Keywords

FormalPara Editors’ Note

A number of paradigms exist for prospectively identifying individuals who have elevated risk for developing psychosis due to the presence of syndromes comprised of identifiable risk factors and risk indicators. Conventions for which models are used, how individuals are identified, and which terminologies predominate vary throughout the world, sometimes related to culturally linked factors. In order to capture this diversity within one volume, the term Attenuated Psychosis Syndromes (APS) is used here to collectively refer to the class of putative prodromal or psychosis risk syndromes that have been empirically validated. We acknowledge that this is not a universally accepted convention, but use it as an umbrella term due to its heuristic value.

1 Introduction

Since Alison Yung and Patrick McGorry launched the project of systematic studies of the “prodromal” phase of psychotic illness in their pioneering work in the early 1990s (Yung & McGorry, 1996a, 1996b), the field has made almost unimaginable progress. The development and evolution of widely accepted methods for defining “ultrahigh-risk ” (UHR) or “clinical high-risk” (CHR) groups , the most prominent and validated forms of Attenuated Psychosis Syndromes (APS), and long traditions of studying “basic,” particularly cognitive, symptoms and their evolution have allowed researchers around the world to identify populations and follow them prospectively, with the goal of determining what percentage of at-risk populations actually “convert” to psychosis and what the most important risk and protective factors are that play a role in determining who will develop a psychotic illness and who will not. As this work has developed, it has had both critical basic science and public health/clinical dimensions. On the one hand, wide-ranging research is characterizing neurocognitive, social function, neuroimaging, hormonal, and inflammatory markers, providing insight into the developmental processes that lead to psychotic illnesses (see Fusar-Poli et al., 2013; Woodberry, Shapiro, Bryant, & Seidman, 2016 for reviews). On the other hand, the research has always had a clinical and public health basis. The work by the Melbourne team was rooted in the EPPIC (Early Psychosis Prevention and Centre), a specialized clinical service for young people, and resulted in the Comprehensive Assessment of At-Risk Mental States (CAARMS) (Yung et al., 2005). The Yale work, which produced another important instrument used to determine high-risk populations, the Structured Interview of Prodromal Syndromes/Scale of Prodromal Symptoms (SIPS/SOPS ) (Miller et al., 1999), was rooted in the PRIME Research Clinic (Prevention Through Risk Identification, Management, and Education). The dream of being able to “prevent” – a term present in the name of both clinical services – the emergence of psychosis was a critical element in what Mary-Jo Good (2001) calls the “medical imaginary” that has driven this whole field.

The “early psychosis movement” has had global reach. On the one hand, the vast majority of research in this field has always been done in Europe, North America, Australia, and New Zealand. On the other hand, operationalization of criteria for “psychosis risk” (PR) has enabled researchers globally to identify prospective groups of young people who may be defined as high risk, provide basic services for these persons, follow them longitudinally, estimate numbers who convert to psychosis, and provide some evidence for local social and cultural factors associated with those who become psychotic and those who do not. While not comparable to large pooled studies being conducted in the United States and Europe, some elements of such work have been conducted in settings in Asia as diverse as Japan, Hong Kong, China, Korea, Taiwan, Singapore, and Malaysia but also in Kenya and South Africa, as well as Tunisia. (Studies include Katsura et al. (2014); Shioiri, Shinada, Kuwabara, and Someya (2007); Lam, Hung, and Chen (2006); Zhang et al. (2014); Kwon, Shim, Park, and Jang (2010); Liu et al. (2011); Chong et al. (2011); Razali, Abidin, Othman, and Yassin (2015); Paruk, Jhazbhay, Singh, Sartorius, and Burns (2015); Mamah et al. (2016); and Braham et al. (2014). This list is not intended to be comprehensive.) The basic idea of extending “phase-specific treatment ” – the term that McGorry has long advocated as the model for treatment of psychotic illness – into the prepsychotic phase of illness has influenced the development of specialized early intervention services in some settings around the world. (A partial listing includes those from Japan (Mizuno et al., 2009; Mizuno, Nemoto, Tsujino, Funatogawa, & Takeshi, 2012) and Korea (Kwon et al., 2010), as well as the Easy Program in Hong Kong (Tang et al., 2010). See also Singh (2015) and Keshavan, Shrivastava, and Gangadhar (2010) for a review of the situation in the Indian context.) And the imagination of “preventing” schizophrenia has inspired psychiatrists and mental health specialists globally. Nonetheless, in settings with extraordinarily limited human and financial resources devoted to mental health care, mental health specialists have questioned the ethics of diverting funds from bringing into care persons living with untreated psychotic illness to develop early intervention programs for young people, knowing that only 30% may develop a severe mental illness (Singh, 2015; Keshavan et al., 2010). De Jesus Mari, Razzouk, Thara, Eaton, and Thornicroft (2009), in a review of packages of care for schizophrenia in low- and middle-income countries, conclude that despite a consensus of the public health benefits of early intervention, there is “signal lack of evidence for such benefits in LLMICs.”

