Ayobami Aiyeolemi
Stigma in Sickle Cell Disease: Lived Experiences and the Development and Validation of a New Stigma Scale
Abstract
Stigma is a well-recognized barrier to care for individuals with sickle cell disease (SCD). Yet research on SCD stigma remains limited, and its impact on health outcomes is not well understood, as existing studies are largely quantitative, lack grounding in stigma theory, and use scales that do not fully capture lived experience or key stigma dimensions: anticipated, enacted, internalized, and perceived. Guided by the Health Stigma and Discrimination Framework and using a community-based participatory approach, this project aims to qualitatively explore stigma experiences of individuals with SCD and to develop and validate a comprehensive SCD stigma scale. Qualitative data will be analyzed using thematic analysis, and the scale will be evaluated for content, face, structural, and construct validity. This project will advance understanding of SCD stigma and produce a validated scale that enables researchers and policymakers to evaluate its effects and design targeted interventions.
I am honored to receive the PhRMA Foundation award and deeply grateful for the essential support it will provide as I advance my dissertation research on understanding the health impact of stigma on individuals living with sickle cell disease.