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Background  Provider-initiated HIV testing and counseling (PITC) is offered as part of the normal standard of care to increase access to treatment for HIV-infected children. In practice, HIV diagnosis occurs in late childhood following recurrent and chronic infections. We investigated primary caregivers’ reported reasons for seeking HIV testing for children aged 5–18 years, determined the orphan status of the children, and compared the clinical profile and disease burden of orphans and non-orphans.    Methods  This was a cross-sectional survey of primary caregivers of HIV-infected children accessing antiretroviral treatment (ART) from two community hospitals and 34 primary healthcare facilities in a rural district in Mpumalanga province, South Africa.    Results  The sample consisted of 406 primary caregivers: 319 (78.6%) brought the child to the health facility for HIV testing because of chronic and recurrent infections. Almost half (n = 183, 45.1%) of the children were maternal orphans, 128 (31.5%) were paternal orphans, and 73 (39.9%) were double orphans. A univariate analysis showed that maternal orphans were significantly more likely to be older (OR = 2.57,  p  = 0.000, CI: 1.71–3.84), diagnosed late (OR = 2.48,  p  = 0.009, CI: 1.26–4.88), and to start ART later (OR = 2.5,  p  = 0.007, CI: 1.28–4.89) than non-orphans. There was a high burden of infection among the children prior to HIV diagnosis; 274 (69.4%) presented with multiple infections. Multiple logistic regression showed that ART start age (aOR = 1.19,  p  = 0.000, CI: 1.10–1.29) and time on ART (aOR = 2.30,  p  = 0.000, CI: 1.45–3.64) were significantly associated with orphanhood status. Half (n = 203, (50.2%) of the children were admitted to hospital prior to start of ART, and hospitalization was associated with multiple infections (OR = 1.27,  p  = 0.004, CI: 1.07–1.51).    Conclusions  The study found late presentation with undiagnosed perinatal HIV infection and high prevalence of orphanhood among the children. The health of maternal orphans was more compromised than non-orphans. Routine PICT should be strengthened to increase community awareness about undiagnosed HIV among older children and to encourage primary caregivers to accept HIV testing for children.    Electronic supplementary material  The online version of this article (doi:10.1186/s40249-015-0049-x) contains supplementary material, which is available to authorized users.

infectious diseases of poverty

The burden of disease on HIV-infected orphaned and non-orphaned children accessing primary health facilities in a rural district with poor resources in South Africa: a cross-sectional survey of primary caregivers of HIV-infected children aged 5–18 years