Disclosure of an HIV Diagnosis to Children: History, Current Research, and Future Directions

Abstract

Disclosing the diagnosis of human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS) to a child is a controversial and emotionally charged issue amongst both the health care communities and parents and caregivers of these children. This paper provides a systematic review of research on disclosure of pediatric HIV infection. The paper begins with a brief discussion of disclosure drawing from research on pediatric cancer. Next, we review the available research including patterns of disclosure, factors associated with disclosure and non-disclosure, and the effect of disclosure on psychological health and adherence. A review of published intervention studies is also included. While no consensus on when the diagnosis of HIV should be disclosed to a child or the psychological outcomes associated with disclosure was found, clinical consensus on several issues related to working with families was identified. We apply this literature to clinical practice and suggest avenues and directions for future research.

HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

“…Imminent onset of sexual activity in children has been shown to prompt full disclosure to children (Oberdorfer et al, 2006;Vaz et al, 2011;Vaz et al, 2008;Wiener et al, 2007) especially to prevent asymptomatic infected children from infecting others (Kallem et al, 2011;Siripong et al, 2007;Vaz et al, 2011). The recommended ages of 10-14 years for full disclosure from participants in this study are achievable if HCPs recommend parents test all their children soon after the parent is diagnosed as being HIV-poistive (Rwemisisi et al, 2008;Were et al, 2006).…”

Adherence to the Treatment of Children Living with HIV: A Conceptual Analysis

“…Ao entender a infecção pelo HIV, ela passa a dar sentido à doença, relacionando-a com suas próprias experiências e à importância da necessidade de seguir a terapia preconizada (9,10,22,23,31).…”

“…Por várias razões, ao se atribuir a responsabilidade de administração da terapia antirretroviral às próprias crianças, sem a supervisão dos pais ou responsáveis, torna-se praticamente improvável que elas completem o esquema com sucesso (23,46). Assim, estimular o envolvimento do cuidador no tratamento, tentando compreender o que o impede de realizar a tarefa de administração dos medicamentos à criança e o que o ajuda a ter sucesso, pode ser crucial para o desenvolvimento de intervenções passíveis de promover uma adesão eficaz (46).…”

Informing Adolescents of Perinatally Contracted HIV

“…Caregivers identify concerns about unplanned, circumstantial disclosure, HIV transmission, disease progression, interest in a closer, more trusting relationship with the youth, and the respect for the youth's right to know as reasons for disclosing [7,8]. With the disclosure, youth are further given the opportunity to identify role models, voice their needs more effectively, and gain experience in disease management by interaction with other HIV-positive peers.…”