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Table 6 Recommendations for future studies on service user and caregiver involvement in mental health system strengthening

From: Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: systematic review

• More high-quality research is needed that directly relates to the systems level (rather than the service-level), specifically to address the gap in evidence on service user and caregiver involvement in the development of policies and strategies, the planning and development of services, the training of health workers in mental health care, and within mental health research.
• More systematic evaluation needs to be incorporated into studies of service user and caregiver involvement, including rigorous study designs with low risk of bias, such as RCTs complemented by participatory approaches or case studies.
• Outcome evaluations need to be more clearly defined in terms of their relationship to service user or caregiver involvement. Specifically, more studies need to measure the effects of service user or caregiver involvement on either service users or caregivers themselves (e.g. mental health status, well-being, uptake of services, caregiver burden), or the impact of their involvement on services (e.g. availability, accessibility and appropriateness of mental health services, pathways to and through care).
• Stakeholder involvement (including service users and caregivers) in study design is recommended that may offer a solution to the slow translation of the findings into meaningful changes in practice at the service or systems level.
• Research needs to take into account the local context, culture, traditions and values in the implementation of interventions or capacity-building activities.
• Research needs to draw on resources that are available within study countries, e.g. engage and involve policy makers, decision-makers, advocacy or service user groups. Interventions in which there is no or very limited service user involvement may need to focus initially on empowerment or the establishment of new service user groups.
• Service users and caregivers need to be fully informed of the reasons for the studies in which they participate and give informed consent to do so. Research could be used as a platform to provide information to service users and caregivers about their rights, and to foster advocacy work.
• Models of best practice need to be shared widely and across countries. One way in which to do this may be to empower service user organisations to deliver those services that they are best at, and to then facilitate the documentation of these practices.