Background: Service user and caregiver involvement has become an increasingly common strategy to enhance mental health outcomes, and has been incorporated in the mental health policies of many developed nations. However, this practice is non-existent or fragmented in low and middle income countries (LMICs). Instances of service user and caregiver involvement have been rising slowly in a few LMICs, but are rarely described in the literature. Very little is known about the context of user and caregiver participation in mental health system strengthening processes in a low-income, disaster- and conflict-affected state such as Nepal.
Methods: This study explores (a) the extent and experiences of service user and caregiver involvement in policy making, service planning, monitoring, and research in Nepal; (b) perceived barriers to such involvement; and (c) possible strategies to overcome barriers. Key Informant Interviews (n = 24) were conducted with service users and caregivers who were either affiliated to a mental health organization or receiving mental health care integrated within primary care. Purposive sampling was employed. Data collection was carried out in 2014 in Chitwan and Kathmandu districts of Nepal. Data analysis was carried out in NVivo10 using a framework approach.
Results: The involvement of service users affiliated to mental health organizations in policy development was reported to be ‘tokenistic’. Involvement of caregivers was non-existent. Perceived barriers to greater involvement included lack of awareness, stigma and discrimination, poor economic conditions, the centralized health system, and lack of strong leadership and unity among user organizations. Increased focus on reducing public as well as self stigma, improved policy frameworks and initiatives, and decentralization of care are some strategies that may facilitate service user and caregiver involvement.
Conclusion: The study highlighted need for user and caregiver networks free from competing interests and priorities. Improved policy frameworks and decentralization of care may support meaningful service user and caregiver involvement.
Keywords: Service user and caregiver, Patient involvement, Stigma, Empowerment, Nepal