“A sense of joy and responsibility”: an assessment of adolescent and young adult research partners’ engagement on a digital citizen science HIV intervention in Kazakhstan

Citizen science approaches, which engage the public in scientific research tasks, can empower adolescents and young adults (AYA) to generate ideas that solve problems in their communities. However, little is known about why AYA choose to partner on HIV citizen science studies, their experiences, or the impact of engagement. This study assessed AYA partners' engagement as Youth Research Collaborators (YRC) on a citizen science HIV stigma reduction intervention in Kazakhstan. Nineteen YRC (ages 15-29) completed reflective interviews focused on the relevance of the research, perceptions of their experience, impacts, and recommendations for future studies. Partnering on an HIV citizen science study was culturally and personally relevant to YRC. Most enjoyed the autonomy to implement their ideas and influence decisions, though some worried about their ability to make useful contributions. In general, YRC felt valued and supported as members of the research team. Impacts included gains in knowledge, skills, professional benefits, emotional fulfillment, and gratitude for the potential to make an altruistic contribution. Recommendations for future studies included ways to expand citizen science projects and increase accessibility for AYA from diverse backgrounds. Findings suggest that assessing AYA engagement in participatory studies can increase research accountability and provide insights that improve partnerships.