Experiences and Management Practices of Individuals Living with Sickle Cell Anemia in Nigeria

Background: Sickle cell anemia (SCA) remains a major public health concern in Nigeria, where it significantly affects the physical, emotional, and social well-being of affected individuals. Despite advancements in medical care, many patients continue to face challenges related to disease management and societal perceptions. Purpose: This study aimed to explore the experiences and management practices of individuals living with SCA in Nigeria. Methods: A descriptive cross-sectional study was conducted among individuals living with sickle cell anemia in Nigeria using a structured online questionnaire distributed through WhatsApp support groups. Ethical approval was obtained from the Federal Medical Centre, Abeokuta, Nigeria. A voluntary participant recruitment approach was employed, and data collected included socio-demographic characteristics, disease experiences, pain triggers, and management practices. Data were analyzed using descriptive statistics in SPSS and Microsoft Excel. Result: Out of 307 individuals contacted, 66 respondents completed the survey (21.5% response rate). Most respondents were female (69.6%), aged 31-40 years (51.5%), and had the HbSS genotype (72.7%). Frequent pain crises were reported by 42.4% of participants, while 69.7% stated that sickle cell disease had negatively affected their life pursuits. Societal discrimination was experienced by 68.1% of respondents. Malaria was the most commonly reported trigger of pain crises (34%), followed by stress and extremely cold weather. Medication was the most common management strategy (47.0%), while hospital visitation was the preferred approach during crises (59%). Conclusion: The study highlights the complex realities of living with SCA in Nigeria, characterized by frequent clinical complications, diverse management practices, and substantial psychosocial burdens.