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.

中文翻译：

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东帝汶精神卫生政策制定中的服务使用者和家庭参与：与多个利益相关者的定性研究。

有精神健康问题的人及其家人对加强精神卫生系统的参与是以人为本的精神卫生保健的基石，但是，关于中低收入国家（特别是中低收入国家）的参与尚缺乏研究亚太地区。因此，本研究旨在评估服务使用者和家庭参与东帝汶精神卫生政策制定的现状，挑战，促成因素和未来行动。对85名成年人（≥18岁）进行了深度访谈，他们是：（1）精神卫生服务使用者（n = 20）及其家人（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）；（5）其他组（n = 13）。访谈数据使用框架分析进行了分析。东帝汶的精神卫生政策制定服务使用者，家庭和社区参与有限。认为决策是一项技术性活动，患有精神健康问题的人缺乏认知能力，缺乏支持机制对参与产生了挑战。促成因素包括社会部门对人权的高度关注，以及在社会决策中倡导和代表残疾人的现有机制。与会者建议加强民间社会对精神健康问题患者的代表性，并提高精神卫生意识和素养，包括政府能力以促进服务使用者的参与。研究结果强调需要在理论和实践上关注家庭在中低收入国家心理健康系统发展中的作用。