Cultural explanations of psychotic illness and care-seeking of family caregivers in Java,Indonesia

Abstract

The cultural understanding of illness among caregivers of first-episode psychotic persons is a crucial issue. Not only does it influence caregivers’ care-seeking behavior and length of time until receiving medical treatment (known as the ‘duration of untreated psychosis’ or DUP), but it also predicts the outcome of the illness. This article aims to explore cultural understanding and care-seeking behavior among caregivers of psychotic patients in Java, Indonesia. Data for this article have been taken from two studies conducted by our research group in Yogyakarta, Indonesia. Methods of data collection include surveys, case studies, ethnographic fieldwork, and in-depth interviews. Results of analyses, within and across studies, indicate that caregivers have employed diverse cultural explanatory models in order to understand psychotic illness. Local cultural beliefs, including possession and forms of black magic, were among the most common initial concepts held by family members in relation to psychosis. This echoes broader cultural beliefs in Java. However, it was not uncommon for caregivers to also understand illness in psychological terms (such as frustration, disappointment, and stress) and attached medical explanations. Caregivers’ understanding of illness also changed over time following the changing course of the illness. Both models of illness and the rapidity of care-seeking are also related to the acuteness of onset. This article concludes that it is important for mental health providers, as well as those designing systems of care, to understand the diversity and changing nature of caregivers’ cultural understanding of psychotic illness.

Keywords

care seeking explanatory model Java-Indonesia mental illness

Introduction

Serious mental illness is an enormous challenge to family members, and often leads to intensive care-seeking. Although we now know that the relationship between efforts to understand the cause of illness and care-seeking is very complex, these processes are interrelated and are deeply embedded in local cultures and access to services. Attributions and explanatory models have been studied in parallel by psychologists and medical anthropologists, with interesting similarities and differences, both with the goal of understanding the links between efforts to understand causation of illness and care-seeking behaviors. This article examines illness attributions and explanatory models and their relation to care-seeking for psychotic illness in the context of Javanese culture in Yogyakarta, Indonesia.

Fritz Heider launched the field of Attribution Theory within social psychology in 1958 with his seminal book The Psychology of Interpersonal Relations. His work has had long influence, and was elaborated by Harold Kelley and Bernard Weiner in particular. Attribution Theory attempts to explain how individuals’ causal attributions contribute to behavior (Weiner, 1996). It has been extensively used in social psychology, and extended to areas such as health psychology and mental health (Kawanishi, 2004; Lim et al., 2018; Robinson, 1996).

The concept explanatory models (or EMs) was developed in a set of seminal writings by Arthur Kleinman in the late 1970s as a part of an effort to build theory within medical anthropology (Kleinman, 1980; Kleinman et al., 1978). Kleinman suggested the importance of explanatory models as a tool for the comparative study of medical systems, as well as for clinicians. From the beginning, Kleinman’s analyses could be distinguished from the more individualistic understandings of attributions in psychology, particularly those elaborated in the classic Health Belief Models developed for public health. Kleinman’s interests were in the complex, civilizational understanding of health systems, which frame all explanatory systems, and his analysis of Taiwan’s popular, folk, and professional medical domains in the context of Chinese culture.

Although the concept of explanatory models was developed in the context of mental illness, it is now widely used for both mental and physical illness, and no longer focuses narrowly on the EMs of patients but also of families (Saravanan et al., 2007). As with Kleinman’s original formulation, researchers have studied the explanatory models of persons with illness and their family caregivers, as well as those of care providers, including medical and community health providers (Joel et al., 2003) and indigenous or religious healers (Teuton et al., 2007). DSM 5 adopted this concept as a tool to be used by clinicians as part of the Cultural Formulation Interview (American Psychiatric Association, 2013).

Attribution theory and explanatory model research have common ground; both have been used to study not only interpretations of causes of psychotic illness, but also care-seeking behavior, and both have been used across cultures. Within the literature on attributions, Shebabaw et al. (2014) conducted research on attributions and care-seeking in Ethiopia. Similarly, Burns et al. (2011) studied spiritual attributions of cause and previous consultation with traditional healers in South Africa, finding these may delay entry to psychiatric care. Within the literature on explanatory models, McCabe and Priebe (2004) found that family caregivers’ treatment preferences were influenced by their explanatory frames. Khoury et al. (2012) found that traditional perspectives related to voodoo in Haiti did not prevent individuals and families from pursuing psychiatric treatment, suggesting the multiplicity of EMs and care-seeking strategies of individuals and families. Mbewe et al. (2006) found that Zambian patients who consulted a traditional healer had a longer “duration of untreated psychosis” (DUP) compared to those who did not. (DUP is calculated as the time from the first emergence of psychotic symptoms to the time an individual enters sustained psychiatric treatment.) Maraj et al. (2017) have suggested that understanding EMs of psychotic illness could improve the cultural competence of Canadian mental health providers working with patients of African and Caribbean origins.

