Evaluating the Indonesia Free Pasung Movement: Understanding continuing use of restraint of the mentally ill in rural Java

Abstract

Forcible restraint and confinement of persons suffering from mental illness occurs throughout the world, including in Indonesia. Since 2010, when Gerakan Bebas Pasung (GBP) or the Indonesian Freedom from Forcible Restraint (Pasung) of Mentally Ill Persons movement was launched, national policy has been published to eradicate Pasung in Indonesia by improving the mental healthcare system. This article analyses this policy, specifically the National Mental Health Legislation (2014) and the Ministry of Health Regulation Tackling Forcible Restraint of People with Mental Illness (2017), and evaluates their current state of implementation through a local, in-depth case study. Using mental health institution mapping, two sets of semi-structured qualitative interviews with government officials and healthcare workers, and participant observation in a facility practicing Pasung, we identify the extent to which the 2017 regulation has been implemented in Winong village and discuss current efforts and persistent obstacles to eradicating Pasung. We suggest that despite reforms and the new treatment facility in our case study, the continuing use of Pasung is due to a combination of access to care issues and a widely held explanatory model of mental illness characterized by strong curative beliefs that, when disappointed, lead to a sense of threat and hopelessness.

Keywords

human rights Indonesia mental health systems Pasung physical restraint residential care facility

Introduction

The physical restraint and confinement of people with mental illness has a long history. Phillippe Pinel was much celebrated for freeing the mentally ill from their chains in Paris in the late 18th century. However, Patel and Bhui’s (2018) renewed call to address human rights abuses of people with a mental illness, including chaining, highlights the continuing existence of restraint and forced confinement practices in institutional and domestic settings in many parts of the world (Minas & Diatri, 2008). In Indonesia, since 2010, when Gerakan Bebas Pasung (GBP) or the Indonesian Freedom from Forcible Restraint (Pasung) of Mentally Ill Persons movement was launched, national legislation and a Ministry of Health Regulation have been published to eradicate these practices. In this article, we analyze this policy and evaluate its current state of implementation through a local, in-depth case study.

A history of Pasung policy

Pasung, as it is referred to in Indonesia, can include different forms of constraint such as “wood stocks, chaining, locking someone in a cage, in a room, banishing them to the middle of the forest, or other types of forcible restrictions” (Central Java Governor Regulation No. 1, 2012). Data from the National Health Survey (RISKESDAS) estimated that around 14 percent of Indonesian households with a person diagnosed with a severe mentally illness had experiences with Pasung (Badan Penelitian dan Penembangan Kesehatan, 2013, 2018). Human Rights Watch has suggested that this amounts to as many as 57,000 Indonesians having experienced Pasung; with 12,800 estimated to be experiencing it at the end of 2018 (Human Rights Watch, 2016, 2018).

In 1966, Indonesia legislated that persons with a mental illness should be treated and given medication in a treatment facility (National Legislation of the Republic of Indonesia no. 3 1966 about Mental Health, 1966), and a Ministerial Letter from the Department of Domestic Affairs was sent to all governors in 1977 asking their communities to refrain from using Pasung and to instead deliver their mentally ill to the mental hospital (Ministerial Letter from the Ministry of Domestic Affairs, 1977). However, it was not until 2010 that the Ministry of Health led the cross-ministerial Gerakan Bebas Pasung (GBP) movement, or Freedom from Forcible Restraint (Pasung) of Mentally Ill Persons movement (Detik News, 2010). This movement has gained a strong following in civil society, including in religious, academic, and professional institutions. At the governmental level, GBP is now led by both the Ministry of Social Welfare, who launched “Gerakan Stop Pemasungan” in 2016, and the Ministry of Health. As both Ministries grapple with the enormity of achieving an Indonesia free from Pasung, different target dates are set and reset. The Ministry of Social Welfare last declared that by the end of 2019 Indonesia would be Pasung free; whilst the Ministry of Health has suggested the date is 2023 (Viva News, 2018).

In 2014, the National Mental Health legislation was enacted. Using a human rights-based approach, it rendered any violence against a person with mental illness, including Pasung, illegal (National Indonesian Legislation No. 18, 2014 About Mental Health, article 86). It also provided a blueprint for the building of a comprehensive, mostly institutional-based mental health system. In 2017, the Ministry of Health Regulation Tackling the Forcible Restraint of People with Mental Illness (Ministry of Health Regulation no. 54, 2017), enacted by the Ministry of Health, clarified and extended this blueprint, making explicit the link between building an integrated mental health system and the eradication of Pasung in Indonesia. This Regulation mapped out the basic building blocks of the Indonesian mental health system, referencing the universal healthcare access and national insurance initiative implemented through JKN (Jaminan Kesehatan Nasional; National Indonesian Legislation No. 40, 2004 About the [JKN] National Social Security Scheme) and BPJS (Badan Penyelenggara Jaminan Sosial; National Indonesian Legislation Indonesia No. 24, 2011 About Implementing [BPJS] Social Security) legalisations.

