Disclosure of HIV Diagnosis to HIV-Infected Children in South Africa: Focus Groups for Intervention Development.

University of Pennsylvania.
Vulnerable Children and Youth Studies 03/2012; 7(1):47-54. DOI: 10.1080/17450128.2012.656733
Source: PubMed


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.

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    • "HCPs or close family members; this has been confirmed in prior research (Bikaako-Kajura et al., 2006; De Baets et al., 2008; Heeren et al., 2012; Kennedy et al., 2010; Kouyoumdjian et al., 2005; Nam et al., 2009). HIV-negative children agreed with parents, expressing they preferred to receive full disclosure from their parents or close family members such as older siblings or aunties. "
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    ABSTRACT: HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. The purpose of the study was to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children completed semistructured, in-depth interviews. Data were analyzed using the Van Kaam method; NVivo 8 software was used to assist data analysis. We present data on the process of disclosure based on how participants recommended full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at five years with full disclosure delivered at 10 years when the child was capable of understanding the illness, or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important considerations at the time of full disclosure included the parent's and/or child's health statuses, number of infected family members' illnesses to be disclosed to the child, child's maturity and understanding level, and the person best suited to deliver full disclosure to the child. The results also revealed it was important to address important life events such as taking a national school examination during disclosure planning and delivery. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs in resource-poor nations with high HIV prevalence.
    Full-text · Article · Jul 2014 · PeerJ
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    • "Our data revealed a lack of self-efficacy among caregivers; most felt that they lacked the skill to adequately communicate with their children about their HIV status and to deal with the anticipated negative reactions. Similar to other studies, caregivers frequently anticipated a need, and expressed a desire, for professional support when the time for disclosure comes [19], [33], [40], [41]. "
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    ABSTRACT: Disclosure of the diagnosis of HIV to HIV-infected children is challenging for caregivers. Despite current recommendations, data suggest that levels of disclosure of HIV status to HIV-infected children receiving care in resource-limited settings are very low. Few studies describe the disclosure process for children in these settings, particularly the motivators, antecedent goals, and immediate outcomes of disclosure to HIV-infected children. This study examined caregivers' perception of the disclosure concept prior to disclosure, their motivation towards or away from disclosure, and their short- and long-term intentions for disclosure to their HIV-infected children. In-depth interviews were conducted with primary caregivers of 40 HIV-infected children (ages 5-15 years) who were receiving HIV care but did not know their HIV status. Caregivers of HIV-infected children mainly perceived disclosure as a single event rather than a process of gradual delivery of information about the child's illness. They viewed disclosure as potentially beneficial both to children and themselves, as well as an opportunity to explain the parents' role in the transmission of HIV to the children. Caregivers desired to personally conduct the disclosure; however, most reported being over-whelmed with fear of negative outcomes and revealed a lack of self-efficacy towards managing the disclosure process. Consequently, most cope by deception to avoid or delay disclosure until they perceive their own readiness to disclose. Interventions for HIV disclosure should consider that caregivers may desire to be directly responsible for disclosure to children under their care. They, however, need to be empowered with practical skills to recognize opportunities to initiate the disclosure process early, as well as supported to manage it in a phased, developmentally appropriate manner. The potential role for peer counselors in the disclosure process deserves further study.
    Full-text · Article · Mar 2014 · PLoS ONE
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    • "In this context, the importance and potential effects of disclosure of an adolescent's HIV-positive status to him/her, and of disclosure by the adolescent to others, have drawn the interest of researchers. Recent studies have sought to identify patterns, models, barriers and consequences of disclosure among adolescents living with HIV [4, 5]. "
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    ABSTRACT: Introduction As adolescents living with HIV gain autonomy over their self-care and begin to engage in sexual relationships, their experiences of being informed about their HIV status and of telling others about their HIV status may affect their ability to cope with having the disease. Methods In 2010, we conducted a qualitative study among adolescents aged 10–19 living with HIV in Zambia, and with their parents and health care providers. Through interviews and focus group discussions, we explored the disclosure of HIV status to adolescents living with HIV; adolescents’ disclosure of their status to others; and the impact of both forms of disclosure on adolescents. Results Our study identified three main barriers to disclosure of HIV status: local norms that deter parents from communicating with their children about sexuality; fear of HIV stigma; and an underlying presumption that adolescents would not understand the consequences of a HIV diagnosis on their lives and relationships. With regard to adolescents’ disclosure of their HIV status to their sexual partners, our study identified fear of rejection as a common barrier. In rare cases, open family conversations about HIV helped adolescents come to terms with a HIV diagnosis. Findings indicated that disclosure had various outcomes at the individual and interpersonal levels. At the individual level, some adolescents described being anxious, depressed and blaming themselves after being told they had HIV. At the interpersonal level, disclosure created opportunities for adolescents to access adherence support and other forms of psychosocial support from family members and peers. At the same time, it occasionally strained adolescents’ sexual relationships, although it did not always lead to rejection. Conclusions There is a need for public health interventions that guide adolescents living with HIV, their parents and families through the disclosure process. Such interventions should help parents to assess and understand the evolving cognitive capacity and maturity of their adolescents in order to determine the appropriate time to inform them of their HIV-positive status. Such interventions should also mitigate the risk of HIV stigma, as well as local norms that may prevent discussions of sexuality within families. Adolescents who have been informed of their HIV status should be provided with on-going support to prevent disclosure from negatively affecting their psychological and sexual wellbeing. Further research is needed to explore the potential role of trusted family members in contributing to the disclosure process.
    Full-text · Article · Mar 2014 · Journal of the International AIDS Society
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