Über die Autorin bzw. den Autor

Jan Wallcraft is manager of the Service User Research Group for England (SURGE). She has been a leading member of the survivor/service user movement for many years and has contributed to a number of publications, e.g. “On Our Own Terms: a report on the mental health service user movement”; “Being There In A Crisis”, and “Social Perspectives in Mental Health”.

Beate Schrank has also worked for SURGE and has published on the concept of recovery in schizophrenia and on the use of the internet by people with schizophrenia.

Michaela Amering is internationally acknowledged in the field of public mental health and mental health policy. She has published on psychoeducation, informal carers (relatives), psychiatric advance directives and gender issues in mental health care, and has recently published a book on the ‘recovery perspective’ and its relevance in the care for people with psychosis. She has worked on user involvement issues in different countries and mental health care settings. She is secretary of the World Psychiatric Association Committee on Mental Health Policy. The English translation of her book on Recovery in Mental Health will also be published in March 2009.

All three editors have an impressive track record in the field of user involvement in mental health care.

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In recent years, the need for patient and public involvement in medical research has been accepted around the world. Patient groups are gaining power and demanding their right to influence the direction of research, while funding bodies are increasingly regarding patient involvement as a requirement for grant applications. However, current knowledge on how to involve service users in mental health research is sparse and dispersed. This book provides clear guidance on best practice in this area, with practical advice based on experience in countries around the world.

Handbook of Service User Involvement in Mental Health Research describes the background and principles underlying the concept of service user involvement in mental health research; it provides relevant practical advice on how to engage with service users and how to build and maintain research collaboration on a professional level. The book highlights common practical problems in service user involvement, suggesting ways to avoid pitfalls and common difficulties.

• Combines the theoretical aspects of service user involvement in research with specific examples, as well as with general practical guidelines
• Represents the views of service users, in a powerful combination with the views of other mental health professionals
• Considers the different perspectives and needs of the stakeholders concerned
• Includes a step by step guide on best practice in successful service user involvement.

Handbook of Service User Involvement in Mental Health Research is written for psychiatrists and other medical professionals managing people with psychiatric disorders, as well as for researchers in the mental health field who want to develop projects with service user involvement. It is vital reading for funding bodies requesting service user involvement, and – importantly – is written for those service users who are interested in becoming involved in research.

Aus dem Klappentext

In recent years, the need for patient and public involvement in medical research has been accepted around the world. Patient groups are gaining power and demanding their right to influence the direction of research, while funding bodies are increasingly regarding patient involvement as a requirement for grant applications. However, current knowledge on how to involve service users in mental health research is sparse and dispersed. This book provides clear guidance on best practice in this area, with practical advice based on experience in countries around the world.

Handbook of Service User Involvement in Mental Health Research describes the background and principles underlying the concept of service user involvement in mental health research; it provides relevant practical advice on how to engage with service users and how to build and maintain research

collaboration on a professional level. The book highlights common practical problems in service user involvement, suggesting ways to avoid pitfalls and common difficulties.

• Combines the theoretical aspects of service user involvement in research with specific examples, as well as with general practical guidelines
• Represents the views of service users, in a powerful combination with the views of other mental health professionals
• Considers the different perspectives and needs of the stakeholders concerned
• Includes a step by step guide on best practice in successful service user involvement.

Handbook of Service User Involvement in Mental Health Research is written for psychiatrists and other medical professionals managing people with psychiatric disorders, as well as for researchers in the mental health field who want to develop projects with service user involvement. It is vital reading for funding bodies requesting service user involvement, and – importantly – is written for those service users who are interested in becoming involved in research.

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Handbook of Service User Involvement in Mental Health Research

John Wiley & Sons

Chapter One

Jan Wallcraft Service user Researcher and Consultant, Worcester, UK

Mary Nettle Mental Health User Consultant, Worcester, UK

This first chapter sets the scene for the chapters to follow. It provides an introduction to the context as well as the history and cornerstones of service user research and service user involvement in research as an evolving discipline. It provides examples which typify the different starting points from which service user involvement in research originated. Examples are given of how and why service users became researchers and the different types of research service users have been, and are being, involved in. There is a brief examination of the politics of research, and how governments are both encouraging involvement and creating further hurdles for service users to overcome. The chapter gives an introduction to the terminology used to describe service users in research, together with the background and history of the respective terms.