According to the new policy, access to care is provided predominantly through primary care facilities including the Puskesmas (community healthcare center), the assisting Puskesmas, polyclinics, the army, police clinics, and family doctors using an outpatient model. Severe cases are to be transferred to one of the district or private hospitals or the mental hospital (see Figure 1). The other potential treatment pathway leads directly from the community to the general or mental hospital. After a psychiatric patient has been treated, they should return to the community through back referral to a primary healthcare center where they continue outpatient treatment. This system, which is covered by the national insurance scheme, is supplemented by other services that are not fully covered by this insurance scheme. These include: residential and day care facilities for chronic cases; and rehabilitative services for reintegrating patients into the community and outreach services, such as home visits by Puskesmas staff and Kader Jiwa (lay community mental health advocates). Services are implemented in a coordinated manner by trained mental health professionals, and monitored, evaluated, and funded through a combination of national and local budget allocations. Networks of civil society initiatives ideally complement these formal systems of care.

Current efforts to eradicate Pasung

At the national level, 32 of Indonesia’s 34 provinces have programs aimed at locating, freeing, and providing treatment to people experiencing Pasung. Six regional areas have enacted legislation that mandates an end to Pasung practices. Periodic provincial and community reporting has begun, including systems utilizing mobile phones and social media. Cross-sectoral mental health teams at both the national and regional levels meet regularly and implement GBP. Seven-hundred Kader Jiwa (lay community mental healthcare advocates) and 1,500 general practitioners (known as GP Plus) have received mental health training and are working in the community (Ministry of Health Regulation no. 54, 2017). Numbers of mental health nurses, clinical psychologists, and psychiatrists have also increased. Mental health facilities including primary care centers (44% of 9,005) and district-level general hospitals (56% of 445) are increasingly equipped to handle mental illness, including Pasung cases (Kemenkes RI, 2015), and their services are covered by the national insurance scheme (Indonesian Ministry of Health Regulation No. 52, 2016). Overall, the number of Pasung cases appears to have declined, from an estimated 18,800 in 2013 to 12,800 in 2018 (Human Rights Watch, 2018). Provinces Bengkulu, West and East Kalimantan, Bali, East Nusa Tenggara, and Bangka Belitung have been declared Pasung free (Tribun News, 2017). These numbers, however, are by now somewhat dated. The more contemporary data pertaining to the numbers of Pasung cases or areas declared Pasung free remains speculative. Statistical estimates based on national surveys and projections and data tracking systems often result in conflicting totals. In addition, Pasung cases continue to be reported in areas declared Pasung free (e.g., Ninu, 2018; Prokal, 2018; Smith et al., 2018; Somba, 2018) due to the tendency to re-Pasung formally freed cases (Ministry of Health Regulation no. 54, 2017). The absence of a reliable centralized data tracking system evaluating GBP’s progress necessitates any analysis to begin with a locally grounded case study approach.

Literature review

The literature examining Pasung includes case studies addressing themes such as the nature of restraint and its underlying reasons (Idaiani & Raflizar, 2015; Minas & Diatri, 2008; Tyas, 2010); re-Pasung after an individual is initially freed (Wijayanti & Masykur, 2016); personal stories (Sg & Colucci, 2015; Tyas, 2010; Yusuf & Tristiana, 2018); patient demographics and other characteristics (Puteh et al., 2011; Tyas, 2010); and issues related to the stigma of Pasung (Weny & Wardhani, 2014). These case studies follow diverse approaches; some use bottom-up interpretative frameworks to provide a descriptive analysis of policy issues identified as central to GBP by the Ministry of Health’s Regulation. For example, Nurjannah and colleagues (2015) analyzed interviews with 49 Indonesian mental healthcare professional and patients about the existing mental healthcare system and its potential for human rights violations, including Pasung. Leocata’s (2015) study of two treatment sites provided a narrative account of the inadequacies of primary hospital care and social shelters, focusing especially on the role of the family to identify the changes needed to achieve enduring freedom from Pasung.

Few health systems-related studies have been conducted to evaluate the progress and barriers in the implementation of GBP. Njoto and colleagues (2018) provide a policy analysis of an innovative system introduced in East Java province to combat Pasung, concluding that it had increased identification and treatment of Pasung cases through mental health policy, better data systems, access to mental healthcare, and the empowerment of health workers. The research did not, however, discuss the process of policy implementation on the ground. Similarly, other publications focus on either provincial-level analysis (i.e., Puteh et al., 2011) or unique community-based initiatives (e.g. Suryani et al., 2011).

The present study involves a systematic appraisal of the national GBP-related policy implementation, through the lens of a case study situated in Central Java.

Method

We employed simple mental health system mapping based on the European Service Mapping Schedule (ESMS; Johnson & Kuhlmann, 2000) to evaluate the progress and enduring obstacles faced by the implementation of the GBP policies. Our adaptation of the Mapping Schedule utilized two distinct, yet complementary methodologies. First, we analyzed qualitative interview data to determine the extent to which the stepped process to free Indonesia from Pasung, as defined by the 2017 Regulation, had been accomplished. This case study approach paid attention to the existence or lack of mental health facilities, coordinated systems of care (including medication and personnel), and monitoring and data tracking systems. Barriers to the goals were also noted. We examined additional implementation barriers through participant observation and in-depth ethnographic interviews. We also visited the House of Mbah Marsiyo, a private facility that continues to practice Pasung in Winong village, to understand some of the principle drivers of Pasung practices at the community level.

