Background

There is a wide recognition that involvement of service users and their caregivers in health system policy and planning processes can strengthen health systems; however, most evidence and experience has come from high-income countries. This study aimed to explore baseline experiences, barriers and facilitators to service user-caregiver involvement in the emerging mental health system in India, and stakeholders’ perspectives on how greater involvement could be achieved.

Methods

A qualitative study was conducted in Sehore district of Madhya Pradesh, India. In-depth interviews (n = 27) and a focus group discussion were conducted among service users, caregivers and their representatives at district, state and national levels and policy makers, service providers and mental health researchers. The topic guide explored the baseline situation in India, barriers and facilitators to service user and caregiver involvement in the following aspects of mental health systems: policy-making and planning, service development, monitoring and quality control, as well as research. Framework analysis was employed.

Results

Respondents spoke of the limited involvement of service users and caregivers in the current Indian mental health system. The major reported barriers to this involvement were (1) unmet treatment and economic needs arising from low access to mental health services coupled with the high burden of illness, (2) pervasive stigmatising attitudes operating at the level of service user, caregiver, community, healthcare provider and healthcare administrators, and (3) entrenched power differentials between service providers and service users.

Respondents prioritised greater involvement of service users in the planning of their own individual-level mental health care before considering involvement at the mental health system level. A stepwise progression was endorsed, starting from needs assessment, through empowerment and organization of service users and caregivers, leading finally to meaningful involvement.

Conclusions

Societal and system level barriers need to be addressed in order to facilitate the involvement of service users and caregivers to strengthen the Indian mental health system. Shifting from a largely ‘provider-centric’ to a more ‘user-centric’ model of mental health care may be a fundamental first step to sustainable user involvement at the system level.