The development of a comparative cross-national and cross-cultural stream of research , based on the operationalization and translation of criteria developed for North American and European populations, has both enormous positive dimensions and at the same time critical limitations. On one hand, this work allows genuine comparisons. It allows questions to be raised about the process of the emergence of psychosis and about neurobiological correlates and social forces that may play a role in determining who does and does not become psychotic, given high risk. And it builds an international network of collaborators, focusing attention not simply on care for the chronically ill but on young people who are at particular risk. Such a focus extends ideas about phase-specific treatment in ways that have the potential to transform classic hospital-based care while linking services to research.

On the other hand, the development of a rigorous research paradigm that uses SIPS or CAARMS criteria to define at-risk populations, and then builds research programs that follow individuals prospectively with the primary focus on the question of who does and who does not convert, also has limitations from a cross-cultural perspective. It might be recalled that Yung and McGorry’s pioneering work began with retrospective studies of small groups of first-episode cases in one cultural setting – in Australia. “Phenomenology ” has become increasingly limited to attention to symptoms, operationally defined (and often defined before extending them into diverse cultural settings), rather than developing more classic studies of the “lifeworld” of persons who are at risk and who develop psychotic illnesses. Anthropologists have long argued for a broader “cultural phenomenology ,” one that asks questions about the “behavioral environment of the self” in local cultures (Hallowell, 1955), about shaping of experience by local cultural worlds, about important differences across cultures in illness experience described as symptoms, and about not merely the “primary deviance ” but also social responses to early symptoms of illness and the development of what sociologists called “secondary deviance ” – illness experience and behavior as shaped over time by social and institutional responses (Scheff, 1984; Yang et al., 2007). Given consensus about methods for defining ultrahigh risk , it would likely be difficult to publish work based in Yung and McGorry’s original methodologies but in non-Western societies in high-citation journals today.

The near exclusive focus on prospective studies in this field also eliminates from attention a body of literature that over many years has suggested that in some cultural settings, many cases of major psychotic illness have extremely rapid onset, with very short prodromal periods (Susser & Wanderling, 1994; Marneros & Pillmann, 2004). Such illnesses are largely excluded methodologically from current research that is based on prospective samples of at-risk individuals – although they may be very prevalent in some settings. In addition, excitement about the potential for “prevention” can lead to a near exclusive focus on who “converts” and who does not, rather than on the older questions about the role of early intervention in reducing the severity of the course of the illness. This older paradigm places more attention on the early stages of phase-specific care – both in the prodromal period and in the initial phases of a psychotic illness – which may be more important in low-resource settings than cohort studies focused on the longer-term goal of prevention.

There is a significant body of anthropological research on the cultural shaping of schizophrenia (see Jenkins & Barrett, 2004; Jenkins, 2015; Luhrmann & Marrow, 2016 as key examples) and a small body of ethnographic research on acute psychoses (Cassaniti, 2016; Good, Marchira, Hasanat, Utami, & Subandi, 2010). However, anthropological research focused on prodromal phases of psychotic illness is generally lacking, and the early psychosis research seldom cites the anthropological studies of psychotic illness .

In what follows, we present not a review of cross-cultural studies of ultrahigh-risk populations and the development of clinical or service models aimed at addressing such populations in low-resource settings. Instead, we present what might be considered a “case study” based on research carried out over more than 20 years in one setting – in the province of Yogyakarta in central Java in Indonesia. This work has linked classical ethnographic studies of how psychotic illness is experienced and treated in this distinctive cultural setting and in-depth anthropological case studies , with clinical research using standard international instruments, survey research carried out with the support of local clinicians, small longitudinal studies, and long-term efforts to develop models of mental health services, linked to the public primary health-care system, aimed at increasing the reach of mental health services beyond that provided in hospital settings.

We first provide a short overview of the work of a team of researchers from Harvard Medical School and Gadjah Mada University in Yogyakarta and the cultural setting in which this work has been conducted. We then present brief retrospective case studies that illustrate aspects of the cultural experience and response to psychotic symptoms and illness, with a focus on the cultural phenomenology of the very earliest experiences associated with these illnesses. And finally we provide an analysis of the prodromal phases of psychotic illness in this particular cultural setting. The goal is to bring attention to elements of prodromal phases of illness that may be important in distinctive cultural settings but overlooked by much of the current research in this field, suggesting the importance of continuing to develop inductive cultural research rather than exclusively translating models, instruments, and questions developed in Australia, North America, and Europe to settings that are culturally quite different and have extremely limited resources.

2 Setting and Overview of a Program of Research

The research described here has been carried out in Yogyakarta, in central Java, Indonesia. Yogyakarta is a province with approximately 3.7 million people living in a highly developed urban center, peri-urban and partially agricultural communities, and widely dispersed rural villages. The population is ethnically Javanese, although urban Yogyakarta has now attracted students and workers from around Indonesia and is thus now more diverse. Approximately 90% of the populations is religiously Islamic, and 10% Christian, with small Hindu and Buddhist communities; many have been described as abangan, indicating that formal religions are mixed with practices related to an active presence of spirits and spiritual forces. Yogyakarta remains an important center of classic Javanese culture and is the site of a still functioning Javanese sultan’s court. The sultan’s palace lies at the cultural center of the city and in classic Javanese cosmology mediates between the spiritually powerful Mount Merapi, an active volcano to the north of the city, and the Queen of the South Sea, a powerful spiritual force who inhabits the coastal waters to the south.