Case study setting: Winong village

Winong village is in the southern coastal sub-district of Mirit, Kebumen District in Central Java province, Indonesia. The 171 hectares of flat, fertile, mainly farming land is inhabited by 1,513 residents, of which 785 are male (Direktorat Pemberdayaan Masyarakat dan Desa, 2017; Kementerian Pengetahuan dan Komunikasi, 2016). Almost 20% of the region live below the poverty line (Badan Pusat Statistik Kabupaten Kebumen, 2017). Kebumen District was selected because it is an area known for its progressive mental healthcare policies and programs, supported at the provincial level by the 2012 Central Java legislation for managing Pasung (Central Java Governor Regulation No. 1, 2012). Consequently, we anticipated significant progress towards the GBP compared to other areas. In addition, Winong’s high numbers of identified Pasung cases (mainly residing within a single facility) enabled us to better access and observe progress at the community level.

Participant selection and data collection

Part of the data in this study was initially produced for a study on Ageing in Rural Indonesia and an advocacy report written by the authors to free chained residents in Winong village (see Hunt et al., 2016). The Ageing in Rural Indonesia study was a 12-village survey (including Winong) of older adults and involved a quantitative survey of all 259 residents of Winong village who were aged 60+, covering a range of topics including health service use. The qualitative component encompassed interviews with government and healthcare workers, identifying current policy and program initiatives in place for older persons. A team of four researchers, including AH, also interviewed personnel involved with mental health programming for the general population. Ethics approval was obtained through the Australian National University’s Ethics Board, for the original study on Ageing Protocol (2015/481) and for the first author’s (AH) doctoral studies (2015/455), which resulted in the production of the advocacy report. Ethics approval included a waiver to use selected secondary de-identified data collected during the production of the advocacy report and intervention. Both protocols were supported by research permissions granted by the Indonesian government.

Mapping mental health services

The stated method of achieving an Indonesia free from Pasung, mapped out by the Ministry of Health’s 2017 Regulation and trends in the international literature on mental health mapping, suggests that mapping systems should only code (Western psychiatric-inspired) systems of care planned specifically to service persons with a mental illness (see Johnson & Kuhlmann, 2000). Mental health mapping systems like the ESMS and more recent systems (e.g. DESDE-LTC 2.0; Sadeniemi et al., 2018) exclude indigenous systems from their mapping approaches, probably due to the wholistic, as opposed to specialist, approach and labelling service providers using indigenous epistemologies. Similarly, our method defined a mental health service as something with the specific aim of managing mental illness and the specific clinical and social difficulties related to it, and included facilities provided by the health and social services, and voluntary and private institutions (Johnson & Kuhlmann, 2000, p. 18). We did not include in our mapping indigenous systems of care, other than those with the expressed aim of managing Pasung cases. We identified existing mental healthcare facilities and care and data tracking systems through a stepped process.

First, we listed all mental health services accessed by 259 people over the age of 60 from Winong village surveyed for the Ageing in Rural Indonesia Study in 2015. We then integrated local mental health programs and included information regarding the current state of implementation extracted from qualitative semi-structured interviews. The people interviewed included a district representative from the social welfare office, the village head and social welfare program manager, the village doctor, the health center administrator, the nurse in charge of the mental health program, the village midwife, and two Kader (lay community health advocates). The interviews were undertaken in September 2015 and led by the Ageing in Rural Indonesia Study’s four principal researchers (McDonald, Utomo, Ulil, and Hunt) who had had extensive experience in mixed methods research in Indonesia. All interviews were conducted at places of work or residence. We asked participants to speak about local programming for aged care and other mental health initiatives. Interviews were conducted in Indonesian, audiotaped, and subsequently transcribed. Oral consent was sought and recorded.

Information about the existing mental health programs from the Ageing in Rural Indonesia Study were supplemented by geographic mapping of other healthcare services. We identified primary care facilities, day care centers, residential facilities, and rehabilitative or outreach programming within the subdistrict of Mirit, as well as secondary care facilities that offered mental healthcare programming throughout the Kebumen District. We also mapped tertiary care facilities at the provincial level. This geographic mapping was based on an online search, followed up by directly contacting the facilities to inquire about their mental health programming. Specifically, the research assistant conducting the follow-up asked what healthcare programming was currently in place and how it operated (to identify access issues).

Semi-structured interviews and participant observation

Additional semi-structured interviews and participant observation were conducted with the head of a privately-run residential care facility in Winong village that practices Pasung, as well as with the nurse and doctor at the primary healthcare center called Puskesmas Pejagoan in Kebumen city. This facility runs a comprehensive mental healthcare program, including a 12-bed crisis care center for evacuated Pasung cases. These interviews, conducted by AH, were open-ended and focused exclusively on mental healthcare programs. They took place in the participant’s workplace or residence, and were transcribed in Indonesian and Javanese. Where a mix of both languages was used, the interviews were transcribed verbatim and an Indonesian language translation was provided in the transcript, overseen by AH. Oral consent was obtained and recorded. Interviewees were asked to describe the existing mental healthcare facility, its programs and personnel, the use of medication, and the available data systems. Questions for all interviews were revised iteratively, allowing for emergent themes to be explored in greater depth, including issues related to Pasung, if the topic was volunteered by participants.

Data analysis

The first set of interviews from the Ageing in Rural Indonesia study were re-analyzed by highlighting the sections relevant to mental health or illness; only these sections were analyzed by AH and interpretation cross-checked by the project’s research assistant. This team fully analyzed the transcripts of the second set of interviews and a selection of observational extracts obtained from the original advocacy report.

