The lost children of universal access - issues in scaling-up HIV testing and counselling

This descriptive study is based upon information and data gathered from a convenience sample and review of national human immunodeficiency virus (HIV)/voluntary counselling and testing (VCT) policies; a review of existing recommended or selected tools and guidance; and informants working with HIV testing and counselling (HTC) and children at an implementation or policy level selected through purposive, snowball sampling. Questionnaires captured data on problems, strategies and legal frameworks on HTC provision to children in multiple countries and regions. The policy review of 20 high-prevalence countries revealed that while 84% distinguished identified children as a specific subgroup affected by HIV, only 35% of national policies offered details on HTC and children. Fifty-seven key informants (53% implementers, 48% policy-level) from 25 countries in four regions responded; 93% stated problems existed in the area of HTC and children and further specific guidance was needed on children in the following issues: informed consent (63.2% of respondents), child-counselling (54.4%), discrimination/stigma/child's rights (42.1%), diagnosis/laboratory issues (38.6%), disclosure (33.3%), service delivery (31%), access (29.8%), policy (23%) and confidentiality (21%). No geographic differences were found. Eighty guidance publications were reviewed that covered some of these issues. While some guidance, policies, strategies and tools have been developed around HTC and children, findings suggest that in many countries significant gaps and corresponding needs exist if children are to benefit from the move to Universal Access. Policy makers, programmers, implementers and monitoring efforts need to better directed. National policies must be updated to specify and reflect the technical and policy needs relating to diagnosis of HIV in children, and offer implementers specific directives related to consent, confidentiality and counselling needs. Stakeholders at international and country levels need to work to improve and update existing guidance; implementers must be updated in current best practices.