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Tanatswa Chikarua, founder of the Ndinewe Foundation, a mental health organization in Zimbabwe, is currently pursuing an MPhil in Basic and Translational Neuroscience at the University of Cambridge. In this insightful blog, Tanatswa explains the value of listening to those with mental health issues in the world of mental health research.
In my mother tongue, Shona, the word Ndinewe translates to “I am with you”. The mission of the Ndinewe Foundation is to support the mental health and well-being of young Zimbabweans by focusing on their lived experiences.
I served on the Lived Experience Advisory Group for the Landscaping International Longitudinal Datasets project. This is a Wellcome-funded project that aimed to identify existing longitudinal datasets around the world that could be used to further research on anxiety, depressionAnd psychosis.
From stigma to empowerment
Mental health stigma remains one of the major contributors to the promotion of mental health inequities in different communities. While it is recognized that language, cultural differences and communication issues can lead to mental health-related stigma, the degree to which people with mental health issues are stigmatized is often underestimated, in part due lack of understanding of mental health from different angles.
The lack of culturally sensitive mental health education and awareness campaigns fuels research practices and narratives, contributing to the persistence of barriers that prevent some communities from receiving or accessing effective mental health care .
On the contrary, the word that comes to mind when I think of the Landscaping International Longitudinal Datasets project is empowerment.
Empowerment is the process of acquiring strength and confidence, particularly in managing one’s life and asserting one’s rights.
I have defined empowerment in this context as the process of enabling people with lived experience of mental health problems and their caregivers to recognize and express their mental health needs at any given time. It’s a process that shouldn’t be taken for granted, and looking back, I see its potential to transcend from project to communities.
In the past, some people have looked down on or sympathized with those who struggled with mental health issues. Other times, people with lived experience are forced to suffer in silence using derogatory language that reinforces the stigma associated with mental illness. However, the narrative changes due to the time period we find ourselves in.
When talking to those who have lived experiences, empowerment takes center stage rather than pity or shame.
Because of their unique expertise, familiarity with navigational systems, first-hand knowledge of mental health issues, and ability to shape research in original and beneficial ways, people with lived experience are increasingly recognized as agents of change.
A collaborative approach
The inclusion of lived experience counselors in this process was an essential step in advancing the understanding of mental health issues and improving the well-being of individuals. The project was remarkable because it addressed both mental health inequalities and inclusioncreating a platform for people with lived experience from diverse backgrounds to have their voices heard.
The voice of a lived experience advisor is essential to inclusiveness in research practices. While it takes courage to engage, listen, and pay attention to the needs of the people you co-create with, simply viewing lived experience counselors as research participants narrows the scope of the research. in mental health. However, these engagements with lived experience advisors as collaborators provide direction and value.
People from different parts of the world highlighted various barriers to promoting mental well-being, such as language, culture, technology, and translational relevance. It was amazing to identify similarities in our differences within the group of lived experience counsellors.
We can be shaped by different experiences, but this project created a safe space that revealed that our different experiences align with each other.
This revelation has the potential to be transformative in terms of generating and personalizing mental health care systems for people around the world.
Being part of the lived experience counselors encouraged learning, understanding and growth. Through engagements with key stakeholders, the project intentionally aimed to put the needs of lived experience counselors first. This included phrasing complex terminology in a way that would make the research report understandable and accessible to all, as well as integrating the reflections of the lived experience advisors into the project’s objectives and impact statements.
Co-production takes center stage
What I take away from this project is that there is hope.
My introduction to the mental health space was terrifying. The lack of adequate mental health support for individuals, let alone one-to-one support, was my main concern. We live in a time where people feel like “experiments” in an effort to identify a personalized treatment plan. Jumping from one mental health practitioner to another makes mental health researchers seem to ignore the needs, wants, and demands of the populations they are trying to serve.
To achieve Wellcome’s vision where no one is held back by their mental health, co-production takes center stage.
It was encouraging to co-produce various components of this project as part of the Lived Experience Advisors. This allowed researchers to appreciate different cultures and viewpoints while fostering empathy, compassion, and understanding.
To ensure that equality, diversity and inclusion are at the forefront of research projects, every mental health researcher should consider how lived experience can be included in its foundations. Co-creation and co-production are key to improving mental health diagnosis and support.
This project proved to me that a person with lived experience is not just a participant but also a collaborator, which I think may have been the missing component all these years.
Many thanks to Tanatswa for this blog post.
Learn more about why research is important in our Research Appreciation Day articles.
Learn more surprising facts about research.
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