Brief Report: Disclosure, Consent, Opportunity Costs, and Inaccurate Risk Assessment Deter Pediatric HIV Testing: A Mixed-Methods Study.

BACKGROUND: Prompt child HIV testing and treatment is critical; however, children are often not diagnosed until symptomatic. Understanding factors that influence pediatric HIV testing can inform strategies to increase testing. METHODS: A mixed-methods study was conducted at a tertiary hospital in Nairobi, Kenya. Three focus group discussions with health care workers (HCWs) and 18 in-depth interviews with HIV-infected adults with children of unknown status were analyzed using thematic analysis. A structured questionnaire was administered to 116 HIV-infected caregivers of children of unknown status to triangulate qualitative findings. RESULTS: Analysis revealed 3 key periods of the pediatric HIV testing process: decision to test, test visit, and posttest. Key issues included: decision to test: inaccurate HIV risk perception for children, challenges with paternal consent, lack of caregiver HIV status disclosure to partners or older children; test experience: poor understanding of child consent/assent and disclosure guidelines, perceived costs of testing and care, school schedules, HCW discomfort with pediatric HIV testing; and posttest: pessimism regarding HIV-infected children's prognosis, caregiver concerns about their own emotional health if their child is positive, and challenges communicating about HIV with children. Concerns about all 3 periods influenced child testing decisions. In addition, 3 challenges were unique to pediatric HIV: inaccurate HIV risk perception for children; disclosure, consent, and permission; and costs and scheduling. CONCLUSIONS: Pediatric HIV testing barriers are distinct from adult barriers. Uptake of pediatric HIV testing may be enhanced by interventions to address misconceptions, disclosure services, psychosocial support addressing concerns unique to pediatric testing, child-focused HCW training, and alternative clinic hours.

Pediatric HIV Disclosure Intervention Improves Knowledge and Clinical Outcomes in HIV-Infected Children in Namibia.

OBJECTIVES: Using routinely collected data, we evaluated a nationally implemented intervention to assist health care workers and caregivers with HIV disclosure to children. We assessed the impact of the intervention on child's knowledge and health outcomes. METHODS: Data were abstracted from national databases and patient charts for HIV-infected children aged 7-15 years attending 4 high-volume HIV clinics in Namibia. Disclosure rates, time to disclosure, and HIV knowledge in 314 children participating in the intervention were analyzed. Logistic regression was used to identify correlates of partial vs. full disclosure. Paired t-tests and McNemar tests were used to compare adherence and viral load (VL) before versus after intervention enrollment. RESULTS: Among children who participated in the disclosure intervention, 11% knew their HIV status at enrollment and an additional 38% reached full disclosure after enrollment. The average time to full disclosure was 2.5 years (interquartile range: 1.2-3 years). Children who achieved full disclosure were more likely to be older, have lower VLs, and have been enrolled in the intervention longer. Among children who reported incorrect knowledge regarding why they take their medicine, 83% showed improved knowledge after the intervention, defined as knowledge of HIV status or adopting intervention-specific language. On comparing 0-12 months before vs. 12-24 months after enrollment in the intervention, VL decreased by 0.5 log10 copies per milliliter (N = 42, P = 0.004), whereas mean adherence scores increased by 10% (N = 88, P value < 0.001). CONCLUSIONS: This HIV disclosure intervention demonstrated improved viral suppression, adherence, and HIV knowledge and should be considered for translation to other settings.

"If I take my medicine, I will be strong: " evaluation of a pediatric HIV disclosure intervention in Namibia.

BACKGROUND: Despite known benefits, only a small proportion of HIV-infected children in sub-Saharan Africa know their status and limited disclosure interventions exist. Namibia's Ministry of Health and Social Services developed and implemented a multipronged intervention to support health care workers (HCWs) and caregivers in the disclosure process. METHODS: The intervention included a staged disclosure cartoon book, child and caregiver readiness assessment tools, a monitoring form to track progress over visits, and HCW training curriculum. We conducted qualitative interviews with 35 HCWs and 46 caregivers of HIV-positive children at 4 high volume HIV clinics. Interviews elicited detailed information about intervention uptake and impact. HCWs also participated in a self-efficacy survey. RESULTS: The intervention improved HCW and caregiver confidence and communication skills in pediatric disclosure. The most valuable intervention component was the disclosure cartoon book, which provided structure, language, and guidance for a gradual disclosure process. HCWs reported it greatly reduced caregiver resistance to disclosure. Both caregivers and HCWs reported improved knowledge and ability to support the pediatric patient, improved child understanding of how HIV medications work, increased child hopefulness for their future, and improved child adherence to care and treatment. HCW self-efficacy surveys found that HCWs who received training felt more confident in their ability to engage in the disclosure process. CONCLUSIONS: HCWs and caregivers highly endorsed the intervention. Given the urgency to address pediatric HIV disclosure in Africa, and the utility and low cost of the locally-produced disclosure tool, this approach may be useful in other similar settings.