Prevalence and factors associated with disclosure of HIV diagnosis to infected children receiving antiretroviral treatment in public health care facilities in Gauteng , South Africa

HIV infected children who started antiretroviral therapy (ART) in public health facilities in South Africa have survived to older age and disclosure has become an essential part of their care. Available data on HIV disclosure to children were collected much earlier in the provision of ART in South Africa. The aim of the study was to (a) determine the characteristics of 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. A cross-sectional study was conducted among 286 caregivers of paediatric ART children aged 4–17 in two centres in Gauteng, South Africa. Bivariate and multivariate logistic regression analyses were carried out. The highest proportion of care givers were biological mothers (n=140, 49.3%). The mean age of the children was 8.5 years, (range 4-17 years). More than a third (n=99, 34%) were disclosed their HIV status, and the mean age at disclosure was 9.3 years, (SD = 2.7). Child’s age older than 10 years (OR =1.63; 95% CI: 1.44–1.85), having a nonbiological caregiver (OR=1.75; 95% CI: 1.06-2.89), caregiver educational level (OR =0.64; 95% CI: 0.47–0.87), and caregiver’s age older than 60 years (OR=1.02; 95% CI: 1.01-1.04), were significantly associated with HIV disclosure to infected children. The relatively higher prevalence of disclosure is attributed to increasing access to paediatric ART. Training healthcare providers to support caregivers in disclosure will increase the rate of disclosure to HIV infected children receiving ART in public health facilities. Corresponding author: Dr. Sphiwe Madiba School of Public Health, Faculty of Health Sciences, University of Limpopo, Medunsa Campus, South Africa Box 215 Medunsa 0204 E-mail: sphiwe_madiba@embanet.com ; Phone : +27125213093 ; Fax :+27125213314 Running title: Prevalence and factors associated with disclosure to HIV infected children in South Africa


Introduction
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 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. Variables associated with disclosure in bivariate analyses were included in the logistic models.  (Table 1).
The data was further analysed per clinic and is presented in   Health care providers were comprised of doctors, nurses, and social workers (Table 4).  4.2 years for children not disclosed to (Table 2).

Discussion
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 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.   [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. Further studies are needed to determine whether our findings are representative of the situation in Gauteng province in South Africa.

Conclusion
The prevalence of disclosure among our study population was 34%. Children older than 10