The city, its Sultan, and its population also have an important place in Indonesian nationalist history , having been active in the independence struggle against the colonial Dutch. The city was the site of Sukarno’s first national assembly, and in the late 1990s, the site of massive demonstrations that were part of the reformasi movement that led to the downfall of the autocratic regime of President Suharto. Yogyakarta is a bustling, modern city, a city of universities and students, politically and intellectually progressive, an active center of both modernist and conservative Islamic thought and political organization, and a center of traditional Javanese arts and culture. Over the past 20 years, the city has grown rapidly, become a center of tourism as well as enterprise, has seen rapid development and increased congestion, and has begun to lose its distinctive Javanese culture .

While a view from the universities and tourist centers gives one a sense of a highly cosmopolitan, multiethnic, Indonesian-speaking population, when providing services or conducting research in psychiatric clinics or hospitals, primary care centers, and community settings, one is quickly reminded that Yogyakarta remains deeply Javanese. Although the educational system and a saturation of diverse media make Indonesian a dominant language, a great majority of the population still grow up speaking Javanese and participating in Javanese rituals – those associated with birth, death, and healing, as well as basic community slametan (celebrations that include food exchanges, aimed at improving slamet or well-being) in villages – along with Islamic or Christian faith and practices (Geertz, 1960). Most persons participate in a mixture of old Javanese forms of classic Hindu-Buddhist spirituality and spiritual practices, a world of locally distinctive ghosts, spirits, and forms of black magic, and quite diverse forms of Islam and Christianity. An important goal of our work has been to investigate how these cultural forms influence the experience, interpretation, and social response to psychotic symptoms and illnesses (see, e.g., Good & Subandi, 2004; Good, Subandi, & Good, 2007; Good et al., 2010; Subandi, 2011, 2015; Marchira, Supriyanto, Subandi, & Good, 2016; Marchira, Supriyanto, Subandi, Good, & Good, 2017).

Yogyakarta has 30 psychiatrists currently practicing within the province, a public mental hospital of 170 beds, a private psychiatric hospital with 50 beds, a teaching hospital inpatient unit with 28 beds, and 121 public primary health-care centers. Psychiatric practice has evolved from Dutch colonial psychiatry and is today similar to globalized psychiatric practice in settings of relatively low mental health resources, relying on hospital-based services and a full range of antipsychotic medications. (Psychiatrists routinely use typical antipsychotics, such as haloperidol (1.5–5 mg), or atypical antipsychotics, such as risperidone (1, 2, or 3 mg), quetiapine (100–300 mg), olanzapine (5–10 mg), aripiprazole (5–10 mg), and clozapine (25–100 mg).) Families are both legally and practically responsible for the care of persons with severe mental illness. Care-seeking, guided largely by families, includes resort to a wide variety of traditional Javanese healers, religious specialists, as well as medical professionals. Lack of access to community mental health services means that many persons do not receive continuous or integrated care, even after an initial diagnosis and treatment with medications.

Access to psychiatric care varies enormously around Indonesia. While there are a national system of public primary health-care clinics (puskesmas) and a recent implementation of national health insurance, mental health care has traditionally received low priority in the public health system. Yogyakarta has by Indonesian standards reasonable access to psychiatric care. With a population of 265 million people, Indonesia has only 1125 psychiatrists (0.42/100,000 population), one of the lowest rates in Southeast Asia. Yogyakarta , with 30 psychiatrists for 3.7 million (0.81/100,000) and reasonable hospital services, has above average levels of mental health resources. It is worth remembering that Australia and the United States have approximately 13 psychiatrists per 100,000 population. However, Indonesian psychiatric services remain largely hospital-based services. Thus, initial care-seeking is often triggered by an acute psychotic episode or acts of violence, leading to hospitalization, not by less acute symptoms associated with the earliest phases of psychotic illness, and follow-up care is often extremely limited.

It is in this context that our group has been conducting research for more than 20 years. Our work has included intensive ethnographic research, focused on first-episode psychosis and the families and healers that care for them, a preliminary survey of all first-episode cases entering treatment in Yogyakarta over a period of 6 months in 2000, and a multinational set of intensive, retrospective case studies of first-episode psychosis – using both in-depth interviews with patients and families and standard rating scales – conducted between 2003 and 2005. (Clinical rating scales used in our research include the IRAOS (Interview for the Retrospective Assessment of the Onset of Schizophrenia), PANSS (Positive and Negative Symptoms Scale), BPRS (Brief Psychiatric Rating Scale), GAF (Global Assessment of Function) scale, DAS (Disability Adjustment Scale), and other related instruments, translated into Indonesian and adapted for local use.) After a period of working primarily in post-tsunami, post-conflict Aceh (2004–2010), our team began focusing more intensively on developing evidence-based models for strengthening public mental health services in Yogyakarta. The case studies and analyses we provide here, focusing on the very earliest phases of illness, are drawn from this body of work.

