A Mixed Methods Study on Perceived Stigma Among Individuals with Sickle Cell Disease and Caregivers in Selected Tribal Blocks of Madhya Pradesh, India

Background & Objectives: Sickle Cell Disease (SCD) affects at least 300,000 babies globally, with 14% born in India. Disease-related stigma is a multidimensional social challenge that varies culturally and severely impacts the quality of life for both patients and caregivers. This study aimed to determine the magnitude of perceived stigma among individuals with Sickle Cell Disease and caregivers and also the factors associated with it. It also aimed to explore the lived experiences of patients and caregivers. Methodology: Community-based mixed methods study of convergent parallel design was conducted in the tribal district Betul of Madhya Pradesh, India. A total of 85 patients and 105 caregivers were sampled for quantitative strand. For qualitative strand, purposive sampling was used and data was saturated after IDI of five patients and five caregivers. Results: Mild stigma was reported by 68.2% of patients and 49.5% of caregivers, whereas severe and very severe stigma was more than twice as common among caregivers (26.7%) compared to patients (11.8%). For patients, high stigma was significantly associated with complication-related hospitalization (p=0.005). High stigma among caregivers was significantly associated with a nuclear family type (p<0.001), blood transfusions in the past year (p<0.001), complication-related hospitalizations (p=0.039), and recent pain crises (p=0.005). Seven themes were identified qualitatively. Conclusion: Overall burden of stigma was more among caregivers than patients. It was associated with frequency of hospitalisation, blood transfusion and pain crisis. Stigma operates as a multilayer, cyclical process driven by knowledge deficits, leading to outcomes ranging from financial insecurity to preventable mortality.