Attribution theories, particularly the Health Belief Model, as well as narrow focus on EMs as cognitive models, have long been criticized within medical anthropology (e.g., Good, 1994). Caregivers’ understandings of illness are influenced by the “cultural phenomenology” of the illness (Csordas, 2015), by the nature and rapidity of onset of acute illness (Good, Marchira, Subandi, Mediola et al., 2019; Good, Marchira, Subandi, Nanwani et al., 2019), and by the nature of the individual’s behavior. And care-seeking is influenced by who makes up the “therapy management group” (Janzen, 1987), which may include not only family members but community members or police, by availability, quality, and cost of medical services, as well as by cultural interpretations. “Explanations” often have a “subjunctive” quality (Good & Good, 1994), with multiple interpretations being held as families seek an effective cure, and are often narrative in character (Mattingly, 1998). However, efforts to understand and explain difficult illnesses, particularly psychoses, are deeply cultural and remain a critical domain of ethnographic research.

In what follows, we outline the core cultural frames for understanding mental illness in Yogyakarta, a center of Javanese culture in Indonesia, then discuss how these are drawn on as caregivers, particularly family members, struggle to make sense of psychotic illness and find effective treatment. We draw from projects conducted during more than 20 years of research.

Javanese culture in Yogyakarta

As a city of multiple identities (Ferzacca, 2001, p. 29), Yogyakarta is the site of constant cultural contestation, particularly with respect to traditional, modern, and religious values. It is known as kota budaya (a city of culture), kota pariwisata (a city of visitors and tourism), and kota pelajar (a student city).

In keeping with its identity as a kota budaya, Yogyakarta is one of the most important centers of “authentic” Javanese culture. Several important historical sites of ancient Hindu and Buddhist temples surround Yogyakarta. The kraton, in the inner city, was represented in classic Javanese texts and rituals as the imagined center of the universe, situated between Mt. Merapi, the powerful volcano to the north, and the Queen of the South Sea to the south. For centuries, it has been widely understood as such by the prijaji elite, and continues to be by ordinary people who live in the poorer residential neighborhoods (kampung) of Yogyakarta today.

As a kota pariwisata, Yogyakarta has become one of the most-visited local and international tourist destination in Indonesia after Bali. Aside from the historical sites, Yogyakarta is also famous as a center of traditional arts (batik, shadow puppets) and as a thriving, contemporary setting for artists, theatre, and musical forms. Meanwhile as a kota pelajar, Yogyakarta attracts thousands of students from many different parts of Indonesia and foreign countries. At present there are four state and 16 private universities in Yogyakarta, and more than 50 other academies. These new identities, kota pariwisata and kota pelajar, have made Yogyakarta a complex site of globalized discourses in conversation with Javanese and Islamic cultural forms.

The Javanese Muslim spectrum is also diverse. Clifford Geertz (1960), in his influential book The Religion of Java, divided Javanese Muslims into three variants: santri, abangan, and priyayi. The word santri originally meant a student of an Islamic boarding school called a pesantren and only later came to be strongly identified with orthodox Muslims (Dean, 1999). All santri follow Islamic Shariah law that includes professing the faith, following social norms, and performing obligatory daily prayers. By contrast, the term abangan refers to people who are, on the one hand, nominally Muslim, limiting themselves to professing the faith and performing rituals rather loosely, and also to those who embed Islam and its practices in local cultural traditions and rituals. Finally, the term priyayi continues to refer to the traditional aristocrats, whose culture retains strong Hindu and classic Javanese influences.

Dean (1999) states that over the past two decades, Javanese society has moved toward a deeper understanding and commitment to Islam of the santri style. Several ethnographers have observed a significant increase in the religious atmosphere in Yogyakarta (Howell et al., 2001). This is evidenced by the flourishing of religious gatherings in mosques and the increasing availability of Islamic teachings through popular books, radio, and television. Growing numbers of people now make the pilgrimage to Mecca (hajj). Whereas in the past only santri, particularly older ones, went on the hajj, now a wider variety of people, including younger people, undertake the pilgrimage. More people learn and practice Sufism (Howell et al., 2001) and more Muslim women wear the jilbab (veil). Pioneered by female university students, wearing the veil has been embraced by many women of all social levels, including the elite and film stars (Brenner, 1996).