This first set of interviews were deductively coded, with specific attention to the measures suggested by the Ministry of Health’s 2017 Regulation to reduce Pasung. Specifically, we created codes that referenced the presence or absence of existing mental healthcare facilities or programming, including trained personnel and availability of treatment (e.g., medication). We also used codes related to existing monitoring / data collection initiatives. Secondly, we coded transcripts for participant appraisals of existing mental healthcare facilities or programming. This data was collated and triangulated against other materials, including: media releases; documentation and shared data from local healthcare institutions; observations; parallel reports from different interview participants; and personal communication to verify information.

The second set of interviews were coded using a combination of the deductive codes from the first set of interviews combined with inductive codes developed using a Conventional Qualitative Content Analysis approach (see Hsieh & Shannon, 2005). We used the deductive codes from the first set of interviews and supplemented information from the mental health institution mapping to explain difficulties related to the 2017 Regulation’s implementation.

Lastly, using a critical realist lens (see Collier, 1994), we identified themes related more broadly to the attainment of, or obstacles to achieving, an Indonesia free from Pasung. We coded for any themes that could feasibly be linked to the existence of Pasung in that community. Themes were then collated as a list, triangulated to assess trustworthiness of data, and finally integrated with additional source materials to generate theoretical suggestions explaining major obstacles to GBP implementation.

Results

Mental health service mapping

Primary care

The Ministry of Health Regulation from 2017 suggests the Puskesmas as the cornerstone of an effective mental healthcare system. It recommends that mental health care programming in the Puskesmas should be managed by personnel with appropriate training and proper access to medication and that patients should receive support through referral and outreach services, e.g., home visits.

In the case of Winong, a doctor runs a clinic and assists the Puskesmas, which is staffed with a midwife and a team of lay community health advocates. The latter run outreach programs for children under five and their mothers, as well as for elderly citizens. These facilities provide no explicit mental healthcare services but they do record data on mental health and emotional problems within target outreach groups and refer cases related to mental illness and their data to the sub-district Puskesmas. Puskesmas Mirit and the closest Puskesmas, Prembun, each have one nurse on staff who runs the mental healthcare program, including extensive record-keeping for the District Health Office. The interviews showed that neither the nurses nor the doctors at the two Puskesmas had any specialist mental health training beyond their main qualifications. They therefore do not undertake outreach services for identified mental illness-related cases. This gap is filled by a Ministry of Social Welfare’s sub-district welfare workers’ program (Tenaga Kesejahteraan Social Kecematan; TKSK). Every subdistrict is allocated a welfare worker who is on call to manage homeless- and other welfare-related cases. This has meant that they manage many individuals with mental illness.

At the time of interview, mental illness-related cases in the Puskesmas were treated with medication and severe cases were referred to Puskesmas Perjagoan, located in the district urban center (20 km away). TKSK workers also referred cases to Puskesmas Pejagoan. Puskesmas Pejagoan is directly funded by the provincial government of Central Java to create a model-standard integrated mental health service. This primary care facility includes: emergency shelter and treatment; transfer of patients to the mental hospital; discharge planning and ongoing care; livelihood education and rehabilitative services; education for families; and an early detection program within their sub-district. However, this primary care facility is intended to service the immediate community in Pejagoan and has limited capacity to assist cases referred from outside the area (including from Winong village).

Secondary and tertiary care

The national insurance scheme (BPJS) treatment pathway (Figure 1) suggests that patients who are unable to be treated in outpatient care should be admitted to the closest general or mental hospital, which should have appropriate mental health services. There are now three hospitals within the range of 4 to 40 km from Winong that offer additional primary care and designated mental health services called Klinik Jiwa. Each Klinik Jiwa has 1–2 psychiatrists and 1–2 nurses; the RSUD¹ Dr. Soedirman also has a psychology polyclinic staffed by two psychologists. However, all polyclinics, except RSUD Prembun, have restricted hours and days of operation.

Figure 1.

Treatment pathway. Diagram adapted from the Indonesian National Department of Health’s Android application, Sehat Jiwa, launched for World Mental Health Day 2015 and later re-published in the Ministry’s 2017 Regulation.

Figure 2.

A Pasung resident at the house of Mbah Marsiyo. Photo by Robert Ern-Yuan Guth (2015).

None of the hospitals have inpatient facilities for mental health-related cases. However, all three of these hospitals—RSUD Prembun (4 km from Winong village), RS² Dr. Soedirman (18 km), and RS PKU Muhammadiyah Gombong (40 km)—have allocated one bed each for mental health cases for the purpose of emergency treatment and referral, often to Puskesmas Pejagoan, if not directly to a mental hospital. Patients needing referrals must pay for their own transport to Puskesmas Pejagoan or one of Central Java’s seven mental hospitals, of which the nearest two are located in Magelang 80 km away. The interviews with administrative staff at the mental hospitals also suggested that the length of stay was determined and often limited by insurance. For example, mental hospital RSJ Prof. Dr. Soerojo Magelang limits patients to 35 days and RS Jiwa Daerah Dr. Amino Gonddohutomo Semarang (154 km), limits them to 23 days unless they pay directly for treatment. Primary and secondary care for a person with a mental illness is covered by an annual allocation itemized by diagnosis in the national insurance scheme. Unfortunately, a significant number of Indonesians are not yet registered users in the national insurance scheme; in addition, many unregistered users come from lower social economic backgrounds, including large numbers of people with mental illness (Robbi, 2014).

