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Developing Guideline on Patient and Family Education in Promoting Mental Health and Preventing Schizophrenia

Schizophrenia is a significantly disabling condition which affects more than 400,000 people in Indonesia. However, only 84.9% of people with schizophrenia in Indonesia seek medical help and only 48.9% of those adhere to medication. Another problem in Indonesia is pasung (shackling), which occurs in 31.5% of patients with schizophrenia. Education of patients and families plays a role in alleviating these problems. However, the are no guidelines on patient and family schizophrenia education in Indonesia. This review aims to present recommendations for developing guideline on patient and family schizophrenia education in Indonesia. We conducted this review in MEDLINE database and search engine. The inclusion criteria were articles in English or Indonesian within the last 20 years. The used keywords were schizophrenia, education, family, screening, adherence, shackling, primary healthcare, their synonyms, as well as their equivalent in the Indonesian language. Analysis of selected papers suggests that people attributed schizophrenia symptoms to myths and there are barriers in accessing information and healthcare services. Schizophrenia education should be implemented in primary healthcare facilities. The content of education should consist of schizophrenia facts, symptoms, treatments, support, recovery and relapse prevention, and prevention of pasung. More studies on the content and method of education are warranted.


INTRODUCTION
Schizophrenia is a group of severe mental disorders characterized by distortions of thinking and perception [1], [2]. Common symptoms of schizophrenia include delusions, hallucinations, disorganized thinking, and retreat from reality [1], [2]. According to Riset Kesehatan Dasar (Riskesdas) 2018, more than 400,000 people in Indonesia are affected by the disorder [3]. However, this number may be an underestimation as the global prevalence rate of schizophrenia reaches 0.75% [4]. Schizophrenia is significantly disabling [5]. It affects all major areas of the life of the patient [5]. Not only does schizophrenia affect the patient; the caregiver is also affected by the disorder. Caregiver of a schizophrenic patient experience high burden in the physical, emotional, and economic domains [6]. The consensus to treat schizophrenia is to combine antipsychotic medication and psychosocial interventions [7]. However, only 84.9% of people with schizophrenia in Indonesia seek medical help. Furthermore, only 48.9% of those who seek treatment adhere to medication [8]. Another problem faced by people with schizophrenia in Indonesia is pasung (shackling). As many as 31.5% of patients with schizophrenia are currently being shackled, and another 14% have experienced shackling in the past [8]. Education of patients and families plays a role in alleviating these problems [9], [10]. There are evidence that in low-and middle-income countries, community-based psychosocial interventions which include psychoeducation are feasible and have positive effects on the functional outcome of people with schizophrenia [7]. A systematic review and meta-analysis by Asher L, et al. compares previous studies on schizophrenia psychoeducational intervention on the areas of education duration and content, delivery method, type of personnel delivering the intervention, community involvements, and outcome [7]. However, the studies reviewed do not address the main problems of schizophrenia in Indonesia: identifying the disorder, treatment adherence, and preventing pasung. This review aims to present recommendations for developing guideline on patient and family schizophrenia education in Indonesia.
conducted for each of three domains: A: identifying schizophrenia, B: improving treatment adherence, and C: preventing pasung (shackling). Table 1 concludes the search strategy used in this study for the MEDLINE database.

RESULTS AND DISCUSSION
Results from the analysis of the data from the selected 14 articles signifies that the patient and family education of schizophrenia address the three domains of problems in schizophrenia: identifying the disorder, treatment adherence, and pasung.

Identifying schizophrenia
One qualitative study in Jordan found that people diagnosed with schizophrenia and their family had attributed symptoms of schizophrenia to sudden fright, possession by evil spirits, sorcery, punishment by God, head trauma, emotional trauma, bad genes and multiple personality disorder. There is also social stigma with the view that a person's weak faith or sins cause mental illness [11].
Patients and their family members may not have access to information clarifying these myths due to stigma [11].
Another study reported a lack of information about the nature and meaning of schizophrenia. This resulted in increased anxiety about schizophrenia and beliefs about having a 'split personality' as well as beliefs about posing a risk of harming others [12]. A study in India found that most caregivers were uncertain about the nature and cause of schizophrenia or attributed it to multiple causes simultaneously. The causes most frequently cited were stressful life events, evil spiriting or black magic, and the behavior of the patient's family members (such as arguments in the family, family members 'spoiling' the patient, shouting at the patient or not loving the patient enough) [13].

