Research Article: Barriers to Initiation of Pediatric HIV Treatment in Uganda: A Mixed-Method Study

Date Published: February 6, 2012

Publisher: Hindawi Publishing Corporation

Author(s): T. Sonia Boender, Kim C. E. Sigaloff, Joshua Kayiwa, Victor Musiime, Job C. J. Calis, Raph L. Hamers, Lillian Katumba Nakatudde, Elizabeth Khauda, Andrew Mukuye, James Ditai, Sibyl P. Geelen, Peter Mugyenyi, Tobias F. Rinke de Wit, Cissy Kityo.


Although the advantages of early infant HIV diagnosis and treatment initiation are well established, children often present late to HIV programs in resource-limited settings. We aimed to assess factors related to the timing of treatment initiation among HIV-infected children attending three clinical sites in Uganda. Clinical and demographic determinants associated with early disease (WHO clinical stages 1-2) or late disease (stages 3-4) stage at presentation were assessed using multilevel logistic regression. Additionally, semistructured interviews with caregivers and health workers were conducted to qualitatively explore determinants of late disease stage at presentation. Of 306 children initiating first-line regimens, 72% presented late. Risk factors for late presentation were age below 2 years old (OR 2.83, P = 0.014), living without parents (OR 3.93, P = 0.002), unemployment of the caregiver (OR 4.26, P = 0.001), lack of perinatal HIV prophylaxis (OR 5.66, P = 0.028), and high transportation costs to the clinic (OR 2.51, P = 0.072). Forty-nine interviews were conducted, confirming the identified risk factors and additionally pointing to inconsistent referral from perinatal care, caregivers’ unawareness of HIV symptoms, fear, and stigma as important barriers. The problem of late disease at presentation requires a multifactorial approach, addressing both health system and individual-level factors.

Partial Text

Despite the effectiveness of antiretroviral prophylaxis for the prevention of mother-to-child transmission (PMTCT) of HIV, approximately 370,000 children were newly infected with HIV in 2009. An estimated 2.5 million children are currently infected with HIV worldwide, of whom 2.3 million reside in sub-Sahara Africa [1]. HIV infected infants have much higher rates of disease progression and mortality than adults or older children, even with a relatively high percentage of CD4 T lymphocytes [2, 3]. Without treatment, over 50% of HIV-infected children are estimated to die before the age of two [4].

This mixed-method study examined factors influencing the timing of ART initiation among children attending HIV clinics in Uganda. Even though ART is now free and widely available in Uganda, 72% of the children in this study presented with advanced HIV disease at their initial visit. The main risk factors for this late disease stage at presentation identified in our study—from both quantitative and qualitative data—included lack of HIV-specific perinatal care, living without parents, financial constraints of the caregiver, caregivers’ unawareness of HIV symptoms, stigma, and fear. Our study adds insight into the challenges of identifying HIV-infected infants and children sooner and recruiting them into care. In the setting of the JCRC network of HIV treatment sites in Uganda, linkage to the ANC systems and psychosocial support are recognized as priorities to improve pediatric access. Even though JCRC sites are at the high-end with respect to resources, infrastructure, staff, and available diagnostics, late disease stage at presentation was a frequent and important problem among children initiating ART. The barriers identified in our study are therefore likely of national relevance and applicable to other HIV clinics in Uganda.

C. Kityo, P. Mugyenyi and V. Musiime established the MARCH cohort and supervised data collection. K. C. E. Sigaloff and J. Kayiwa contributed to implementation. T. F. R. Wit, C. Kityo, K. C. E. Sigaloff, S. P. Geelen, J. Calis and T. S. Boender conceived the substudy. T. S. Boender analyzed the data and wrote the first draft of the manuscript with assistance from R. L. Hamers and K. C. E. Sigaloff. C. Kityo, V. Musiime, J. Calis, T. F. R. Wit and S. P. Geelen critically reviewed the paper. All authors contributed to subsequent drafts and reviewed and approved the final manuscript.

There is no conflict of interests to declare.




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