The COVID-19 pandemic has shown us the disproportionate toll on one’s mental health, particularly among racialized and other underserved communities. Researching the social and structural determinants of health, such as income, education, employment, access to care, racism, discrimination and other factors, will allow us to better assess the root causes for these negative impacts on mental health.
Participatory Community-Based Research
A form of research called participatory research involves people with lived experience engaging throughout the development, implementation, evaluation, and dissemination processes of a research study. For instance, this can include racialized people more generally and those living with mental illnesses who want to address social and structural issues in order to apply evidence into practice within their own communities. The current literature has also revealed a clear gap in research focused on advancing mental health promotion for racialized groups, especially in the focus of suicide bereavement.
Therefore, participatory research is helpful to capture the unmet needs of these groups by giving them a voice to contribute their knowledge, skills, and experiences. For example, this can be participation from the start of the research study, such as soliciting feedback to better scope the research focus, and generating research questions of importance. Conducting focus groups, interviews, and surveys as well as offering knowledge dissemination opportunities with diverse communities are further examples of potential involvement in the research process.
However, from my experiences, there needs to be greater appreciation and care in how racialized people are incorporated through a co-design approach in mental health research projects moving forward. There are challenges when this process is not handled with a safe, inclusive, and trauma-informed perspective.
Trauma is the experience and response to a given circumstance or set of circumstances that can be physically and/or emotionally harmful, or life threatening, and has lasting adverse effects on one’s functioning. Individuals and communities may experience many dimensions of trauma including developmental, historical, intergenerational, and repetitive in nature.
A key aspect of a trauma-informed approach is to create a research environment where racialized communities do not experience further traumatization or retraumatization and where they can make decisions about their individual and community needs at a pace that feels most safe to them.
Throughout the COVID-19 pandemic, I have seen many of my racialized community members, including family and friends that I grew up with, severely impacted in terms of disparities in health outcomes. Tragically, in many cases the disparity caused deaths that might otherwise have been prevented. It felt as though I was living in a double reality, where on one side there were the challenges with restriction policies from the pandemic but on the other side there was tremendous loss and grief from sudden deaths happening so frequently in my community. Before I could take the time to heal from one loss, there would be another death related to COVID-19 or harmful practices that prevented some from accessing care.
You can imagine how difficult it is to speak about these situations while participating in research projects about these very experiences that are deeply personal. But I also know that to truly improve the understanding of mental health and COVID-19 for my community, it meant that I needed to share lived experiences to inform barriers/gaps for future research-based programming and policies.
When I was asked to share my experiences for research purposes, I thought that there would be care in how lived experiences would be included. However, there were several challenges that I, and other people who identified as being racialized, faced.
For instance, there were circumstances where others and myself felt being used for the sole purpose of capturing “rich data” rather than the long-term sustainability of our contributions into the project and how it can be applied into practice. Another challenge was some members undermining the impacts of the COVID-19 pandemic on racialized groups, generalizing that everyone is impacted equally despite growing evidence to the contrary. Also, there were situations where it felt uncomfortable to talk about certain experiences that some racialized members faced when it came to injustice and discriminatory practices for accessing health services during the pandemic. Sometimes talking about difficult topics made it seem like your situation was an isolated case when in reality it is a collective challenge and that every story does matter.
Sadly our stories of these challenges are not unique, it is the story of many other racialized people where our personal challenges and values are often heavily compromised in research spaces. This can further perpetuate discrimination and a sense of increased isolation in research and community engagement. Therefore, it was important to navigate through these difficult conversations in order to discuss what matters most, listen for the meaning of what is not said, staying balanced in the face of uncertainty and moving from emotion to productive problem solving.
Longevity of Involvement
I’ve learnt that when including racialized people into COVID-19 related research (or any research in general), it is important to ensure the longevity of involvement of people with lived experience. It takes a lot of strength to share one’s story, so when someone does this, it could be interpreted that they want to be involved for the long-run and be agents of change in their own communities. This is especially important when there are aspects of trauma involved. Some other common reflections that come to mind from this work includes the following:
- How do we truly foster spaces for racialized people that incorporate meaningful engagement, such that tokenism is minimalized , and freedom of expression, care, safety, and well-being are maximized?
- How can we empower non-performative ways of inclusion into mental health research?
- How can researchers provide safe spaces for continuous learning of the cultural context of racialized populations prior to establishing the nature of the research study? Learning takes time, but unlearning previously engraved biases and prejudices about certain communities takes longer. Taking time to learn about each community through focus groups, interviews and other speaking opportunities directly with the impacted community, helps tackle some perceived misconceptions early on rather than later when a research study has already begun.
- People with lived experience are capable of far more than solely lived experience roles. How can researchers and people of lived experience embed meaningful opportunities together that complement each others’ values, expectations and future goals?
Sometimes, those in the research process often assume what is best for racialized communities rather than simply asking about our individual thoughts and needs. It’s important to have opportunities for co-design, such as how data and knowledge products are designed, shared, and published. Remember that a welcoming space is different from an equitable space. A welcoming space invites, includes and represents the public, whereas an equitable space is co-created with the focus on redistributing power to historically oppressed groups of people.
To truly be representative, we must approach equity as a process rather than solely an outcome. A co-designed approach in research with racialized people with lived experiences has its own benefits. For example, we may be affiliated with or may have wider networks that are doing frontline mental health work in our direct communities which could be influential in how the knowledge products created by the research team are being taken up in the short-and-long term. When I co-created knowledge products with a research team, I was able to share these in an efficient manner within my own community network. This process was simple because the long-standing connections were already established, so less time was focused on how to build networks, and more time allocated on increasing the utilization of current knowledge products.
Another easy approach is to simply ask us two questions early in the process: What does meaningful engagement mean to us and how would we like to be engaged throughout the research processes?
It is important to note that not all people choose to tell their stories publicly. Some people may choose other pathways to impact change, which in itself is an act of courage. Transformative change requires many roles and actions, and we must honour them all.
Finally, it’s important to be aware that just because we might work in the same field of mental health research does not always mean we are doing the same work. Some are paying attention to the marginalized because it has gained popular attention during the COVID-19 pandemic. But, for some, like racialized people with lived experience, we are already doing the work because it’s our everyday life and not something we can simply escape from once the research is complete. Therefore, it is our lifelong mission, and so the time and insights brought to the research table must be respected and safe for all members involved throughout the entire process.
Moving forward, I hope these recommendations are carefully embedded in the research process, so that more people are not hindered to share their insights, but instead are encouraged to share experiences that can one day be truly impactful. As a researcher and an advocate, I will strive to improve systems and processes that encourage equitable participation such that communities like my own and others can continue to improve the mental health research sector now and in the future.
My name is Lucksini and my interests are focused on improving equitable access to health services for priority populations, including those facing homelessness, youth seniors, racialized communities, among others. I am a community advocate towards including people with lived experiences as well as the timely collection and application of sociodemographic and race-based data when implementing programs/policies for targeted populations at the local, provincial, and federal level.
Eli’s Place will offer diverse treatment modalities for serious mental illness that focus on recovery and resilience. To learn more about our mission to serve young adults 18 – 35 and how you can help us open our doors, click here.