“I had to take a ‘dead year’ to undergo surgeries,” the Lived Experiences of University Students with Sickle Cell Disease, an interpretative phenomenological analysis

Background Sickle cell disease (SCD) is a hereditary blood disorder characterized by the production of abnormal hemoglobin molecules that cause red blood cells to take on a crescent or sickle shape. SCD causes excruciating pain, leading to hospitalizations and negatively affecting patients' quality of life. In transitioning to university life, students find themselves in a new environment, with demanding new domestic responsibilities and engaging in academic tasks that are perceived as different and are closely related to future success and dealing with their social life. The experiences of university students with SCD in Uganda have not been investigated. This study aimed to explore the lived experiences of university students with sickle cell disease at Makerere University, Uganda. Methods The study employed a qualitative approach. We conducted in-depth interviews with university students living with SCD. A total of 15 individuals were purposively recruited and participated in the study. Interpretative phenomenological analysis was applied to explore the lived experiences of students living with SCD and ascertain important themes. Results The average age of participants was 23 years (range 19–26), and the majority (60%) were male. Patient experiences were captured in six overarching themes: academic disruptions, experience of stigmatization, the feeling of missing out, support systems, effective self-management and coping strategies, and being normal. Conclusions This study highlights the significant challenges faced by university students with SCD in relation to academic interruptions and social integration due to health complications. Despite these challenges, the resilience and coping strategies exhibited by these students underscore their determination to succeed in their academic pursuits. Universities must recognize the unique needs of this population and implement policies that provide adequate support to ensure that students with SCD can thrive both academically and socially.