Nossal Institute for Global Health, The University of Melbourne, Exhibition Street, Melbourne, 3004, Australia.
London School of Hygiene and Tropical Medicine, London, UK.
BMC Psychiatry. 2020 Mar 12;20(1):117. doi: 10.1186/s12888-020-02521-3.
Participation in mental health system strengthening by people with mental health problems and their families is a cornerstone of people-centred mental health care, yet there is a dearth of research about participation from low- and middle-income countries (LMICs), particularly from the Asia Pacific region. Hence, this study aimed to assess the current situation, challenges, enabling factors and future actions for service user and family participation in mental health policy making in Timor-Leste.
In-depth interviews were conducted with 85 adults (≥18 years) who were: (1) mental health service users (n = 20) and their families (n = 10); (2) government decision makers (n = 10); (3) mental health and social service providers (n = 23); (4) civil society (n = 9); and (5) other groups (n = 13). Interview data was analysed using framework analysis.
There was limited service user, family and community participation in mental health policy making in Timor-Leste. Perceptions that policy making is a technical exercise and that people with mental health problems lack cognitive capacity, and a lack of supportive mechanisms challenged participation. Enabling factors were a strong focus on human rights within the social sector, and existing mechanisms for advocacy and representation of people with disabilities in social policy making. Participants suggested bolstering civil society representation of people with mental health problems, and increasing mental health awareness and literacy, including government competencies to facilitate service user participation.
The findings highlight the need for theoretical and practical focus on the role of family within mental health system development in LMICs. Global mental health research and practice should adopt a critical approach to mental health service user and family participation to ensure that the concept and strategies to achieve this are embedded in LMIC knowledge.
精神健康问题患者及其家属参与精神卫生系统强化是以人为本的精神卫生保健的基石，但来自中低收入国家（LMICs），尤其是亚太地区的关于参与情况的研究却很少。因此，本研究旨在评估东帝汶精神卫生政策制定中服务使用者和家属参与的现状、挑战、有利因素和未来行动。
对 85 名成年人（≥18 岁）进行了深入访谈，包括：（1）精神卫生服务使用者（n=20）及其家属（n=10）；（2）政府决策者（n=10）；（3）精神卫生和社会服务提供者（n=23）；（4）民间社会（n=9）；和（5）其他群体（n=13）。使用框架分析对访谈数据进行了分析。
东帝汶的精神卫生政策制定中服务使用者、家属和社区参与有限。人们认为政策制定是一项技术性的工作，而且精神健康问题患者缺乏认知能力，缺乏支持性机制，这些因素都对参与造成了挑战。有利因素包括社会部门对人权的高度重视，以及现有的残疾人社会政策倡导和代表机制。参与者建议加强民间社会对精神健康问题患者的代表性，提高精神卫生意识和素养，包括政府促进服务使用者参与的能力。
研究结果强调需要从理论和实践上关注家庭在精神卫生系统发展中的作用，特别是在中低收入国家。全球精神卫生研究和实践应采取批判性方法来关注精神卫生服务使用者和家属的参与，以确保这一概念和实现这一目标的策略嵌入到中低收入国家的知识体系中。