Discharged patients ideally continue their treatment in the community via outpatient primary care facilities (see Figure 1). Unfortunately, the interviews with mental health nurses suggest referred patients often do not make it to their intended destination or the facility receiving them does not have the required medication. Consequently, patients need to travel long distances to obtain prescriptions for their regular medication.

Residential, day care, and rehabilitative services

As indicated by the 2017 Ministry of Health Regulation, people managing a mental illness ideally have supportive family members to assist in their care, rehabilitation, and reintegration into the community after hospitalization. Day care services are an important initiative to provide home carers with respite and re-socialize formerly institutionalized patients. Rehabilitative services ideally further improve patient social skills and equip them with vocational skills essential to achieving patient reintegration. However, no such day care or rehabilitative services as defined by the 2017 Regulation were identified in our mental healthcare mapping.

When family support is unavailable, the person with a mental illness becomes the responsibility of the government (Mental Health Legislation, 2014). While the provision of government residential care facilities is mandated by the 2017 Ministry of Health Regulation and national and provincial level legislation, such facilities were completely absent from Winong village and surrounding areas at the time of the 2015–2016 interviews. With the closest government-run facility in Magelang (80 km), a civil society initiative run by a private individual filled the need for a residential care facility in Winong.

The remainder of the results section will take a closer look at the private-run Winong village residential care facility that practices Pasung. Using participant observation and an in-depth interview with the facility’s caretaker, we shift from tracking the implementation progress and obstacles against GBP’s aims to an in-depth analysis of the continuing drivers of Pasung practices in context.

Case study: The house of the Mbah Marsiyo

One by one, the group of shy, enthusiastic young men extend a dirt-caked hand in welcome; they have been working on subsistence farming and looking after other residents. Each of them has a chain fixed around an ankle. This makes it clear to us and the whole village that they belong here, at the House of Mbah (grandfather) Marsiyo. The household and collection of materials are extraordinary, yet normal: old carts, bicycle taxis, piles of lumber, bricks, lumps of concrete, straw, hay, bales of donated cloth, all dissolving into the decaying buildings in ways unique to this tropic environment. Moving around the place are groups of goats, chickens, pigeons, and residents. To the left of the courtyard are the rows of open concrete cells where 31 Pasung residents are chained by an ankle to the floor or to a lump of concrete. The stench is nauseating at first, the ground littered with human waste. They have no bedding, no free access to water, no toilets, and nothing to occupy themselves with except each other.

Mbah Marsiyo is now 80 years old. He has been running the residential facility from his home for 40 years. He willingly accepts that God has given him a role to take in patients from desperate families, offering them the little that he has. An indemnity letter protects him against legal reprisals. He says he asks for no financial remuneration from families; he does not want to add to their burden. He told us how it began.

“This is Buddha’s land, from ancient times until now, this small expanse of land has been occupied by humans for only a brief time. To answer your question, it would be better to ask the land directly.” He did not expect people to bring their “orang gila,” or crazy family members, to him, but they did. Only a few at first. “I tied them to trees, to their wooden trunks and they got better … Until this very moment I’m not sure how. There was no medicine, there was no payment of any kind. But they got better.” Mbah Marsiyo draws on traditional animus belief structures in the Javanese worldview; he sees his land imbued with a sacred energy that calls people with a mental illness to it and heals them. This is consistent with him having no interest in offering anything that he conceives as therapy.

For Mbah Marsiyo, therapy would mean practices such as massage, which he will not allow under any circumstances for his patients because “you can’t touch [the patients].” Even the stink of their sweat can lead to contagion, he says. Therefore, Mbah Marsiyo has instituted a system of care in which functional unchained or recovered patients care for the remaining acute cases, attending to their everyday needs. “Crazy people caring for crazy people,” he says. Patients are brought to Mbah Marsiyo’s house often after long stays in psychiatric hospitals. They are initially chained in a location, but when they establish trust that they will not flee, and show that they can eat, drink, pray, and bathe unassisted, they are freed to roam with only a loop of chain around their ankle. Although he offers no explicit therapy to the Pasung residents, free-roaming residents attend biweekly group recitals of Islamic prayers, and they work in the fields, on the brickworks, and on building projects.

Twice a day, all residents are given small meals of boiled and salted kibbled cassava root, supplemented by fruit from surrounding trees and water that is boiled from the well filled in plastic bottles. Puskesmas Mirit in addition helps out by supplying weekly rice meals with small amounts of protein to supplement residents’ meagre rations. In addition, the Puskesmas team visits monthly, providing other food supplements, plus hygiene kits and medication. Unfortunately, local Puskesmas data tracking of medication from the district health government suggests that supply had not kept pace with the fluctuations in patient numbers, e.g., some patients who had been on a regular schedule of anti-psychotic medication were then switched to vitamin supplements when nothing else was available. The Puskesmas nurse explains that treatment compliance is impossible to monitor and additional interventions cannot take place due to the private nature of the facility.