3 Case Studies of the Early Phases of Psychotic Illness in Yogyakarta

The following cases are meant to illustrate aspects of the very early experiences of psychotic illness in Javanese culture . All cases are based on retrospective studies of persons with psychotic illness; Attenuated Psychosis Syndrome (APS) is not recognized in the current Indonesian psychiatric diagnostic manual, which is based on the ICD-10. We begin with cases that had very acute onset, to provide examples of patterns of onset that include extremely limited prodromal experience, then go on to cases where we have reasonably good retrospective data about the earliest experiences of illness, as well as their evolution over time.

3.1 Case 1 Mbak Wi: Sudden Onset, Continuous Psychotic Symptoms, and Modest Impairment

Wi was a 13-year-old school girl, a middle school student , daughter of two school teachers in a village just outside of Yogyakarta, when one day in 2001, she experienced a sudden onset psychosis. There was no prior evidence of prodromal symptoms, decline in her school performance, or major stressor. That day, a Javanese spirit – Butoijo, a large green giant, a type of spirit widely known in local culture – appeared to her while she was in school. When Wi came home she found her bedroom filled with terrifying spirits, including a man with orange clothes and a frightening face. She saw pocong, shrouded figures whose wrapping remained “tied” at the head, preventing persons’ spirits from leaving the dead, images that now appear commonly in Indonesian horror films. She saw a man who had killed himself hanging in her room and a big green snake threatening to attack her. She felt someone wanted to rape her and that others wanted to kill her. Her father appeared to be her mother and her mother her father. Wi was taken almost immediately to the university hospital outpatient clinic but returned home and soon became violent. Two days later she was taken to a private psychiatric hospital, treated for nine days (hospital records indicate she was given Artane 2 mg, Serenace 1.5 mg, and clozapine 25 mg) and returned home much better. During this time, her family also consulted several traditional healers on her behalf.

Within a few weeks, Mbak Wi returned to school. Wi’s father, a Javanese healer as well as schoolmaster, felt that some black magic from one of his patients must have been deflected from him onto his daughter. Her mother continued to contend that an extended family member who held a grudge over a land deal had sent black magic and attacked her. Wi, however, told the psychiatrist on our team simply, “I have a mental illness!” For several months after our initial interview, Wi insisted to us that she experienced no more spirits. However, she finally confessed that she continuously saw two spirits, the man in orange and woman in green, speaking with each other. Despite sometimes being distracted, she was able to continue school, where the other children knew she could see these spirits and would ask what they were saying. She had friends, passed her classes, and showed relatively little impairment. She has continued to take medications since she became ill, at her mother’s insistence, increasing dosages if she is under stress and the spirits become more hostile to her. Over time her performance in school, however, has declined. She failed the high school graduation examination, which prevented her from entering nursing school, as she had hoped. At our last visit, she had enrolled in a school to train teachers.

3.2 Case 2 Mbak Dewi: “Prodromal” or Attenuated Psychotic Symptoms of Sudden Onset

A resident in psychiatry told our team he had treated as an inpatient for a few days a young woman suffering what he called “prodromal” symptoms , which did not rise to level of being fully psychotic. (Because APS is not a labeled diagnosis, the resident recorded an initial “observation” as a prodromal illness, with a differential diagnosis of a depression with or without psychosis.) We visited the patient in a village a half hour drive outside of Yogyakarta. Dewi was 14 years old and had just completed Class 7 of middle school, where she has been a good student. We met the father and mother, both workers in a small food industry in the city, in a simple but clean village home, with Dewi joining when she came home from school. Approximately 6 weeks earlier, a loud argument erupted in this house when Dewi’s father’s brother-in-law came to visit to discuss a dispute about money Dewi’s father had lent to his stepmother before she died. His sister and brother-in-law contended it was a gift, while the father contended it was a loan and that the affairs of the dead should be resolved. The brother-in-law, known as a tough guy, grew angry and threatened Dewi’s father, implying he might kill him. Dewi was watching television in the same room and listened to the argument. She was frightened, left crying, and went to her mother to be calmed. The next day Dewi experienced marked changes in behavior. She became silent, unable to concentrate, said other people were watching her, cried, was fearful, and insisted on holding onto her parents’ hands. This behavior lasted 2 weeks, until she was taken to the primary health-care center, where they were told that she only needed family support, perhaps a sleeping aid (a benzodiazepine is often given in small amounts in the primary care centers for such purposes). The same day Dewi’s father took her to an Islamic leader/healer, who said there was no possession, advised her to drink grape juice, but to go to the hospital if symptoms persisted. The next day Dewi became more acute – scratching the floor, hitting her head, and pulling on the bed sheets. The father took her to the district hospital, where she was referred directly to the University hospital where child services were available. At intake, she said she heard sounds or voices but later denied this. She was treated for 10 days and then returned home. At first she had refused to go to school, but she had just begun to go to school when we visited her. She still seemed quiet but denied any clear symptoms.