Many of the characteristics of what Geertz described as “the religion of Java” in the 1960s still exist in present-day Yogyakarta. However, the santri groups are divided between quite diverse and often highly contested sectarian groups and followers of particular schools, leaders, and forms of practice. Most agree that there is a striking increase in the intensity of the religious atmosphere in Yogyakarta, ranging from everyday veiling and religious practices to the emergence of militant Muslim groups. The situation has thus changed considerably since Geertz carried out his research.

The Indonesian/Javanese mental health care system

The formal mental health system in Indonesia was established in 1882, when the Dutch colonial government promulgated a Mental Health Act and built a mental hospital in Bogor, West Java (Pols, 2006; Pols & Wibisono, 2017). This is the mental hospital that was visited by Emile Kraepelin in the early 20th century. A further 21 state mental hospitals were set up by the colonial administration between the end of the 19th and the first half of the 20th centuries. The first four of these hospitals were built primarily to treat colonial patients, and only secondarily for Indonesians who were causing trouble in their communities. While the mental health system was directed by an adherent of moral reform, it remained completely hospital based. Only after a new health care policy was introduced, through the Mental Health Law of 1966, did the mental health care system begin to focus on the community. Over the years, services have been extended outside the confines of the hospitals and broadened to include not only treatment but also the prevention and promotion of mental health. At present there are 34 state and 16 private mental hospitals in Indonesia with a combined capacity of approximately 10,000 beds.

In addition to the formal mental health resources, Javanese often seek help from traditional, religious, and alternative specialists. Dukun is a general term for Javanese healers. They can be differentiated according to their specialty, such as dukun pijat (massager), dukun beranak (traditional midwife), dukun sunat (one who performs circumcision), dukun santet (sorcerer), dukun manten (one who performs marital rites), or dukun prewangan (spirit medium). The term dukun often carries negative connotations (Ferzacca, 2001; Geertz, 1960), owing in part to its association with dukun santet (sorcery, witchcraft) and “the potential for trickery, scandal, and fraud, if not outright injury to those who use their service” (Ferzacca, 2001, p. 174). Participants in our research are more likely to use more respectful terms, such as paranormal, wong tuwo (old person), or wong pinter (knowledgeable person), for Javanese healers. Some also seek help from religious healers, such as Kyai (the leader of a pesantren). There are also Catholic charismatic forms of healing and healers in Yogyakarta (Browne, 1999).

Methods

This article aims to analyze the complexity of cultural understandings of illness among caregivers of psychotic patients in this Javanese cultural context. Data are drawn from studies conducted by our team between 2003 and 2018. These include surveys as well as ethnographic and case studies.

In 2018, our team conducted a survey of randomly selected patients (n = 259, 129 M, 130 F) from among patients registered with a diagnosis of major mental illness in five public primary health care centers (Puskesmas) in Yogyakarta, along with a family caregiver. This survey is part of a larger study aimed at strengthening mental health services in the public primary health care system in Yogyakarta. We selected five Puskesmas, one in each of the five districts of Yogyakarta Province. A research team consisting of one resident of psychiatry of the Faculty of Medicine and one student of magister of professional psychology of the Faculty of Psychology, Gadjah Mada University visited each participant and their family members at their home. Data were collected concerning demographics and history of illness, current mental status and social functioning, history and current use of mental health services, and understandings of illness and the history of care-seeking. Here we examine data relating to caregivers’ explanation of illness, as well as care-seeking behaviors. These data provide a general cultural explanation of psychotic illness in a large sample of registered patients, many of whom have been in treatment for years (i.e., this is not a first-episode study). We briefly compare these data with first-episode studies we have conducted.

Second, we analyze ethnographic and case study data, with a focus on a study conducted by the first author of this article, following nine first-episode psychotic patients in their natural setting for one year, with a follow-up study in the second year (details of the method can be found in Subandi, 2015; Subandi & Good, 2018). As part of the first author’s PhD dissertation (Subandi, 2006), data were collected through unstructured interviews and naturalistic observations, in which the researcher participated in the daily lives of the participants, including, for example, attending a wedding ceremony and a funeral of one family caregiver. During the course of fieldwork, the researchers met with each participant 10 times, with the average length of each formal interview being between one and two hours. The Javanese language was mostly used during the interviews, and sometimes a mixture of Javanese and Indonesian.

All studies conducted were passed by the Harvard Institutional Review Board, or the Ethical Committee of the Faculty of Medicine at Gadjah Mada University, or both. All of the participants gave consent before we conducted the interviews.

