Risk and resilience factors for grade retention in youth with sickle cell disease

It is estimated that 23–54% of youth with sickle cell disease (SCD) will be retained at least one grade level during their educational career [1–5], which is much larger than the 5–10% of all children who are retained annually in the U.S. [6]. Researchers have failed to identify what factors would be useful to target to reduce the likelihood of grade retention for this population. Notably, the majority of research on grade retention indicates that it is not an effective strategy for remediating academically delayed children [7–9]. Negative outcomes of grade retention include higher school dropout rates, inattentiveness, and anxiety, and are not a continuation of poor academic and behavioral patterns, but a new sequencing of events resulting from retention [9]. Research indicates the negative effects of grade retention are not dependent on the grade in which the child is retained, and retention offers no measurable benefits, regardless of timing [10]. Thus, youth with SCD who are retained at any grade are placed at higher risk of academic failure. The primary driver of grade retention in youth is poor academic performance. Youth with SCD are at risk of poor academic performance due to the neurocognitive effects of their disease, specifically stroke. Overt and silent strokes in youth with SCD can result in problems with attention, memory, and executive functioning [11]. In addition to academic performance, demographic characteristics associated with grade retention in healthy children are low socioeconomic status (SES), male sex, minority status, and increasing age, as there are more opportunities for grade retention as children age [7, 9, 12]. SCD disease-related factors, such as SCD genotype, hemoglobin level, and SCD-related pain, have been linked to cognitive and academic functioning [13–16], and may be potential risk factors for grade retention for youth with SCD. Positive family functioning may be a resilience factor against grade retention in youth with SCD. In families of youth with SCD, higher family cohesion has been associated with higher IQ scores and an optimistic family attitude and lower levels of family conflict predicted better academic adjustment [1]. Familial overprotection and problems in family relations have predicted poorer academic adjustment in youth with SCD [18]. Thus, positive family functioning may directly reduce the likelihood of academic difficulties and provide an atmosphere that promotes the development of more effective coping strategies for dealing with adversity. This may create a situation where positive family functioning buffers against the negative effects of risk factors for grade retention in youth with SCD. The present study aims to address limitations of previous research on grade retention in youth with SCD and inform prevention efforts to reduce grade retention in this population. The study used a nationally representative sample of youth with SCD, participants from the Cooperative Study of Sickle Cell Disease (CSSCD), to identify risk and resilience factors for grade retention in youth with SCD. It was hypothesized that lower reading and math achievement, evidence of stroke, and the following demographic and disease-related factors would be associated with a higher likelihood of grade retention: lower income, male sex, older age, severe genotype (HbSS and HBSβ0), low hemoglobin level, and SCD-related pain in the past 1–2 years. The study also investigated whether positive family functioning acts as a resilience factor. It was hypothesized that indicators of positive family functioning (e.g., low conflict, high expressiveness, high cohesion, and high achievement-orientation) would be directly associated with a lower likelihood of grade retention and would buffer against the impact of poor academic performance, evidence of stroke, demographic and disease-related risk factors on grade retention.