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Background  HIV testing among adolescents is significantly lower than among adults and many adolescents living with HIV do not know their status. Adolescent perceptions of HIV testing are poorly understood and may negatively affect testing uptake. Using a qualitative design, this study sought to explore perceptions about HIV testing and treatment among adolescents living with HIV and adolescents of unknown HIV status in Lusaka, Zambia and Kenya.    Methods  Study participants were adolescents aged 15–19 years old. The adolescents living with HIV were recruited from HIV support groups at health facilities. Adolescents of unknown HIV status were recruited from existing adolescent groups within the community. In both Zambia and Kenya, four focus group discussions (FGDs) were conducted with adolescents living with HIV and four FGDs were conducted with adolescents whose HIV status was unknown, for a total of 16 FDGs. FGDs consisted of 6–12 participants, a moderator, and a note-taker. FGDs were audio-recorded, transcribed, and translated into transcripts. Transcripts were coded in the qualitative analysis software program MAXQDA v. 12. Data reduction and summary tables were generated to help identify themes across the two study population groups. Data were interpreted within the health belief model.    Results  Adolescents discussed the challenges of facing a positive HIV test result, including fear of a positive result and need to change their lifestyle, fear of social isolation, and perception of the lost opportunity to achieve future dreams. Most adolescents of unknown status were not as aware of the benefits of learning their HIV status, nor were they aware of the ability to live a long and healthy life on ART. HIV-positive adolescents reported that the messages targeted towards adolescents focus on the need to remain HIV-negative, as opposed to the benefits of knowing one’s status. Adolescents described age and requirements for parental permission as a significant limitation in their ability to access HIV testing.    Conclusions  Adolescents require more information about the benefits of testing early and the ability to live a long and healthy life on ART. Educating adolescents that HIV testing is a normative behavior among their peers could strengthen HIV testing among adolescents.    Supplementary Information  The online version contains supplementary material available at 10.1186/s12889-021-10391-x.

bmc public health

“When you have a high life, and you like sex, you will be afraid”: a qualitative evaluation of adolescents’ decision to test for HIV in Zambia and Kenya using the health belief model