How can we engage people with lived experiences experts to enhance research and mental health care and services in Africa?

By Charity Muturi and Amisa Rashid

Access to mental health services remains a significant challenge for over 116 million people across Africa. This is due to, among other challenges, cultural and spiritual beliefs, inadequate human resources and infrastructure, financing constraints, legal barriers as well as societal misconceptions.

Nevertheless, there is optimism, stemming from the proactive measures taken by various African governments and other administrative bodies. This has seen the implementation of national mental health policies and the establishment of mental health clinics, signifying steps towards integrating mental health into primary healthcare systems.

However, to ensure that these initiatives effectively mitigate mental health challenges, they must be grounded in robust data and extensive research. Central to this effort is the inclusion of lived experience experts who regarded as ‘experts by experience’ in the scope of their first-hand experience with mental health diagnosis or mental health condition. Their involvement is increasingly considered a priority in health research settings. Incorporating their experiences living with various conditions across various processes and activities is crucial for enhancing the impact of mental health interventions. Their engagement might involve integrating them in full range of research process such as advisory, collaborators and co-researchers of as fulltime partners. They can provide contribution to the research from the beginning of the study to end of knowledge translation because their knowledge, skills and experience is valued to the same degree as the knowledge generated through empirical research.

Drawing from our individual encounters with mental health issues, we recognize the vital role of lived experiences in shaping research agendas and policy frameworks. Our involvement in organizations like the World Health Organisation – Ministry of Health (WHO-MOH) Quality Rights for Mental Health Training team and the NCD Alliance Global Advisory Committee underscores the urgency of the inclusion of authentic perspectives as we move towards tailored interventions. No one understands mental health issues better than those who have experienced them firsthand. ‘Nothing For Us Without Us’ is possible” making our advocacy invaluable in shaping effective intervention strategies.

However, meaningful change in the discourse on tackling mental health issues requires more than just data collection or program implementation; it demands a shift in narrative. This shift entails empowering individuals with mental health conditions to actively participate in decision-making processes at all levels, aligning with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) Convention on Rights of Persons with Disabilities. By recognizing and leveraging lived experiences, societies can create a more inclusive and supportive environment for mental health intervention.

Locally, our involvement with Nivishe Foundation, a women and youth-led organization dedicated to addressing mental health in localised communities, has highlighted the value of integrating technology, such as artificial intelligence and digital health tools, to improve mental healthcare provision at the grassroots level. Recently, we celebrated the Nivishe mental health fellowship third cohort that had 200 youth from all over the country and few from Sudan who have made a significant impact in mental health advocacy and support, with 80 youth graduating. We anticipate that the support provided by this cohort will significantly empower individuals to voice their concerns, a crucial step in addressing the specific mental health needs of local communities in Kenya.

Additionally, there is value in blending quantitative and qualitative monitoring methods, while acknowledging cultural disparities in data collection. This is crucial for evidence-based approaches in informing and strengthening mental health programs. Research efforts need to be tailored to local contexts, fostering collaboration among stakeholders, and engaging community members for genuine cooperation. The information garnered would provide a comprehensive picture of the status of mental health in many countries for more informed decision making. The localised communities, often overlooked in mental health efforts, can also play a pivotal role in shaping solutions.

That is why we advocate for the Mental Health Data Prize – Africa, an initiative aimed at leveraging data to address mental health challenges across Africa. Launched by the African Population and Health Research Center (APHRC) in partnership with Wellcome, this project aims to address gaps in the understanding of anxiety, depression and psychosis and to improve evidence-based decisions making practice in Africa. As part of the prize, a five-month capacity-building program is currently underway, focusing on data science, statistical analysis, and machine learning as well as bringing together people with lived experiences for mental health applications in Africa. This initiative offers a unique opportunity to enhance understanding and interventions for common mental disorders, contributing to a more resilient future.

It is essential for individuals with lived experiences to participate in such initiatives and to provide insights to professionals, to ensure that our perspectives influence research and policy decisions. However, the number of individuals with lived experiences participating in such initiatives remains low at the moment. We encourage others with lived experiences to sign up and integrate their voices into these endeavours, as they are crucial for improving mental health outcomes in Africa.

Let us unite our voices and promote genuine inclusion to create a more equitable and supportive environment for improving mental health across the continent.

About the authors

Charity Muturi is a health advocacy & policy champion through the lens of lived experience with a mental health condition and a peer support leader. She serves in the NCD Alliance Global Advisory Committee and WHO MOH Quality Rights for Mental Health Training Team. She is also a court petitioner to decriminalize suicide attempt and served in the National Task Force on Mental Health.

Amisa Rashid is counseling psychologist, a mental health practitioner and advocate focusing on community based mental health interventions. She is the Founder and Executive Director of Nivishe Foundation and is also the Community Advisory Board Member at the Aga Khan University Brain & Mind Institute