The amenities are extremely inadequate. The free-roaming residents are accommodated in the prayer room or in rickety dirt-floored lean-tos, where they sleep on rag-filled bags or piles of straw. The Pasung residents are chained on concrete floors; very few have access to sacking or straw for comfort. The roofing material, a combination of tiles, cement, pressed asbestos, and tin, barely covers the residents who are chained towards the front of the building; they are drenched every time it rains. There are no bathrooms, so urination/defecation occurs on site for Pasung residents and in the nearby river for the free-roaming residents.

Attitudes and beliefs

Mbah Marsiyo’s model of illness etiology rests in God’s hands. All is “God’s secret.” There are many reasons that patients fall sick, he says. Sometimes it is a broken heart or unfulfilled dreams and wishes; others involved in family quarrels have reacted by wounding or killing a family member. These explanatory models of mental illness were shared by some other mental health workers and patients themselves (Hunt et al., 2016). Mbah Marsiyo also suggested that some patients might be the victim of their parents’ unceasing quest for wealth, which according to Javanese superstition will cause the child to go crazy. Physical signs of mental illness, according to Mbah Marsiyo, include red eyes or a finger abnormally shorter than the others; these are signs that the afflicted individual will never recover. Some of Mbah Marsiyo’s beliefs about mental illness suggest an enduring quality and deep-rootedness of the illness in the sufferer.

This is contrary to the curative models of mental illness held by patients and their families within the facility (Hunt et al., 2016). They believe that an absence of symptoms in patients currently on medication means that the patient is permanently cured. Hence, they feel no need to source continuing medication from the hospital. When the patient relapses, discouraged by the system of care that they had just experienced which did not cure them (via the hospital), they turn to informal community facilities such as the House of Mbah Marsiyo.

Classic stereotypes of people with mental illnesses as seen in OECD countries appear in Mbah Marsiyo’s narrative. For example, he considers them as stupid and gullible. Many of his residents, he explains, believe in his greatness because he felled a tree by punching it. Because they are ‘crazy’ people, he says, they do not understand that the tree was already weakened by decay and therefore easy to fell. Someone of sound mind would not fall for this, he said. He goes to some lengths to build an image of his own strength in the eyes of his Pasung residents, he explains, because he describes them as violent. “They will hit you,” he says, “but they won’t hit me.” Furthermore, some residents are non-responsive according to him (referring to catatonic cases). Even if they were tended to by “a beautiful naked woman,” they would not register it or react.

Mbah Marsiyo admitted that at the time of interview the household was overrun with people. “We don’t have enough space and so many keep arriving … Really it’s up to the government to handle.” One may even question whether he is losing heart in the sacred quality of the land when he says: “those who come here have tried everything; they are poor. They have had medical treatment previously. Here is just a band-aid [not a solution] for those who are broken. They are waiting to die.” This statement reveals a deeper reason for the existence of facilities like Mbah Marsiyo’s house, of which there are many throughout Indonesia. As government officials and health workers in the area suggest, it is a service to the families of the people suffering from a mental illness. It protects the healthy family members from the financial and social burden of keeping a severely mentally ill person in their home. They are sent to places like the House of Mbah Marsiyo to be forgotten; this is also supported by the fact that most residents come from outside the village (see Table 1) and family members almost never visit according to Mbah Marsiyo and the nurse from Puskesmas Mirit.

Table 1.

Descriptive statistics for Winong village facility residents.

Residents at the Winong village facility March 2014 – August 2016 (N = 205 patients)
Patient numbers	Range	28–60
Pasung cases^a	%	51.7
Stay length (months)	Range	1–30
	Mean	6
Patient visits	Mode	1–2
Age (years)	Range	16–60
Sex (%)	Male	80
	Female	13
	Unrecorded	2
Address (%)	Winong	0
	Kebumen	43.4
	Central Java^b	63.9
	Other islands	1.5
	Unrecorded	0.5

^aObserved cases during the August 2016 visit only (N = 60 patients); ^bincludes cases from Kebumen sub-district. Raw data from Puskesmas Mirit’s mental healthcare records.

The House of Mbah Marsiyo in context: Parallel systems of care

The authors’ initial involvement with Winong village was through an advocacy intervention aimed at freeing chained residents by providing an alternative humane residential facility. We produced an evaluation of the facility at Mbah Marsiyo’s house aimed at seeking input for methods of facilitating action and general awareness-raising. We circulated this document in hard copy amongst mental health professionals and actors in GBP, including in the government, an NGO, and academic and civil society groups, from the national to the village level. With their input, we drew up a blueprint for a four-stage intervention promoting the foundation of a new residential care facility. We presented this information to the mayor of Kebumen and the Health Department.

This first attempt at facilitating action failed, so we fostered an environment for further dialogue, networking, and empowerment of local actors by inviting the mayor (represented by the head of the Health Department), Mbah Marsiyo (who declined the invite), and the head nurse to participate in an international workshop on GBP. This event was attended by foreign academics and students and included a visit to the House of Mbah Marsiyo as part of the Center for Public Mental Health at Gadjah Mada University’s summer school program immediately following the workshop. Days after the conclusion of the workshop, the head nurse met with the head of the Kebumen Social Welfare Department. This action started a series of community activities (working bees) at Mbah Marsiyo’s house, government meetings, political pledges, and a local media storm that culminated in the opening of a new mixed residential care facility for persons with a mental illness and homeless people in December 2017.

