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What's interesting about mental health in Indonesia? Find out in Winter Course 2020!

Discussion in 'Medical Students Cafe' started by afkar, Dec 10, 2019.

  1. afkar

    afkar Well-Known Member

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    Story Vignette (fictional):

    Jono was an adult who had a healthy and strong physique. However, he was considered different by people around him. Jono could hear voices that other people could not hear since he was 25. His family believed that he was possessed and was brought to several faith healers and traditional practitioner. As his symptom didn't improve, his family brought him to mental hospital after several months, and he was diagnosed with schizophrenia. After a month, he was allowed to go home. The treatment continued, but since his family was afraid of him, they provided him with everything and he was allowed to not work at all. After several years, his mother and father grew old and died.

    He was then passed from one relatives to another, each one reluctant to take him in. He couldn't get any inheritance from his parents, as in his country, patient with psychotic symptoms had limited legal rights and required representative guardian in court.

    After moving several times, he settled in his uncle's house. His uncle lived in mountainous village, where there was limited understanding about mental health. In this area, people believed that mental health was caused by curse, failure to learn black magic, or lack of faith. They believed that suicide was caused by flame spirit wandering above someone's house, and they often praised kindergarteners who played smartphone games all day long for being smart with technology.

    Fearing the neighbours' gossip, Jono's uncle decided to put Jono in facilities for mental health patients. However, since there is no facilities providing long term stay, his uncle decided that whenever a hospital sent Jono home, he would then be sent to yet another hospital, or any other facilities for mental illness. Jono had to move from one facilities to another without having definite home. However, after years, he got tired and escaped. He lived as a homeless person and was often seen wandering around while mumbling incomprehensibly.

    However, there had been rumors about child kidnapping gang which disguised their member as mentally ill individual. As Jono trespassed to someone's yard, people around began shouting and accused him of being kidnapper. Jono suffered injuries from mass beating. He was saved by the cops and got sent to hospital with head concussion. Thankfully, he survived, and his uncle was notified. However, fearing further persecution, Jono was no longer allowed to leave his room. He didn't work and didn't do many leisure activity. He just smoked, slept, watch TV, and got back to sleep.

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    The above story is fictional, any similarity to real person is unintended. However, it reflects many problems in managing mental health patient in Indonesia. The topic of mental health in Indonesia is an intriguing topic that is pretty much unknown to international community. Many people only know about brief condition based on sensational pictures from popular online media depicting mental health patients being locked up or chained in traditional mental health facility, a condition popularly known as "pasung." Those might be part of the actual image of the mental health condition in Indonesia. However, those were merely part of a giant picture, and were not reliable measure to understand the complexity of the problem.

    Limited formal publication

    Indonesia is a country with limited formal publication. A quick search from pubmed with keyword "Psychiatry" and "Indonesia" this November resulted in only 341 publications, which is the number of all-time peer-reviewed publication. Even the largest health research in Indonesia, Riskesdas (Riset Kesehatan Dasar / Basic Health Research) remains invisible to well-known indexing service, and most part of the data were not peer-reviewed by reputable journal. Mental health data from Riskesdas 2013 about severe mental health problem were based on house-to-house survey instead of actual medical records, while Riskesdas 2018 updated the data with better instrument and self-report questionnaire. Those two were reported in Indonesian language, with no translation available. Only 15 international publications used Riskesdas data, and none of them is about mental health (based on pubmed search with keyword "Riskesdas" on November 2019). It is no wonder that the limited data cause people to take a glimpse at popular media instead of formal reports.

    There had been multiple psychiatric conferences being held in Indonesia. For example, in recent years, there had been conferences by Asian Society for Child and Adolescent Psychiatry and Allied Professions (ASCAPAP), Asian College of Neuropsychopharmacology (AsCNP), and ASEAN Federation for Psychiatry and Mental Health (AFPMH). However, community problems related to mental health, although occassionally discussed, is rarely an urgent agenda of the conferences. As the conferences are mostly for specialists, general public and volunteers rarely had the chance to understand about the situation in Indonesia. An example of the International course for lower education is an upcoming Winter Course 2020 (http://ugm.id/WinterCourse2020) by Universitas Gadjah Mada. It is aimed at international medical students. Although it's not for the general public, it's expected that aiming for younger audience would improve the understanding of complex problems in Indonesia. This article is aimed to be a brief introduction about Indonesia and an introductory article for upcoming Winter Course. However, it's also expected to improve mental health service in Indonesia in the next decades. This article is not aimed to justify "pasung" or discrimination of people with mental illness, but it is aimed to explain how such issues are actually interconnected with family suffering and unique social condition.

