Background
According to Article 1 of the Universal Declaration of Human Rights by the United Nations in 1948, all individuals are free and have equal rights and dignity. This protects the fundamental rights of individuals with physical or mental disabilities [
1]. Globally, more than 21 million people are affected by schizophrenia. This is a severe mental disorder characterized by distorted thinking, perceptions, emotions, language, sense of self and behavior [
2]. Unfortunately, schizophrenia is associated with stigma and leads to discrimination of the affected in the community. This can limit their access to healthcare, education, employment and quality of life [
2]. Stigma is a social problem in which the environment negatively labels one’s situation and condition including attitudes of rejection, denial and isolation. Poor knowledge of mental disorders, misconceptions, lack of motivation, poor access and unavailability of mental healthcare services contribute to the problem [
3‐
5].
More than 50% of people with schizophrenia do not receive appropriate mental healthcare [
2]. Nearly 90% people with untreated schizophrenia live in low and middle income countries [
2]. Unfortunately, the condition of people with mental disorders in Indonesia is unsatisfactory. Poor availability and access to basic mental health services have been highlighted [
6]. Family members often take regressive measures on patients with mental disorder due to stigma induced stress and sense of helplessness [
3‐
5]. One of the regressive measures is physical restraint and confinement of the affected person and is commonly referred to as
pasung in Indonesia [
5].
Pasung is common in developing countries, including Indonesia [
7]. In addition to the use of wood or leg chains to restrict movements,
pasung also involves confinement and neglect [
8]. Suicidal tendencies are common among untreated patients with schizophrenia under
pasung [
9,
10].
According to the Basic Health Research of Indonesia-2013 (
Riset Kesehatan Dasar known as
Riskesdas), 14.3% of Indonesian households have a patient with a mental disorder and a majority are in rural areas [
11]. The prevalence of mental disorders in West Java Province is 20%, the highest in Indonesia [
5]. In West Java, the prevalence of severe mental disorders is 1.6 per mile [
11]. Bogor is one of the regencies in West Java Province listing 1323 schizophrenia patients (2016–17) registered in the report of people with mental disorders [
12]. Seventy-five (5.6%) of the 1323 schizophrenia patients in Bogor Regency were under
pasung [
12]. Exploring family members’ and other key stakeholders’ (community members and healthcare providers) perceptions on
pasung would help to understand the ‘emic’ view of the issue.
Discussion
In the study setting, family members and community leaders perceived pasung as a necessary measure due to patients’ aggressive and destructive behaviors. Financial constraints and dissatisfaction with existing mental health services were the reasons for not seeking mental health care. Poor knowledge and misconceptions about schizophrenia were prevalent in the study setting.
Violation of human rights is commonly seen among patients with mental disorders [
2,
13]. Lack of economic productivity, loss of meaningful social roles and adult decision-making capacity are the reasons for ill treatment [
14]. Schizophrenia is now considered as a mental health problem of global priority [
15].
Pasung or chaining or shackling or physical restraint is one of such human rights violations.
Pasung appears to be very common among patients with schizophrenia, although seen among other mental disorders in Indonesia and other countries [
16‐
19]. In this study, patient’s aggressive and destructive behaviors were the main reason for instituting
pasung. Family members and community leaders perceived it as a pragmatic solution to protect patients, family members, and neighbors. However, they never openly discussed the stigma associated with schizophrenia as a reason for
pasung. Similar findings of physical restraints were reported from
Samosir and
Aceh, Indonesia [
16,
17,
20] and other countries [
19,
21]. Other reasons for
pasung or physical restraint were wandering by the patient (in this study) and to access treatment [
21]. Physical restraint was not restricted to domestic places but also reported in traditional or spiritual healing centers and mental hospitals [
22,
23]. Such social abandonment varies drastically across cultural geography. In countries like Indonesia, India, China, Ethiopia etc. [
16,
17,
19‐
21] people with mental disorders are physically restrained in domestic space whereas in the US they are more likely to be expelled to the street [
24].
In this study, financial constraint was the most prominent reason to discontinue treatment. In addition, dissatisfaction with existing healthcare services was prevalent and was attributed to relapse despite treatment. Study participants perceived that mental healthcare services in rural parts of Bogor Regency were not on par with urban mental healthcare facilities and many could not bear the travel costs. Indonesian national health insurance (
Jaminan Kesehatan Nasional, JKN) administered by the BPJS Social Insurance Administration Organization (
Badan Penyelenggara Jaminan Sosial, BPJS) covers mental health services to all the Indonesians. However, it does not cover the costs of transport and accommodation of the patients’ entourage. These hinder family members seeking timely treatment and availing benefits of JKN. Similar to the present study, a major concern was travel costs as no nearby mental healthcare facility are available in
Aceh, Indonesia [
16]. Impacted by the uptake of JKN where primary care clinics were conveniently located, access was often complicated by long waiting times and short opening hours. Lower levels of trust with primary care doctors was observed especially compared with hospital and specialist care. Also, a sense of anxiety existed that the current JKN regulation might limit their ability to access hospital services guaranteed in the past [
25]. Due to health system related factors, unaffordability and patient’s aggressive behavior, families were left with no choice but to institute
pasung.
