The Children Left Behind: Barriers to Testing and Enrolling Children in HIV Care and Treatment in Njombe Region, Tanzania

Author(s): Jackson Mbogela, MPH; Alfred I. Kyando, MS; Riziki Mahenge, LLB

Year: 2018

Abstract:

Though they live in an area with one of the highest rates of HIV prevalence in the world, nearly 60 percent of HIV-exposed infants in Njombe region Tanzania did not receive an HIV test in 2013 or 2014. As a result, a much lower proportion of infants and children in the region have initiated anitretroviral therapy, compared to adults. The purpose of this study was to explore why these infants and children with HIV are not enrolled in HIV/AIDS care and treatment programs and make recommendations to correct barriers that researchers discovered.

This was an exploratory, descriptive, and retrospective qualitative study. Data were collected through in-depth face-to-face interviews, using an interview guide with open-ended questions. The study population consisted of 132 parents and guardians of HIV-exposed or HIV-positive children and 50 healthcare workers at relevant facilities.

Researchers discovered that the main barriers to enrolling children in HIV care and treatment programs were lack of understanding of how the HIV care and treatment system works and negligence. Other factors included self-denial, fear, embarrassment, feeling too shy to go to a treatment centre, and self-stigma. Healthcare workers said that parents and guardians declined to get their children tested, because of low levels of awareness among adults on the importance of testing, along with barriers related to transportation. A barrier for orphans is not having a parent or guardian to care for their health.

Recommendations include the following: Health facilities, in cooperation with the community health service providers, should establish an escort system to the treatment facilities. The government should improve provision of medication for opportunistic infections in pediatric HIV treatment units. Strategies should prioritize collaborations with nongovernmental organizations and community-based organizations in identifying and linking HIV-positive infants and children to care and treatment. The government should provide equipment, supplies, and training to regional hospitals on processing dried blood spot tests to facilitate results and initiation of treatment.

The study team concluded that there is no system to identify HIV-positive infants and children outside of health facilities, and a policy requiring that children under 15 years old be tested with their parents/guardians’ consent limits HIV-exposed children from accessing HIV testing and counselling services. Health workers agreed that this requirement creates a significant barrier discouraging children from getting an HIV test. Parents and guardians suggested that a knowledge gap and inadequate awareness on the importance of testing their HIV-exposed children was a key barrier to testing children.