“HIV status disclosure motivations among youth living with HIV in rural Kenya and Uganda: ‘You can’t just trust everyone.’”

Johnson-Peretz J, Onyango A, Akatukwasa C et al. (2025). SSM-Qualitative Research in Health.

“It was so hard for me to tell mother, although I later did. The health providers had always asked me for her telephone number so as to tell her how I was found HIV positive, but I persistently refused to provide it to them, because I never wanted her to know my status. But later I realised it was wrong telling outsiders and not telling my parent.” 17 y.o. female, Uganda 

“I have disclosed to one of my friends who is also HIV positive, though I did not know she was equally infected when I started disclosing. … When I told her what had happened she also disclosed her status to me. … I chose to disclose to her because it is good to share issues with people who you are close to and would understand your situation. They can also be able to share their experiences with you and you can also tell them what you have learnt.” 20 y.o. female, Kenya

Synopsis: An analysis of motivations and barriers to HIV status disclosure among adolescents and young adults with HIV, with attention to targets/confidants, contexts, and communication strategies. Data drawn from semi-structured interviews conducted with youth living with HIV, their providers, and selected family members during a longitudinal study in East Africa. 
Key Findings: Disclosure of antiretroviral therapy (ART) use appeared to present more significant hurdles than disclosure of HIV status alone. Medication bottles or pills often provided a contextual opening for disclosure conversations. Social roles and expectations influenced HIV status disclosure motivations among AYAH, including filial piety towards parents, spontaneous reciprocity with friends, and conscientiousness towards school supervisors. 
Recommendations: Encouraging not only HIV status disclosure but HIV treatment disclosure may facilitate support for ART adherence. Tailoring disclosure strategies to particular target-confidant types may help youth disclose more easily and validate their social values and chosen ties while supporting successful care engagement.