    Mental illness is often considered problem of soul or spirituality

    In Indonesia, Mental Health is influenced by biological, psychological, social, and spiritual factors. The word "mental" is translated as "Jiwa" in Indonesia, and although it is continually being used, the word "Jiwa" is strongly linked to religious and traditional beliefs. "Jiwa" was derived from the Sanskrit word "Jiva" (जीव) which means living, living creatures, or living soul. Although it has similar meaning to Greek word "psyche", the meaning of "Jiwa" in Indonesia is still strongly linked to religious or traditional definition of soul or spirits. Therefore, when we are talking about the illness of "Jiwa" (mental illness), people would still consider it a curse ("santet") or possession by djinn. It is of no surprise that most patients will be brought first to traditional witchdoctor ("dukun"), alternative medicine, or religious scholars (e.g. Islamic priest ("Kyai") or other religion priests).

    However, recent review by Good et al. (2019) mentioned that the patient brought to traditional practice did not wait long before the family got disappointed and attempted to try another intervention. Nevertheless, such traditional belief is still the source of stigma. People with mental illness are often considered as "people with poor faith," "people lacking thankfulness to god," or even "people failing to learn black magic." An example of such belief is the belief about "Pulung gantung" in Gunung Kidul. People believe that flame spirit is capable of causing people to commit suicide. When you see mysterious flying flame above someone's house, the next day, someone will commit suicide. These cultural and religious belief are especially harmful for the patients who have suicide risk. Family and patient with suicidal attempt, or even completed suicide, are often the target of shaming. This would lead some families to make up the story about viewing a flying flame. They would prefer to be the victim of evil spirit rather than unfaithful believer, and this phenomena would further strengthen the cultural belief.

    Heavy burden on the family

    Treatment for someone with mental health problem heavily relies on family involvement. Although there had been articles mentioning that mental health outcome in developing countries might be better than developed countries (McKenzie, 2004), the struggle toward improvement is heavily taxing for the family member. First of all, Indonesia has almost no halfway house. Patient who was severely ill will be brought to psychiatric ward of general hospital or psychiatric hospital and would stay there for at most a month. This practice was based on researches mentioning that hospital stay for acute psychiatric patients are on average about 2 weeks. Thus, insurance system in Indonesia (BPJS) only provides coverage for at most a month stay for most hospitals, ignoring the possibility that some patients may require longer stay or that many patients require halfway house after discharge. Patient would then return to the family after acute phase has been managed, still with multiple symptoms and memory of forced inhospitalization. In such condition, many patients end up having conflicts with family member, getting agitated, and relapsing back to acute phase.

    Such condition often make the family return the patient to hospital, and then back home after a month, and then relapsing again. Although this doesn't happen to all patients, these unlucky families eventually got tired and attempt to find facilities for mental health patients that provide long term stay. Such facilities are called "panti." These "panti" do not function as a halfway house, and instead, are facilities that prevent patient to go out of the facility. Some of the "panti" are legally cooperating with psychiatrist to provide medication and training for work, while the other panti are completely traditional healing facilities. Some panti even use chain or animal cage to lock up the agitated patients. Panti made by the government (which operates using government subsidy) often only accept patient who no longer has family, and the other panti are not free. Families often have to struggle to find money to send patient to the facilities, and when the patient comes home, they will relapse again and get sent to psychiatry hospital. Such a cycle of hospital-home-panti-home-hospital-home-panti is not such an unusual scheme in Indonesia.
    In a different setting, in which patient can remain stable in outpatient setting, the struggle has a different form. Indonesia does not provide incentive or living support for most people with disability, and it is hard for mental health patient to find a proper job. Therefore, it becomes the obligation for the family to provide living cost for the patient with severe mental illness. When the patient needs to go to the hospital, the family needs to prepare money for transportation and spend a day off work to take the patient to the hospital. Many of these patients are not completely stable. Some would request large amount of cigarettes, refuse to work, and occassionally become aggressive when the family asks them to change. These conditions are not severe enough to consider it acute relapse, but it's very hard for the family, who are untrained civilians. They also need to monitor the patient's compliance in taking medication, an obligation that often leads to yet another conflict. The patient has no disability priviledge, may run away from home while affected by delusion, and has no specific identification that lets people know that they are having disabilities.

