Parents’ Disclosure of Their HIV Infection to Their Children in the Context of the Family

Abstract

We interviewed 33 HIV-infected parents from the HIV Cost and Services Utilization Study (HCSUS), 27 of their minor children, 19 adult children, and 15 caregivers about the process of children learning that their parents were HIV positive. We summarize the retrospective descriptions of parents’ disclosure of their HIV status to their children, from the perspective of multiple family members. We analyzed transcripts of these interviews with systematic qualitative methods. Both parents and children reported unplanned disclosure experiences with positive and negative outcomes. Parents sometimes reported that disclosure was not as negative as they feared. However, within-household analysis showed disagreement between parents and children from the same household regarding disclosure outcomes. These findings suggest that disclosure should be addressed within a family context to facilitate communication and children’s coping. Parents should consider negative and positive outcomes, unplanned disclosure and children’s capacity to adapt after disclosure when deciding whether to disclose.

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

“…Subsequently, parents and children can support each other (Ishikawa et al, 2011;Kennedy et al, 2010;Madiba & Matlala, 2012;Rwemisisi et al, 2008).…”

“…The successful delivery of full disclosure is crucial to sustaining a good family environment post disclosure, and prior researchers have advocated for parents incapable of performing disclosure on their own to seek help from HCPs, friends, or extended family members (Bikaako-Kajura et al, 2006;De Baets et al, 2008;Heeren et al, 2012;Kennedy et al, 2010;Kouyoumdjian, Meyers, & Mtshizana, 2005;Nam et al, 2009). It is interesting to note that most HIV-positive children preferred to receive disclosure from a HCP trained in disclosure delivery rather than a parent.…”

“…Disclosure of HIV status to children is important for HIV-positive parents, but many are extremely challenged by the disclosure process (Blasini et al, 2004;Delaney et al, 2008;Kallem et al, 2011;Kennedy et al, 2010;Kouyoumdjian, Meyers, & Mtshizana, 2005;Menon et al, 2007;Vallerand et al, 2005;Vaz et al, 2008). HIV disclosure is a process that moves a child from a state of no disclosure to partial and then to full disclosure of illness.…”

Face singular do cuidado familiar à criança portadora do vírus HIV/AIDS

“…Thus, hiding it has three faces: the non exteriorization of HIV/ AIDS, the seropositivity of the mother and child. All with consequences that are difficult to face, demanding care (21) . The time and manner in which the mother and/ or other family member will reveal the diagnosis to the child is of great importance, since the traumas in infancy may compromise its future.…”

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

“…A study by Kennedy (2010), found that, when children learned about their mothers' HIV infection, their reactions varied from manifestations of emotional support and closeness to denial and anger. In that same study, one participant expressed anger toward his father, the source of his mother's HIV infection.…”