Conference Abstract | Volume 8, Abstract NACNDC/19JASH056 (Oral 3B) | Published: 30 Nov 2025
Diana Antonia Rutebarika1,&, Anna Ritah Namuganga1, Carol Otike1, Joan Aturinde1, Silver Mpiima1, Eleanore Nanyinji1, Faith Balmoi1, Deborah Masiira1, Daniel Muyanja1, Phiona Ampaire1, Simon Africa Akasiima1, Patience Atukunda2, Francis Ssali1
1Joint Clinical Research Centre, Kampala, Uganda, 2Ernest Cook University, Kampala, Uganda
&Corresponding author: Diana Antonia Rutebarika, Joint Clinical Research Centre, Kampala, Uganda. Email: drutebarika@jcrc.org.ug
Received: 25 Aug 2025, Accepted: 20 Oct 2025, Published: 30 Nov 2025
Domain: Non-communicable Disease Epidemiology
Keywords: Paediatric, sickle cell disease, access, care uptake
©Diana Antonia Rutebarika et al. Journal of Interventional Epidemiology and Public Health (ISSN: 2664-2824). This is an Open Access article distributed under the terms of the Creative Commons Attribution International 4.0 License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Cite this article: Diana Antonia Rutebarika et al. Bridging gaps in sickle cell disease care: Screening uptake and policy challenges. Journal of Interventional Epidemiology and Public Health. 2025;8(ConfProc6):056. https://doi.org/10.37432/JIEPH-CONFPRO6-00056
Sickle Cell Disease (SCD) is a major public health challenge in Uganda, contributing to severe health complications among children. This study at the Joint Clinical Research Centre in Kampala aimed to identify factors influencing the uptake of enhanced healthcare strategies for pediatric SCD patients. A mixed-methods cross-sectional approach involved 180 caregivers and key informants. Results showed that 82.78% accessed enhanced care, but only 28.89% adopted the strategies. Key determinants included caregiver education, financial support, and proximity to care. Barriers were financial constraints, distance, low awareness, drug shortages, and stigma. Improving uptake requires decentralizing SCD services, integrating care into national health financing, increasing community awareness, and training healthcare workers to deliver accessible, high-quality, and patient-centered care. Sickle Cell Disease (SCD) is a genetic blood disorder marked by abnormal hemoglobin that leads to severe complications. Sub-Saharan Africa bears about 80% of global cases, with Uganda ranking fifth in prevalence. Limited diagnostic capacity, inadequate equipment, and insufficient psychosocial support continue to strain affected children and their families.
A mixed-methods cross-sectional study was conducted. Quantitative data were collected from 180 caregivers using structured questionnaires, selected through stratified random sampling from a population of 300 children with SCD. Qualitative data were obtained from purposively selected key informants. Data analysis was performed using Stata 15.0 and NVivo.
Overall, 82.78% of caregivers reported accessing enhanced care strategies; most were females aged 30–39. Determinants of access included educational level, financial support from employment, healthcare facility proximity, and payment options. Caregivers with a Bachelor’s degree and those receiving workplace financial support demonstrated higher access. Barriers included reliance on extended family caregivers and long travel distances. Despite access, only 28.89% adopted the strategies, with adoption highest among educated female caregivers. Qualitative findings emphasized awareness, provider competence, and perceived benefits as motivators, while financial constraints, geographic hurdles, limited awareness, drug shortages, and stigma impeded use.
Uganda’s limited infrastructure, including only four urban-based apheresis machines, creates substantial geographic and financial barriers, compromising transfusion efficacy and long-term outcomes. Strengthening strategic access would improve timely therapeutic exchange services. Investments in diagnostic tools, therapeutic equipment, and workforce training are essential to enhance clinical outcomes and reduce service delivery delays. Policy interventions should focus on decentralizing specialized SCD services, integrating SCD care into national financing schemes, and implementing subsidies or insurance coverage. Community education campaigns are needed to boost awareness, reduce stigma, and promote early care. Capacity building for healthcare providers is critical to ensure competent, patient-centered services and sustained engagement with care.
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