Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Abstract

Objective Adult caregivers provide children living with HIV with varying amounts and types of information about their health status that may affect their coping and health care behaviors. We aimed to describe patterns of information-sharing with children and thoughts around disclosure among caregivers in the Democratic Republic of the Congo. Methods 259 primary caregivers of children 5–17 years old in an HIV pediatric care and treatment program were screened; 8 adult caregivers (3%) had informed their child of the child’s HIV status. We conducted structured interviews with 201 caregivers whose children had not yet been told their HIV status. Results Nearly 50% of caregivers provided no information to their child about their health; 15% had given partial information without mentioning HIV, and 33% provided information that deflected attention from HIV, whether deliberately so or otherwise. Almost all caregivers said that the child should be told their status some day, and three-fourths reported having ever thought about what might lead them to tell. However, nearly one-third of caregivers saw no benefits to informing the child of her/his HIV status. A majority of caregivers felt that they themselves were the best to eventually disclose to the child, but some wanted support from health care providers. Conclusion HIV-infected children are given limited information about their health. Health care providers may serve as important sources of support to caregivers as they decide when and how to talk candidly with their children about their health.

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).…”

“…After receiving the child"s results, parents delay full disclosure of illness to those children (Vaz et al, 2011;Vaz et al, 2010;Vaz et al, 2008). In this study, HIV-negative children encouraged testing of all children post full disclosure of a parent"s illness so they would know their statuses in order to prevent HIV-negative children from becoming infected and to prevent spread to others by HIV-positive children.…”

“…HIV disclosure is a process that moves a child from a state of no disclosure to partial and then to full disclosure of illness. Nondisclosure of illness has been defined as a state in which the child has no knowledge of the illness (BikaakoKajura et al, 2006;Kallem et al, 2011;Oberdorfer et al, 2006;Vaz et al, 2011). In partial disclosure the child has limited details (for example, awareness of daily medication consumption and presence of chronic illness) of the illness (Bikaako-Kajura et al, 2006;Rochat, Mkwanazi, & Bland, 2013;Vaz et al, 2011).…”

“…Nondisclosure of illness has been defined as a state in which the child has no knowledge of the illness (BikaakoKajura et al, 2006;Kallem et al, 2011;Oberdorfer et al, 2006;Vaz et al, 2011). In partial disclosure the child has limited details (for example, awareness of daily medication consumption and presence of chronic illness) of the illness (Bikaako-Kajura et al, 2006;Rochat, Mkwanazi, & Bland, 2013;Vaz et al, 2011). A child with full disclosure is aware that the illness in question is HIV/AIDS (Bikaako-Kajura et al, 2006;Kallem et al, 2011;Rochat, Mkwanazi, & Bland, 2013;Oberdorfer et al, 2006).…”

A Couple’s Marital Disharmony and its Psychological Effects on their Children during the HIV Disclosure Process in Kenya

“…This is more so when there are many family members infected, who may include both parents (Republic of Kenya, 2009). When parents delay disclosure, children sense secrets within their households and ask persistent questions in a bid to elicit disclosure (Brown et al, 2011;Gachanja, 2015;Gachanja et al, 2014a;Gachanja et al, 2014b;Kallem et al, 2011;Kouyoumdjian et al, 2005;Petersen et al, 2010;Vaz, Maman, Eng, Barbarin, Tshikandu, & Behets, 2011). Disclosure is a process that moves children from a state where they have no disclosure or no knowledge of their parents' illnesses (Bikaako-Kajura et al, 2006;Kallem et al, 2011;Oberdorfer et al, 2006;Vaz et al, 2011), to partial disclosure where they know that their parents have a chronic illness or are taking medications (Bikaako-Kajura et al, 2006;Rochat, Mkwanazi, & Bland, 2013;Vaz et al, 2011), and finally to full disclosure when the children are told that their parents are infected with HIV (BikaakoKajura et al, 2006;Kallem et al, 2011;Oberdorfer et al, 2006;Rochat et al, 2013).…”