Beyond the Diagnosis: Lived Experiences of People with Sickle Cell Disease in South India

BACKGROUND: Sickle cell disease (SCD) is an inherited blood disorder characterized by the presence of sickle-shaped erythrocytes, leading to haemolytic anemia, vaso-occlusive crises, and multi-organ complications. In this study, we describe the lived experiences of persons with SCD (PwSCD) and their caregivers within their social and cultural contexts, aiming to uncover the factors that limit effective healthcare for tribal communities in India. METHODS: We have conducted an interpretive phenomenological study to explore the lived experiences of PwSCD in the tribal regions of Chamarajanagar district in Karnataka. During our clinical follow-ups of patients enrolled in the population-based hemoglobinopathy registry, we documented our conversations with consented patients, family members, and caregivers about symptoms, challenges, beliefs, perceptions, and expectations. A total of 43 participants (24 women and 19 men) were recruited for the study. These conversations, field notes, and observations were thematically analysed using the inductive approach of Braun and Clarke's framework to deduce five key themes. RESULTS: This study uncovered complex, intersecting factors influencing the lived experiences of PwSCD in tribal and underserved communities. Thematic analysis yielded five overarching themes: stigma and disclosure concerns, misconception, misinformation and treatment hesitancy, emotional distress and psychological adaptation, influence of family dynamics and cultural preferences, and structural and economic barriers to care. CONCLUSIONS: The study highlights the need to move beyond a clinical approach and adopt a comprehensive model of care that addresses the social determinants of health, such as stigma, financial hardships, and gender inequity affecting PwSCD and their families.