Barriers and Facilitators to Treatment Management of Pediatric Sickle Cell Disease in Kenya: Perspectives from Patients, Caregivers, and Healthcare Providers

Abstract

Objective: This study aims to identify barriers and facilitators to effective treatment management in pediatric Sickle Cell Disease (SCD) in Kenya, focusing on the perspectives of patients, caregivers, and healthcare providers (HCPs). Despite SCD affecting millions globally, particularly in sub-Saharan Africa where 75–85% of children with SCD are born, there remains a significant research gap regarding treatment management. Addressing this gap is crucial for informing targeted interventions to improve SCD care and outcomes in Kenya. Methods: Focus group discussions (FGDs) were conducted with 54 adolescents (aged 10–25 years), 18 caregivers, and 18 healthcare providers (HCPs) across three healthcare settings in Kenya: Eldoret, Webuye, and Homa Bay. Adolescents were divided into three age groups (10–14, 15–17, and 18–25 years). Discussions explored treatment management, healthcare interactions, and the emotional and physical challenges of living with SCD. Results: Key findings revealed that systemic and socioeconomic factors, such as financial constraints and limited healthcare infrastructure, were significant barriers to treatment adherence. Sociocultural factors, including stigma and reliance on traditional medicines, further complicated access to care. Developmental stage-related challenges, particularly among adolescents transitioning to adult care, highlighted gaps in patient support systems. Conversely, strong caregiver engagement and community health initiatives were identified as critical facilitators for improving adherence and treatment outcomes. Conclusion: The findings highlight critical barriers and facilitators that affect adolescents, caregivers, and HCPs in managing pediatric SCD. Addressing these issues requires improvements in treatment management, healthcare access, reduction of financial burdens, and the establishment of psychosocial support systems to alleviate the stress of long-term SCD management. The results suggest that targeted interventions addressing these challenges could significantly improve treatment adherence and health outcomes for pediatric SCD patients in Kenya.