Advancing meaningful engagement: A rapid review of models to integrate lived experience in the mental health and research agenda in Africa

<ns3:p>Prevalence of mental health conditions is high globally, at 13% and 10.9% in Africa, with anxiety and depression as the most common. Although mental health research is growing, there is low engagement of People with Lived Experience (PLE) of mental health, despite their important contribution of first-hand insights and strengthening research relevance. Furthermore, in Africa, guidelines for engagement of PLE are unclear, despite it being a global priority. This review paper discusses how PLE can be meaningfully engaged in research, presenting associated challenges and a conceptual framework. A multi-pronged methodological strategy was applied, combining review of existing published and grey literature with inclusion of personal reflections and expert evidence. Mental health research in Africa is conducted in a context of stigma and secrecy around mental health, in addition to low quality mental health care, poverty and broader contextual challenges. Additionally, mental health research receives low funding, with limited mentorship, ethical challenges and low PLE engagement. Challenges to PLE engagement include knowledge gaps on processes; lack of standardized approaches; power imbalances between researchers and PLE and tokenistic involvement. There are also possibilities of re-trauma for PLE, plus unclear policies on reimbursement. Principles of meaningful PLE engagement include dignity, compensation, mutual respect and non-discrimination. PLE should be involved early and throughout studies, from research design to implementation, analysis and dissemination, not just as subjects. Both PLE and research teams must have capacity built on expectations and roles, while a safe environment is crucial, with psychosocial support, flexible schedules and observance of ethics. The review was limited by scarcity of African-specific data so it drew on evidence from high income settings, that may not always be suitable. Future research questions include identifying outcomes of mental health research engaging PLE in Africa, facilitators and barriers for success and PLE preferences for engagement.</ns3:p>