Results

Survey data

Table 1, based on our 2018 study of patients in primary health care, shows the frequency of caregivers’ explanations/understandings of illness as derived from the assessment survey. Caregivers responded to a list of potential explanations, and were allowed more than one response.

Table 1.

Frequency of caregiver explanation of the cause of illness (N = 259).

Explanation	n	%
Stress, pressure (financial, studying, etc.)	123	47.5
Broken love relationship	37	14.3
Trauma, shock	34	13.1
Don’t know, no idea	33	12.7
Genetic	30	11.6
Family conflict, social conflict	30	11.6
Someone sent illness (black magic)	25	9.7
Possessed by spirits	24	9.3
Lost someone (someone died, etc.)	22	8.5
Other	16	6.2
Other spirit-related causes	15	5.8
Natural explanation (brain disorder, chemical change, nervous system, body)	12	4.6
Practice Javanese mysticism, not strong enough	9	3.5
Some problem in practice of religion	6	2.3
Sent by God (as test, or other reason)	3	1.2

Table 1 shows that participants ascribed to multiple and diverse explanations of cause, with 259 caregivers giving 435 explanations (mean = 1.6). Answers ranged from psycho-social explanations (stress, broken love relationship, conflict, lost someone) and physical explanations (genetic, brain-related disorder), to religious explanations (problems in the practice of religion, sent by God) and traditional abangan cultural explanations (possession, black magic). Psychological explanations were very dominant, with stress, pressure, and broken love relationship ranking in the top three. This was followed by more traditional explanations. Interestingly, only a few of the family members attributed the illness to a religious explanation. It is important to note that this was not a first-episode sample; patients had been enrolled in mental health services often for a number of years, influencing their understanding of the nature of the illness.

In accordance with the data on cultural explanations, Table 2 shows that participants sought help from a psychiatrist most often (61%), followed by a paranormal (30%), a general doctor (19%), and a religious healer (17%). Again, the 259 caregivers indicated 403 types of healers with whom they were in contact, or 1.5 types of healer per patient; 56% indicated they used a non-medical resource.

Table 2.

Care-seeking (N = 259)

Medical professional	n	%
Psychiatrist	159	61.4
General doctor	49	18.9
Nurse, midwife	9	3.5
Psychologist, counselor	8	3.1
Neurologist, other specialist	8	3.1
Pharmacist	2	0.8
Non-medical
Paranormal	77	29.7
Religious specialist (kyai, ostad)	43	16.6
Traditional healer (jamu)	9	3.5

These findings may be compared with our findings from first-episode research. In a study carried out in 2000, in which we attempted to gather basic data from all first-episode cases in Yogyakarta over a six-month period (see Good, Marchira, Subandi, Mediola et al., 2019), 40% indicated they had used non-medical healers prior to contact with a psychiatrist. This number varied widely depending on whether the family residence was urban (27%), semi-urban (41%), or rural (55%); it also varied by education level of caregiver. In a more recent first-episode study (that included a psychoeducation intervention), Marchira et al. (2019) reported that 60% of caregivers expressed medical explanatory models (after entering treatment), and 64% indicated they had sought care from a non-medical healer prior to contact with a psychiatrist.

Ethnographic and case study data

Two central themes emerged in the data analysis of the ethnographic and case studies: the diversity of explanations, and the changes in understanding and explaining the cause of illness over time. Here we focus on data from the nine first-episode case studies (Subandi, 2015; Subandi & Good, 2018).

Diversity of explanations

Explanations for the onset of psychotic illness in Yogyakarta can be classified into sub-types: supernatural, psychological, physiological explanations. All participants’ names in this article are pseudonyms.

Explanations from the Javanese supernatural world

“Supernatural explanations” were the most common explanation used by family caregivers in this ethnographic study. There were many different types of spiritual explanations, ranging from kemasukan or jin dimasukkan (spirits, or jinns, entering the person) and excessive spiritual practice (e.g., meditation), to guna-guna (sorcery or witchcraft). Among these spiritual explanations, “possession” was the most common explanation used to explain the cause of psychotic illness. For example, Laras’ father explained that a spirit that lived in a keris (dagger) belonging to her grandfather possessed his daughter, because no one took proper care of the keris after her grandfather died. The spirit was angry and possessed Laras’ body. This explanation from a traditional healer (paranormal) was adopted by Laras’ family. To cure the illness, the paranormal performed a ritual to take care of the spirit inside the keris. In this case, the Javanese used the term kemasukan (entered) because they felt the spirit had entered the daughter.

