point in time know quite how we might change it. We had not realised our potential.

That was fifteen years ago. Service user involvement in research has raced ahead and is now seen as essential, even if the process itself is often less satisfactory than that suggested by INVOLVE ‎

 

Service User Collaboration

Books such as This is Survivor Research (Sweeney et al, 2009) have demonstrated that service users may be researchers and collaborators, rather than mere subjects of research, producing pioneering work of lasting value. It was in that year, 2009, that a group of service users, academics and practitioners ran a series of events at the British Library, with presentations from all three groups, and exhibitions by the Survivor Researcher Network and Recovery. Organised principally by Dr. Lydia Lewis and Dr. Angela Sweeney, with assistance from the British Sociological Association and the Foundation for the Sociology of Health and lllness, it provided some thrilling and inspiring evenings that year. I was lucky enough to be one of the presenters, and later took on the task of approaching other presenters, to compile a book based on the series. As a sociologist, I was particularly interested in the meaning behind the involvement—the politics of involvement as well as the practice.


Contributors

Eight of the original presenters contributed a chapter, and other professionals and service users were also invited to do so. The story of the series is told by Angela Sweeney. Peter  Beresford and Kathy Boxall explain how collective service user experiential knowledge can be emancipatory, transforming the way that mental differences and mental distress are understood, for example including perspectives of social justice and inequalities.  ‘Professionals’ may not welcome these approaches--- in another chapter, Hugh Middleton, a consultant psychiatrist who has long condemned the failure of mental health services to listen attentively to what service users are saying, suggests that the medical model promotes separation and imbalance of power between professional and service user.

A chapter by Steve Gillard, Marion Neffgen and Katie Turner celebrates the success of a very interesting piece of collaborative research, using a reflective and interpretive approach to a piece of research in which the team, consisting of a service user, a clinician and a researcher, analyse qualitative data about people with personality disorders. Different ways of collaborating are also outlined by David Evans and Katherine Pollard, and Wendy Rickard and Rachel Purtell. Pollard and Evans analyse both the benefits and the difficulties of service user involvement, and Rickard and Purtell describe using collaborative methods of interviewing and digital storytelling, with service users involved at many levels, and producing knowledge which is narrated in ways which empower those involved.

Lydia Lewis, Patsy Staddon, Jayasree Kalathil and Sarah Carr all describe political perspectives revealing imbalance of power, with Lewis’s chapter centring on a ‘politics of recognition’, whereby the knowledge of women service users is disrespected and seen as a symptom of mental illness. Staddon notes the way that alternative understandings of women’s alcohol use are silenced by a climate of moral and medical ‘knowledge’ which stigmatizes and shames them. Kalathil describes the sceptocism among racialised groups about their involvement in research, seeing it as tokenistic. Carr observes how lesbian, gay and bisexual people have suffered from skewed research findings, and suggests better methodologies, particularly autoethnography, to document their experiences, and in so doing, achieve emancipation.

Finally, Hugh McLochlin expresses cautious optimism about the relationship and involvement in research of service users, emphasizing the enormous advantages of a plurality of knowledges.

Huge thanks are due to Policy Press, and to all the contributors for kindness and support throughout.’

Patsy Staddon

Mental health service users in research: critical sociological perspectives is published in Bristol by Policy Press, and edited by Patsy Staddon.

 

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Fri 29 Aug 2014