Prevalence and Factors Associated with Disclosure of HIV Diagnosis to Infected Children Receiving Antiretroviral Treatment in Public Health Care Facilities in Gauteng, South Africa

In the past six years, South Africa has established the largest paediatric antiretroviral programme in the world, with an estimated coverage of 81% of children in need of antiretroviral therapy (ART) by the end of 2009 ¹. The increased access to ART in South Africa resulted in an increase in the survival time of adults and children living with HIV ². With increased access to ART, HIV infected children are surviving to older ages, and disclosure has become an essential part of their comprehensive medical care ³. However, data from studies conducted in developing countries show that many HIV infected children on ART do not know their HIV diagnosis ^{4, 5, 6, 7, 8, 9}. Furthermore, available data on HIV disclosure to infected children from studies conducted in developed and developing countries do not explain the low disclosure rates ^{10, 11, 12}. Literature further shows that, most studies on the prevalence and effects of HIV disclosure to children are mainly from developed countries ^{13, 14}.

Disclosure has been shown to have positive effects on the clinical course of the disease, an important implication for the success of ART ^{7, 10, 12, 15, 16}. However, despite the growing evidence of the benefits of disclosure from developed countries ¹⁷, disclosure to HIV infected children in developing countries continues to be delayed until older childhood ^{9, 18, 19}. Due to the increasing access to ART, most HIV infected children who started ART in public health facilities in South Africa, have survived to older age. As a consequence, health care providers are currently faced with the challenge of providing HIV care to an increasing population of children who have not been informed of their HIV diagnosis. There are limited data on what influences caregivers’ disclosure of HIV diagnosis to their infected children in South Africa. Available data on HIV disclosure to children were collected much earlier in the provision of ART in South Africa ¹¹. This study sought to (a) determine the characteristics of the caregivers of pediatric HIV patients in Gauteng, South Africa, (b) estimate the prevalence and timing of HIV disclosure among these patients, and (c) assess the factors associated with disclosure status.

The study determined the prevalence and factors associated with disclosure among children aged between 4–17 years enrolled in the ART programme of two HIV clinics in Gauteng province, South Africa. The prevalence of disclosure in our sample was 34%, much higher than the 9% previously reported with children on ART in a similar setting in Cape Town, South Africa ¹¹. This study collected data six years after the roll out of ART whereas the study conducted by Moodley and colleagues collected data within the first year of the roll out of ART to children. Previously, Thorne and colleagues attributed higher prevalence of disclosure to HIV infected children to the increasing use of ART in developed countries ²³. The current data presented here are from two paediatric HIV clinics and were collected a year apart. When calculated individually, there was a significant difference between the prevalence of the two samples. The prevalence increased from 29.9% to 39.9% in one year. The samples were comparable in terms of the mean age of the children as well as the mean age of the caregiver and caregiver relation to child.

Our findings are comparable with prevalence of HIV disclosure from some studies conducted in developing countries. Oberdorfer and colleagues reported prevalence of 30.1% in Thailand ¹², and Bikaako-Kajura and colleagues reported a prevalence of 29% in Uganda ⁶. Meanwhile, our estimated prevalence of HIV disclosure was higher than that reported in other studies conducted with caregivers of HIV infected children. Kallem and colleagues reported prevalence of 21% in Ghana ⁷, while Biadgilign and colleagues reported prevalence of 17.4% in Ethiopia ⁵. Published prevalence of HIV disclosure in children from the United States, Canada, and Europe show that between 18–77% of HIV infected children had been told their HIV diagnosis ¹⁷.

Factors that were statistically significant associated with disclosure were the age of the child, diagnosis age of the child, caregiver relation to child, caregiver age, and caregiver level of education. Older child age was identified as a determining factor for disclosure, children older than 10 years were more likely to be disclosed than those younger than 10 years. The association between HIV disclosure and older age of the child has been documented in studies conducted in developing countries ^{7, 11, 12}, and in well developed countries ¹⁷. Our findings are consistent with previous studies showing that children younger than 6 years were least likely to be told their HIV diagnosis ⁹. In our study only nine out of 99 children were younger than 6 years when they were told their diagnosis. Caregivers delay disclosure till older age because they believe that at early age, the child does not have the maturity needed to understand the disease ^{10, 24, 25}.