Included among the supernatural explanations was guna-guna (black magic, sorcery, intentional harm). In this situation it is believed that someone uses magical power to harm someone. This explanation was used by the family of one of the participants we call Yati. Yati’s family felt that a person whose marriage proposal was rejected by her had arranged guna-guna to make her become crazy. This explanation was also used by Laras’ father. At first, he believed that his daughter’s illness was caused by a spirit that lived in the keris and possessed her. Later, he believed that the illness was caused by guna-guna that was inflicted on him by his neighbor. Since he himself had enough power to ward off the guna-guna, its effects were transferred to his daughter.

Thus, many of the family caregivers in this study used one or other of the ideas related to a supernatural explanation. This was usually utilized as the initial way of making sense of the illness. Over time, as the illness evolved, the families considered other explanations, such as psychological stressors, as having triggered the illness. Only a few of the families who held an initial idea of a possession-related explanation remained unchanged.

Explanations from Javanese psychology: Kagol, tertekan, setres and kaget

In Java, the term kagol (frustration or disappointment) is used for children who do not get what they want. This is considered normal, because children do not have the ability to cope with their frustration. Among adolescents this may lead to mental illness. In the present study, the mother of one participant, Siti, explained that her daughter’s illness was caused by kagol because she actually wanted to continue her studies at university but her mother pressed her to get married. Laras’ mother told the researchers that in order to prevent a relapse of her daughter’s illness, she should not let her daughter feel kagol. Therefore, her husband had to sell their cow because Laras wanted to buy a motorbike. They were worried that Laras would relapse if she did not get what she wanted.

Participants also used an Indonesian term tertekan (under pressure) as another psychological explanation for understanding the cause of psychotic illness. The mother of a participant we call Susi, for instance, thought that her daughter was ill because she felt tertekan because she actually wanted to go to a vocational school which had a more practical orientation, but her father forced her to go to a general school where she had to work very hard to adjust to higher academic standards. Susi thus felt that she was under pressure to perform academically above her capacity. In another case, the mother of a participant we call Tuti explained that Tuti might have felt under pressure because she actually did not agree with her younger brother getting married before her, but was afraid to say this to her parents.

Another psychological explanation adopted by family caregivers was the experience of kaget (startle), caused by a physical or psychological incident. An example of a startling experience could be found in Yati’s case. She related that one day she was chatting with her friends and neighbors under an avocado tree when suddenly she was startled because one small avocado fell and hit her on the head. People around her laughed at her. Later that evening, Yati began to experience hallucinations. In the case involving Susi, an unsettling experience occurred when she attended the first day of high school. Suddenly, she realized that she was wearing a different uniform from all the other students. She was startled and felt ashamed because all the other students and teachers were laughing at her. When she got home her mother noticed a change in her behavior and several days later she displayed symptoms of a psychotic illness.

In Tuti’s family, the Javanese psychological concept of peacefulness (tentrem) and its absence emerged. A family caregiver described Tuti as not having quietness, calmness, and peace of mind. Javanese psychology strongly emphasizes the idea of living with peacefulness and refinement (alus) in both inner (batin) and outer (lair) spheres of life (Geertz, 1983). Family problems have the capacity to cause psychological disturbance. The peaceful feeling that Tuti usually found in her family of origin changed dramatically when she had to live with her husband’s family. This resulted in an inner pressure.

Explanations from Javanese physiology

The most common physiological explanation of psychotic illness in Java is the concept of sarap, referring to damaged nerves. Javanese people believe that there is an electrical current inside the nerves within the brain. Mental illness occurs when there is a short circuit of electricity inside the nerves. Javanese people use the Dutch word korslet, meaning electrical short circuit. Tuti’s family caregivers referred to three different physical explanations. First, they suggested that her illness might be inherited; secondly, that it might relate to the nerves in her brain; and third, it might relate to her condition after giving birth to her child. It was Tuti’s mother who proposed this possibility. She mentioned that there were two mentally ill people in the village whose illnesses she suspected were hereditary. However, she repeatedly said that Tuti’s illness was not inherited. Tuti’s father had a different physiological concept. He referred to damaged nerves in the brain. When a person suffers from damaged nerves, this implies that the person may have a physical defect and therefore that the possibility of full recovery may be difficult. In this situation, Tuti’s mother disagreed with her husband. She emphasized that Tuti did not suffer from a physical defect at all. She hoped that Tuti would recover soon. Aside from that, Tuti’s mother also attributed her daughter’s illness to the fact that she had just given birth to her son. Tuti’s mother argued that in Java a mother should have prolonged rest, both physically and psychologically, after giving birth to a baby. In Tuti’s situation, she actually went back to work after three months’ maternity leave. According to her mother, Tuti was still physically weak at that time. She had to return to work, but during breaks she had to return home and breastfeed her son. Her physical condition was still considered vulnerable.

