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

摘要: Abstract Background Sickle cell disease associated stigma impacts health-related quality of life and community participation. Stigma in adults living with sickle family members was appraised via a pilot study for paired (adult family) instrument development, face validity, psychometrics. Methodology Likert type scales were adapted from epilepsy HIV literature Bronfenbrenner’s Ecology Human Development Theory as the conceptual framework. Findings 42 United States Nigeria participated study. Chronbach’s alpha 40 item SCD Scale(s) = 0.86. Total score 0–120; mean = 40.6, SD = 20.9, range = 4–86. Nigerians report higher (r = .60, p  Conclusion Tools to assess are useful individuals family/social supports across cultural populations. The Conceptual model highlights complexity systems that can affect stigma. Implementation tool identify issues such isolation, fear burden. Further development analysis is needed influence education, treatment, policy.