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Persistent Taboo Understanding Mental Illness and Stigma
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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. Paill 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. 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 my wife Nikmatun Khasanah for graciously giving me time space and. support to complete my PhD program at the University of Ottawa Canada Thank you so. much to my parents my mother Siti Muhani Kalu and both of my parents in law Noor. Adcha and Teti Nurhayati for their love and support. LIST OF FIGURES, Figure 2 1 Prevalence of Severe Mental Illness in Indonesia 21. Figure 4 1 Categories 131,LIST OF TABLES, Table 3 1 Grounded Theory Data Analysis Paill 1994 57. Table 3 2 Final Categories 59,RESEARCH PROBLEM,1 1 Introduction. Mental health is the successful performance of mental functions that result in. productive activities in fulfilling relationships with other people and the ability to adapt to. change and to cope with adversity According to the World Health Organization WHO. 2011b mental health is a state of well being in which every individual realizes his or her. own potential can cope with the normal stresses of life can work productively and. fruitfully and can make a contribution to her or his community p 1. Mental health problems become mental illnesses when signs and symptoms of. sufficient intensity or duration meet the criteria for any mental disorder A mental illness is. defined as collectively all diagnosable mental disorders or health conditions that are. characterized by alterations in thinking mood or behaviour or some combination thereof. associated with distress and or impaired functioning U S Department of Health and. Human Services 2001 p 7 Mental illnesses are generally a combination of how people feel. act think and perceive They are associated with particular regions or functions of the brain. or the nervous system According to Kitchener and Jorm 2002 there are different types of. mental illnesses some of which are common such as depression and anxiety and some not. so common such as schizophrenia and bipolar disorder In addition evidence has shown that. mental illnesses are related to many chronic diseases including diabetes cancer. cardiovascular disease asthma and obesity They also appear to be related to the many risk. behaviours such as physical inactivity smoking excessive drinking and insufficient sleep. that often lead to chronic disease Chapman Perry and Strine 2005 A mental illness refers. to an actual illness while a psychiatric disability refers to the impairment the individual. experiences as a result of mental illness Hawari 2001. In most countries over a third of people report problems at some time in their life that. meet the criteria for diagnosis of one or more common mental illnesses WHO International. Consortium in Psychiatric Epidemiology 2000 By 2020 some authors predict that 15 of. the global population will have mental problems Harpham et al 2003 According to the. WHO 2011a mental health disabilities account for 37 of global healthcare costs that are. related to non communicable illness Much of the economic burden of mental illness. however is not the cost of care but the loss of income due to unemployment expenses for. social supports and a range of indirect costs due to chronic disabilities that begin early in. life Bloom et al 2011 Mental illness is a double edged sword those affected not only. have to deal with the symptoms and disabilities of their illness but also with discrimination. or stigma Kapungwe et al 2010 It is a widespread problem and is part of the experience. of having a mental illness Borinstein 1992 Corrigan Markowitz and Watson 2004 Crisp. et al 2000 Link et al 2001, The word stigma which originated in ancient Greece described the marking or. branding of slaves Falk 2001 It was also used to describe body sign s that indicated. something bad about the moral character of a particular person or group Goffman 1963. defines stigma as an attribute that is deeply discrediting and that reduces the bearer from a. whole and usual person to a tainted discounted one p 3 Link and Phelan 2001 define. stigma as the co occurrence of its components of labeling stereotyping separation and. status loss and discrimination Stigma is the most important barrier to quality of life of. mentally ill patients and family members Stigma deprives people of their dignity and. interferes with their full participation in society Anglin Link and Phelan 2006 It. interferes with the potential of the individual to be part of a supportive social relationship. and to openly identify with others about their mental illness Stigma results in prejudice and. leads to fear suffering low self esteem mistrust low self efficacy and violence It is. manifested in negative attitudes behaviours and feelings toward stigmatized people or. groups A person with a mental illness may feel the effects of social rejection isolation and. discrimination for most of his or her life Corrigan Markowitz and Watson 2004 Link et. al 2001 Nelson 2002 Stigmatization of mental illness creates a vicious cycle of. discrimination and social exclusion not only for those who suffer from a mental illness but. also for all of those who are associated with them This discrimination leaves many people. unable to seek treatment and prevents the development of appropriate policies in the field of. mental health Harpham et al 2003 WHO 2001 Stigmatizing attitudes toward people. with mental illnesses and their healthcare professionals will jeopardize patients recovery. because they generate institutional discrimination and community isolation. Stigma has been studied and explored from multiple perspectives and disciplines. Studies in Western countries show that the associations of mental illness with drug and. alcohol abuse generate sentiments of blame and condemnation holding those affected. responsible for their illness Sartorius 2007 Schulze 2007 Other studies also view. causation as strongly associated with discriminatory attitudes towards people with mental. illnesses Crisp et al 2000 Gureje et al 2005 Many authors have probed the conscious. mechanisms that produce boundaries between people with mental illnesses and so called. normal people For example only about 50 of Canadians would tell friends or coworkers. that they have a family member with a mental illness compared to the 72 who would. discuss diagnoses of cancer or the 68 who would talk about diabetes in the family. Canadian Medical Association 2008, In developing countries stigma is ubiquitous and insidious across the entire society.