Treatment adherence
The education content to improve treatment adherence in schizophrenia includes schizophrenia facts, healthcare access, crisis prevention, the importance of treatment compliance, relapse prevention and management, physical health promotion, and dealing with schizophrenia problems including problem solving and coping skills [14][15][16][17][18][19]. Community involvements includes community mobilization to raise awareness on schizophrenia and community support [14]. A study describes the needs for primary caregiver to have good communication skills, stress management, and strategies for relaxation for the family [18]. Table 2 summarize the findings of the education delivery personnel and method.  19 2005 Not stated Two psychoeducation programs: structured and informal Personnel and tools for evaluating the education outcomes varies between each study. The measured outcomes for treatment adherence are appointment compliance, patient's clinical status and symptom severity, and relapse [14][15][16][17][18][19].
A systematic review and meta-analysis reviewed studies of community-based psychosocial intervention in low-and middle-income countries. The content and structure of the studies varied, but adherence management strategies are included in the education of schizophrenia [7].
Preventing pasung Three articles reporting physical restraint and confinement of schizophrenia patients in rural and urban area were analyzed. Based on the content analysis, the following items were identified (Table 3). Case-report / Urban

Advances in Health Sciences Research, volume 22
Beliefs that professional western medicine was ineffective and harmful, black magic beliefs, and "self-control" was more efficacious than medicine Lack of mental health literacy Empower and educate the public, strengthen community psychiatric services, reduce treatment gap One study in Ethiopia found that the primary reason of physical restraint and confinement in patient with schizophrenia is not due to lack of awareness, but due to lack of access to healthcare services [20]. However, the study conducted in Indonesia found that pasung was perceived as a practical solution and was an accepted norm in the community [10]. The shackled patient expressed the desire to see a doctor or to be admitted to a mental hospital, but families ignored the request due to various reasons [10].

DISCUSSION
Numerous studies have found that the problems of schizophrenia which includes barrier to identifying the disorder, be adherent to treatment, and pasung can be alleviated through patient and family education. While there are studies describing educational content to identify schizophrenia and to improve treatment adherence in lowand middle-income countries, we have not found any study exploring on educational content for patient and family to prevent pasung or physical restraint and confinement. However, it is important to note that the recurring reasons of restraining schizophrenia patients are stigma on the patient and the patient's aggressive behavior. Therefore, it is vital to include education on the facts of schizophrenia, the importance on adhering to treatment and follow-up, crisis management, and mechanism of referral to mental institutions or social services. There are various methods to deliver schizophrenia education. One method is individual psychoeducation.
Another one is group psychoeducation or multifamily psychoeducation program. However, there has not been a convincing evidence that showed that those given individual psychoeducation differed in terms of compliance and relapse compared with those given group psychoeducation [22]. A study in Chennai, India compared structured multifamily psychoeducation program with informal multifamily psychoeducation program. The structured psychoeducation program provided discussion about schizophrenia and a forum for information sharing and interaction between families, while the informal education program includes screening of a movie and interactive session added with periodic reinforcer sessions. The problem with the structured program was to ensure regular attendance. It is concluded that the informal multifamily education program may be more suitable in such setting [19]. A model of community engagement of schizophrenia is found in Ethiopia, where community-based rehabilitation (CBR) intervention was conducted [14]. The CBR intervention recruited CBR workers to give them competence to educate patient and family about schizophrenia [14]. This model can be implemented in Indonesia, where there are limited resources on mental health professionals. Mental health professionals can educate and train the already existing community health cadres (semi-voluntary healthcare workers unique to Indonesia) in primary care and community health centers. It is also important to note that family members can educate others in the community.

CONCLUSION
Education for the families of patients with schizophrenia should include measures to help identify schizophrenia early, improve adherence, and prevent shackling. Family members can also be empowered to educate others in the community. Educational intervention on schizophrenia should be implemented in primary health facilities and community health centers. Education material should include schizophrenia facts and myths, early symptoms of schizophrenia, the importance of adherence to therapy and follow-up, crisis management, and mechanism of referral to mental institutions or social services. More studies on the content and method of education are warranted.