3.3 Case 3 Pak Bambang: Slow Onset, Prodromal Experience of Schizophrenia, and Long-Term Psychosis

One member of our team (SN) met Bambang in an “Assessment Camp ” run by the Ministry of Social Welfare to assess and provide rehabilitation for persons living on the street (Nanwani, 2018). Bambang, a single man in his 50s, was among the group in this camp who were considered psychotic and had been living on the streets for 2 months. He was treated with antipsychotic medications provided by psychiatrists from the provincial psychiatric hospital, and gradually his story – and the location of his family – emerged. Bambang was raised by an extremely poor family who lived in an emerging slum area of Yogyakarta. He remembers growing up hungry and embarrassed to go to school because his parents could not afford new shoes or school uniforms. His mother tells the story that he was “normal” through primary school but that he began doing poorly in grade 7, began skipping classes in grade 8, and began having conflicts with persons in the neighborhood. She remembers one incident in which Bambang accused the head of the village of having committed adultery and stolen money from the government. The conflict became so intense the police were called to mediate. From that time forward, he had increasing problems with neighbors, began to become violent and destructive, and was finally bound and taken to the mental hospital by neighbors.

Bambang tells the story more intimately. Already in primary school, he noticed he had less energy than his classmates. He was good at soccer but lost energy and interest to play. He was shamed by not having good clothes, and about the work his father did (as a becak or pedicab driver), and began having “strong feelings” – not yet voices, he says – that his classmates were making fun of him behind his back. He began to have “sinking feelings” and to be withdrawn, and he lost his will for school. It was at this time he began hearing sounds. “First there were loud sounds, only in the night, sounds of water falling… then slowly among the loud water fall sound I would hear whispers of a man telling me that everyone hates me. I first thought the voice was my ‘heart’ speaking, but then it became louder. If I tried to ignore it (the voice), it would shout very loud.” He began to feel that if he were to survive, he had to find a source of “energy” or “power,” and he felt the mountains calling him to go to find power. This was when he began going on long “excursions” into the mountains, walking and walking. As time went on, a specific bad voice appeared, became louder and more accusatory, until it was so loud that he could no longer hear what people were saying. It was at this time that the incident his mother related occurred, and the neighbors tied him and took him to the public psychiatric hospital. The voice has continued through his life, telling him that he is the cause of his family’s problems, that he is only a burden, that his mother hates him, and that he should leave because he only causes everyone trouble. Only when he takes medicines, which is irregularly, and especially if he is away from home, does this accusatory voice become quieter or disappear.

3.4 Case 4 Mbak Enny: Gradual Onset, Acute Episode, and Continuing Illness

Enny was 20 years old when our team interviewed her in 2005. She graduated from high school in 2003 and went to Jakarta to stay with her brother while she looked for work but returned after 1 week due to the death of her grandmother. Not long after returning home, she began having psychotic symptoms. She felt terrified, heard mocking voices, and could not sleep. She identified one voice as that of a friend working in Malaysia. She also sometimes heard a man and woman calling out a dead person’s name. As the illness developed, she felt that people knew what she was thinking. She had black Satans in her dreams and began to hear more threatening voices. Sometimes her mind felt blank, at other times her thoughts twisted, and her mother observed her laughing at the voices she heard. Enny was taken to a Kyai, a Muslim healer, who treated her with prayers and water and powder; he prayed over and advised her not to “daydream.” Another kyai taught her Qur’anic verses to recite. However, after short times of feeling better, she relapsed, became confused, and was taken to the hospital. She continued to receive both religious and medical treatments in the years after hospitalization.

In retrospect, Enny’s mother feels the illness may have begun after middle school. Enny was always quiet, but became more quiet during high school. By her final year, she began to stay in her bedroom and sleep after school until evening, complaining of being exhausted. She talked about “daydreaming” – about having pikiran kosong or “empty thoughts” – which is considered in Javanese psychology to be dangerous. She often daydreamed, she said, and sometimes became disoriented. During the week she was in Jakarta with her brother, she felt confused because the crowds, she said, were so different than her home village. Her overt symptoms began after returning from Jakarta.

3.5 Case 5 Pranom: Prodrome of Uncertain Duration, Acute Illness, and Initial Recovery

Pranom was a 19-year-old student in the second semester of a private university when our team met him, 3 months after he had been hospitalized for a psychotic episode. He was the son of two teachers and lived in a simple house near Yogyakarta with his older sister. Apparently he was a bright but quiet child and an excellent student in primary and secondary school. He did poorly in high school, he said, because he had not gotten into the top classes, did not like the social science and humanities classes, and often spent his time at the mosque instead of going to classes. He joined an Islamic party, was quite idealistic, and began writing a novel. Despite his poor high school performance, he was accepted into a good university, after spending several months working. He studied international management and continued to work on writing his novel. His illness began, he and his family believe, when the file with his novel disappeared from his computer, just as he was nearing a deadline and a meeting with a publisher. This led to intense panic and anxiety, during which he began to have strange experiences. He felt confused, had difficulties sleeping and concentrating; he began occasionally hearing someone call his name, began to wander around aimlessly, and felt that his house was changing and becoming strange.

