Disclosure of Their HIV Status to Infected Children: A Review of the Literature

Abstract

Since the introduction of highly active antiretroviral therapy (ART) in 1996, HIV-infected children often survive beyond adolescence. To assess worldwide trends in disclosure since ART was introduced, we reviewed articles that refer to disclosure of their status to HIV-infected children, and which described patient, health care provider and/or caregiver opinions about disclosure and/or reported the proportion of children who knew their diagnosis. Most studies (17 [55%]) were performed in low- or middle-income (LMI) countries. In the 21 articles that included information on whether the children knew their status, the proportion who knew ranged from 1.2 to 75.0% and was lower in LMI (median = 20.4%) than industrialized countries (43%; p = 0.04). LMI country study participants who knew their status tended to have learned it at older ages (median = 9.6 years) than industrialized country participants (median = 8.3 years; p = 0.09). The most commonly reported anticipated risks (i.e. emotional trauma to child and child divulging status to others) and benefits (i.e. improved ART adherence) of disclosure did not vary by the country's economic development. Only one article described and evaluated a disclosure process. Despite recommendations, most HIV-infected children worldwide do not know their status. Disclosure strategies addressing caregiver concerns are urgently needed.

Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda

“…The finding that disclosure had often been handled by health workers supports evidence suggesting that carers struggle to discuss disclosure of HIV status with the children in their care (Pinzón-Iregui et al, 2013). Similar to other studies, carers fear the psychological effects and social stigma they perceived might follow from disclosure (Vaz et al, 2008, Vreeman et al, 2010, Mburu et al, 2014.…”

“…For example, a review of global data found a lower proportion of children that knew their status in low or middle income countries compared to industrialised countries (Pinzón-Iregui et al, 2013).…”

Disclosure of HIV Status to Perinatally Infected Adolescents in Urban Uganda: A Qualitative Study on Timing, Process, and Outcomes

“…In both low-and highresourced countries, rates of disclosure to children and adolescents remain varied, but they are lower in low-resourced countries compared to highresourced countries (Pinzon-Iregui, Beck-Sague, & Malow, 2013). In addition to the differences in disclosure rates between low-and high-resourced countries, there are marked disparities in age at disclosure, as disclosure typically occurs later (generally delayed to 12 years or later) in low-resourced countries (Pinzon-Iregui et al, 2013).…”

“…Barriers to disclosure include caregiver concerns about a child's cognitive ability to understand the full implications of an HIV diagnosis, the psychosocial impact of disclosure, and the child's ability to maintain confidentiality about their status; fear of stigma and discrimination; caregiver desire for the child to live a normal childhood; parental guilt about infecting the child; discomfort talking about HIV; and fear of anger, blame, rejection, or loss of respect (Domek, 2010;Funck-Brentano et al, 1997;Pinzon-Iregui et al, 2013;Mellins et al, 2002;Miah, 2004;Rwemisisi, Wolff, Coutinho, Grosskurth, & Whitworth, 2008;Wiener et al, 2007).…”

Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

“…Unlike children with other chronic diseases, perinatally-infected children are less likely to be told about their illness (Hardy et al, 1994 as cited in Lesch et al, 2007). Worldwide, only a minority of perinatally HIV-infected children know their status; although disclosure is more common in industrialized than in low-and middle-income countries, even in the former, only 30%-40% know (Pinzón-Iregui, Beck-Sagué & Malow, 2013). In the UPR Pediatric HIV/AIDS Research Program, prior to the introduction of the disclosure initiative, 80% of children had received partial, deceptive or no information about their diagnosis .…”