Table 3 Key findings

1

Alem (2000) [27]

Care providing in Ethiopia does not seem to be in accordance with UN Declaration of Human Rights. As per most low-middle income countries that are unable to fulfill the basic needs of their citizens, it appears that the mental health system in Ethiopia will not change in the foreseeable future

2

Anto and Colucci (2015) [28]

The story of Anto who was shackled several times since he was a young age. Anto achieved good grades whilst in school. However, he was very shy and lacked confidence and was bullied during his school years (fancy boy); this led him to become a person with low self-confidence. As a teenager he suffered from depression which became worse over time. The symptoms re-appeared when he was working at the paper factory and also while he was sitting at the university. The family decided to place him in pasung as they were afraid Anto would hurt himself or disturb the neighbors. After 3 times in pasung he was finally freed by the Free Pasung Program from the local psychiatric hospital and shared his story with others, using various forms of art to express his experiences, to help them to be free from pasung

3

Asher et al. (2017) [7]

Most of the participants with schizophrenia and their caregivers had personal experience of the practice of restraint (pasung). The main explanations given for restraint were to protect the individual or the community, and to facilitate transportation to health facilities. These reasons were underpinned by a lack of care options, and the consequent heavy family burden and a sense of powerlessness amongst caregivers. Whilst there was pervasive stigma towards people with schizophrenia, lack of awareness about mental illness was not a primary reason for restraint. All types of participants cited increasing access to treatment as the most effective way to reduce the incidence of restraint

4

Broch (2001) [6]

Stigma was central to how people in the village reacted to the mentally ill person (gila betul). Most of villagers believed that the person was possessed and dangerous, that mental illness was an evil spirit (Jin) that should be cured by spiritual or traditional healers. Some of them also thought that mental illness was a disease

5

Buanasari et al. (2018) [29]

Pasung use with parents with mental illness had a clear psychosocial impact on adolescents. Role changes occurred when the teenager became a breadwinner and caregiver of the parent. The experiences felt by adolescents were the changes in every aspect of their life in the form of roles, psychological and social conditions. Three themes:

1. Changed life due to having a mentally ill patient with pasung

2. Reciprocity as the reason of taking care of the parent

3. Positive meaning of life with having mentally ill parent with pasung

6

Daulima et al. (2019) [30]

The family breadwinner felt a lack of confidence due to role change after having their family member in pasung. In addition, the family had more problems with family finances as they now had to take care of the person. This meant someone needed to look after the person all the time and could not go to work. Another reason why the person became a burden was the high cost of medication and treatment. However, the neighbors and the environment were fully supportive for the breadwinner to continue working by giving support for casual work like domestic chores. This support increased their confidence and was a strong basis for them to continue their role as head of the family

7

Daulima (2018) [31]

The validity and reliability results showed that the content of this instrument is valid once improvements had been made to the statement item numbers 16 and 17. It was also shown to be reliable by the consistency of the responses with an alpha value of .729. That is, responses to the instrument are consistent and are reliable measures of the level of intention of the mentally ill patient’s family to use pasung

8

Dewi et al. (2019) [32]

The study demonstrated that family burden was significantly lower among those who received the combination of the two therapies (family psychoeducation and care decisions without pasung) compared to only family psychoeducation (p < .05). Those therapies decreased the family burden into the low category

9

Eka and Daulima (2019) [33]

Ten studies were found. There were 3 main factors related to pasung:

1. Factors that originated from the person such as aggressive, wandering, homicide. These behaviors were triggered by the medication drop out due to financial problems and health service inaccessibility. Proposed solutions were educating the person about medication compliance

2. Factors that originated from the family including financial burnout, emotional instability, helplessness, lack of knowledge, dissatisfaction with health services, and the fear that the person would do harm to others or self-harm. The family decided to use pasung as a treatment after a family discussion, and pressure from the community; hence, perceived community stigma was a prominent factor in their decision-making. Proposed solutions were family education about medication compliance to overcome stigma about its use

3. Factors that originated from the community including stigma and discrimination, which caused increased family burden. This meant families often decided to use pasung instead of mental health services. The community also commonly played the main role in deciding pasung. Proposed solutions were community empowerment; in particular, empowerment of community leaders with influence in decision-making (though a limited description of the empowerment process was provided)