Latest data from October 2018 suggests that here are 13 residents at the new facility, only four of whom were transferred ex-Pasung cases from Mbah Marsiyo’s house. Testimonies from TKSK volunteers, who in addition to their regular duties also staff the facility, indicate that discharge mechanisms have been implemented in a staged fashion for remaining patients at Mbah Marsiyo’s house. Patients are to be transferred one by one to Puskesmas Pejagoan and then to the mental hospital if needed. They are accompanied by a member of the TKSK team upon their release and handed over to the volunteer counterpart in the neighboring district, or to the family if the individual resides within the district. However, data from January 2019 suggests that only a handful of patients have been transferred using this approach and more patients keep arriving at Mbah Marsiyo’s house. So, whilst there now exists a district residential care facility providing a more humane and resourced residential environment and discharge mechanisms from the old facility, most residents from the House of Mbah Marsiyo have not been transferred. The failure of integration between community- and government-led services has meant the facilities continue to operate in parallel.

Discussion

Previous health systems literature about Pasung describes either policies for combating Pasung or deficiencies in the mental health system. In this study, we pursued both. First, a literature review summarized the currently proposed methods and government regulations for eradicating Pasung. Second, a case study systematically mapped existing mental health systems and utilized two sets of semi-structured interviews to evaluate the extent to which national-level guidelines for ending Pasung have been implemented. Third, we expanded the standard mental health mapping approach by including analysis of a private residential facility that practices Pasung to complete our portrait of the local achievements and enduring obstacles in ending Pasung in Winong village and its surrounding areas.

Although many of the building blocks specified by the 2017 national regulation do exist in Winong village, including provision of some primary, secondary, tertiary, and outreach care, there are several gaps in the provision of basic services. Some of these gaps are filled by civil society or other unrelated government initiatives. For example, our mapping exercise identified outreach workers, passing on mental health information to the Puskesmas as mandated by the 2017 Ministry of Health Regulation. However, these lay community health advocates had not received the obligatory mental health training and were only working with under-fives and older community members. These lay health workers were supported by the Ministry of Social Welfare’s TKSK community outreach workers whose primary objective was to respond to homeless cases; they assisted and referred homeless people with severe mental illnesses.

The mapping also identified functioning mental health programs within primary care (i.e., in the Puskesmas, Klinik Jiwa, and psychology clinics). However, the most accessible primary care clinics had no trained mental health expertise; Puskesmas nurses in charge of the mental health programming did the best they could with their lack of training and limited resources, including limited medications and referral pathways plagued by access problems. Psychiatric and psychology clinics were geographically accessible but had limited hours of operation and no provision of emergency services. Severe and emergency cases were mostly referred onto the 12-bed crisis facility offered by Puskesmas Pejagoan in Kebumen city, which has only finite resources to assist patients from outside its geographic area (which does not include Winong).

There were no inpatient facilities at any of the general hospitals within the district, although three of them did allocate a single bed for emergency mental illness cases awaiting transfer. The long distances to psychiatric hospitals combined with transportation costs borne by patients create a double-access burden, particularly for those of low socio-economic status. In addition, some psychiatric hospitals do impose limits on length of stay covered by the national insurance scheme and in general many Indonesians, particularly vulnerable individuals who may be homeless or suffering from mental illness, are not registered with the national insurance scheme.

Access barriers related to geography, bureaucracy, and limited available expertise in their receiving health posts also impacted referral patients upon returning to their local Puskesmas for outpatient treatment. A lack of coordination between primary- and secondary-level facilities means that necessary documentation was often missing and limited medication and treatment were available. No carer support programs, such as day care, rehabilitative, or re-integrative initiatives, existed. However, at the end of 2017, a district-run residential care facility was opened and now provides more humane residential treatment for persons with severe mental illnesses. However, this district facility has failed to coordinate effectively with the informal facility practicing Pasung, the House of Mbah Marsiyo, which continues to exist in parallel.

In order to achieve a comprehensive mental healthcare system for Winong village, access barriers need to be remedied through additional facilities and mental health services, provision of appropriate training, and the eradication of bureaucratic obstacles to ensure access to mental healthcare under the national insurance scheme. Our qualitative research findings suggest that the provision of mental health services, while necessary, may not be sufficient to free current Pasung cases or to prevent new cases. The House of Mbah Marsiyo not only continues to exist but is growing, despite critical national and international press coverage (e.g., SBS, 2018) and the opening of the new well-publicized government-run residential facility. Clearly, the road to Mbah Marsiyo’s house is well trodden and easily accessible—there is very little paperwork and no expected ongoing responsibility, financial or otherwise, for the families.

We suggest another reason that Pasung continues to exist is a complex interplay of issues related to access mapped above, in combination with the attitudes and beliefs held by the community, including individuals like Mbah Marsiyo, who actively engage in the practice of Pasung. Our results indicate that some patients hold strong curative models of mental illness. These unrealistic expectations of the curative quality of medication do not support treatment compliance and lead to disappointment and rejection of the medical model and formal mental health system. Curative models give way to an understanding of mental illness as incurable and unmanageable when medical treatment and alternatives fail, permanently marking the individual sufferer with the stigma of mental illness. When the economic and social burden of ill family members becomes too great, our findings show, desperate families deposit them in places like Mbah Marsiyo’s house.

