Exploring the potential of civic engagement to strengthen mental health systems in Indonesia.

精神病在全球25大残疾原因中排名第11位，对个人、家庭和经济造成严重的个人和经济后果，包括预期寿命缩短、社会排斥、生活质量差和照顾者健康状况差。在印度尼西亚，精神卫生系统正在努力满足精神病患者的需求;超过90%的精神病患者没有得到任何治疗，印度尼西亚因精神分裂症而失去残疾或过早死亡的寿命年数比世界上任何其他国家都高。这一点，再加上健康素养低（对心理健康的知识贫乏）和普通人群中的高度耻辱感，导致成千上万的人被非法锁在家中（“pasung”）。公民参与是世卫组织全球卫生战略的核心部分，有助于应对这些挑战。公民参与的好处已在世界各地得到证明，包括改善获得护理的机会和护理质量，减少耻辱感，为服务使用者带来更好的结果，以及降低成本。在卫生系统方面，公民参与是一种“自下而上”的方法，服务使用者及其家庭积极参与卫生服务的设计和提供。它承认“生活经验”是一种重要和有价值的专业知识形式，因此通过在决策中使用临床或科学专业知识来加强卫生系统，从而发展以人为本的服务。作为一个快速发展的中等收入国家，印度尼西亚的精神卫生系统正在扩大。这一发展的早期阶段为公民参与塑造和加强这些新兴系统提供了一个独特的机会，并确保这些系统是围绕其服务对象的需求和偏好设计的。然而，我们对公民参与在印度尼西亚运作的途径的了解是有限的。我们的研究旨在解决这些知识差距，并制定一个系统层面，文化上适当的公民参与框架，以加强当地的精神卫生服务。精神病患者及其护理人员将接受研究方法培训，并将参与项目的所有阶段。研究将在两个研究地点（雅加达和博戈尔）进行，这两个地点代表不同的卫生系统和城市/农村背景。它将分四个阶段实施;第一阶段，对研究进行系统审查，将确定在东南亚实施的公民参与方法的范围，并审查目前使用这些方法的证据。第二阶段将是一个社会网络分析，以绘制利益相关者在心理健康服务决策时使用的主要合作来源和证据，并将确定公民参与的机会。在第三阶段，我们将与整个卫生系统的主要利益相关者进行访谈，包括政策制定者，临床医生，服务使用者和护理人员，以探讨他们对公民参与的看法以及它如何为印度尼西亚人民工作。在第四阶段，我们将与当地利益攸关方举行一系列综合研讨会，介绍我们的研究结果，并共同制定一个可测试的、文化上适当的公民参与框架和实施战略。我们还将确定关键问题/主题领域，以便对这种方法进行更广泛的评估。在这些研讨会期间，将使用电影和视频采访来捕捉利益攸关方之间重要和有影响力的想法和信息。我们的项目将增加印度尼西亚公民参与的潜力。它将建立研究能力，并为更多的“以用户为中心”的研究提供机会。我们将开发一个赠款申请，对我们开发的公民参与战略进行严格评估，并建立一个强大的印度尼西亚研究小组，拥有未来领导此类研究所需的知识，技能和经验。

Psychosis is ranked 11th among the top 25 causes of disability worldwide, and has serious personal and financial consequences for individuals, their families and the economy, including reduced life expectancy, social exclusion, poor quality of life, and poor health amongst caregivers. In Indonesia, mental health systems are struggling to meet the needs of people with psychosis; more than 90% of people with mental illness do not get any treatment and Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. This, combined with low health literacy (poor knowledge of mental health) and high levels of stigma within the general population has resulted in tens of thousands of people of people being illegally chained up ('pasung') in the family home.Civic engagement, a core part of the WHO global health strategy, could help address these challenges. The benefits of civic engagement have been demonstrated across the world, and include improved access to, and quality of care, reduced stigma, better outcomes for service users and reduced costs. In a health systems context, civic engagement is a 'bottom-up' approach in which service users and their families become actively involved in the design and delivery of health services. It recognises 'lived experience' as an important and valuable form of expert knowledge, and so strengthens health systems by using it alongside clinical or scientific expertise in decision-making, leading to the development of people-centred services. As a rapidly developing middle income country, Indonesia's mental health system is expanding. This early stage of development presents a unique opportunity for civic engagement to shape and strengthen these emerging systems, and ensure they are designed around the needs and preferences of the people they aim to serve. However, our understanding of the pathways through which civic engagement might operate in Indonesia is limited. Our study aims to address these gaps in knowledge and develop a systems level, culturally appropriate civic engagement framework to strengthen local mental health services. People with psychosis and their carers will receive training in research methods and will be involved in all stages of the project.The study will take place at two research sites (Jakarta and Bogor), which represent different health systems and urban/rural contexts. It will be implemented in four phases; Phase 1, a systematic review of research studies, will identify the range of approaches to civic engagement implemented in South East Asia, and review current evidence around the use of these approaches. Phase 2 will be a social network analysis to map the main sources of collaboration and evidence used by stakeholders when making decisions in mental health services and will identify opportunities for civic engagement. In phase 3 we will conduct interviews with key stakeholders across the health system, including, policy makers, clinicians, service users and carers, to explore their views of civic engagement and how it might work for people in Indonesia. In Phase 4 we will hold a series of synthesis workshops with local stakeholders to present our findings and co-produce a testable, culturally appropriate civic engagement framework and implementation strategy. We will also identify key questions/topic areas for a larger evaluation of this approach. During these workshops film and video-interviews will be used to capture important and impactful thoughts and messages amongst stakeholders. Our project will increase potential for civic engagement in Indonesia. It will build research capacity, and provide opportunities for more 'user focussed' research. We will develop a grant application for a rigorous evaluation of the civic engagement strategy we develop, and a strong Indonesian research group, with the knowledge, skills and experience required to lead such a study in the future.