Research Article: Caregivers’ Barriers to Disclosing the HIV Diagnosis to Infected Children on Antiretroviral Therapy in a Resource-Limited District in South Africa: A Grounded Theory Study

Date Published: December 10, 2012

Publisher: Hindawi Publishing Corporation

Author(s): Sphiwe Madiba, Kebogile Mokwena.


We used a grounded theory approach to explore how a sample of caregivers of children on antiretroviral treatment (ART) experience HIV disclosure to their infected children. This paper explores caregivers’ barriers to disclosing HIV to infected children. Caregivers of children aged 6–13 years who were receiving ART participated in four focus-group interviews. Three main themes, caregiver readiness to tell, right time to tell, and the context of disclosure, emerged. Disclosure was delayed because caregivers had to first deal with personal fears which influenced their readiness to disclose; disclosure was also delayed because caregivers did not know how to tell. Caregivers lacked disclosure skills because they had not been trained on how to tell their children about their diagnosis, on how to talk to their children about HIV, and on how to deal with a child who reacts negatively to the disclosure. Caregivers feared that the child might tell others about the diagnosis and would be discriminated and socially rejected and that children would live in fear of death and dying. Health care providers have a critical role to play in HIV disclosure to infected children, considering the caregivers’ expressed desire to be trained and prepared for the disclosure.

Partial Text

South Africa has made a remarkable progress in rolling out antiretroviral treatment (ART). In the past seven years the country has established the largest public-sector ART programme in the world, with approximately 919 923 people on treatment by the end of 2009 [1]. As with adults, a considerable progress has been made in providing ART to children; by the end of 2009, about 86 270 children younger than 15 years of age were on ART [2]. With the largest ART programme in the world, South Africa is experiencing significant public health benefits associated with improved treatment. The increasing availability of ART has resulted in more HIV-infected children surviving to older age and adolescence [3]. Similar to well-resourced countries [4, 5], this population of children is now older, healthier, and living with HIV as a chronic illness.

Data described here were collected as part of doctoral grounded theory study conducted in partial fulfilment of the requirements for a doctoral degree from the School of Public Health, University of Limpopo, Medunsa Campus, South Africa. Data were collected between November 2009 and March 2010.

This paper describes caregivers’ barriers to disclose HIV to infected children receiving ART. We found that caregiver readiness to tell influenced HIV disclosure to children in this study. Disclosure was delayed when the caregivers believed that they are not ready to tell the infected child about their HIV diagnosis. The process of the caregivers determining whether or not they are ready to disclose to the infected child is characterized by their struggle to weigh their own perceptions of readiness to tell against the children’s readiness to know. Similarly, Ledlie [30] found that prior to disclosure, caregivers reported that they have to be ready first to tell their infected children the name of their illness. Our findings are also in line with Dematteo and colleagues [31] who argue that, for disclosure of the child’s HIV diagnosis to occur, adults have first to trust in their own readiness and competency to disclose. The data show that the HIV-positive status of the caregiver greatly influenced caregiver readiness to tell. More than half (56%) of the caregivers consisted of HIV-positive biological caregivers of infected children. Data from several studies show that caregivers who disclose early tend to be caregivers who are not biological caregivers of the infected children [12, 13, 30, 32–34]. Disclosure is especially difficult for HIV-infected biological caregivers who may feel responsible and guilty for infecting the child and fear that children may blame them [13, 15, 30, 33, 35]. Furthermore, disclosure is difficult for HIV-infected biological caregivers who might be particularly worried about their children learning of their illness given the stigma associated with the disease [17].

Various children-related reasons were cited by the caregivers for delaying HIV disclosure to infected children. However, the greatest desire for caregivers in this study was to protect their children from discrimination, social rejection, and pain. Discrimination and social rejection, clouded the disclosure process and the fear of discrimination resulted in delaying disclosure to children. Though the data suggest that caregivers delay HIV disclosure in an attempt to protect their infected children, in reality, HIV disclosure to children is delayed to a greater extent to protect the caregivers from their personal fears. Caregiver readiness to tell epitomises disclosure of HIV diagnosis to children in this study, and all of the other fears and barriers around disclosure to children are centred on their readiness. Furthermore, caregiver readiness occurs within the context of the stigma and discrimination related to HIV. It is important to point out that death and dying are also embedded in the context of caregiver readiness to disclose in this study, even after children had been on ART and were asymptomatic.




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