A lived experience perspective on overcoming research biases
When did you first suspect you had a mental health condition? Tell us about your mental health experience.
I recognized that I was experiencing ‘something’ — what that ‘something’ was, I couldn’t say — as a child. I had my first exposure to the world of mental health in high school, and I must have been about 15 years old when I first suspected that I had a condition. My thoughts and behaviours, which I had normalized, seemed misaligned with what I believed were healthier patterns in others.
My suspicion deepened throughout my undergraduate career as I studied neuroscience and psychology and dived into mental-health-related topics with my peers. The state of my condition waxed and waned until it reached a critical point in graduate school. For the first time, my mental health challenges became impossible to conceal. The toll on my physical health was undeniable and I was rendered dysfunctional in nearly every aspect of life. I knew that I needed help.
Credit: Rachel Grace Peiris
What support or treatment did you receive for your mental health? If you received a diagnosis, can you tell us about that experience?
It’s difficult to describe exactly what it felt like to receive a diagnosis. It was as if I had been shouting into the void for what seemed like forever, only to finally hear a voice speak back. I felt validated. Although I was afraid, I sensed that I was on the precipice of change because I could call this ‘thing’ that I had been struggling with for so long by its name.
I began the journey of treatment with the support of professionals and loved ones. Dealing with treating symptoms, unpacking and unlearning unhealthy patterns, and grappling with internalized stigma was overwhelming at first.
After years of adjusting and committing to recovery, a sense of stability began to slowly creep over me. I started to equip myself with tools, which brought me closer to overcoming the unseen battle. And although this might be a lifelong battle, it’s not one that I fear losing anymore.
Why did you decide to collaborate as a lived experience expert in research? Why is this important to you?
I value the scientific method for understanding the world, given my own experience as a researcher in mental-health-related fields. However, the biases of research are not lost on me. For instance, non-response biases can be common for topics that are particularly stigmatizing, such as housing insecurity, addiction and suicidality, given the shame that is often carried by individuals with such lived experiences and the social consequences they often face. Additionally, the age-old limitation of sampling biases remains prevalent. Marginalized groups such as members of the BIPOC (Black, Indigenous, and people of colour) and queer communities, immigrants and refugees, and low-income folks are often under-represented in research despite their unique experiences with mental health challenges and accessing care and support.
I’m grateful to be witnessing a shift in the mental health field toward inclusivity, sensitivity, and equity. To that end, emphasis is now placed on the importance of integrating lived experience through advisory groups and other participatory efforts. It is important to me that I contribute what I can to this movement toward more human-centered research.
What can be done to improve representation of people with lived experience in research?
Two steps come to mind based on my personal experience. First, researchers can adopt more intentional sampling strategies. Simply recruiting participants who meet diagnostic criteria might not be enough. Mental health conditions impact people from different gender, socioeconomic and ethnic groups in different ways. Representational sampling is vital for addressing intersectionality and improving the generalizability of research findings.
Second, patient advisory groups are invaluable. They offer insights into overlooked issues, provide guidance on the sensitivity of language and help to address accessibility concerns. They represent the very populations that research is intended to serve, so including them in the process is essential.
What are the potential harms of participating in research as a lived experience expert? What can be done to mitigate these harms?
Participating as a lived experience expert carries potential risks, such as being triggered, encountering microaggressions or experiencing shame. I haven’t personally faced these challenges, but I had these concerns when I joined an advisory group. Being open about mental health struggles is not always easy, even in spaces that strive to be compassionate and non-judgmental.
One way to mitigate these harms is to invest in educating facilitators of advisory groups. Workshops, training modules and discussions led by individuals with lived experience can help deepen researchers’ understanding of how to foster a safe space.
“[The voice of people with lived experience] strengthens the collective call for visibility and a greater understanding of a historically stigmatized and marginalized community”
What advice do you have for someone with lived experience who is considering collaborating with researchers as an expert?
Be open and honest about your lived experience. It’s not something to be ashamed of; it’s valuable and can inform more representative and relevant research.
Although your voice alone might not speak to the experience of every individual with your conditions, it strengthens the collective call for visibility and a greater understanding of a historically stigmatized and marginalized community.
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