Facilitators and Barriers to Newborn Sickle Cell Screening in Kalangala, Uganda

Background: Sickle cell disease (SCD) is the most common inherited blood disorder worldwide. In Uganda, fifth in global prevalence, about 40,000 children are born with SCD annually. Newborn screening (NBS) enables early diagnosis and reduces mortality. Despite Uganda adopting universal NBS policies, little is known about factors affecting implementation in isolated areas. This study examined barriers and facilitators to NBS for SCD in Kalangala District, an island district in Lake Victoria, Uganda. Objectives: This study investigates challenges and facilitators to Uganda Ministry of Health’s (MoH’s) call for universal NBS in a low‑resource area and describes parent perspectives of NBS. Methods: We conducted a mixed‑methods study with surveys (N = 271) and in‑depth interviews (N = 32) with parents of children under two years old about Kalanglala Health Center IV’s NBS program and their attitudes toward it. Data from surveys, in‑depth interviews, and KHCIV’s annual NBS data assessed NBS capacity. Statistical analysis was conducted in RStudio and Excel; qualitative analysis was conducted in NVivo. Findings: Among 271 participants, 83.8% had heard of SCD, but only 51.5% knew it is an inherited blood disorder. Most (61.6%) were unaware of the NBS at Kalangala Health Center IV, yet 81.5% would recommend screening. Most (51.3%) saw the first two days after birth as the best screening time. Of 455 records, SCD prevalence was 2.4%, higher than the national 0.7%. Qualitative findings highlighted limited knowledge, stigma, transportation, cost, and mistrust as barriers, while facilitators included trust in healthcare workers, positive screening experiences, and integration into community outreach. Conclusions: Universal NBS for SCD is feasible in remote areas like Kalangala District, but barriers such as educational, geographic, financial, and health system issues threaten sustainability. Integrating SCD education into antenatal and immunization services, initiating community outreaches, and improving access to specialized care are key to nationwide scale‑up.