Abstract
BackgroundService user and caregiver involvement has become an increasingly common strategy to enhance mental health outcomes, and has been incorporated in the mental healthpolicies 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.MethodsThis 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 menta 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.ResultsThe 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.ConclusionThe 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.
Highlights
Service user and caregiver involvement has become an increasingly common strategy to enhance mental health outcomes, and has been incorporated in the mental healthpolicies of many developed nations
This paper aims to assess the experiences and challenges of service users and caregivers regarding their involvement in mental health system strengthening processes in Nepal, including policy development, service planning, monitoring, and research, and to identify effective ways to enhance service user and caregiver involvement in system level processes
This study addresses the issue of service users and caregiver involvement in system strengthening processes in Nepal through the perspective of service users and caregivers only; to provide a complete picture of the issue, further inquiry is necessary with multiple stakeholders including policy makers and service providers
Summary
Service user and caregiver involvement has become an increasingly common strategy to enhance mental health outcomes, and has been incorporated in the mental healthpolicies of many developed nations This practice is non-existent or fragmented in low and middle income countries (LMICs). In HICs the service user and caregiver movement stems mostly from dissatisfaction with a paternalistic medical model of care that views patients as passive subjects unable to make their own decisions [8]. Another driver has been the development of consumerist notions of health care that have brought about increased choices and voices for service users [8, 9]. A more recent model of user involvement, proposed by Tritter and McCallum [14], uses the image of mosaic tiles to represent the complex and dynamic relationships between users and other stakeholders in the involvement process
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