Psychosocial Implications of HIV Serostatus Disclosure to Youth with Perinatally Acquired HIV

Abstract

Recommendations suggest that older children and adolescents perinatally infected with HIV (PHIVþ) be informed of their HIV diagnosis; however, delayed disclosure is commonly reported. This study examined the prevalence and timing of HIV disclosure to PHIVþ adolescents and the associations between the timing of disclosure and psychological functioning and other behavioral outcomes. Recruitment took place at four medical centers in New York City between December 2003 and December 2008. This sample included data from 196 PHIVþ youth and their caregivers: 50% of youth were male, 58% African American, 42% Hispanic, with a mean age of 12.71 years. According to caregiver reports, 70% of the PHIVþ youth knew their HIV diagnosis. Youths who had been told were more likely to be older; youths with a Spanish-speaking Latino caregiver and whose caregivers had a grade school education were told at an older age. Youths who had been told their HIV status were significantly less anxious than those who had not been told; there were no other differences in psychological functioning. Youths who knew their status for longer reported higher intentions to self-disclose to potential sex partners. In multivariate analyses only demographic differences associated with timing of disclosure remained. In summary, PHIVþ youth who had been told their HIV status did not show an increase of psychological problems and were more likely to have intentions to self-disclose to sexual partners. Yet, almost one third was entering puberty without important information regarding their illness. Caregivers need support to address factors impeding HIV disclosure.

Impact of Antiretroviral Therapy on Quality of Life in HIV-Infected Southeast Asian Children in the PREDICT Study

“…25 Youth with perinatally acquired HIV who had been told their HIV status did not show an increase of psychological problems and had less anxiety than those who had not been told. 26 There are limited data of HIV disclosure status on QOL in HIV-infected children. In our study, the proportion of HIV disclosure status did not correlate with change of QOL scores, which is in agreement with another published report.…”

Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa

“…Nonetheless, these studies were conducted before the roll out of ART to children in South Africa. Although disclosure has become part of the comprehensive care of HIV infected children in South Africa, caregivers and health care providers continue to struggle with disclosure to HIV infected children till later in adolescence [6,8,24,25]. The most common reasons for delaying disclosure include; fear of hurting the child, that the child is too young to understand, fear that the child will not be able to keep the secret and will be socially rejected and discriminated, fear that disclosure will have negative emotional consequences for the children, and because caregivers believed that they did not know how to tell or how to approach the disclosure process [5,12,17,26,27].…”

Pediatric HIV Disclosure: A Process-Oriented Framework

“…As the discussion of naming HIV to the child nears, caregivers may feel more resistant to full disclosure. Therefore, this phase is important to reiterate to the caregivers that children who have undergone full disclosure have significantly less anxiety than those who have not undergone full disclosure (Santamaria et al, 2011). If the caregiver and provider agree that the child has a strong foundation of health information and is developmentally ready to proceed with further disclosure, the provider moves forward with Stage 5.…”

“…After determining that the child has adjusted positively to the disclosure, review sessions begin incorporating information regarding transmission. Evidence supports the view that the longer a child is aware of disease status, the greater is the likelihood of disclosing viral status to partners (Santamaria et al, 2011). To enhance transparency and promote positive sexual behaviors in youth, Stage 10 of the education process is essential when discussing the long-term implications of HIV.…”

“…The Piagetian theory asserts that even young children can understand concepts of health and illness, and the longer children are aware of their HIV status, the more likely they are to disclose their status to their sexual partners, thus preventing the spread of HIV (Butler et al, 2009;Santamaria et al, 2011). Although evidence supports timely disclosure, the disclosure process is daunting for caregivers who have suffered from HIV-related stigma and discrimination, guilt of viral transmission, and grief as a result of loss from HIV (Lesch et al, 2007).…”