Over a 6 week period, Pranom’s symptoms became more severe. He began to experience something following him, first someone with a sword, then something he thought was a large red devil. He felt a naga – a kind of giant magical serpent from Javanese/Hindu mythology – would enter his back at night, making his back feel hot and leading him to feel angry. He began to hear the voice of a devil prohibiting him from doing his regular prayers. His father noticed that he became withdrawn and stayed in his room. About 6 weeks after the computer incident, he had an outbreak of violence, leading his family to take him to a primary care doctor, who referred him to a private psychiatric hospital, where he stayed for 10 days. Because symptoms continued, the family consulted an Islamic healer, who said his problems were caused by black magic sent by a former girlfriend from high school. His father also felt that his illness might have been caused by the father’s having kept in the house a keris, a special dagger that is a power object in Javanese culture and religion, which had not been properly kept and cleaned. After the Islamic healer cleaned the keris, Pranom’s experience of the naga in his back finally disappeared. At approximately 3 months after the onset of the acute illness, our team found Pranom to have recovered without remaining symptoms, and though still anxious, the family was hopeful that the illness was fully resolved.

4 Analytic Observations

These ethnographic/clinical cases are meant to illustrate the cultural phenomenology of the forms of onset of psychotic illness in Yogyakarta. Many of the cases described here would, in important ways, be quite familiar to psychiatrists anywhere. The core symptoms of both prodrome and psychosis described in clinical terms – behavioral changes, withdrawal, attenuated psychotic symptoms, followed by more overt hallucinations, delusions, ideas of reference, paranoid ideation, negative symptoms, and neurocognitive deficits – are present in nearly all these cases. While useful in terms of clinical description, these terms hide what is distinctive about psychotic experience in Java clinically, culturally, and in terms of social experience and care-seeking. Indeed, when described only using technical clinical terms, the most critical cultural features of prodrome and psychotic illness that vary across societies and across individuals within societies may disappear almost entirely. How then might we describe these cases in ways that highlight important clinical and cultural features that may be significant not only for the study of schizophrenia across cultures but for the experiences of prodromal or APS symptoms and the social responses to these? What might we note about these cases that seems largely unremarkable to Indonesian psychiatrists precisely because they are so typical of what is seen in clinical settings in Java?

First, as the symptoms emerge into experience and are responded to by those in the social environment they enter into a Javanese lifeworld. This is a world of spiritual forces, of practices aimed at enhancing the inner power (tenaga dalam, kekuatan batin) of individuals in ways that protect them from dangerous or malicious forces, of negotiations between seen and unseen worlds, and of the use of the unseen world with its spirits and energies both for good and for ill toward other persons. This is true of the classical prijaji world linked to Hindu-Buddhist traditions, the abangan world of local spirit practices, and the Islamic (or santri) world which incorporates meditative practices through Sufism and for many includes local spirits from the Islamic cosmology (Geertz, 1960; Anderson 1972; Keeler, 1987; Ferzacca, 2001; Good & Subandi, 2004; Good, 2012; Subandi, 2011, 2015). This is also true of the eclectic world of Christians and other minority religious groups, diverse student political and religious groups, and healing traditions.

Psychotic experience places individuals into direct contact with this unseen, spiritual world. Thus cases of psychotic illness are filled with stories of persons coming into contact with deceased relatives or their ghosts, with well-known types of local spirits or ghostly forms (hantu, butoijo, tuyul, pocong), with mighty spirits such as the Queen of the South Sea (Ratu Kidul) or the spirit of the Sultan of Yogyakarta, and with the forces of black magic sent their way by someone wishing them harm. Some of these spiritual entities are seen and heard directly by persons who are ill; others are suspected as the cause of the illness. Virtually all of these spiritual forces are part of the everyday lifeworld of persons surrounding those who become ill and are taken seriously. Javanese are not considered “crazy” simply because they “believe” that they see a ghost or spirit. Indeed the question is almost never whether the spirits that an individual experiences visually or through voices are real, but why they are bothering this individual. Care-seeking for psychotic illness almost always includes resort to healers to investigate the role of the unseen world in the illness and seek redress, prior to or concurrent with seeking medical care (Marchira et al., 2016, 2017).

Second, in several of the cases reported here, and many seen both clinically and in research in Yogyakarta, the onset of the psychosis was very sudden and dramatic. Many describe virtually no prodrome, virtually no period of slowly increasing symptoms and social dysfunction associated with ultrahigh-risk/APS samples. The narratives of onset in such cases are consistent with cultural understandings of being struck by spirits or forms of magic. This has long made our research team suspicious that the cultural pattern influencing the story of how the illness suddenly began might hide evidence of previous symptoms of illness. This is often difficult to determine in retrospective studies; for example, it is difficult to determine whether Pranom’s explanations (Case 5 above) of why he did poorly in high school rationalize a decline in social and cognitive functioning. Only prospective studies could determine this with more certainty, and as we noted, very rapid onset illnesses are seldom included in prospective studies. However, our intensive interviewing with many individuals and their families, continued over a number of years, have confirmed that in many cases, of which Case 1 (Mbak Wi) is typical, there is virtually no prodrome prior to an acute psychosis, or that a prodromal period may be quite short – a matter of weeks versus months or years.

