Experiences with early intervention in schizophrenia: An ethnographic study of assertive community treatment in Denmark John Aggergaard Larsen PhD thesis, The University of Sheffield, Department of Sociological Studies Supervisor: Professor Richard Jenkins Submission: August 2002 Experiences with early intervention in schizophrenia: An ethnographic study of assertive community treatment in Denmark John Aggergaard Larsen PhD thesis, Department of Sociological Studies, University of Sheffield, August 2002. Abstract The thesis presents a person-centred ethnographic study of individuals' experiences following first-episode psychosis as they received treatment and support from the OPUS early intervention programme in Copenhagen, Denmark. It describes individuals' struggles to come to tenns with overwhelming experiences during their psychosis, and their engagement in identity work as they reconstructed individual life projects. Examining individual-society relations, it is a study of health and social policy in practice, from an existential and cultural phenomenological perspective. The researcher took an active membership role - as evaluator - in the programme, and fifteen key infonnants described their situations and experiences during in-depth interviews and through written narratives. The longitudinal design allowed for individuals' changes in attitudes and life circumstances to be described, and for a dialogical approach. The study explores the community intervention programme from the recipients' perspectives, examining individual processes of transfonnation in the event of serious psychiatric diagnosis. It describes their social roles in their relationship to treatment staff, their views on medication, and the workings of the therapeutic interventions through psycho-education, multiple-family groups, and social skills training groups. Processes of recovery are analysed as symbolic healing. The OPUS organisation, as well as the general Danish welfare system and the labour market, detennined the life choices available to these individuals and their possibilities for social integration. Infonnants' experiences of mental illness and mental healthcare constituted existential crises in which their senses of ontological security were suspended as their lives were disrupted. -While some infonnants chose a strategy of 'sealing over' their experiences others 'integrated' them in various ways: either by dogmatically endorsing one particular explanation or by combining different systems of explanation from the cultural repertoire in a creative analytical and theory-building work of bricolage. Re-establishing a sense of biographical continuity - connecting the individual's past, present and future - was crucial to each person's sense of self and experience of recovery. Acknowledgements First of all I would like to thank the fifteen key infonnants of this study, who have shared their experiences and reflections with me. They have all contributed with significant insights which informed my understanding of the difficult issues which are presented in this thesis. I will refrain from specifying my individual thanks, since I am confident that the empirical presentation will reveal how each has enriched the discussions. I am also grateful to my fonner colleagues and the leaders of the OPUS project in Copenhagen, who appointed me as evaluator and let me participate in the activities of the intervention programme. I especially enjoyed the friendly atmosphere among the staff at Degnestavnen, where I had my base during the fieldwork. Also, I would like to thank the participants in OPUS, as well as their relatives, for accepting my presence in various activities and sharing their views with me. This study would not have been possible without the financial support from the Danish Research Agency (Forskeruddannelsesradet) - I am grateful that they believed in the potential of the research and that they, later, were flexible to adjust to changing circumstances. Professor Susan Reynolds Whyte of the Department of Anthropology, University of Copenhagen was helpful in the development of the study. The University of Sheffield provided me with valuable professional tools through their Research Training Programme and a friendly and encouraging social environment among the staff and students of Department of Sociological Studies. When I was in Copenhagen, it helped me to participate in the discussions and exchange of experiences during our meetings in the group for anthropologists working in the field of social policy. Parts of this thesis have been read and commented upon by my friends and colleagues: Mike Williams, Nanna Mik-Meyer, Thomas Uhd, and Torkil Clemmensen. Without naming all, I also wish to thank my other friends who, throughout the years, have given me invaluable personal support and enriched my professional and general understanding, crucial to the work presented here. My PhD supervisor, Professor Richard Jenkins at Department of Sociological Studies, University of Sheffield has done more to support and encourage this study from its very beginning to the writing of the last word, than it is possible for me to fully acknowledge here. His personal and academic approach to the theory and practice of anthropology and sociology - or the study of the human world, as he might say - remains an inspiration. Undertaking this study has not only brought me new insights in a fascinating and challenging field of research, but its circumstances have also brightened my view in a much broader sense - I am indebted to Dominica Coulson. Finally, I dedicate this work to my parents, who have always supported me . .. 11 Contents CHAPTER ONE: INTRODUCTION ...................................................................................................... 1 Focus OF THE STUDy ............................................................................................................................... 2 MENTAL ILLNESS AND IDENTITY: A THEORETICAL PERSPECTIVE ............................................................. 5 WHAT IS SCHIZOPHRENIA?: THE REALITY OF MENTAL ILLNESS ............................................................... 9 CRITIQUE OF THE BIOMEDICAL MODEL OF MENTAL ILLNESS .................................................................. 13 MENTAL ILLNESS AS A SOCIAL PHENOMENON ........................................................................................ 18 LABELLING PROCESSES: SOCIAL ROLE, STIGMA, AND UNDERSTANDING ................................................ 21 MENTAL HEALTH INTERVENTION: CONSEQUENCES FOR INDIVIDUAL LIFE PROJECTS ............................. 25 OUTLINE OF THE THESIS ......................................................................................................................... 26 CHAPTER TWO: METHOD ................................................................................................................. 28 POSITIONING IN THE FIELD OF RESEARCH ............................................................................................... 28 ETHNOGRAPHIC STUDY OF MENTAL HEALTH .......................................................................................... 33 INTERVIEWS WITH KEY INFORMANTS ..................................................................................................... 40 MULTIPLE-METHOD APPROACH AND OUTLINE OF DATA ......................................................................... 50 DATA HANDLING AND ANALySIS ............................................................................................................ 55 THE PERSON-CENTRED ETHNOGRAPHIC APPROACH ................................................................................ 62 CHAPTER THREE: MENTAL HEALTH CARE IN DENMARK•..•... :............................................ 63 THE DE-INSTITUTIONALISATION OF PSYCHIATRY ................................................................................... 63 THE EMERGENCE OF SOCIAL PSyCHIATRy .............................................................................................. 69 INTRODUCING NEW FORMS OF MENTAL HEALTH CARE IN THE OPUS PROJECT ....................................... 75 NEW DIRECTIONS IN MENTAL HEALTH CARE .......................................................................................... 81 CHAPTER FOUR: BECOMING MENTALLY ILL ........................................................................... 83 THE STRESS OF LIFE ............................................................................................................................... 83 PSYCHOTIC EXPERIENCES ...................................................................................................................... 92 CONTACT WITH MENTAL HEALTH CARE ............................................................................................... 101 CONTINGENCIES WHEN BECOMING MENTALLY ILL ............................................................................... 106 CHAPTER FIVE: INCLUSION IN OPUS .......................................................................................... 108 GETTING THROUGH THE SCREENING INTERVIEWS ................................................................................ 108 SITUATION AT INCLUSION .................................................................................................................... 113 FIRST IMPRESSIONS OF OPUS .............................................................................................................. 125 EXPECTATIONS OF THE FUTURE ..........................................................................................................