The care to share HIV disclosure study - the attitudes toward and beliefs about HIV disclosure among perinatally-infected HIV-positive youth and their caregivers

HIV incidence has not changed since the introduction of the pandemic. Daily 14,000 persons are infected with HIV and 25 to 50% of the HIV-infected population and subgroups respectively are estimated to be unaware of their HIV diagnosis. Perinatally-infected HIV-positive youth, aged 13-24 years, have survived unexpectedly into adulthood, have had unique HIV disclosure experiences and now face HIV disclosure issues of adulthood and perhaps parenthood. Despite new effective HIV therapies, no HIV prevention plan exists that has diminished the rate of new HIV infections. HIV stigma and lack of universal HIV reporting laws dissuade timely HIV disclosure. Missed HIV disclosure perpetuates HIV transmission and infection. Understanding the attitudes and beliefs of HIV disclosure among perinatally-infected HIV-positive youth and their caregivers may uncover reasons to HIV disclosure delays, avoidance and intentions. The Care to Share HIV Disclosure study was designed to identify the attitudes and beliefs of HIV disclosure among HIV-positve youth (aged 13-24 years), who were infected from birth and who knew their HIV diagnosis, along with their caregivers. Twenty-six participants (15 youth and 11 caregivers) completed the theory-based questionnaires of a 21-item multiple choice survey on HIV disclosure framed in the Theory of Reasoned Action and Theory of Planned Behavior and included an additional open-ended survey that applied the Transactional Model of Stress and Coping to address youth's and caregivers' HIV disclosure experiences. Youth were found to have a selective unfavorable HIV disclosure outcome when among referents of close friends. However youth did believe in HIV partner notification. For caregivers, it mattered who disclosed the HIV illness to the youth. HIV stigma was of concern based on the youths' tendency to believe in keeping HIV a secret and their caregivers' ambivalence to HIV secrecy. However, favorable HIV disclosure outcomes were identified for both youth and caregivers the potential for HIV disclosure: when seeking HIV knowledge, when around caregivers and close family and in situations of perceived controllability as when helping others learn about HIV. These findings unveil HIV disclosure attitudes and beliefs within this population and may reveal the attributes that may inhibit or promote HIV disclosure behaviors. HIV disclosure studies that address attitudes and beliefs among larger populations of youth and HIV-infected persons are necessary to identify effective individual, group and society approaches that would promote timely, responsible and meaningful HIV disclosure methods that promote a healthy identity and interrupt HIV transmission.^