The depiction of Pasung residents as dangerous due to their violent behavior and/or their potential for contagion or non-responsiveness can result in an understanding of a family member with a mental illness as a potential threat to the family’s physical safety and social and/or financial survival. If mental illness is enduring, there appears to be no hope for any cure or end to the ordeal involving significant financial costs (for treatment and lost opportunity) and social costs (stigma) within the family and community. Therefore, sending a family member with mental illness to Mbah Marsiyo who offers continuity of ‘care,’ regardless of conditions, frees the family from the financial and social costs associated with caring for a person with a severe mental illness.

Strong expectations for cure, which when unfulfilled lead to hopelessness and a view of people with mental illness as a threat to safety or to one’s financial and/or social survival, may explain why Pasung practices persist and why isolated mental health system development will not achieve GBP’s aims. If confirmed by future research, this points to the need to determine how widely these views and expectations are shared amongst families, community, healthcare workers, government actors, and even patients themselves. In addition, we need to explore the mechanisms by which this model interacts with access barriers to mental healthcare.

Conclusion

This study evaluated the implementation of GBP-related policies aimed at freeing Indonesian patients from Pasung. Our mental health institution-mapping approach, enhanced by in-depth analysis of semi-structured interviews and observation in the village of Winong in Kebumen District, identified both progress and obstacles related to GBP. In particular, it appears that failures to find curative treatment lead to hopelessness; together with a view of people with mental illness as a threat to safety and economic stability, these impede efforts to eliminate Pasung. As Winong is a relatively well-resourced village in an area known for its progressive mental health policies, results cannot be generalized to other areas in Indonesia. However, this study provides a comprehensive list of intervention areas related to health system access problems for Kebumen District, as well as a framework for future analysis of other geographic areas. We also acknowledge that due to the secondary nature of a part of our data, we did not specifically ask respondents about Pasung practices, which may have limited the information shared regarding beliefs and attitudes associated with the practice. In addition, the second section of our results is based primarily on a single in-depth interview, supplemented by other interviews and observational data at the facility. Therefore, our conclusions are tentative and point to the need for further research to confirm our findings.

Footnotes

Acknowledgments

We would like to acknowledge the contributions made by the larger advocacy team at the Center for Public Mental Health, Psychology, Gadjah Mada University, key actors in the Indonesian Kebumen government (notably Budi Satrio and team) and broader NGO sector, and our Indonesian academic colleagues involved in GBP who guided the completion of this work. We also want to acknowledge the work of Ninik Supartini and Dr. Mahar, who in the last few years have provided the means for major infrastructure reforms at the House of Mbah Marsiyo. Thank you also to our Australian, European and North American-based colleagues, Prof. Hans Pols (University of Sydney), A/Prof. Harry Minas (University of Melbourne), A/Prof. Philip Batterham (Australian National University), Prof. Zachary Steel (University of New South Wales), Emeritus Prof. Peter McDonald (University of Melbourne), Prof. Byron and Prof. Mary-Jo Good (Harvard Medical School), Prof. Theo Bouman (University of Groningen) and A/Prof. Erminia Colucci (Middlesex University London). We are also indebted to the larger team from Global Mental Health, McGill University, Canada, who encouraged and provided valuable feedback on the production of the final manuscript. Most of all, we thank our respondents and remember our front-line health practitioners and advocates, particularly Nurse Tshui Sian, whose tireless GBP advocacy inspired our work.

Declaration of conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: All authors are advocates active in GBP; otherwise, we have no declarations of interest, financial or otherwise, to disclose.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project grew out of an advocacy intervention and received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

ORCID iDs

Aliza J. Hunt

Diana Setiyawati

Notes

Aliza J. Hunt, BA (Hons) Psych, (Indonesian Studies), is a PhD Candidate and Endeavour Scholar at the Centre for Mental Health Research at Australian National University (ANU). She was a visiting scholar at the University of Sydney’s History and Philosophy of Science department and at Gadjah Mada University’s Center for Public Mental Health at the time of manuscript submission. Aliza’s PhD is a critical analysis of psychological screening tools utilization in ageing populations in rural Indonesia. Her current projects are in cross-cultural diagnosis, health systems, and advocacy research. Her work is supported by the Grace Groom Memorial Scholarship, the Endeavour Awards, the Australian Postgraduate Award Scheme, the Australian Research Council Centre for Excellence in Ageing Research, the Indonesian Project (ANU), and various university and departmental grants.

Robert Ern-Yuan Guth, BA, MFA, PhD, has research interests in non-financial indirect reciprocal economies, user experience, social enterprise, vocational training, socially activated participatory art, and community development. Currently, he is advancing these interests by researching strategic directions for Australian not for profit Campbell Page. Dr. Guth’s involvement with Difable advocacy in Indonesian has largely been with YAKKUM in Jogjakarta. He has helped develop programs for vocational training and employment for marginal populations.

Diana Setiyawati, MHSc.Psy, PhD, is an Indonesian psychologist and currently the Director of the Centre for Public Mental Health (CPMH) in the Faculty of Psychology at Gadjah Mada University, Indonesia. She completed her PhD at the University of Melbourne, and with CPMH she is actively doing research, training, and advocacy to strengthen mental health systems in Indonesia. Dr. Setiyawati researches mental health system development. Her published works focus on strengthening mental health service provision in primary health care, school-based mental health, and family wellbeing.

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