Persistent Taboo Understanding Mental Illness and Stigma among Indonesian Adults Through Grounded Theory by Muhammad Arsyad Subu Submitted to the Graduate Faculty of Health Sciences School of Nursing In partial fulfillment of the requirements for the degree of Doctor of Philosophy Thesis Supervisors: Professor Dave Holmes, RN., PhD Jayne Elliott, PhD PhD Program Faculty of Health Sciences School of Nursing University of Ottawa Ottawa Ontario, Canada © Muhammad Arsyad Subu, Ottawa, Canada, 2015 ABSTRACT This study explored stigma associated with mental illness among Indonesian adults living in Indonesia. It investigated how mentally ill adults (both mentally ill patients and mental health nurses) perceive mental illness and how they respond to stigmatization on a daily basis. Given the current state of knowledge with regards to the meaning and process of stigma and mental illness among adults in Indonesia, a constructivist grounded theory was considered to be the method of choice for this study. We recruited 15 nurses and 15 patients to participate in the study; all from a psychiatric hospital in Indonesia. Data collection methods involved semi-structured interviews with the 30 participants as well as mute evidence, field notes and memos. Data analysis occurred over a period of six months. In keeping with the basic principles of a grounded theory method (Charmaz, 2006) as well as Paillé’s (1994) structure for data analysis which are congruent with Charmaz’s principles and include stages of codification, categorization, linking categories, integration, conceptualization, and theorization, 5 discrete but interrelated categories were produced: 1) treatment of mental illness; 2) violence; 3) fear; 4) constructing cursed citizens; and 5) stigmatization. Research results show that the experience of stigma for mentally ill patients in Indonesia is pervasive and impedes mental health services utilization. The stigmatization of mental illness is manifested by family members, members of the community, mental health professionals and staff, and also by governmental institutions and the media. Stigmatization is characterized by violence, fear, exclusion, isolation, rejection, blame, discrimination, and devaluation. Moreover, because of their (mis)understanding of mental illness, patients and families turn to alternative treatments provided by non-professionals (shamans, Islamic leaders, paranormals and traditional Chinese medicine); these individuals play a central role in supporting and offering solutions for someone suffering from a mental illness. In Indonesia, stigma affects mentally ill individuals at many levels. Until stigma associated with mental illness is addressed nationwide, those suffering from mental illness will continue to suffer and be prevented from accessing mental health services. As the results of this study have shown, patients seeking treatment experience violence and fear. Families and their mentally ill relatives have been expelled by their community, or have simply disappeared. Both physical and psychological abuse and humiliation have led to patients being avoided, rejected, and neglected, and thus isolated, hidden, or abandoned to the streets. There is a pressing need to combat mental illness stereotypes in Indonesia and health professionals, namely nurses, government agencies as well as the media must play a pivotal role in this process. TABLE OF CONTENTS ABSTRACT ............................................................................................................................ ii ACKNOWLEDGEMENT ...................................................................................................... v LIST OF FIGURES ............................................................................................................... vi LIST OF TABLES ................................................................................................................ vii CHAPTER 1: RESEARCH PROBLEM ................................................................................. 1 1.1. Introduction ...................................................................................................................... 1 1.2. Research Objectives ......................................................................................................... 8 1.3. Research Questions ........................................................................................................... 8 1.4. Theoretical Inspiration ...................................................................................................... 9 CHAPTER 2: LITERATURE REVIEW .............................................................................. 11 2.1. Mental Health and Mental Illness .................................................................................. 11 2.2. Mental Health and Mental Illness in Indonesia ............................................................. 17 2.3. Violence and Mental Illness ............................................................................................ 27 2.4. Fear and Mental Illness ................................................................................................... 31 2.5. Restrictive Measures and Mental Illness ........................................................................ 33 2.6. Stigma and Stigmatization .............................................................................................. 37 CHAPTER 3: METHODOLOGICAL CONSIDERATIONS .............................................. 45 3.1. Research Paradigm .......................................................................................................... 45 3.2. Charmaz’s Constructive Grounded Theory .................................................................... 48 3.3. Research Setting and Participants .................................................................................. 50 3.4. Data Collection Methods ............................................................................................... 52 3.5. Data Analysis Methods .................................................................................................. 56 3.6. Rigour ............................................................................................................................ 62 3.7. Translation Process ........................................................................................................ 64 3.8. Ethical Issues ................................................................................................................. 66 CHAPTER 4: RESULTS ...................................................................................................... 69 4.1. Category 1: Treatments ................................................................................................... 69 4.2. Category 2: Violence ..................................................................................................... 94 4.3. Category 3: Fear ............................................................................................................ 103 4.4. Category 4: Constructing Cursed Citizens ................................................................... 107 4.5. Category 5: Stigmatization ........................................................................................... 114 4.6. Summary and Integration of Study Results .................................................................. 124 CHAPTER 5: DISCUSSION AND CONCLUSION .......................................................... 132 REFERENCES ................................................................................................................... 170 APPENDICES ...................................................................................................................... 221 APPENDIX A – Letter of Permission from Dr. Marzoeki Mahdi Hospital ........................ 222 APPENDIX B – Ethical Approval From REB University of Ottawa……………………..223 APPENDIX C – Consent Form (english and indonesian)………………………………...225 APPENDIX D – Proof of Certified Translator...………………………………………… 229 APPENDIX E – Interview Guide (s)…………………………………………………….. 230 ACKNOWLEDGEMENTS First of all, I would like to express my deepest gratitude to my supervisor, Professor Dave Holmes, PhD, RN, who has provided timely advice and support throughout the incredible journey of my research and writing. I thank him for his expertise and insight that has gently guided me and supported me throughout the proposal and during dissertation processes. He is professional, as well and I have benefitted enormously from his approach. Jayne Elliot, PhD, I would like to express my sincere gratitude and appreciation for all your help and guidance especially on writing help throughout my thesis. I particularly thank the hospital director and Director of education and research Unit of Dr. Marzoeki Mahdi Mental (RSMM) Hospital Bogor West Java in Indonesia. My grateful thanks also go to the participants in this study for generously giving of their time, energy, and wisdom. Without them, this study would not have been possible. I thank those volunteers for their support and assistance. Last, but not least, my family is caring, supportive, and an essential part of my study process. I would like to thank my family for all their support and encouragement through the nursing program. Thank you for being patient with my hectic schedule and for understanding that I had limited time to spend with you while in the program. I would like to acknowledge them, especially