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

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.

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    ABSTRACT: The perspectives and practices of health care workers (HCWs) regarding disclosure to HIV-infected children have not been adequately investigated ten years after the roll-out of pediatrics antiretroviral therapy (ART). The aim of the study was to examine the opinions of HCWs about disclosure to HIV-infected children and determine their role in disclosure to children accessing ART in health centers in South Africa. This was a cross-sectional survey using a semi-structured questionnaire among HCWs in ART centers at three hospitals and 48 primary health facilities in two provinces in South Africa. Of the 206 HCWs, 140 (68.2%) were nurses, 44 (21.5%) were lay counsellors, and 4 (2%) were doctors. The majority (n = 183, 89.3%) felt that disclosure benefits children and they should be told about their HIV status. Over half (n = 93, 51.4%) recommended 11-18 years as the appropriate age to disclose. Half (n = 99, 48.5%) said that caregivers should take the lead to disclose, 87 (42.7%) said that disclosure is a shared responsibility of caregivers and HCWs, and 18 (8.8%) said HCWs should lead disclosure. HCWs perceived their role as that of preparing the caregiver for disclosure and the child to understand the disease. However, the lack of guidelines and training on disclosure counselling for children affects their ability to fully participate in disclosure to children. There is a need to adopt the World Health Organizations' disclosure guidelines for children and adapt them to the local cultural and community contexts and train HCWs to guide, support, and assist caregivers in their disclosure to HIV-infected children.
    01/2015; 3:e893. DOI:10.7717/peerj.893
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    ABSTRACT: Ninety percent of the 3.4 million HIV-infected children live in sub-Saharan Africa. Their psychosocial well being is fundamental to establishing and maintaining successful treatment outcomes and overall quality of life. With the increased roll-out of antiretroviral treatment, HIV infection is shifting from a life-threatening to a chronic disease. However, even for paediatric patients enrolled in care and treatment, HIV can still be devastating due to the interaction of complex factors, particularly in the context of other household illness and overextended healthcare systems in sub-Saharan Africa.This article explores the negative effect of several interrelated HIV-specific factors on the psychosocial well being of HIV-infected children: disclosure, stigma and discrimination, and bereavement. However, drawing on clinical studies of resilience, it stresses the need to move beyond a focus on the individual as a full response to the needs of a sick child requires support for the individual child, caregiver-child dyads, extended families, communities, and institutions. This means providing early and progressive age appropriate interventions aimed at increasing the self-reliance and self-acceptance in children and their caregivers and promoting timely health-seeking behaviours. Critical barriers that cause poorer biomedical and psychosocial outcomes among children and caregiver must also be addressed as should the causes and consequences of stigma and associated gender and social norms.This article reviews interventions at different levels of the ecological model: individual-centred programs, family-centred interventions, programs that support or train healthcare providers, community interventions for HIV-infected children, and initiatives that improve the capacity of schools to provide more supportive environments for HIV-infected children. Although experience is increasing in approaches that address the psychosocial needs of vulnerable and HIV-infected children, there is still limited evidence demonstrating which interventions have positive effects on the well being of HIV-infected children. Interventions that improve the psychosocial well being of children living with HIV must be replicable in resource-limited settings, avoiding dependence on specialized staff for implementation.This paper advocates for combination approaches that strengthen the capacity of service providers, expand the availability of age appropriate and family-centred support and equip schools to be more protective and supportive of children living with HIV. The coordination of care with other community-based interventions is also needed to foster more supportive and less stigmatizing environments. To ensure effective, feasible, and scalable interventions, improving the evidence base to document improved outcomes and longer term impact as well as implementation of operational studies to document delivery approaches are needed.
    AIDS (London, England) 11/2013; 27 Suppl 2:S147-57. DOI:10.1097/QAD.0000000000000098 · 6.56 Impact Factor
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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.
    01/2014; 2:e486. DOI:10.7717/peerj.486

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