Our research provides preliminary indications that although the length of prodromal symptoms may have some relationship to the long-term course of the illness, some precede a single episode of psychosis that then fully resolves (though the episode may last long enough to meet both ICD and DSM duration criteria for schizophrenia), may be the first of a series of psychotic episodes that remit and recur (cf. Cassaniti, 2016 for a Thai case study), or may represent the beginning of a more classic chronic psychotic illness (see Good et al. (2010) for a preliminary analysis of the relationship between onset and course). For the purposes of prospective research on ultrahigh-risk populations , the main point here is that cases such as these, which may be extremely common in some settings, are virtually excluded from consideration. Not only the cultural phenomenology of prodromal phases of illness but the length of these – which may range from years to weeks to days – may be important in ways which are not understood. And as a small but persistent body of research suggests, this may vary in important ways across cultures. [See, e.g., Susser and Wanderling (1994); Susser, Varma, Malhotra, and Conover (1995); Susser, Finnerty, and Sohler (1996); Marneros and Pillmann (2004); Marneros, Pillmann, Haring, Balzuweit, and Blöink (2005); Good (2008), Malhotra and Singh (2015); and Rodger and Steel (2016)].

Third, care-seeking is influenced in important ways by cultural understandings of illness, patterns of onset, and availability of both medical and alternative forms of care. If one important goal of high-risk studies is to extend care into the very early phases of illness, this is an area of research that has drawn inadequate attention. The work of our team in Yogyakarta suggests two important findings. First, our research suggests a very direct relation between the speed of onset of the acute phase of illness and duration of both untreated psychosis and untreated illness (Good & Subandi, 2000). Second, our research has consistently found that families often seek care simultaneously from “traditional healers” or the religious and popular sectors of care and from medical services – as is illustrated in the cases described above (Marchira et al., 2016). Indeed, while families in Yogyakarta may seek care from religious or popular healers several times before contacting medical services, they often do so very rapidly during acute phases of illness. As a result, we continue to find that rapidity of onset is far more significant than number of healers consulted in determining duration of untreated psychosis. Given that researchers have hypothesized that both DUP and acuteness of onset may be directly related to long-term course of illness, understanding the relationships among patterns of onset, care-seeking, and DUP should be taken quite seriously. While there is a large literature in this area, relatively little systematic work has been conducted in countries with very low mental health resources, and much of this focuses on how “folk beliefs” or attributions inhibit help-seeking to medical services, rather than on lack of available mental health resources.

Finally, we return to the core issue for this paper – cultural influences on the prodromal phase of illness. Several of the cases described above, typical of those with longer durations of “illness” or prodrome, will seem quite recognizable to those working with high-risk groups in very different social and cultural settings. Patterns of decline in school performance and social relationships, growing anxiety or fearfulness, confusion, withdrawal, attenuated psychotic symptoms (e.g., occasionally hearing someone calling ones name), none of which lead immediately to care-seeking, will not be surprising to researchers or clinicians in this field. However, we should make several observations, based on these cases and our experience in Yogyakarta. First, for each of these cases, the onset began while the individual was living with his or her family. Yogyakarta is a city of university students from around Indonesia, many not living with their families; however, it is important that a very large percent of all first-episode cases we have followed, first treated in the Yogyakarta mental health facilities, live with their families. This has crucial implications for the cultural response to initial symptoms and how decisions are made about seeking care. There is obviously a discrepancy between what families observe and what the individual experiences, as some of the cases make clear. Families often simply interpret what in retrospect may be seen as symptoms as being related to character – that the individual is quiet, overly sensitive, lacking in self-confidence. As the symptoms develop, families often respond with classic Javanese interpretations – that involve such issues as someone doing black magic, a keris not being properly cared for, a placenta being buried in the wrong place, some offense having been committed against a spirit, or the young person having attempted meditation without a proper guru or adequate inner power. These in turn influence social response, and in turn the experience of illness, in ways suggested by classic social response theorists. It should be noted, however, that what constitutes “family” varies enormously – from extended or intact nuclear families to a single elderly person caring for an adolescent to a loose network of siblings who attempt to “contain madness” of the person who becomes ill (Nanwani, 2018).

Some of the symptoms described in these cases have richer cultural meanings than is obvious. Indonesian clinicians say that persons often initially experience whispering rather than voices or feel that God is strongly urging them to follow some path of action before they hear voices saying these things. The interpretation of feeling weak or without power and the urgency to seek places that will return their power are rooted in Javanese framing of the universe and the self as a field of power or energy relations (Good, 2012), and this may be one reason that we find many cases of persons going off on what we called, in Bambang’s case, “excursions.” The concept of “empty thoughts” (pikiran kosong), related to people describing themselves as “daydreaming,” is linked to an idea that having an “empty” mind allows spiritual entities to invade unimpeded (Ferzacca, 2001). And a feeling that someone may be “doing something” to one, while sounding paranoid, is often socially accepted as a very real possibility.