The mean age of disclosure in this study was 9.35 years and is comparable to other studies in developing countries ^{7, 11}, but much lower than the mean age of 13.6 and 15 years reported in Thailand and Congo respectively ^{8, 12}. Nevertheless, the mean age of disclosure in our study falls within the range of 5 to 14 years reported in several studies in developed countries ^{18, 20, 26, 27}. Children were also more likely to be disclosed if they were older than 10 years when they were diagnosed with HIV as compared to children diagnosed earlier than 10 years.

However, almost a third (29.7%) of 11-17 years-olds did not know their HIV diagnosis, implying that a number of children in this setting enter adolescence without important information regarding their illness as well as their HIV diagnosis. Age at disclosure in studies conducted in developing countries varies between 11-16 years, and most caregivers delay disclosure to 14 years and above ^{28, 29, 30, 31}. The older age of children who are not informed of their HIV diagnosis, suggests that despite increased access to ART, there are still significant barriers to discussing HIV with infected children in these settings

The highest proportion of care givers in this study were biological mothers who made up half of the caregivers. The increased representation of biological mothers is attributed to the increased access to PMTCT and increased survival time of adults on ART ². Although biological mothers were in the majority, nonbiological caregivers were more likely to disclose the child’s HIV status than biological caregivers. This finding is in line with previous studies highlighting that nonbiological caregivers tend to disclosure soon after learning about the HIV diagnosis of the child ^{16, 23, 26, 32, 33}. Studies show that disclosure is particularly difficult for HIV infected biological parents who may be responsible for the infection of the child ^{23, 26, 32}.

In this study older caregivers were more likely to disclose the child’s HIV status than younger caregivers. In South Africa, the impact of HIV and AIDS has led to older people becoming primary caregivers of children infected or affected by HIV and AIDS. About a quarter (26.3%) of children in this study were informed about their HIV diagnosis by grandparents. We also found that the level of education of the caregiver was statistically significant to HIV status disclosure. In this study caregivers with a higher educational level were less likely to disclose HIV to infected children than caregivers with primary education. The association between HIV disclosure educational status of the caregiver were documented in a study conducted in Ethiopia ⁴.

The study had some limitations; caregiver reports of HIV status disclosure might have been affected by social desirability, and they might have said they disclosed when they hadn't truly disclosed. Secondly, our findings outcome measurement is assessed based on self-reports by the caregivers and may have resulted in recall bias, caregivers might not remember the child’s age at disclosure or age at diagnosis. The study was cross-sectional and could not establish the process and circumstances leading to disclosure, we recommend more studies be conducted to answer these questions. Further studies are needed to determine whether our findings are representative of the situation in Gauteng province in South Africa.

The prevalence of disclosure among our study population was 34%. Children older than 10 years of age, the level of education of the caregiver, age of the caregiver, nonbiological relation to child were significantly associated with disclosure of HIV-positive status to HIV infected children. In addition, a relatively high proportion of children were entering adolescence without knowing their HIV diagnosis. These findings have implications for health care providers working in paediatric HIV services. It is important that health care providers are cognisant of the factors to develop interventions to facilitate HIV disclosure to infected children. Informing children about their HIV diagnosis is an essential step in preventing secondary HIV transmission.

This research was partially funded by AAU Grants for Graduate Research and Scholarship and the Vlaamse Interuniversitaire Raad (VLIR) Institutional University Cooperation (IUC). We thank Mr Abram Maubane and Mr Nick Maubane the research assistants as well as Ms Chidi Matlala an MPH intern for their role in data collection. We also thank health care providers from the paediatric clinics of Doctor George Mukhari and Odi hospital for their guidance and assistance during data collection.

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