ArticleBMC psychiatry2020
Service user and family participation in mental health policy making in Timor-Leste: a qualitative study with multiple stakeholders.
Article in BMC psychiatry, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Equitable partnership: patient and public involvement and engagement and community engagement in mental health research in Pakistan.Research involvement and engagement · 2026Article
- Inclusiveness of social participation for health reform: findings from a realist review.International journal for equity in health · 2026Review
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- Article
- Intersectoral collaboration for people-centred mental health care in Timor-Leste: a mixed-methods study using qualitative and social network analysis.International journal of mental health systems · 2019Article
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6 authors.
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Abstract
backgroundParticipation 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.
methodsIn-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.
resultsThere 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.
conclusionThe 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.
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