Recovery in Mental Health: Reshaping Scientific and Clinical Responsibilities, by Michaela Amering and Margit Schmolke
Handbook of Service User Involvement in Mental Health Research,
Eds Jan Wallcraft, Beate Schrank and Michaela Amering
Reviewed by Paula Goering* and Jijian Voronka**
The request to review two new books on recovery and consumer involvement in research was timely. We are both involved in the At Home/Chez Soi project, a large demonstration research project of Housing First, an approach for persons who are homeless with mental health and/or addiction problems that has as a fundamental value, the philosophy of involving persons with lived experience in both the service and research. As the lead researcher, Paula Goering is responsible for oversight of the development and implementation of the research design. As the consumer research consultant, Jijian Voronka works to integrate the perspectives of people with lived experiences of mental health and homelessness into the project. Together we looked at these books to see how relevant and useful they might be for implementing recovery-oriented assertive community treatment and supportive housing. We also asked how these works would inform others in the complex and messy world of applied health services research and/or best practice implementation.
Recovery in Mental Health is a World Psychiatric Association sponsored volume, translated from German and originally intended to introduce the recovery philosophy and literature to non-English speaking audiences in countries where there is less familiarity than in North American and Western Europe. The authors state that they also hope that the volume will provide a "fresh and comprehensive" summary for those who have been immersed in the extensive dialogue about these issues over the last decade or so." For those clinicians and users who are new to the concepts and practices, it will be a rich introductory resource. I believe though, that most clinical staff in our five city project that have experience working with the homeless population in community settings will also have a level of understanding and skill that is more advanced than the original target audience for this book.
The core of the book, found in a chapter titled "Personal Experience as Evidence" and as a "Basis for Model Development" is a fascinating and inspiring collection of the exemplary stories of the people with lived experience who have pioneered the language and models of self-help and advocacy. We are introduced to the lives and work of such leaders as Ron Coleman from UK, Helen Glover from Australia, Pat Deegan from USA, and Christian Horvath from Australia. Their ideas challenge me to stretch my thinking about our work compatible with the principles and values that Dan Fisher and Laurie Ahern describe in their PACE (Personal Assistance in Community Existence) program model? Have we substituted traditional psychiatric culture with more person and peer centered care models? How do we fare in taking down the barriers to recovery that Pat Deegan has identified in her list of ten questions that include "Have we created environments in which it is possible for staff people to be human beings with human hearts?" I am eager to share this chapter with the others in our project so that we can reexamine our language and consider the possible value of such things as Deegan's work on personal medicine and Coleman's hearing voices networks. As in the real life of our project, there is much to be gained from learning more from those who draw so creatively upon their combined personal and professional expertise.
Elsewhere are comprehensive summaries of developments, rationale and basic content, presented in a compendium that are familiar ground for North American practitioners and academics. For example a European Union project Ex-IN (experience involvement) provides a platform for 14 projects in six countries that are piloting user involvement practices. This will offer the opportunity to further develop our knowledge about the methods and outcomes of user involvement, including describing in more detail the training needs of people with lived experience, innovative methods for meeting them and curriculum which can be shared.
Unfortunately, in some places in this volume, the material is somewhat disorganized, appearing to be a "hodge-podge" of summaries of other people's work with insufficient critical analysis to recommend it for a more expert reader. The tone of the writing varies considerably. For example, an in-depth discussion of resilience has a distinctly scholarly tone while a brief original reflection on the seeming gap between quality of life experts and persons with lived experience is in a more editorial style. This means that there is something here for everyone, but the reader may have to scan and select the nuggets of knowledge that are particularly suited to them.