Changing explanations of psychotic illness over time

An important theme emerging from these case studies was that the family caregiver’s understanding of psychotic illness changed over time relative to the progression of the illness. One explanation was replaced by another concept, influenced by the context of the treatment, explanations by healers and doctors, and the individual’s responses.

Laras’ family caregiver illustrated this dynamic of change in the understanding of illness. In the early stages of Laras’ illness, her father subscribed to a psychological concept. He explained that his daughter’s illness was caused by her personality. According to her father, Laras was a very sensitive girl and highly vulnerable to pressure. He explained that when she worked in a furniture company her friends at work often teased her. She had a normal social life, but Laras took this to heart. An episode of being teased is what led her to her first psychotic episode, he explained. Several months later, when Laras had still not recovered from her psychotic illness, her father began to adopt a spiritual explanation, suggesting that the spirit inside her grandfather’s keris was angry and had possessed her. Her father strongly believed in this concept, because Laras sometimes behaved rudely toward him. He argued that his real daughter would not have spoken harshly to him. According to Laras’ father, the spirit also prevented his daughter from taking prescribed medicines. His explanation in terms of possession was confirmed when, for several months, Laras did not display psychotic symptoms because a powerful healer had chased the spirit away. Laras’ father, however, suggested that in the future he might change his understanding of his daughter’s illness. For example, when Laras relapsed, he thought that his neighbor, who hated him, had sent guna-guna (sorcery) to him and it had affected his daughter.

The most complicated EM and care-seeking behavior was evident in the case of Didi, who was a very religious boy who was actively involved in mosque activities near his house. Under the influence of his friend, he attended a gathering of an Islamic militant group. His father was suspicious that this militant group had used a guna-guna to influence his son, because Didi told him that a member of this group asked him to drink something. Returning home from the meeting, Didi exhibited psychotic symptoms. Since he became violent, the family took him to the psychiatric department of the state hospital. His father strongly believed that his son’s drink contained guna-guna.

Despite having been treated in the hospital, Didi was not totally cured after returning home. His father then sought help from a friend who was an expert in removing guna-guna. However, the treatment failed because several days later Didi “ran amok” (ngamuk) and tried to hurt himself. The father did not take Didi to the hospital again. Rather, he sought help from a paranormal. The paranormal told Didi’s father that instead of trying to heal his son, his friend had used other guna-guna on his son to make the illness become worse. According to the paranormal, the friend resented Didi’s father and took the opportunity to attack his son. Since Didi’s illness was not improving, his father sought help from many different paranormals and finally one of them was able to remove three spirits (jin) from his body. His father said that Didi had recovered.

Discussion

Results obtained from the analysis of these studies indicate two important characteristics of explanations for psychotic illness: diversity and multiplicity, and change over time. The diversity and multiplicity of explanations were supported by both survey and ethnographic data. Psycho-social explanations (including stress, broken love relationship, conflict, lost someone) in the survey data are in line with the Javanese psychological explanation in the ethnographic data (stress, frustration, and startled). The physical explanations (genetic, brain-related disorder) in the survey data include the Javanese physiological concepts in the ethnographic data (inherited, problem with nerves in the brain). Meanwhile religious explanations (problems in the practice of religion, sent by God) and traditional abangan cultural explanations (possession, black magic) are similar to supernatural explanations in the ethnographic data (spirits possession, excessive spiritual practice, sorcery or witchcraft). This suggests that survey data and ethnographic data are consistent.

Participants tend to employ diverse and apparently contradictory concepts, including supernatural, psychological, and physiological explanations for the cause of illness, serving as a way of making sense of and giving shape to the illness experiences. These led to multiple and overlapping care-seeking behaviors, each with the goal of identifying the active cause of the illness and treating it. In part, these represent what Good and Good (Good, 1994; Good & Good, 1994) described as “subjunctivizing” elements in illness narratives, an explicit maintenance of alternative explanations, each of which has the potential for leading to successful treatment and which together thus enable families to maintain hope.

Javanese caregivers also use explanations from Javanese psychology for severe mental illness, including, as we have shown, frustration, disappointment, and stress. These explanations echoed broader Javanese cultural values in Yogyakarta, where translation between popular psychological language and traditional Javanese values is common (Subandi, 2006). These different cultural values become the source of knowledge for the people of Yogyakarta as they attempt to make sense of psychotic illness.

