BACKGROUND: The involvement of mental health service users and their caregivers in health system policy and planning, service monitoring and research can contribute to mental health system strengthening, but as yet there have been very few efforts to do so in low- and middle-income countries (LMICs).
METHODS: This systematic review examined the evidence and experience of service user and caregiver involvement in mental health system strengthening, as well as models of best practice for evaluation of capacity-building activities that facilitate their greater participation. Both the peer-reviewed and the grey literature were included in the review, which were identified through database searches (MEDLINE, Embase, PsycINFO, Web of Knowledge, Web of Science, Scopus, CINAHL, LILACS, SciELO, Google Scholar and Cochrane), as well as hand-searching of reference lists and the internet, and a snowballing process of contacting experts active in the area. This review included any kind of study design that described or evaluated service user, family or caregiver (though not community) involvement in LMICs (including service users with intellectual disabilities, dementia, or child and adolescent mental health problems) and that were relevant to mental health system strengthening across five categories. Data were extracted and summarised as a narrative review.
RESULTS: Twenty papers matched the inclusion criteria. Overall, the review found that although there were examples of service user and caregiver involvement in mental health system strengthening in numerous countries, there was a lack of high-quality research and a weak evidence base for the work that was being conducted across countries. However, there was some emerging research on the development of policies and strategies, including advocacy work, and to a lesser extent the development of services, service monitoring and evaluation, with most service user involvement having taken place within advocacy and service delivery. Research was scarce within the other health system strengthening areas.
CONCLUSIONS: Further research on service user and caregiver involvement in mental health system strengthening in LMICs is recommended, in particular research that includes more rigorous evaluation. A series of specific recommendations are provided based on the review.