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

From: Service user and care giver involvement in mental health system strengthening in Nepal: a qualitative study on barriers and facilitating factors

Barriers hindering involvement in national health system processes 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