This is the third post in our series, Adolescent Girls, Microbicides, and HIV Prevention Trials. Ms. Doreen Bangapi, community recruitment officer; Ms. Anna Kaale, study coordinator; and Dr. Sylvia Kaaya, local principal investigator, are with Muhimbili University of Healthand Allied Sciences (MUHAS) and work with FHI 360 on the study.
A unique aspect of the trial titled “Adolescents, Women and Microbicide Trials: Assessing the Opportunities and Challenges of Participation,” is the involvement of a youth interactive group (YIG) in various aspects of the research process. The YIG, which is composed of Tanzanian youth ages 20 to 26, was formed as a strategy for involving the community in this study. Community involvement before and throughout HIV prevention trials is essential for a successful trial. Youth are a particularly important group of stakeholders given that this study focuses on adolescent participation in trials. Thus far, YIG members have participated in a research literacy workshop and a study initiation meeting, and they have attended regular meetings where their feedback on various research issues has been solicited. For example, YIG members have provided suggestions and strategies for recruiting study participants, finding high-risk youth to participate, retaining participants in the study, and making our study clinic more youth-friendly and informative.
YIG members have been particularly helpful in the recruitment of study participants. They have helped develop and distribute brochures about the study and they have participated in peer education sessions with potential participants—explaining the study and answering their questions. In a focus group discussion, YIG members told us that challenges to recruitment included participants’ reluctance to admit sexual activity and sexual matters with adults as well as the need for parental support (and perhaps consent) for study participation. Members also said that recruitment was difficult because many youth in the Dar es Salaam area are highly mobile. One YIG member noted, “You find today a young woman is here but some few days later you find she has shifted to another place.”
YIG members felt there were numerous benefits to adolescents and young women participating in the study. Benefits included learning more about sexual health and their risk of HIV/STIs, gaining more opportunities to talk with parents and guardians about HIV and other health issues (particularly for 15-year-olds, who require parental consent to participate), knowing their HIV status, and learning more about the process of evaluating new health products such as microbicides. In addition, YIG members said that study participants might become valuable sources of sexual and reproductive health information within their own peer networks.
Regarding the benefits of their own participation in the research, one YIG participant said, “First of all, I like being part of the YIG of the study because I discover new experiences about reproductive health among girls…and second, I get to know how people know about HIV/AIDS.”