Despite the apparent contradictory nature of explanations, diverse explanations are often integrated within family caregivers’ cultural frameworks. Underlying these is the idea of “peace” (tentrem), or loss of it, what Geertz (1983) described as maintaining a smooth exterior and interior. Javanese attempt to maintain smooth or peaceful relationships (on the surface) and to avoid conflict. The experience of frustration (kagol), stress (tertekan), and especially agitation or feeling shocked (kaget) can threaten peace of mind. The idea that mental illness can be caused by shock is also found in other cultures. In Bali, Wikan (1989) found an illness called kesambet (similar to possession) that is caused by shock. Simons (1996) described latah in Indo-Malay culture as being provoked by being startled, particularly for people with a low startle threshold. Rubel et al. (1984) also described susto in Latin America.

The danger of being startled is emphasized by Javanese people (Browne, 1999; Geertz, 1960). Subandi (2006) has suggested that Javanese people tend to avoid being startled from early childhood to prevent mental upset or illness. Javanese mothers classically hold their babies wherever they go and treat them gently. They feel that children should have peaceful feelings all the time and be protected from sudden shocks by their parents. Following this logic, in some villages in Java newborn babies are put on a bed while their parents hit coconut sticks repeatedly to produce sound which gradually increases in volume. This is intended to train new babies to withstand loud noises and to prevent the feeling of kaget.

With regard to kagol (frustration), previous studies have identified similar findings that kagol is perceived as a possible cause of psychosis (Good & Subandi, 2004). These studies identified cases of young people developing psychotic illness which was explained as being due to their not getting what they wanted (e.g., a motorbike or cell phone of their choice) and feeling kagol.

The multiplicity of cultural explanations for psychotic illness in our research supports previous studies finding multiple explanatory models being held by patients and family caregivers, including traditional cultural, religious, and social explanations (Bhikha et al., 2012; Jacob, 2016; Saravanan et al., 2007). The concept of sarap, which emerged from this research, is similar to the concept of nervios used among Hispanic families (Guarnaccia et al., 1992). Khoury et al. (2012) explored cultural models and mental health treatment in rural Haiti. They found that most respondents employed multiple cultural understandings, both from traditional culture (rooted from Vodou ethnopsychology) and biomedical perspectives. Similar to our work in Indonesia, Khoury et al. (2012) found that holding traditional understandings did not prevent them pursuing psychiatric treatment. The main problem was the scarcity of treatment resources.

A second central theme that emerges from our studies is that caregivers’ explanations of psychotic illness change significantly over time. This may result from attempts to understand changes in the illness or chronicity, as well as negotiation between family caregivers and healers, mental health care providers, or neighbors who provide alternative information. McCabe & Priebe (2004) found that cultural understandings among individuals from four ethnic groups lacked stability. In India, Corin et al. (2004) described this phenomenon as “fluid and shifting” (p.24) cultural understandings. Thus, cross-sectional studies that assess cultural understandings at a single point in time, such as those by Marchira et al. (2016), Ohaeri & Fido (2001), and Phillips et al. (2000), do not provide a complete picture of the dynamics of family cultural understandings evolving over time.

This research also suggested that participants use many different mental health resources available in Java. These data confirmed the findings of Marchira et al. (2016), which found that while 60% of caregivers gave medical explanations, 64% of caregivers reported seeking help from traditional healers before receiving medical treatment. They visited religious healers (52%), traditional Javanese healers (19%), other alternative specialists (10%), or a combination of these (19%) before they went to health professionals. However, this does not mean that medical resources become the last resort. Our data suggested that caregivers continue to seek care from medical doctors and alternative mental health resources in a complementary way, even after contact with a psychiatrist.

Previous studies have found that cultural beliefs influence family care-seeking. For example, Saravanan et al. (2007) examined this association in the first episode of psychosis. They found that participants holding supernatural and psychosocial cultural understandings were associated with seeking care from a traditional healer. Jacob (2016) also found that participants sought help from diverse sources; they visited modern professional centers as well as faith healers, and used traditional and alternative treatments, simultaneously and sequentially. Burns et al. (2011) also found that patients with traditional explanations sought help from traditional healers prior to using mental health services, which in turn led to a significant association with a longer DUP.

