BACKGROUND:
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.
METHODS:
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.
RESULTS:
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.
CONCLUSION:
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.