Mental health service users in research: critical sociological perspectives

This is the third book to engage with the topic of research by academics who identify as mental health service users/psychiatric survivors, and the first one to step clearly outside the field of mental health and psychiatric research. Mental Health Service Users in Research documents and extends the seminar series ‘Researching in Mental Health: Sociological and Service User/Survivor Perspectives’ held at the British Library in London in 2009. The same year saw the release of both earlier titles, also in the United Kingdom (Sweeney et al. 2009; Wallcraft, Schrank, and Amering 2009). This proximity in time, place and topic makes it hard not to situate this book in relation to the other volumes. Recalling the achievement of the first work in this trilogy (Sweeney et al. 2009), Andrew Roberts of the Survivor History Group writes:

From now on the sparkling water from survivor research could flow into the dark muddy ocean of academia. (Email, 29 July 2013)

For myself, as a survivor researcher, the most sparkling aspect of this edition assembled by Staddon is its turn away from psychiatry towards sociology. Less cheering but no less important is the plain insight into the unidealised picture of service user involvement in research that this collection provides.

Given the efforts of survivor research to oppose the reductive biomedical model and argue for a different, social understanding of what is known as ‘mental illness’, the connection of survivor research with sociology feels like a step in the right direction. In her excellent introduction, Angela Sweeney criticises ‘detached academic interpretation’ (5) and argues that ‘sociologists should be uniquely positioned to engage with these survivor-generated models of madness and distress’ (7). The 10 chapters that follow can be read as testimonies to such an engagement. Each of these highly varied contributions is written from a different perspective and focuses on another aspect of that process.

Reflecting on the process of knowledge production, several of the contributors refer to their own research projects. There is a noticeable difference between the collaborative projects (Rickard and Purtell; Pollard and Evans; Gillard, Turner and Neffgen) and the survivor-controlled projects (Staddon; Carr). The latter include a social model of alcoholism outlined by Patsy Staddon and Sarah Carr’s account, which brings together autoethnography with survivor research. Unlike the accounts of collaborative research, these two contributions impressively document the full potential of research done from a survivor perspective and the nature of the new knowledge that opens up when this perspective does not have to justify itself continuously in relation to the clinical one. This is not meant as a criticism of the partnership accounts, which I value for their honest and realistic depiction of service user involvement in academic settings. Rather, it very much reflects my own value judgement about how far each of these approaches can go. The chapter by Pollard and Evans reveals the lack of even the most basic prerequisites for collaborative undertakings within hierarchical (university) settings. In such situations, the emphasis on the researcher’s identity and the battle to make physical space for service users in the academy can overshadow something at least equally as important: the shifting of the methodologies, overall ethics and outcomes of the research process. For example, the account by Gillard, Turner and Neffgen comprehensively describes a process of joint analysis and interpretation by a service user and a clinical researcher in the study of personality disorders. While the genuine team effort to bring the two perspectives into dialogue becomes clear, so also does the failure to even mention the possible role of research participants in this phase of the study.

Although they explicitly support service user involvement in research, several contributions expose the limitations of this concept. The chapters by Jayasree Kalathil and Lydia Lewis go beyond research and turn to involvement in the policy context, including its outcomes. Kalathil questions the attribute ‘hard to reach’ and explores its role in justifying the under-representation of racialised groups in involvement initiatives. She argues that ‘[n]o communities are, by definition hard to reach’ (131) and makes suggestions about how to ‘redefine user involvement itself’ (128). Lewis’s chapter demonstrates how even well-intended involvement policies can ‘produce their own injustices of recognition’ (93). She introduces a human rights perspective on involvement, and like another contributor, Hugh Middleton, emphasises the inhibiting effect of the discourse of ‘mental illness’ with its unhelpful dichotomies. Middleton himself draws a parallel between the role division in psychiatric research and that in psychiatric treatment, likening the role of ‘service user researcher’ to the ‘classic sick role’ (17). He separates the often-cited therapeutic benefit of participating in research from the legitimate question of ‘whether the activity has led to new knowledge, other than participants’ understanding of themselves’ (17; emphasis added).

I consider this to be the key issue in all efforts to change mental health research and transform the resulting knowledge base. That the researcher’s identity is not on its own the appropriate basis for working towards this shift seems obvious. It is therefore sad to see that some authors in the book pin down survivor researchers to our experiential background. This tendency starts with the use of rather inadequate language; for example, efforts to distinguish ‘service user researchers’ from ‘researchers’ (Pollard and Evans). It extends to denominating ‘types of service user researchers’ according to the degree to which our personal experiences and demographics match the topic under investigation (McLaughlin, 159–160). In his chapter on alternative futures for service user involvement in research, this same author warns of the ‘risk of replacing the tyranny of traditional academic research practice with the tyranny of service user-controlled research’ (164). Despite this being the weakest and most disappointing part of the book, it is also a reminder of how important it is to re-consider not only the practice but the whole concept of involvement. Rather than remaining stuck in the constant fight for more room within the pre-defined field of clinical research, we might invest far more in working beyond its narrow agenda. This could include strengthening both the methodologies and the underlying theory of survivor research. The chapter by Peter Beresford and Kathy Boxall engages extensively with exactly these issues, and in that sense provides a counter-vision for the future of survivor research to the one imagined by McLaughlin.

The editor of this highly diverse collection further questions the validity of collaboration, and suggests in her closing remarks that:

[w]e will need to consider how to ‘take over the factory’, the means of production, rather than be consulted as to the kind of machinery it is best for others to use. (Marx 1967, 172)

This sounds like a logical direction for the hard but exciting journey of survivor research, and I am already looking forward to the book publication from its next station.

Jasna Russo
Centre for Citizen Participation, Brunel University, London, UK
[email protected]
© 2014, Jasna Russo
http://dx.doi.org/10.1080/09687599.2013.864873