Health System-Led Multimodal and Multilevel Interventions to Reduce Sickle Cell Disease-Related Stigma Among Tribal...

Sickle cell disease (SCD) is a chronic, inherited blood disorder with significant clinical and psychosocial consequences. In India, particularly among tribal populations, SCD is compounded by health-related stigma, which impedes treatment adherence, timely healthcare access, and quality of life (QoL). However, there is no evidence of structured, health system-led stigma reduction strategies tailored to the Indian context.

To develop, implement, and evaluate a health system-led, multimodal and multilevel intervention to reduce SCD-related stigma among patients and caregivers in five SCD-endemic districts of India.

This implementation research adopts a pre-post intervention design and is guided by the Theory of Change framework for intervention and Proctor's Conceptual Model for evaluating implementation effectiveness. The intervention comprises six core strategies: policy advocacy, capacity building of healthcare providers, individualized and family counselling, peer support groups, school-based awareness campaigns, and community mobilization through IEC activities. The study targets key stakeholders across the health system, community, and household levels. The impact will be assessed using the Indian Council of Medical Research-SCD Stigma Scale for India (ISSSI), alongside standardized tools for QoL (SF-36, PedsQL), resilience (CD-RISC 10), well-being (WHO-5), coping (Brief COPE), stress (PSS), and healthcare utilization.

Primary outcomes include the reduction in overall and domain-wise stigma scores. Secondary outcomes include improvements in QoL, resilience, coping strategies, perceived stress, and utilization of SCD-related health services. The findings will inform policy recommendations and the integration of stigma reduction interventions into the national SCD program.

This study presents an innovative, contextually grounded approach to address the hidden burden of stigma in SCD care. The intervention has the potential for scale-up and may serve as a model for addressing stigma in other chronic and stigmatized health conditions in low-resource settings.