MIAMI UNIVERSITY The Graduate School Certificate for Approving the Dissertation We hereby approve the dissertation of Donald J. Domenici Candidate for the Degree Doctor of Philosophy ________________________________ Larry M. Leitner, Ph.D. Director ________________________________ Roger M. Knudson, Ph.D. Reader ________________________________ William B. Stiles, Ph.D. Reader _________________________________ Keith Tuma, Ph.D. Graduate School Representative ABSTRACT LISTENING TO THE VOICES OF CONSUMERS AND SURVIVORS: A QUALITATIVE STUDY OF EMPOWERMENT AND THE MENTAL HEALTH SYSTEM By Donald J. Domenici In recent years, there has been much discussion about the need for reforming the mental health system, including several government reports that address this topic. Although these government reports have mentioned the importance of involving consumers and their families in the process of reforming the mental health system, they are unclear about how we should go about doing so. Many authors have also identified stigma, discrimination, and empowerment as significant issues to address through mental health reform. The purpose of this study was to model a way that mental health professionals can engage in dialogue with people who utilize mental health services about how to improve the mental health system. I spoke to three women who have had varying experiences of mental health treatment. My goals were to generate dialogue across multiple perspectives and learn about participants‟ experiences in the mental health system, specifically with regard to stigma, discrimination, and empowerment/disempowerment. I also sought to foster empowerment and collaboration in my conversations with participants by encouraging them to share their views about mental health reform, attending carefully to their words, and inviting them to provide feedback about what I wrote. To analyze our conversations, I utilized a modified version of the Listening Guide, a qualitative research method that highlights relationality, aesthetics, and multiplicity in participants‟ voices. Through this study, I learned that there is a need for people who utilize mental health services to express their voices by telling their stories, inner dialogue plays a significant role in how people experience the mental health system, and mental health professionals need to be more aware of how their biases can influence treatment. I also learned about participants‟ experiences of stigma, discrimination, and empowerment. LISTENING TO THE VOICES OF CONSUMERS AND SURVIVORS: A QUALITATIVE STUDY OF EMPOWERMENT AND THE MENTAL HEALTH SYSTEM A DISSERTATION Submitted to the faculty of Miami University in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Psychology by Donald J. Domenici Miami University Oxford, Ohio 2010 Dissertation Director: Larry M. Leitner, Ph.D. TABLE OF CONTENTS Introduction…………………………………………………………………………….……….....1 The Need for Mental Health Reform….…………………..………………………....…....2 Consumer and Survivor Organizations….………………..……………………………....3 Stigma, Discrimination and Empowerment….…………..…………………………..…...4 Generating a Multilogue….…………………….…………………………………..…....11 My Positions/Biases….……………………………..…………………….………...…....13 Goals of the Present Study….……………..………………………………………..…....14 Method………………………………………………………………………………………......16 Participants………………………………………………………………………………16 Procedure …………………………………...……………………………………….......16 Analysis………………….………………………………………………………….…....17 Results - Participant 1 (Sally)”………………….………..…………………………………...…21 First Reading: Main Narrative…………………………..………………………………21 Second Reading: The Voice of the Speaker………………...…………………………….28 Third Reading: Content Poems……………………………..……………………………30 Fourth and Subsequent Readings: Contrapuntal Voices…..………………………….…32 Synthesis……………………………………………………….…………………………35 Follow-up Contacts…………………..…………………….…………………………….38 Concluding Remarks……………………………………….……………………………..40 Results - Participant 2 (Elsie)………………………………………………..………………..…42 First Reading: Main Narrative……………………………...…...………………………42 Second Reading: The Voice of the Speaker……………………..……………………….49 Third Reading: Content Poems……………………………….....……….………………51 Fourth and Subsequent Readings: Contrapuntal Voices………..…………………….…53 Synthesis………………………………………………………….………………………56 Follow-up Contacts…………………..………………………….……………………….61 Concluding Remarks……………………………………………….……………………..62 Results - Participant 3 (Marcia)……………………………………………..………….……..…64 First Reading: Main Narrative…………………………….…………..…………………64 Second Reading: The Voice of the Speaker………………….……..……..………………70 Third Reading: Content Poems……………………………………………..…….………73 Fourth and Subsequent Readings: Contrapuntal Voices……………………..….……….75 Synthesis……………..……………………………………….…………………..………78 Follow-up Contacts………………….....