Living with sickle cell disease: traversing ‘race’ and identity

Abstract

Objectives. Sickle cell disease (SCD) has a distinctive social history that continues to influence research and clinical practice related to the disease. Despite the historical link between SCD and concepts of ‘race’, there is limited empirical information on the relationships among SCD patients' ‘race’/ancestry/ethnicity/nationality, their beliefs and attitudes associated with these identities, and their SCD experiences and outcomes. We conducted a preliminary study to explore some of these relationships. Design. This US-based study comprised 46 adults with SCD, 20 males and 26 females, with an average age of 32.04 (18–59) years. Using US Census ‘race’ categories, 42 participants identified themselves as ‘Black or African American’, two as ‘Hispanic/Latino’, and two as ‘Other’. All participants completed a computer-based questionnaire that included measures of sociodemographics and ‘racial’ identity. Indicators of disease severity and frequency of hospitalizations were obtained from their medical records. Two open-ended questions explored the impact of SCD and ‘race’ on participants' experiences and another probed their understanding of the term ‘race’. Results. Overall, participants had positive regard for their ‘race’ and endorsed assimilation and humanist ideologies. ‘Racial’ identity was not related to disease severity or hospitalizations. Participants with non-US-born parents had higher levels of minority ideology than those with US-born parents (p<.01). Public regard beliefs were negatively associated with participants' perspective that SCD influenced how others perceived and treated them (r=−.35; p=.02). Centrality of ‘race’ and a nationalist ideology were positively associated with participants' belief that their ‘race’ influenced their experience with SCD (r=.31; p=.04 and r=.45; p=.001, respectively). The open-ended responses reveal that SCD and ‘race’ had varied effects on participants' experiences. Conclusion. This study illustrates the complexity of the interplay between ‘racial’ identity beliefs and patients' experiences with SCD, as well as the role of ‘race’ in these experiences. Implications of the findings are discussed.