10

Firdaus (2016) [34]

1. There are local regulations in Jogjakarta, Indonesia to protect people with schizophrenia and to reduce the practice of pasung in the form of the gubernatorial regulation number 81/2014 aim to improve mental health knowledge

2. Community-based services have been used in several mental health services with using the community volunteer to identify people with schizophrenia in its territory

3. There are some obstacle in fulfilling the right for a mentally ill person as mental health is not the main priority proved by a small budget and cases where many mentally ill wanderings on the street and neglected at a nursing home

11

Guan et al. (2015) [2]

96% of patients were diagnosed with schizophrenia. Prior to unlocking, their total time in pasung ranged from two weeks to 28 years, with 32% having been locked multiple times. The number of persons regularly taking medicines increased from one person at the time of unlocking to 74% in 2009 and 76% in 2012. Pre-post tests showed sustained improvement in patient social functioning and significant reductions in family burden. Over 92% of patients remained free of restraints in 2012

12

Hall (2019) [35]

People with mental illness in Timor-Leste were found to face widespread, multi-faceted sociocultural, economic and political exclusion. They were stigmatized as a consequence of beliefs that they were dangerous and lacked capacity, and experienced instances of bullying, physical and sexual violence, and confinement. Several barriers to formal employment, educational, social protection and legal systems were identified. Experiences of social inclusion for people with mental illness were also described at family and community levels. People with mental illness were included through family and community structures that promoted unity and acceptance. They also had opportunities to participate in activities surrounding family life and livelihoods that contributed to intergenerational well-being. Some people with mental illness benefited from disability-inclusive programming and policies, including the disability pension, training programs and peer support

13

Hartini (2018) [36]

The result shows that better knowledge about mental health was associated with lower public stigma toward people with mental disorder. Significant differences in stigma toward people with mental illness were also found across groups according to age, sex, experience of contact, history of mental disorder, attitude toward pasung, marital status, and income level. Age was negatively correlated with stigma; people were more tolerant as they got older. Married individuals were more tolerant. A history of mental illness in the family equated to greater tolerance. No marked differences in level of stigma were found across groups according to educational level

14

Helena (2018) [37]

Pasung has a physical and psychosocial impact on people with mental disorders in adapting to society. Four themes: (a) Withdrawal from others as an initial manifestation of release from pasung; (b) Biopsychosocial changes after pasung that act as an impediment to performing a social function; (c) Improved social function through the optimization of support systems; and (d) Satisfaction with life as a result of social adaptation

15

Idaiani and Raflizar (2015) [38]

The most profound factor contributed to pasung practice was low social-economic status. The low socio-economic families have 2–3 times greater risk than the middle and high oncome families. In contrast, a geographic area with inaccessibility to health facilities and high mental health literacy have no significant relationship with the pasung

16

Irmansyah et al. (2009) [8]

The focus of the Indonesian Constitution on rights pre-dated the Universal Declaration. Indonesia has ratified relevant international covenants and domestic law provides an adequate legal framework for human rights protections. However, human rights abuses persist, are widespread, and go essentially unremarked and unchallenged. The National Human Rights Commission has only recently become engaged in the issue of protection of the rights of persons with mental illness

17

Jones (2009) [39]

Services created by non-governmental organizations in these contexts are a drop in the ocean compared with what is needed. In all areas mentioned, most people with severe mental disorders remain unrecognized, untreated, and unable to access services. Non-government agencies cannot be a substitute for effective government strategy and action. But they might sometimes be a stimulus; for example, emergency mental health services developed by the International Medical Corps and other national and international agencies have sometimes become seeds for effective longer-term models of care in a number of countries

18

Katuuk (2019) [9]

Three themes were expressed from the family who used pasung for their family member:

1. The helpless feeling of family in adapting to the mental state of a person in pasung, as the family were unable to provide continuous medication. The family must share the funding for the treatment and other family members’ need, like school and food; 2. Ensuring security was the main reason to justify returning the person to pasung and to cover up the guilty feelings for doing so; and 3. As a substitution for re-pasung and feeling guilty, family fulfilled the person’s the basic needs and reduced the length of time of pasung, such as releasing the person temporarily, but with close supervision by the family