Interesting clinical observations and examples from European studies add an element of freshness. The authors describe in detail a qualitative study from Scandinavia on the turning points associated with recovery. Sometimes there is a downward spiral and an experience of hitting rock bottom before an individual is able to begin to develop a new self. Other times an unexpected event or situation forces a decision that then has a meaningful effect and initiates an upward turn. It is of direct relevance to our study that will use turning point interviews to understand the experiences of intervention and control participants. Yet I doubt that we would have sought it out, prior to encountering it here. On the other hand, it is impossible to include in a single chapter all of the extensive writing about how to build and evaluate recovery based systems of care. The fact that housing and homelessness are barely mentioned underlines how hit and miss the topic coverage ends up being when a large body of knowledge is condensed into one chapter on diagnosis, therapies and system transformation.
The At Home/Chez Soi project is making a concerted effort to include people with lived experience of both mental health and homelessness in many aspects of the project. As a consumer research consultant for the project, I, Jijian Voronka, draw on my lived experience in my approach to research and analysis. Part of my work is acting as a liaison for researchers who are being asked to include users in their research teams, but might not have the experience or nuance in facilitating such involvement. The project also works towards including consumers as expert knowers in the realms of mental health and homelessness, and has recruited people in a variety of capacities: as advisors, consultants, facilitators, peer support workers, peer interviewers, and more.
Ultimately, the project offers an opportunity towards breaking through the 'good intentions' model that some research professionals understand user-inclusion to mean, to understanding the 'nothing about us without us' principle that user involvement insists on. It is with this lens that I read the Handbook of Service User involvement in Mental Health Research. The Handbook claims to offer a practical tool for users who want to become involved in research as well as for researchers who want to establish user involvement in their own projects.
The Handbook draws from seminal authors well established in the field (such as Peter Beresford, Alison Falkner, Alisa Lincoln and Kim Hopper), but also provides room for less well known user-researchers who are often barred from the level of research analysis and authorship. The book is presented in accessible chapters that truly can offer the reader an off-the-shelf and scan-the-index resource when issues involving user engagement arise. The chapters are titled practically, capturing the issues that they grapple with. For instance, chapters titled "Principles and Motives," "Purposes and Goals," and "Collaboration" outline the histories, motivations, and negotiations of working towards user involvement, and can be used as a starting point for non-user researchers to orient them towards involving users in research. Chapters such as "Service Users as Paid Researchers," "Money," and "Power," can serve a reader who needs to know how to proceed with organizing user involvements in research. For instance, many users who receive social benefits have a cap on what they are able to earn before the state begins to claw back earnings. How then are we to justly compensate user-researchers for their work without affecting their benefits? Practical issues and impediments such as these are well thought through and options on how to negotiate around barriers are offered.
I have used this resource as a tool to ensure that consumers remain core and connected to the multi-variable components of this project."Chapter 10, Service Users as Paid Research Workers: Principles" for active involvement and good practice guidance, was a particularly useful chapter to share with the research teams. In it, the authors developed good practice guidelines on how to achieve active involvement of user-researchers. Detailing such processes as researcher preparation, hiring service users, training, supervision and support, these guidelines offer a to-the-point reference for research teams on our project to help them prepare to work alongside user-researchers. "Chapter 1, History, Context and Language," and "Chapter 2, Principles and Motives for Service User Involvement in Mental Health Research" both act as a brief for those who have little background in the history of user involvement. Both chapters explain how and why this involvement has become an imperative, through tracing the underlying principles of social justice, inclusion and empowerment that user-involved research values. The ethos of "flexibility, an openness to difference and an appreciation of people as individuals with something of value to contribute" (p.15) is one that should spur researchers to work harder at negotiating through the challenge that the user-involved imperative can often provoke.
Collaborative books such as this one are hard to come by, but the Handbook has come at just the right time for our project, as we try to collaborate our way through a tough but rewarding project.
For more information on the work of the Commission, visit: Mental Health Commission
*Paula Goring, Lead Researcher,
**Jijian Voronka Consumer Research Consultant
Chez Soi/At Home Conseillere de Recherche pour Consommateurs
Mental Health Commission of Canada | Commission de la Santé Mentale du Canada
Suite 800, 10301 Southport Lane SW|Calgary, Alberta CANADA T2W 1S7
