Stigma in adults with sickle cell disease and family members: Scale development and pilot study in the USA and Nigeria

Abstract

Background: Sickle cell disease associated stigma impacts health-related quality of life and community participation. Stigma in adults living with sickle cell disease and family members was appraised via a pilot study for paired (adult and family) instrument development, face validity, and psychometrics. Methodology: Likert type stigma scales were adapted from epilepsy and HIV literature with Bronfenbrenner's Ecology of Human Development Theory as the conceptual framework. Findings: 42 adults from United States and Nigeria participated in the study. Chronbach's alpha of the 40 item Stigma in SCD Scale(s) = 0.86. Total score 0–120; mean = 40.6, SD = 20.9, range = 4–86. Nigerians report higher stigma (r =.60, p