One study in Zambia revealed that stigma was directed not only towards those labeled as. mentally ill but also extended to family members across generations and even to psychiatric. hospitals themselves Kapungwe et al 2010 Very little attention is devoted to addressing. the negative beliefs and behaviours surrounding mental illness in South Africa Hugo et al. 2007 This corroborates findings from other studies that also demonstrate that this kind of. discrimination extends to both family members and to those who work in psychiatric. hospitals Byrne 1997 Lauber and Sartoruis 2007 Rosen Walter Casey and Hocking. 2000 In addition the media has often depicted people with mental illness as violent erratic. and dangerous Diefenbach 1997 Granello Pauley and Carmichael 1999 Monahan 1992. According to the Ministry of Health MOH of Indonesia 2013 the prevalence of. severe mental disorders is 1 7 per 1000 population and for mild mental disorders is about 60. per 1000 population Most people with severe mental illnesses live in Yogyakarta Aceh. South Sulawesi Bali and Central Java provinces According to data from 33 psychiatric. hospitals Rumah Sakit Jiwa or RSJ 2 5 million people had severe mental illnesses in 2012. Rudi 2012 The causes of mental disorders in Indonesia are related to biological socio. demographic and psycho educational factors Socio demographic factors include age sex. population density education marital status occupation family economics and perception. of social rank, The treatment of mental illnesses in Indonesia is not optimal Maramis 2007 Less. than 1 of Indonesia s total healthcare budget is directed towards mental health services the. lowest in Asia and the country has one of the lowest ratios of psychiatrists per capita in the. world Irmansyah 2010 Over half of these psychiatrists work in the capital city of Jakarta. Meshvara 2002 According to Minas and Diatri 2008 the quality of hospital mental. health services is also not ideal Healthcare workers lack knowledge and skill in diagnosing. mental illness and public health facilities for the treatment of mental health problems. public health centers hospitals and the practice of general practitioners are limited Rudi. 2012 These limited services coupled with low public awareness of both mental illness and. treatment facilities make it difficult for community members to access healthcare facilities. Therefore families tend to bring patients to traditional healers religious leaders or to those. involved with other types of alternative treatments It has been argued however that the. involvement of traditional healers constitutes the only feasible way of making mental. healthcare available to the entire Indonesian population Connor 1982. In Indonesia the stigma of mental illness is widespread among society at large as well. as among healthcare professionals Seventy five percent of mentally ill Indonesians have. personally experienced stigma by the general public government healthcare workers and. through the media all of which often portray them as violent incompetent and as objects of. ridicule Hawari 2001 The breadth of stigma impacts mentally ill patients severely. Because the stigma of mental illness is rarely discussed openly this produces. misunderstanding prejudice confusion and fear Families and relatives often hide or. ostracize the mentally ill because they are too embarrassed to bring them to a mental health. care facility Therefore many patients are abandoned and neglected and become homeless If. families do take their relatives to a psychiatric hospital they rarely visit them Those who. were hospitalized who return home report having difficulty socializing with their family and. friends or others in the community For these reasons many patients prefer to stay in the. hospital forever Hawari 2001, Patients experience both physical and psychological violence at the hands of family. staff community and government Families and communities often practice pasung. restraint meaning that patients are tied chained or handcuffed They also practice seklusi. seclusion by confining patients in small rooms or animal cages or isolating them in the. jungle Some conditions are appalling in some cases patients have only a hole in the floor. for urine and feces Hawari 2001 These practices are carried out to control patients. violent behaviour or because their families and friends are ashamed of their mental illness. Psychologically violent behaviours include social isolation abandonment and blacklisting. or