Reconstructing the truth: Life experiences of Puerto Rican perinatally HIV-infected youth with disclosure

Background: The lives of perinatally HIV-infected (pHIV-I) youth have been cloaked in silence and secrecy.  PHIV-I youth are rarely informed about their illness on a timely manner.  Disclosure events happen in several moments during their lifetime.

Methods:  A phenomenological study was used to explore the life experiences of pHIV-I youth in Puerto Rico.  Twenty in-depth interviews with 12 women and 8 men aged 18-30 years were conducted and audio-recorded.  Questions exploring their experience with disclosure were asked.  Data were analyzed using NVIVO.  Interrelationships, connection and patterns were assessed.

Results: Sixteen of the 20 participants recalled the age when their HIV diagnosis was revealed.  Thirteen participants learned about their diagnosis in their primary care program.  Others did not recall how they learned their diagnosis.  Knowing their HIV diagnosis meant a greater understanding of the disease. They became aware of the social implications of having HIV, which they have to bear as they transition to adulthood. For some, the news was completely unexpected and shocking.  All of them agreed on the importance of knowing their HIV-status.  Opinions varied regarding timing for disclosure.

Conclusion:  Participant’s experiences learning about their HIV status shaped their perceptions towards disclosing to others.  Delaying disclosure causes them anxiety and stress. All participants agreed that knowing the truth was best.  After periods of denial and subsequently, acceptance, they reported greater adherence.  Disclosure policies and practices must take into account pHIV-I youth’s needs and desires so that they can be active participants in their care.