Table 1 Summary of barriers to involvement and strategies to facilitate involvement

Lack of awareness and information

Lack of awareness regarding the ‘why’ and ‘how’ of involvement among service users, caregivers, and policy makers

Lack of confidence to participate due to lack of information

Ignorance among policy makers that leads to failure to prioritize mental health

Raising awareness

Use of media: documentary/drama, street-plays, posters, pamphlets, radio, TV programs, billboards

Incorporation of mental health issues in school education

Interpersonal interactions among community members

For policy makers- interaction with service users/caregivers, field visits to health centers, awareness workshops

Stigma and discrimination

Service users and caregivers feel humiliated and don’t want to identify themselves or become involved due to stigma

No space in government positions for service users

Psychiatrists unwilling to work with service users on equal grounds

Reduction of stigma

Through awareness-raising, education, employment opportunities, quota for government positions

Getting rid of discriminatory words such as ‘service users’ and ‘service providers’

Poor economic conditions and competing priorities

Focus on earning a living, so no time to spare for involvement

Expectation of free treatments and medicine, involvement in income generating activities rather than system processes

Formation of service user and caregiver groups at grassroots level

Bottom-up approach: service user/caregiver groups should be established in villages

Supports involvement of service users/caregivers from rural areas

Centralization of national health system processes

No access to system strengthening processes for those living in rural areas; health system processes mostly take place in major cities

Capacity building

Training should be conducted by the government

Training should address basic knowledge of mental illness, its types, and treatments, mental health systems and system strengthening, their needs and roles of service users/caregivers

Lack of strong leadership and unity among service user community

Disjuncture among service users representing organizations

A sense of competition among service user organizations

Conflicting views regarding selection of representatives

Lack of consensus on how/to what extent service users should be involved in policy development

Selection of representatives

Selection to represent the population from grassroots level

Representation of all demographic, economic and geographical groups needed

Methods of involvement

Involvement should take place at different levels of policy making

Monitoring: formation of monitoring committee with service users, caregivers, service providers, government employees as its members

Research: involvement mainly in data collection