labeling Many patients are insulted discredited devalued scorned and shunned leading. to their rejection and ostracizing by their communities. Patients are isolated by family members because they are believed to have a cursed. illness one that has been brought about by witchcraft Demonic possession the belief that. sufferers of mental illness are possessed by demons spirits devils ghosts or have had a. spell cast upon them by someone Hawari 2001 is common among Indonesian cultures. and religions Traditional or alternative healers referred to as smart people are thus often. the first choice for treatment by patients and their families and community members Kiyai. or ulama chaplains dukuns shamans paranormals and Chinese healers are several types. of smart people However during the treatment process of trying to remove the devil Satan. or demons from the person s body these traditional healers are often physically or. psychologically abusive of their patients Hawari 2001. According to Hawari 2001 however even patients who do receive treatment at a. psychiatric hospital may experience violence from hospital staff Nurses and security. personnel sometimes restrain patients by tying or handcuffing them and some patients are. placed in a dark seclusion room Even in hospitals patients with a mental illness are often. neglected and hospital staff do not treat them with dignity or respect and fail to protect them. Amalia 2010, Erving Goffman 1963 reported on the patronizing attitude and moral superiority. directed towards mentally ill patients in hospitals in the early 1960s Mental health nurses. can sometimes demonstrate a degree of stigma with consequent abuse of patients and their. families But they are also often the objects of stigma themselves which may help to deter. patients and families from seeking the care they need There is an assumption that working. in a psychiatric hospital is risky both because of the belief that mental illness is a contagious. disease Amalia 2010 and the fear that nurses who work in a mental health area will face. physical and psychological threats from their patients Nursanti 2006 Many non. psychiatric nurses also hold these beliefs and make the assumption that mental illness is. synonymous with being insane Nursanti 2006 leading to their viewing psychiatric or. mental health nursing unfavorably Izzudin 2006, Throughout my own career as a mental health nurse and educator it has been clear. that there are still many distortions and misconceptions of mental health nursing practice and. mentally ill patients For example as a mental health nurse I was surprised by how many. people assumed that I had suffered an injury as a result of working in a mental health. hospital It is essential to understand the concept of stigma and mental illness and its effects. and to develop interventions to guide practice education and research in mental health. 1 2 Research Objectives, An intensive literature review reveals that very little is known about stigma and mental.
illness in Indonesia Studies that examine stigma and mental illness among the Indonesian. population have not addressed its impact on adults who experience concurrent stigma nor. have they investigated the impact of stigma in mental illness on treatment utilization My. research investigates how mentally ill adults in Indonesia perceive mental illness and how. they respond to stigmatization in their lives In addition it provides a more in depth analysis. to understand the relationships between stigmatization and mental illness and how they. affect access to treatment Equally important is an examination of the role and practice of. Indonesian nurses in a psychiatric setting and how they understand mental illness A further. goal is to help inform mental health policies and regulations in the republic of Indonesia A. constructivist grounded theory Charmaz 2006 is used to understand the link between. mental illness and stigma in Indonesia and to examine the influences of stigma on access to. mental health services The way that the research problem and questions are formulated in. grounded theory reflects its methodological objective of explaining what is actually. happening in practical life rather than describing what should be going on McCallin 2003. 1 3 Research Questions, a How do mentally ill adult persons in Indonesia represent themselves and their. b What is the mentally ill adult person s experience of stigmatization related to.


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