19

Laila (2018) [40]

Family members and society in general perceived that pasung is necessary for security reasons due to the person’s aggressive behavior (e.g. physical violence towards family members, damaging neighbors’ property and stealing food). Family often did not respond to the patient’s request to be released from pasung. They felt insecure and helpless when the person was not in pasung and wandered outside the house. Family members had financial constraints that stopped them from seeking mental health care, and they were also dissatisfied with the available services. Health care workers underlined the poor knowledge and misconceptions of schizophrenia in the community

20

Laila (2019) [41]

The person’s aggressive or violent behavior (AdjOR: 4.49, 95%CI: 2.52–8.0), unemployment (AdjOR: 2.74, 95%CI: 1.09–6.9) and informal employment (AdjOR: 2.5, 95%CI: 1. 1–5.84) in the family, and negative attitude of the family towards the person (AdjOR: 2.52, 95%CI: 1.43–4.43) were associated with pasung. The person’s aggressive or violent behavior (PAR = 44.3%) and unemployment in the family (PAR = 49.3%) were the predominant factors for the use of pasung by the family

21

Maramis (2011) [18]

In most countries in Southeast Asia, mental health spending is no more than 2% of the health budget, with 80–90% going to mental hospitals. There are massive workforce deficiencies; few consumer, carer, or other civil-society organizations with a focus on mental health advocacy; inadequate protection of the rights of people with mental illness; few efforts to promote mental health; little in the way of rehabilitation services or efforts to promote social and economic inclusion; and treatment services are concentrated in urban areas and often of poor quality, inaccessible, and unaffordable

22

Marthoenis (2016) [42]

Mental health services in Aceh have been improved compared to their condition before the Tsunami, with development programs focused on procurement of policy, improvement of human resources, and enhancing service delivery. The case of Aceh is a unique example where conflict and disaster, and the need for security, serve as the catalysts toward the development of a mental healthcare system. Despite these improvements, some issues such as stigma, access to care and political fluctuations remain challenging

23

Miller (2012) [43]

In Aceh, Provincial health authorities are creating a community mental health program that shifts much of the work traditionally done by psychiatrists to general practitioners, nurses and village volunteers. In rural areas, where resources are limited, training and delivery of care by less specialized health workers shows promise as an effective way to manage demand for support by rural communities where people with mental health conditions are under-served and at greater risk of experiencing pasung

24

Minas and Diatri (2008) [3]

Fifteen cases of pasung, approximately even numbers of males and females and almost all (n = 13) with a diagnosis of schizophrenia were identified; 9 had previously received psychiatric treatment. Duration of restraint ranged from two to 21 years. Travel was the major cost of treatment component cited as unaffordable (nearest available treatment was 6 h away by boat and then road). The most common form of pasung was in a small room or hut. Reasons given for pasung: violence, coming to harm by running away or wandering off, concern about suicide, and unavailability of a caregiver. Affordable and equitable access to basic mental health services seen as the only effective and sustainable solution

25

Molodynski (2017) [20]

Coercion remains a dominant theme in mental healthcare and a source of major concern in many countries. While the presence of coercion is ubiquitous internationally, it varies significantly in nature and degree in different countries and is influenced by a variety of factors. Recent reports have raised concerns about physical restraint and the increasing use of legislation in high income countries. At the same time, a recent Human Rights Watch report on pasung (the practice of tying or restricting movement more generally) in Indonesia has served to highlight the plight of many in middle- and lower-income countries who are subject to degrading and dehumanizing ‘treatment’

26

Ndetei and Mbwayo (2010) [14]

Lack of knowledge of the cause of mental illness or the fact that such conditions can be treated may lead to mistreatment of patients with mental illness. It is possible that chaining is practiced more widely, and in more countries, than is realized. There is therefore a need for an audit to determine just how common this practice is—a practice which has no place in contemporary African psychiatry

27

Nurjannah (2015) [65]