INTRODUCTION

Service user involvement in any aspect of mental health must include the possibility that involvement will lead to real change. As the subsequent chapters of this book will demonstrate, service users and survivors of psychiatry have sought to challenge and change the underlying assumptions and world-views on which traditional mental-health research are based, in small, incremental ways and in radical, fundamental ways. This opening chapter sets the scene for the rest of the book by describing the origins of service user involvement in research in the UK, the US and Canada, a few of the countries where involvement in mental health research has taken hold.

Service user involvement in mental health research would not have happened but for the efforts of survivors and users. Power-sharing is rarely initiated from the top, though the contributions in this book also give due credit to the help that political and professional allies have provided.

Service users have, of course, always been involved in research as subjects of tests and as respondents to questionnaires, but it is only in the past 20-25 years that they have been invited in as partners, and have taken part in planning, designing, and carrying out research along with professionals, or as researchers in their own right. This is a new area of development, which has come from a number of different starting points, as this chapter will show.

Although service user groups were active from the late 1970s onwards, for some years they made few inroads into the area of research. Perhaps, in the first ten years, research was not high on the agenda for service user organisations. Primary concerns were providing mutual support and information to their members and campaigning for better services and better public understanding of mental health issues. The world of research was inaccessible to all but clinicians and academics, and the rules of engagement in research were not service user-friendly. Dworkin (1992), in her book Researching Persons With Mental Illness, makes no mention of involving the persons being researched in any way, and describes the difficulties of placing reliance on patients' answers to questions, given their illness. In some ways, the 1990s marginalised the nascent service user movement even more firmly than it would have been ten years earlier, as Dworkin shows that in the US at least, mental health was moving away from an earlier public health model and refocusing on the biomedical model. This was reinforced when 'the 1990s were declared the Decade of the Brain ... with emphasis upon basic neuroscience research' (p7). Though aware that mental illness diagnosis is controversial, Dworkin advises that researchers 'can ill afford to ignore diagnostic issues'.

Though in the late 20th century there was small chance of involving service users in mainstream medical research, there were other forms of research, such as policy-oriented participatory-action research, and service evaluation, concerned with providing high-quality services in the community, where service users/survivors could, and did, get involved and gain experience. Also, as Beresford points out (Chapter 13) user-led research 'has the longest history of any form of user involvement in research' - service users could, and did, begin their own small-scale studies individually and in groups. This type of small-scale study and evaluative, policy-oriented research did not, and still does not, command the status and funding that is given to brain biochemistry, genetics, and drug trials.

Between 'pure' laboratory-based research and 'applied' research such as service evaluation, there has traditionally been a hierarchical division. Some have argued this to be a kind of class distinction, where 'pure' research was carried out by university-educated intellectuals, while messy, real-world, applied research was left to practical-minded working-class engineers.

Rather than a comprehensive history of the origins of involvement in research, we will point out some examples which typify the different routes by which service users and survivors developed skills and confidence and made alliances with professionals which began to create the basis for the establishment of service user involvement.

STARTING POINTS FOR INVOLVEMENT IN RESEARCH

Origins of involvement in research

The origins of involvement in research mirror the origins of the service user/survivor movement generally. They began with efforts by individuals and groups to make sense of their experience, reclaim their identity and have a say in the mental health world. Most of the involvement examples in this book show that it has been the result of people's actions on their personal and collective journeys towards empowerment. For instance, some service users/survivors have found their way into research through their efforts to change things so that others will get a better experience than they did.

Individuals making sense of their own experience

A US example is the work of an individual, Leonard Roy Frank (1978) who researched and compiled an anthology of information about ECT. In testimony, Frank (2001) described his reasons for starting his research on ECT:

In 1962, three years after moving to San Francisco, I was diagnosed as a 'paranoid schizophrenic' and committed to a psychiatric institution where I was forcibly subjected to 50 insulin-coma and 35 electroconvulsive procedures. This was the most painful and humiliating experience of my life. My memory for the three preceding years was gone. The wipe-out in my mind was like a path cut across a heavily chalked blackboard with a wet eraser. Afterwards I didn't know that John F. Kennedy was president although he had been elected three years earlier. There were also big chunks of memory loss for events and periods spanning my entire life; my high school and college education was effectively destroyed.... Following years of study re-educating myself, I became active in the psychiatric survivors Movement ... In 1978 I edited and published The...