Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study

Abstract

BackgroundChildren with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management.MethodsParents/primary caregivers (N = 27) of children with SCA (≤12 years old) participated in semi‐structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively.ResultsThree qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%).ConclusionDespite documented associations, there remains a poor understanding of the processes linking SDoH and health. Findings underscore how day‐to‐day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family‐centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.

Food insecurity and quality of life in patients with sickle cell disease

“…In general populations, SNAP is a proven, effective intervention for FI that can reduce the severity of FI and, for some, is sufficient to achieve FS 22,23 . Our study corroborates high FI rates seen in acute pediatric SCD care settings 29–31 . It is also consistent with a prior report showing higher rates of FI among children with special healthcare needs, including households receiving governmental support like WIC, SNAP, housing assistance, and Federal Supplemental Security Income 32 …”