‘Connecting care’ as the core category to describe a model of care that involves health professionals and non-health professionals, such as family members. Four main factors influence care-providers’ decision-making: competence, willingness, available resources and compliance with institutional policy. Health professionals are influenced most strongly by institutional policy when deciding whether to accept or shift responsibility to provide care. Non-health professionals base their decisions largely on personal circumstances. Jointly made decisions (between the various stakeholders) can be matched or unmatched. Unmatched decisions can result in forced provision of care, increasing risks of human rights violations

28

Patel and Bhui (2018) [44]

A rights-based approach must enforce well-established international human rights conventions, and scale-up comprehensive community services around the needs and preferences of people affected by mental disorders

29

Patel et al. (2009) [45]

The plan proposed is based on the socio-cultural, epidemiological and health system contexts of a specific location in one country. Although ‘one size does not fit all’ in health-system interventions, such a plan may serve as a blueprint for other contexts, following appropriate modification and adaptation to ensure its feasibility, acceptability and relevance

30

Patel Saxena (2018) [46]

Three measures are proposed: first, balancing the focus on treatment, rehabilitation, care, and recovery with an equal emphasis on the promotion of mental health and the prevention of mental disorder, particularly interventions early in the life course; second, adopting a staging approach to the identification and diagnosis of mental disorder, recognizing the potential benefits of intervention at each stage; and third, embracing diverse global experiences of mental health and disorder, to tailor the range of inter-ventions more appropriately and promote mutual learning. Key terms for defining the scope of mental health are also proposed

31

Puteh (2011) [47]

Fifty-nine former pasung patients were examined. The majority (88.1%) of the patients were male, aged 18 to 68 years. The duration of pasung varied from a few days to 20 years, with a mean duration of 4.0 years. The reasons for applying pasung are many, with concerns about dangerousness being most common. The great majority (89.8%) had a diagnosis of schizophrenia

32

Rahman (2016) [48]

The nurses had been carrying out their role as executors of nursing care policy, as the direct nursing as caregivers, and were providing direct nursing care to people who had experienced pasung and their families, as well as continuing therapy for ex-pasung sufferers, and as educators, collaborator and also educating the family

The nurses faced a difficult challenge in implementing free pasung program, including:

1. Family and community rejection

2. An emotional expression such as grieving, frustration, give up

3. The absence of a caregiver

4. Illiteracy on mental health

5. Unavailability of an anti-psychotic drug

6. No partnership and multisectoral coordination

7. Multiple tasks

33

Rasmawati (2018) [49]

The pasung patient potentially lost the support from families (in particular their spouse) due to being unable to fulfil their basic needs, their aggressive behavior, and being judged as unable to recover like a ‘normal’ person. Divorce has an additional impact on the people in pasung. Grieving is the first response to separation from children and spouse. Most of the respondents were left by their spouse due to their mental health problem. The problem became worse when the person could not find a new partner due to their mental illness and financial barriers

34

Read (2009) [4]

Chaining and beating of the mentally ill was found to be commonplace in homes and treatment centers in the communities studied, as well as with-holding of food (‘fasting’). However, responses to mental illness were embedded within spiritual and moral perspectives and such treatment provoked little sanction at the local level. Families struggled to provide care for severely mentally ill relatives with very little support from formal health services. Psychiatric services were difficult to access, particularly in rural communities, and also seen to have limitations in their effectiveness. Traditional and faith healers remained highly popular despite the routine maltreatment of the mentally ill in their facilities. Caution is suggested when taking a moral perspective on rights and responsibilities in the context of pasung use in this context, as this may be used to justify the maltreatment of people with mental illness, as this research has suggested

35

Reknoningsih (2014) [50]

Most caregivers were poorly educated (primary level and not educated). There were five themes:

1. The family felt physically exhausted and emotional distress caring the pasung person.

2. The family’s emotional burdens and being physically exhausted were reasons given for re-restraining their family member.

3. Further family difficulties arose due to the burden of pasung management, and the person’s aggressive behaviour. As a result, re-pasung was the main option for the family.

4. The families have internal and external support for caring for the person - Either material support like money and staple food or external support like free insurance and free medication.