In this study, caregivers attributed overeating by patients of schizophrenia as another reason for economic hardship. Existing literature suggests that 8–12% and 6–16% of patients with schizophrenia have night eating and binge eating disorders, respectively [
26‐
30]. Even this requires early detection and multidisciplinary management [
31].
Schizophrenia can be effectively treated by medicines and psychosocial support. Facilitation of assisted living, supported housing, and employment are effective management strategies for schizophrenia [
2]. The Global Movement for Mental Health (a network of individuals and organizations to improve services for people living with mental health problems) has highlighted the scaling up of mental health and development of policies and legislation to enhance access to mental health care and protection of human rights [
32]. Poor access and availability of quality mental health care force the family members to seek alternative treatments such as traditional or spiritual healers [
32].
Unfortunately, in this study,
pasung was a socially acceptable alternative measure for family members and society. On the contrary, isolation, neglect and lack of treatment further worsen schizophrenia and such patients are likely to have suicidal tendencies [
9,
10]. In addition, physical restraint itself can cause serious complications including aspiration, infection and even death [
33]. An urgent need exists to build basic mental health services system in the district. Related studies have shown that the practice of physical restraint could be eradicated by scaling up services to provide effective, accessible, and affordable mental healthcare for the needy [
19,
34‐
36]. In this study, prevailing poor knowledge and misconceptions of schizophrenia in the community were highlighted by healthcare officers. Studies from other countries have also reported poor to moderate levels of knowledge regarding schizophrenia in the community [
37,
38]. Health seeking behavior concerning mental health problems are determined by knowledge, misconceptions, and beliefs among family members and community leaders. In developing countries, family members take patients with mental illness to traditional or religious healers owing to poor knowledge and misconceptions [
39‐
41]. Similar findings have also been reported in developed countries like Singapore [
42]. In addition, people with low literacy are more likely to seek alternate treatment for mental health problems [
43,
44].
Health system related factors affected health seeking behaviors such as complicated referral system and violation of human rights within the mental health hospitals have also been reported from Indonesia [
6,
44]. Violations of human rights within the health system include poor quality care and treatment, isolated and restrained patients in hospital beds, aggressive and violent behavior by hospital staff etc. [
6]. Therefore, health system strengthening and enhancing community awareness should happen concurrently to avert human rights violations and delays in seeking mental healthcare services. In addition to improving accessibility, affordability, and quality of mental health services, integrating psychologists in the primary health care system is regarded as a key step towards scaling up mental health services [
45,
46]. This was initiated in
Sleman District,
Yogyakarta Province of Indonesia in 2004 [
47]. Increasing the adaptability of psychologists in the primary healthcare system and work culture differences between psychologists and healthcare providers were a few of the challenges of integrating [
47].
Pasung in Indonesia occurs because of lack of information, access, and mental health service facilities. Of the approximately 9000 existing
Puskesmas, only 1000
Puskesmas provide psychiatric services. In a total of 8 provinces in Indonesia, no mental hospital is found [
48]. In addition a limited number of professionals are available, i.e., psychiatrists, mental health nurses and psychologists. There are only 600 psychiatrists and 365 clinical psychologists in Indonesia [
49]. There exists a high treatment gap as indicated by high prevalence of mental disorders and inadequate mental health services. Mental health services should an integral part of primary health care. Appointing a psychologist at
Puskesmas is one of the strategies optimize mental health services at primary healthcare level [
49].
Pasung has been banned in Indonesia since 1977 [
32]. However, it remains widespread due to enduring stigma and poor mental healthcare infrastructure and community support services [
32]. Indonesia’s free from
pasung program aims to eradicate
pasung by 2019. Poor infrastructure, inadequate resources, and decentralized functions of the system are great hurdles to overcome in achieving this goal [
32]. Political commitment and considering mental health as a top priority issue is extremely needed. Owing to wide cultural and ethical diversity in Indonesia, a socio-cultural understanding of the
pasung practice is urgently needed. Moreover, social and cultural nuances in
pasung practices are very strong. In addition to prohibition, concentrated efforts to educate the public are needed. Simultaneously, community engagement, especially involving religious leaders, and inter-sectoral coordination should be considered to address
pasung and other mental health needs.
Authors’ contributions
NHL, RM, and TK were involved in conceptualizing and study design. NHL, TK, and SS searched literature, NHL and TK prepared the interview schedule and collected the data. NHL, SS, and RM analyzed the data and prepared the manuscript. TK reviewed the manuscript. All authors read and approved the final manuscript.