    Low mental health literacy

    Indonesia has low health literacy level. Any rumors or hoax can easily spread and even incite mass aggression. People with mental illness are often the target of baseless rumor, and even unreasonable violence. In recent years, there had been rumors about child kidnapper gang that disguises their members as mentally ill patient to sell the organs of kidnapped children. However strange this sounds, the rumor leads to mass violence toward mental health patients who are found wandering on the streets. It led to beatings, injuries, and even death. The rumor eventually died down, but the lives that were lost would not return.

    Another rumor stated that the mentally ill patients were especially trained into assassin to kill religious scholars accross Indonesia. Although it didn't lead to death, it caused public shaming and unnecessary questioning by policemen. People would parade to bring the "suspect" to the police officer, shared it on facebook and have the reporters create the news in popular media.

    Burnout of the family and "pasung"

    Family of mentally ill patient needs to pay for daily necessities of mental health patient, make sure that the patient doesn't run out of home or having fights with the neighbours, take the patient to the hospital and monitor the compliance, deal with frequent verbal aggressiveness, repeatedly push the patient to have constructive activities, and deal with stigma and complaints from the neighbours. There is only limited support from the government in the form of free health insurance and sometimes, occupational therapy from district health center. With the heavily family-centered care, it is not unthinkable that some family would choose to lock up family member with mental illness at home. Chain and cages are unacceptable, but sometimes, locking the door can be a form of protection from outside trouble.

    Legal aspect

    The regulation about legal rights and other rights of patient with mental illness might not yet be ideal, as many regulations consider mental health patients as someone requiring legal guardian instead of someone with his own rights. However, with the situation in which family becomes the vital role in the patient's life, we may need to consider the welfare of both the patients and his/her caregivers. It might not be ideal if the patient has full rights to refuse any treatment and leave whenever he wants while the social welfare and safety are largely the responsibility of the family.

    Mental health care in Indonesia has so many colors blended together. However, we are also changing, hopefully for the better. There are old issues that still require attention, but there are also new ones like excessive social media usage and gaming disorder. Many challenges are still ahead, but we can hope that by opening ourselves more to the outside world, we're beginning the first step toward the optimal solution.

    Afkar Aulia, MD, MSc


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    References:

    Badan Penelitian dan Pengembangan Kesehatan. (2013). Riset Kesehatan Dasar (RISKESDAS) 2013. Laporan Nasional 2013.
    Good, B., Marchira, C., Subandi, M., Mediola, F., Tyas, T., & Good, M. (2019). Early psychosis in Indonesia: reflections on illness and treatment. International Review of Psychiatry.
    Badan Penelitian dan Pengembangan Kesehatan.(2019). Laporan Nasional RISKESDAS 2018. Badan Penelitian dan Pengembangan Kesehatan Riset.
    McKenzie K, Patel V, Araya R. (2004) Learning from low income countries: mental
    health. BMJ. 329(7475):1138–40.
    Thee, M. (2019). ‘You’re not religious enough’: pain of Indonesia’s mentally ill and the online group bringing sufferers and carers together. Retrieved from South China Morning Post: https://www.scmp.com/lifestyle/heal...religious-enough-pain-indonesias-mentally-ill
    Wirya, A. (2018). When hoaxes target the mentally ill. Retrieved from The Jakarta Post: https://www.thejakartapost.com/news/2018/03/10/when-hoaxes-target-mentally-ill.html

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