5. However, families get more spiritual understanding as part of caring for the person whilst in pasung in the form of experience of spirituality, being closer to God and recognition

36

Riany (2016) [51]

The interviews revealed five related themes about autism: 1. Understanding about autism; 2. Causes of autism (traditional cultural beliefs about pregnancy, belief in karma and God’s plan); 3. Beliefs about how best to care for a child with autism (traditional and medical treatments, education, good parenting; 4. Reactions to having a child with autism (self-blame, shame, expectations of stigma); 5. Parenting a child with autism (impact of shame, parenting practices and use of coercion. Overall, despite many understanding the underlying medical causes of autism, their traditional cultural beliefs led many to stigmatise children with autism and their family, creating increased isolation in the community

37

Sa’ad and Bokharey (2001) [52]

A total of 100 patients in pasung at shrines were treated, with the age range from under 9 to those above 70 years, with most aged between 10-29 years. Most of the patients had a mental health condition such as schizophrenia, depression and epilepsy

38

Saribu and Napitulu (2009) [13]

The Indonesian legal system/national laws which regulate the right of persons with the mental disorder include:

1. Law No. 23 of 1992 concerning health

2. Law No. 39 of 1999 concerning human rights

3. Law No. 4 of 1997 concerning a person with disabilities

4. Pela code of Indonesia (is pasung could be categorized as a delict (violation of law)?)

5. Indonesian criminal procedure code (pasung could be classified as a criminal deed; however, up until now, no perpetrators of pasung have been punished by the courts

39

Stratford (2014) [53]

Ministry of Social Affairs (MoSA) has been able to utilize the extensive experience and skills of its Australian partners to enhance implementation of the plan. The success of the collaboration of Mind and Australia Asia Mental Health (AAMH) program with MoSA has been achieved through a rigorous concern to ensure that concepts of psychosocial rehabilitation and approaches such as the recovery approach which originated in developed western nations are relevant and applicable to the Indonesian context

40

Suharto (2014) [54]

1. The age of people in pasung is between 13 and 70 years, dominated by the male (3:1), with the length of illness from 2 to 35 years, the incidence of relapse from 1 to 7 times during the illness, and the average duration of pasung is 8.5 months.

2. The majority of families resorted to pasung as the preferred treatment due to the high cost for the medications. This was as direct costs to buy medications and pay the mental health staff and indirect costs for transportation (most mental health services are located in the central city which sometimes took a day’s journey to go back and forth).

3. Most caregivers were parents (mostly their mother), age 50 or more, low educated (primary level and uneducated), working as farmer/gardener/Warong. There is a significant relationship between education level and age of family with the social function of the family.

4. Pasung practice is not solely negligence of family to give care to their family member but also the failure of the government to provide mental health services at the primary level

41

Suhron (2017) [55]

The mean score before the family psychoeducation intervention was 21.6; and after family psychoeducation, the mean increased to 29.1. The Wilcoxon test showed ρ value = 0,000 < α = .05 which meant there were differences in the ability of families to care for people with mental disorders before and after family psychoeducation

42

Suhron et al. (2018) [56]

The caregivers were mostly female, average age 27, a third of caregivers were not working, more than three quarters (83%) gained primary education or lower, more than three quarters (80%) lived in a remote area and nearly a half of caregivers were parents. Cultural values effect the family’s role which indirectly affects the ability of the family in caring for the person

43

Suryani et al. (2011) [5]

The development of a community-based, culturally sensitive and respectful mental health model can contribute to positive mental health outcomes. The traditional medical, hospital-based, psychiatric model currently practiced in Indonesia, and arguably in other countries, possesses an inherent inability to provide a holistic and equitable service to this population and in this cultural context. after 19 months of holistic treatment, none of the patients were confined in pasung, and only 2 required further intensive treatment. Community education forums and workshops to educate them about mental health issues in a meaningful and respectful language that was a aligned with their culture and customs was effective (500 per month attendance). Mutual support groups for families and community members were also established

44

Tanaka (2018) [57]

The findings highlight the culturally and socio-economically specific contexts, consequences, and impact

modifiers of experiences of stigma. Participants emphasized that PMHP face stigma because of the cultural traits such as the perception of mental health problem as a disease of the family and the tendency to be overly optimistic about the severity of the mental health problem and its impact on their life. Further, stigma was experienced under conditions where mental health care was not readily available and people in the local community could not resolve the PMHP’s mental health crisis. Stigma experiences reduced social networks and opportunities for PMHP, threatened the economic survival of their entire family, and exacerbated their mental health problems. An individual’s reaction to negative experiences can be fatalistic in nature (e.g. believing in it is God’s will). This fatalism can help PMHP to remain hopeful. In addition, traditional communal unity alleviated some of the social exclusion associated with stigma