However, our research raises questions about this classic claim. Good, Marchira, Subandi, Mediola et al. (2019) and Good, Marchira, Subandi, Nanwani et al. (2019) suggested that data from our different studies in Yogyakarta indicated mixed findings about whether resort to non-medical healers prior to first contact with psychiatric services affects DUP. Alternatively, our research has identified a strong relationship between DUP and the rapidity of the onset of psychosis (from initial symptoms to acute psychosis). Our data argues that sudden onset psychosis, prevalent in some cultural settings, is closely related to rapid care-seeking. We have described elsewhere multiple cases of sudden onset psychosis, followed by visits to several healers in a few days, followed by taking the individual to a psychiatrist with little delay (Good, Marchira, Subandi, Nanwani et al., 2019). Furthermore, in contrast to near-unanimous claims that short DUP is associated with better outcomes, our team has argued that rapid onset, itself classically associated with better outcomes, is also associated with short DUP. We have thus raised the question of whether a particular form of cultural phenomenology—sudden onset of psychosis—may be the underlying cause of correlations found between short DUP and better outcomes. This in turn raises significant questions about the claim that “mistaken beliefs” lead to delays in care-seeking and are thus the source of poor outcomes.

The strength of this study is that the survey data is consistent with the ethnographic data. However, the limitation of this study is that this is two sets of data derived from two different studies in which the participants are different.

Conclusion

Both survey and ethnographic data from our team’s research indicate that caregivers for persons with psychotic illness in Java employ diverse but interrelated cultural understandings and explanations for such illness. The Javanese lifeworld is a world that includes powerful spiritual forces that are available to harm or protect individuals. At the same time, Western psychological ideas, integrated into more classic notions of the Javanese person and Javanese cultural psychology, are also used to explain psychosis. These concepts, which seem to be contradictory, are often closely linked within a larger Javanese framework and are understood as complementary. Our research also finds that explanations often shift during different phases of the illness and in relation to particular treatment contexts.

It is important for mental health providers, as well as those designing systems of care, to understand the diversity and changing nature of caregivers’ cultural understandings of psychotic illness. It is also important to integrate both biomedical and traditional perspectives to achieve a comprehensive mental health system that is in line with the nature of diversity.

Footnotes

Acknowledgments

The first author wishes to thank the late Professor Robert J. Barrett, as well as Professor Helen Winefield and Dr. Rodney Lucas (University of Adelaide), for the supervision of his dissertation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for some of the projects was provided by the US National Science Foundations; a grant from USAID, Inter-University Partnerships for Strengthening Health Systems in Indonesia: Building New Capacity for Mental Health Care; and a grant from the Harvard Center for Global Health Delivery Dubai. The ethnographic study was conducted without external funding.

M. A. Subandi, PhD, is Professor of Clinical Psychology in the Faculty of Psychology, Gadjah Mada University, Yogyakarta, Indonesia. His main research areas are mental health, culture, and spirituality. His published works focus on the socio-cultural aspects of psychosis. Currently, he works on developing mental health services for severe mentally ill patients in the primary care setting, focusing on recovery-oriented care.

Ardian Praptomojati, MPsi, is a clinical psychologist and lecturer at the Faculty of Psychology, Gadjah Mada University, Indonesia. His research interests are in positive psychology, cognitive behavioral therapy, and global mental health. He has published articles on therapy for inmates in prison. Currently, he works on mental health problems among college students.

Carla R. Marchira, MD, PhD, is the head of the Department of Psychiatry, Faculty of Medicine, Gadjah Mada University. She is a consultant in community psychiatry and her work focuses mainly on community and cultural psychiatry, early psychosis, and schizophrenia. Her publications include studies of psychoeducation for caregivers of patients with early-phase psychosis. Her current research is on developing an integrated mental health program in community health centers in Yogyakarta.

Mary-Jo DelVecchio Good, PhD, is Professor of Global Health and Social Medicine (Emerita, July 2019), Harvard Medical School, and Visiting Professor, Gadjah Mada University. She has published widely on the culture of medicine and psychiatry in diverse settings, on medicine’s modernist projects globally, with a particular focus on Indonesia, and on political subjectivity and postcolonial disorders. Her current writing addresses issues of end of life care in Yogyakarta, “unlocking” and severe mental illness, and the emergence of high technology medicine in Indonesia.

Byron J. Good, PhD, is Professor of Medical Anthropology, Department of Global Health and Social Medicine, Harvard Medical School, and Department of Anthropology, Harvard University, and is Visiting Professor, Gadjah Mada University. He has published widely on issues of culture and mental illness and on theorizing medical and psychological anthropology. His current work includes studies of early psychosis in Java, the development of mental health in the public health system in Indonesia, and studies of haunting and hauntology in psychological anthropology.

ORCID iDs

M. A. Subandi

Ardian Praptomojati

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