…………………………………………………82 Concluding Remarks………………………………………………...…………………….82 Discussion………………………………………………………………………………...…….84 Summary……………..……………………………………………………………………84 Revisiting the Stigma, Discrimination, and Empowerment Literature…….……………...87 Implications for Mental Health Reform……………………………………..…………….90 The Use of Poetry in the Present Study………………………………………..…………..93 My Experience of Interacting With Participants…………………………………..………94 Limitations of the Present Study………………………………………………………..…97 References………….…………………………………………………………….…………..…99 Appendix A………………………………………………………………………......................102 Appendix B……………………………………………………………………….………….....104 ii Appendix C……………………………………………………………………….………...…..105 Appendix D……………………………………………………………………….………….....106 Appendix E…………………………………………………………………………………......185 Appendix F……………………………………………………………………………...............193 Appendix G………………………………………………………………………......................197 Appendix H……………………………………………………………………….………….....298 Appendix I……………….……………………………………………………….………...…..305 Appendix J……………….……………………………………………………….………….....308 Appendix K…………………………………………………………………………………......351 Appendix L……………...……………………………………………………………...............357 iii Listening to the Voices of Consumers and Survivors: A Qualitative Study of Empowerment and the Mental Health System Chapter 1: Introduction In recent years, many have pointed out the need for reforming the current mental health system (e.g., Everett, 2000; New Freedom Commission on Mental Health, 2003). According to Everett and various others, one important goal of mental health reform is to reduce stigma (negative stereotyping) and discrimination (social exclusion) against people who experience serious psychological distress. In addition, many authors have advocated for empowering people who receive mental health services (e.g., Linhorst & Eckert, 2003; Rose & Black, 1985). Empowerment here refers to people having the personal/political resources and opportunities to fully participate in society and decide what role the mental health system will play in their lives. One way to further a goal of empowerment is for mental health professionals to honor the voices of people who utilize mental health services by listening to what they have to say about their experiences in the mental health system (Chamberlain, 1995). Such movement toward empowerment could be a potentially useful and inclusive way to examine and improve the system. Ultimately, listening to patients, clients, consumers, and survivors could pave the way for more open dialogue, where the expertise of people living with serious psychological distress is valued as much as the expertise of the psychiatrists, psychologists, and other mental health professionals that work to help them. In the present study, I intended to model a way that mental health professionals can engage in dialogue with people who utilize mental health services about how to improve the mental health system. To be effective, such dialogue needs to involve multiple perspectives (i.e., a multi-logue), including the voices of people who have been impacted by the mental health system as “clients,” “consumers,” “patients,” “ex-patients,” and “survivors.” Therefore, in the present study, I sought out people who held differing perspectives regarding their experiences in the mental health system and looked at multiple positions within each participant‟s narrative. Through collaborative dialogue, I hoped to learn more about people‟s experiences of stigma, discrimination, and empowerment/disempowerment in the mental health system, and better understand how psychiatric labeling and mental health treatments help and/or hurt people. I also hoped to generate ideas about how professionals can improve the mental health system to meet better the needs of the people it serves. As I will describe, I made empowerment a central aspect of my study, not only as a topic of my conversations with participants, but also in the process of how our conversations were structured. Specifically, I wanted participants to feel more empowered through the process of our dialogue. By utilizing a qualitative approach that involves fostering a collaborative relationship with participants, attending carefully to their words (rather than attempting to quantify or categorize participants), and involving them at the level of co- researchers, I treated participants as empowered activists rather than passive subjects. Along the way, I engaged in self-reflection to examine how my own biases and opinions might be influencing the process of our conversations. To put the present study in context, I will describe the present state of mental health reform, focusing primarily on the consumer/survivor movements. In doing so, I will highlight