As a teenager, it is hard enough dealing with the emotional challenges of growing; add to it the stigma of living with HIV. Then there are researchers who aim to improve the mental health of these teenagers without ever involving them in the process! This leads to a disconnect between lived experience and research outcomes. It is a little-recognized barrier to effective mental health interventions for marginalised communities.
A recent study from Karnataka offers a way forward that places youth at the centre of the research process using principles of Community-Based Participatory Research (CBPR). In this study conducted in Karnataka this year, six young adults, aged 18 to 24, all born with HIV, were trained as youth investigators to assess mental health challenges faced by their peers—other adolescents and young adults living with HIV. These young investigators participated in discussions on the problem statement and designed culturally relevant mental health screening tools. They pilot-tested and implemented the tools across four districts in Karnataka and Tamil Nadu and actively participated in data analysis and interpretation, thus ensuring the research was rooted in the real experiences of their community.
The benefits of youth involvement went far beyond improved data. The peer-to-peer model helped reduce stigma, making it easier for participants to open up about their mental health. For young people with HIV who often face intense isolation and discrimination, speaking candidly with someone who shares similar experiences was liberating. This is the power of CBPR; beyond generating authentic research, it creates safe spaces for vulnerability and healing.
Community at the centre of the research process
CBPR flips the traditional research model on its head, treating community members not as subjects but as partners. This approach addresses the hierarchical dynamics between the researcher and the researched, and empowers people to make decisions about their own communities. The academic research community has a reputation for being exclusive and disengaged from the community. It is often criticised for poor communication with the public and for not always benefiting the communities involved in their trials.
A recent example is the promising HIV prevention drug, lenacapravir, which showed exciting results in trials with African women but remains inaccessible to them due to the lack of licensing pathways and limited community involvement in the design process. Worse, there are historical instances of harmful research, such as the Tuskegee and Havasupai studies involving ethnic minorities in the United States, where research ethics were violated without community knowledge. The idea that projects and policies often fail to benefit the communities in need was highlighted almost three decades ago by journalists like P.S. Sainath. His eye-opening work, Everybody Loves a Good Drought, suggests that while many benefit from these initiatives, the real-life villagers suffering from the drought are not part of that "everybody."
Fortunately, there is growing recognition that the lack of effective community engagement can result in the rejection of public health interventions, undermining the significant resources and efforts dedicated to research and development. Recently, India conducted an in-depth exploration of community involvement in tuberculosis control using qualitative research and innovative tools such as ‘witness seminars’, a technique of recording group oral history by different stakeholders in order to get a rich and layered synthesis. More such research approaches are needed to translate knowledge into policy and practice that can be embraced by the public.
Breaking the silence around mental health and HIV
Mental health and HIV remain deeply stigmatised in India, particularly in rural areas. Traditional research methods often overlook the nuances that make or break an intervention, from local cultural norms to the specific emotional burdens carried by those living with HIV. Typically, these models often perpetuate power imbalances, and researchers from outside the community control every aspect of the process. By involving youth with HIV as researchers, the Karnataka study sought to break this silence. Their presence helped normalise conversations about mental health, allowing participants to share their feelings in a non-judgmental environment. CBPR fosters equitable partnerships that treat lived experience as a form of expertise. The youth investigators grew in confidence, gaining not just research skills but also leadership abilities that would benefit them long after the study was over.
The positive lessons from this study in India mirror similar efforts around the world. In the U.S., for example, peer-led research is used to understand mental health challenges in LGBTQ+ youth better, leading to more effective interventions. Community-based research has been used to address substance abuse and chronic disease in Native American populations in the U.S., leading to culturally tailored interventions that resonate more deeply with the community. The idea is simple: when people feel they are part of the solution, they are more likely to embrace it.
It is time to rethink how we conduct research with marginalised or vulnerable populations. Instead of treating communities as passive subjects, we must engage them as partners, recognizing that they hold the key to creating solutions that work. After all, who better to understand the challenges of living with HIV than those who live it every day?
Anita Shet is a Professor at the International Health and Infectious Diseases, Johns Hopkins Bloomberg School of Public Health.
Soumya Swaminathan is the Chairperson of MS Swaminathan Research Foundation and Former Chief Scientist, World Health Organization.