Participant characteristics
All 41 caregivers of CLHIV that were eligible for the follow-up survey participated in the survey three months after study enrollment (40 newly diagnosed children plus 1 known CLHIV not yet on ART) (Table 1). Median age of the 41 CLHIV was 9 years (interquartile range (IQR) 6-13). Twenty-one (51%) children were male, and most had living biological parents (n=6, 15% reported deceased mothers and n=7, 17% reported deceased fathers). Thirty-six (88%) of the participants were from urban settings and almost half (n= 19, 46%) were young adolescents (age 10-14 years). Over half (n=21, 51%) had moderate or severe acute malnutrition. Forty (98%) had no previous history of hospital admission; the one child with a prior hospitalization was the known CLHIV not yet on ART. Fifteen (37%) children were reported to have history of poor health, and recurrent skin problems were found in 23 (56%) of children. Twelve (29%) children reported missing a lot of school.
Linkage to ART
Among the 41 children, 34 (83%) enrolled in HIV care and treatment services at the time of follow-up (Table 2). Most children (n=28, 82%) enrolled in the same facility that initial HIV testing had been conducted, and the remaining 6 children (18%) were enrolled in other facilities. Of the 34 children enrolled in HIV services, the majority (n= 32, 94%) were started on ART; one child died after enrollment in HIV services but before ART initiation, and the caregiver of another child did not see the need for confirmatory HIV testing. The known HIV-positive child not on ART at the time of study enrollment was enrolled in HIV services and initiated ART at the time of follow-up. Date of ART initiation was available for the majority of children that initiated ART (n=31, 97%). Median time from initial HIV diagnosis to ART initiation was 12 days (IQR 5–18 days). Only 3 (10%) children had same-day ART initiation, and an additional 7 (23%) initiated ART between 1-7 days after diagnosis.
Most caregivers of CLHIV enrolled in HIV services were satisfied with the enrollment experience (n= 29, 85%) and the information received about diagnosis and medical needs of the child (n= 31, 91%), although one caregiver recommended that more information could be provided on protecting their child from death. Among the 32 children started on ART, the majority of caregivers (n= 30, 94%) were satisfied with the experience of ART initiation; the remaining two caregivers had children that died after ART initiation.
Seven children (17%) were not linked to HIV services or initiated on ART during three months of follow-up; four were from the index testing entry point, two were from the malnutrition entry point, and one was from the TB clinic. Five were female, and four were 5 years of age or older. All seven had a living mother, while only five had a living father. Caregivers stated the following reasons for not linking to HIV services or initiating their child on ART: they did not see the need for services (n=2, 29%), they preferred alternative methods of HIV treatment (n=3, 43%), they took child to the facility but was not enrolled (n=1, 14%), lack of psychological readiness (n=1, 14%), and death before enrolling in HIV services (n=2, 29%). Some caregivers noted multiple reasons for not enrolling.
Confirmatory testing
Confirmatory testing before ART initiation was done in the majority of the children by 3 months (n=34, 83%). Same-day confirmatory HIV testing was conducted in approximately one-half (n=16, 47%) and an additional one-fifth were done within 1 week (n=7, 21%). The median time to confirmatory testing was 1.5 days (IQR 0-14). There were no discordant results between the initial test and confirmatory tests in this study.
The majority of caregivers (n=30, 88%) of the 34 children who received confirmatory testing were satisfied with the experience (Table 3). Most caregivers felt better or the same about their child’s HIV test results when confirmatory testing was done (n=19, 56% and n=12, 35% respectively). Among the caregivers that did not receive confirmatory testing, reasons included: not understanding why the child needed confirmatory testing (n=1), confusion with the initial test results (n=2), HCWs did not offer a confirmatory test (n=1), death of child before confirmatory testing (n= 1), ART was not started (n=1), and did not know if the child received confirmatory testing (n=1). Forty HCWs participated in the survey, and the majority stated that they felt better about the testing results and about starting children on ART after conducting the confirmatory testing (n=39, 98% and n=36, 90% respectively) (Table 3).
Missed opportunities for earlier diagnosis
Only 4 (10%) mothers of the 40 newly diagnosed children had been diagnosed with HIV prior to or during pregnancy, and 3 (8%) mothers were diagnosed during breastfeeding (Table 4). Of these 7 women, only 3 (43%) had their infant tested within the first two months of life; all 3 reported negative infant tests. The majority of mothers of newly diagnosed children (n=26, 65%) were diagnosed after the end of breastfeeding, and most of their children (78%) were ≥5 years at diagnosis. Three of the 26 (12%) women diagnosed after breastfeeding cessation had been offered testing during pregnancy, only 1 accepted. Timing of maternal HIV diagnosis was unknown in 7 children (18%).
Disclosure of HIV status
Only 10 (24%) of the 41 CLHIV had been disclosed of their HIV status within the 3-month follow-up. When limiting the analysis to newly diagnosed children aged 10-14 years (n=18), an age when disclosure of HIV status to the child can be expected, only 8 (44%) had been disclosed to during the 3-month follow-up period. Within the 10-14 age band, disclosure rates did increase with age, as 78% (7/9) of children aged 13–14 had been disclosed to, compared to only 1/9 (11%) children aged 10–12. Caregiver reasons for non-disclosure included: feeling the age was not appropriate (n=23/31, 74%), didn’t know how to tell the child (n=1, 3%), afraid to tell their child (n=5, 16%), and afraid of psychologically traumatizing the child (n=2, 6%).