Perceptions and Attitudes Toward Participation in HIV/Aids Clinical Trials Among Adolescents and Young Adults Living With HIV in a Suburban Area of Kampala, Uganda.

Abstract

Background: This study explores the perceptions and attitudes of adolescents and young adults living with HIV (AYALHIV) toward participation in HIV/AIDS clinical trials in a suburban area of Kampala,Uganda. Although clinical trials are essential for advancing HIV treatment, participation rates among adolescents and young adults remain low, particularly in sub-Saharan Africa. Methods: Using a descriptive qualitative approach, the study involved in-depth interviews (IDI’s) and focus group discussions (FGD’s) with AYALHIV aged 13-24 years attending the Joint Clinical Research Centre (JCRC) paediatric clinic in Lubowa. Results: Findings revealed low awareness and knowledge of clinical trials among participants, with most learning about trials through healthcare providers or peers. Major barriers to participation included fear of side effects, practical challenges such as transportation, and concerns about privacy due to HIV-related stigma. However, several facilitators were also identified, such as family and peer support, access to clear information, and a strong sense of altruism among older participants who viewed trial participation as contributing to the broader fight against HIV/AIDS. Conclusions: The study concludes that while there are significant barriers, addressing logistical issues, improving educational outreach, and emphasizing altruistic motivations could enhance participation. Recommendations: Doing targeted educational campaigns, increasing logistical support, and community-based initiatives to reduce stigma and promote trial participation among AYALHIV. By understanding and addressing these factors, future HIV clinical trials can become more inclusive, contributing to more effective research and better health outcomes for adolescents and young adults living with HIV.