Lived experience with sickle cell disease: Predictors of altruistic participation in clinical research

Abstract

Researchers have found that research altruism motivates research participation, but little is known about what aspects of lived experience motivate this socially focused altruistic participation when participation emerges at the intersection of illness, identity, and injustice. This study examines adults living with sickle cell disease (n = 235) in the United States enrolled in the INSIGHTS clinical research study to investigate what aspects of the sickle cell disease lived experience, understood here as pain and illness perception, are associated with reporting subsidiary and primary altruistic motivations for participating in clinical research. Results from two binary logistic regressions indicate that pain frequency is positively associated with greater odds of reporting subsidiary altruistic motivations, and pain frequency and pain severity are positively associated with greater odds of citing primary altruistic motivations. Conversely, pain interference and illness perception are associated with lower odds of reporting primary altruistic motivations. These results reveal that for this racialized population, participation, although overwhelmingly altruistic, is rooted in an experience of persistent pain. Researchers must disentangle measures of lived experience in order to better understand what factors underlie and prevent participation.