45

Tay et al. (2017) [58]

The first case report examining the prolonged use of pasung in a developed urban setting. Illness factors, family dynamics, stigma, lack of mental health literacy and cultural roles contributed to her chaining. Despite Singapore’s excellent infrastructure, highly educated public, accessible professional psychiatric treatment and overall modernism, there remains a minority of psychiatric patients who are beyond the reach of the treating team

46

Ulya (2019) [59]

Pasung and mental disorder produce a vicious circle which is difficult to break, particularly when the perpetrator is the family. On the one hand, family is the key to care for the person but on the other hand the family have limited resources and sometimes are exhausted by their caring responsibilities. Pasung is more common in rural locations and among lower socio-economic groupings. Stigma towards mental illness is prominent. When adopting an ethical viewpoint, pasung must not be used as a substitution for treatment as it violates human dignity and human rights. The basic moral principles in bioethics show that ill-treatment and coercion fail to adhere to four basic rules (i.e. respect for autonomy, beneficence, non-maleficence, and justice). There is no justification for the view that unregulated coercion is a form of treatment for mental disorders. Any attempt to justify such coercion violates principles of international and national health law. More integrated community programs are needed to address stigma and support families

47

Vijayalakshmi et al. (2012) [60]

Gender differences were clearly evident. Although, subjects enjoyed similar satisfactory levels of fulfillment in the physical dimension of human rights needs, which included food, housing, and clothing, men expressed lower satisfaction than women with perceived human rights needs fulfillment in the emotional dimension. This included fear of family members (# 2 = 9.419,p G .024) and being called derogatory names (# = 8.661, p G .034). Women expressed lower satisfaction than men with perceived human rights needs fulfillment in social and ethical dimensions. This included freedom to leave the home (# 2 = 11.277,p G .010), and sexual abuse by family members (# 2 = 9.491,p G .019). Men felt more discriminated against than women due to perceptions of mental illness in the community domain (# 2 = 10.197,p G .037)

48

Wirya (2017) [12]

Four areas of thinking are proposed:

1. The discourse of madness in this article is defined as a set of statements that has institutional strength, which means a set of statements that have a profound influence on the way we act and think individually. The act is to do pasung

2. Pasung is a part of madness discourse formed by the power, knowledge and social structure of community resulting pasung as a rational act to control someone who they called as crazy

3. This research showed that the discourse of madness that promotes the truth regime of rationalism and produces

pasung as a part to control of the those deemed as ‘crazy’ is a crime that must be dealt with through a replacement discourse. Human agents can build a replacement discourse which uses chaos theory and existentialist psychological thought

4. Even though psychiatric therapy tried to eliminate and replace this current discourse, psychiatry itself assumes the insane as an object that needs to be controlled

49

Wulandari et al. (2019) [62]

Several themes were identified, for example:

1. The reluctance to be re-pasung. The patient refuses to be subjected to pasung and stating that pasung was a horrible experience

2. The demand to have interaction with other people. The patient wished to interact freely and making friends

3. The sense of being ignored due to stigma. The patient felt being exiled, sad and trauma because of stigma

50

Yusuf and Tristiana (2018) [10]

1. Most of the caregivers were parents, followed by spouse and other relatives. 8 from 9 respondents were poorly educated (primary level) and work as a casual worker (farmer, gardener) with some were unemployed

2. Most patients had been subjected to pasung from 1 to 24 years.

3. The intention of the family using pasung was to control patient aggressive behaviour (to others, themselves and neighbourhood), for curing, avoid wandering and because they could not continue to care for the patient. The family also had no other options as they had to work to feed their family and the person in pasung. In addition, they had limited financial resources, and endured high cost of treatment

4. The decision to use pasung came from families, neighbours and the communities. The communities and the family work together to build the shelter for pasung like creating the hut, making a window from iron

5. The impacts of pasung were atrophy, contracture, and psychological aspects (depressed, isolated, trauma, hate)