The SickleInAfrica consortium has created multi-level Standards of Care (SoC) guidelines for sickle cell disease (SCD) addressing primary, secondary, and tertiary services. However, implementation may face challenges due to health system limitations, patient factors, and social determinants of health. A scoping review identified and categorized barriers to SCD care using a biopsychosocial framework, mapping these barriers to the SoC guidelines developed by the Sickle Pan-African Research Consortium (SPARCo). The review included 54 studies, revealing that social barriers were the most prevalent (85.2%), followed by operational (74.1%), psychological (40.7%), and biological (14.8%). Key barriers included the invisible nature of pain, medication shortages, negative staff attitudes, inadequate mental health support, stigma, and low SCD literacy among healthcare workers. Most barriers were linked to three SPARCo SoC domains: health maintenance and preventive therapy, management of acute complications, and specialized protocols. Recommended priorities include integrating SCD care into existing health programs, co-designing transition models for pediatric to adult care with patient support groups, and enhancing workforce training. Utilizing established healthcare programs, such as maternal health and immunization services, could help scale up SCD services and reduce implementation barriers.
Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium
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