Disclosure of HIV diagnosis to HIV-infected children in South Africa: Focus groups for intervention development

Abstract

Worldwide about 2.5 million children younger than 15 years of age are living with HIV, and more than 2.3 million of them live in sub-Saharan Africa. Antiretroviral therapy has reduced mortality among HIV-infected children, and as they survive into adolescence, disclosing to them their diagnosis has emerged as a difficult issue, with many adolescents unaware of their diagnosis. There is a need to build an empirical foundation for strategies to appropriately inform infected children of their diagnosis, particularly in South Africa, which has the largest number of HIV-positive people in the world. As a step toward developing such strategies, we conducted a study in Eastern Cape Province, South Africa to identify beliefs about disclosing HIV diagnosis to HIV-infected children among caregivers, health-care providers, and HIV-positive children who knew their diagnosis. We implemented 7 focus groups with 80 participants: 51 caregivers in 4 groups, 24 health-care providers in 2 groups, and 5 HIV-positive children in 1 group. We found that although the participants believed that children from age 5 years should begin to learn about their illness, with full disclosure by age 12, they suggested that many caregivers fail to fully inform their children. The participants said that the primary caregiver was the best person to disclose. The main reasons cited for failing to disclose were (a) lack of knowledge about HIV and its treatment, (b) the concern that the children might react negatively, and (c) the fear that the children might inappropriately disclose to others, which would occasion gossip, stigmatization, and discrimination towards them and the family. We discuss the implications for developing interventions to help caregivers appropriately disclose HIV status to HIV-infected children and, more generally, communicate effectively with the children to improve their health outcomes.

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

“…Despite parents" resistance and urge to delay full disclosure to their children, both HIV-positive and negative children reported wanting to receive full disclosure in a timely manner. Prior researchers have reported that disclosure to children is the right thing to do and the right of the child (Heeren et al, 2012;Pilowsky et al, 2000;Weiner et al, 1998); the children in this study seem to ask for it.…”

“…Overall, parents appear to favor disclosure at their own time without prompting from HCPs; they did acknowledge needing guidance in the process. Parents have reported requiring guidance during disclosure preparation (Heeren et al, 2012;Nam et al, 2009;Nostlinger et al, 2004;Oberdorfer et al, 2006;Rwemisisi et al, 2008;Vallerand et al, 2005;Vaz et al, 2010;Vaz et al, 2008). Prior researchers have called for discussions to occur between HCPs and parents to resolve differences that occur when…”

“…As recommended by participants in this and another study (Heeren et al, 2012), full disclosure should be a process starting with limited information at 5 years of age. One parent expressed that his 5 and 7-year-old children with full disclosure of their illnesses did not understand what it meant.…”

“…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.…”

“…Recent studies on disclosure to HIV-positive children have revealed HIV disclosure rates between 2-50% in Kenya (John-Stewart et al, 2013;Turissini et al, 2013;Vreeman et al, 2010;Vreeman et al, 2014); and 2-38% in other SSA countries (Biadgilign et al, 2011;Bikaako-Kajura et al, 2006;Brown et al, 2011;Feinstein et al, 2010;Fetzer et al, 2011;Hejoaka, 2009;Kallem et al, 2011, Menon et al, 2007Moodley et al, 2006;Vaz et al, 2010). Research suggests that the typical age ranges of HIV-positive children receiving disclosure of their own HIV status was between 3 and 19 years in Kenya (Vreeman et al, 2014); 8 and 18 years in the Democratic Republic of Congo (Vaz et al, 2010;Vaz et al, 2008); and 5 and 15 years in South Africa (Heeren et al, 2012;Moodley et al, 2006).…”