Abstract
ABSTRACTIncreasing numbers of children with HIV are surviving to adolescence and beyond, many of whom are orphaned. Disclosure of childrens' and adolescents' HIV status has been shown to improve adherence and retention in HIV treatment programmes. We investigated caregiving arrangements and intra-familial experience of HIV and its relationship to HIV disclosure to older children and adolescents. Children aged 6–15 years, newly diagnosed with HIV infection or previously diagnosed but not engaged in HIV care, were recruited from seven primary care clinics in Harare, Zimbabwe. Their caregivers responded to a nurse-led questionnaire. Family history of HIV, disclosure of HIV status to the child and reasons for non-disclosure were ascertained. The association between sociodemographics, caregiving, family HIV history and other characteristics and non-disclosure of HIV status to the child was determined using univariate and multivariate logistic regression. We recruited 385 participants, median age = 11 years (IQR: 9–13); 52% were female. Disclosure had occurred in 79% of children aged 11–15 years and 19% of children aged 6–10 years. Age under 11 years (adjusted OR [aOR] = 18.89, 95% confidence interval [CI] = 10.64–33.55; p < 0.001), being male [aOR]= 2.56, 95% CI = 1.49–4.54; p = 0.001, being unaware of the parents’ HIV status [aOR]= 32.42, 95% CI = 13.19–79.71; p < 0.001, and being newly diagnosed [aOR]= 2.52, 95% CI = 1.29–4.91; p = 0.007, were independently associated with non-disclosure. Disclosure outside of the family occurred infrequently and included friends of family (7%), school teacher (8%), school headmaster (4%) and church pastor (6%). High non-disclosure rates were present as well as a lack of discussion about HIV within the family. Disclosure outside of family was low reflecting difficulty in caregivers’ ability to discuss HIV with their child or surrounding community. HIV programmes need to support families in the disclosure process.
Highlights
The global scale-up of antiretroviral therapy (ART) programmes has dramatically reduced mother-to-child transmission, reducing the number of incident infections in children as well as improving survival among those infected with HIV
We investigated caregiving arrangements and intra-familial experience of HIV and their association with non-disclosure of HIV status to older children and adolescents at time of their HIV diagnosis
60% of children were single or double orphans, and 43% had a non-parent as the current primary caregiver (Table 1)
Summary
The global scale-up of antiretroviral therapy (ART) programmes has dramatically reduced mother-to-child transmission, reducing the number of incident infections in children as well as improving survival among those infected with HIV. As children with HIV get older and as they enter adolescence – a period of rapid cognitive, physical and psychological growth, their psychosocial needs evolve, and addressing these are key to children attaining successful treatment outcomes (Domek, 2006). One such vital component of HIV care for older children is disclosure of their HIV status to them. Disclosure is often delayed, and studies have reported that the proportion of older children and adolescents with knowledge of their HIV status ranges from as low as 1.2%
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