This then links to the interesting observation that as symptoms evolve in this cultural setting, hearing sounds or voices or seeing spiritual entities that others cannot see do not indicate per se that one is sick or crazy. Those with psychotic symptoms or illnesses do not live in a different ontological world than that of family members and others in society. An unseen world is a part of everyday reality in Java, and the fact that some people – healers, specialists known as paranormal, persons who are psychotic, those who cultivate spirituality – have direct access to that unseen world validates cultural realities, rather than invalidating the experiences of those with such access. This does not imply that family members do not interpret the individual as being ill. But the question of whether indeed someone is doing black magic or a spirit is troubling someone and causing illness, and if so why, is what is at stake, rather than the reality of such entities.

The fact that persons with psychotic illness and their families and communities share a common ontological world may prolong care-seeking prior to contact with medical services. An adolescent’s sense that someone may be “doing something” to him or her may not arouse concern about paranoia and trigger medical care-seeking. However, this may also reduce the stigma and “shame” associated with a psychotic episode, particularly in the early phases of illness. Individuals may do things that are embarrassing to them and their families when they become ill – i.e., they may not know “shame” (malu) and understand that what they are doing is shameful is acknowledged as part of recovery (Subandi & Good, 2018). However, as Nancy Waxler (1974) suggested many years ago, the perception of an illness as caused by spirit intrusion or black magic may lead to much higher expectations of cure than assumptions that an illness is a “brain disease” and be far less stigmatizing. This may lead, she suggested, to social responses that are more positive and more likely to support recovery. Indeed, it is our experience that psychotic illness is less stigmatizing in Javanese culture and society than, for example, in East Asian societies, and there are greater expectations for recovery (Subandi, 2015).

The fact that spirits, black magic, and spiritual practices are considered a part of Javanese reality raises questions about what constitutes “insight” in cases such as those we have been discussing – a key issue for those using the SIPS/SOPS or CAARMS to differentiate between prodromal experiences and overt psychosis. Clearly, requiring that an individual accept a medical view of “illness” cannot be a criterion of insight in such settings. We do not imply that insight cannot be operationally defined in such settings, but many of the usual assumptions about what constitutes insight are called into question in settings where the “unseen world,” made available to those who have psychotic symptoms, is a shared ontological world.

5 Conclusion

Studies of ultrahigh-risk , clinical high-risk , or Attenuated Psychosis Syndrome populations have now developed internationally. Such studies are critical for the development of a less parochial understanding of psychotic illness and its emergence, treatment, and course in local social, cultural, and treatment settings. The focus on early identification and intervention and ideas of specialized services for those in the very earliest phases of illness, while raising questions of priorities in very low-resource settings in which a majority of those with psychotic illness may be outside of care, nonetheless have the potential for transforming the organization and provision of mental health services globally.

Work that establishes criteria and uses them for comparative international and cross-cultural studies is critical for the field. On the other hand, such work has the potential to suffer from what Kleinman (1977) once called a “category fallacy” – the definition of criteria for mental illness in one setting (North America, Europe), then simply translating these in extremely diverse cultural setting. The exclusion of acute onset illness from such research is but one example. Cultural psychiatry and psychiatric anthropology have developed increasingly sophisticated studies of psychotic illness, including rich cross-ethnic and cross-cultural studies of schizophrenia, first-episode studies, and research on the emergence of these in extremely diverse cultural settings. To date, these two forms of research, both highly relevant for investigating factors that influence onset and course of psychotic illness and the development of better forms of early intervention, have progressed with very little interaction. One goal of this review has been not only to bring to attention work being done globally with at-risk populations but to suggest the importance of more closely integrating these two quite different bodies of research.

The development of strategies for improving early identification and treatment of psychosis in low-resource settings remains extremely challenging. Efforts have been made to develop model early intervention clinics in Indonesia (Renwick, Irmansyah, Keliat, & Yung, 2017), but the actual implementation of such programs has been extremely difficult. New efforts are underway to move services increasingly into the community in Indonesia, with particular focus on primary health-care services and local staff from the Ministry of Social Welfare. In 2016, the treatment of major mental illness was added to the list of Minimum Standard Medical Services for which local governments and primary health-care centers are responsible. These efforts provide opportunities to improve early recognition of severe mental illness by primary care doctors and nurses, as well as village health care. In addition, psychology faculties in Indonesian universities are making new efforts to develop model school-based mental health programs. Again, these are important settings for the development of strategies for early recognition and identification and explicit recommendations for referral.

Building “local knowledge” about the early phases and treatment of psychotic illnesses into these programs will be critical to their success. This will require genuine understanding of the ways that early phases of illness are experienced in local cultural settings, as well as increased awareness of current medical understandings of those who are at risk for developing a psychotic illness and the most effective medical, social, and psychological interventions. It is for this reason that the research group responsible for the work reported in this paper have consistently attempted to integrate anthropological, psychological, and psychiatric research methods in the effort to develop more effective services.