PARENTS of children with sickle cell disease (SCD) experience increased adverse childhood experiences (ACE) and lower resiliency with increased hospital visits, according to new research. ACEs disproportionately affect African American communities and have been linked to increased morbidity. Parental ACEs in particular can lead to poor overall health outcomes and developmental delays in children, as well as a higher risk for the child to experience ACEs. In the context of SCD, which poses a profound health burden on patients and families, it is crucial to eliminate barriers to effective care. This requires an understanding of how ACEs affect patients and their caregivers.
An unblinded cross-sectional study was conducted at Arkansas Children’s Hospital, Little Rock, USA, from 1 January 2020–31 December 2023. Researchers assessed parental ACEs, resiliency, and neighbourhood deprivation using the Adverse Childhood Experiences Questionnaire (ACE-Q), the Brief Resiliency Scale, and the Area Deprivation Index (ADI), respectively. A total of 79 caregivers were included, 70 of whom were mothers. Primary endpoints included number of missed clinic visits, emergency department (ED) visits, and medication adherence.
Researchers noted a low risk of ACE in 32 caregivers (40.5%), intermediate in 33 (41.8%), and high in 14 (17.7%). The number of ED visits was significantly higher in those who were at high risk, compared to those at low risk (regression coefficient: 7.35; 95% CI: 1.77–12.94). A higher number of ED visits was also noted in those who were less resilient, compared to those with more resiliency (regression coefficient: 5.69; 95% CI: 0.13–11.26). There was no association between ADI and ED visits (regression coefficient: −0.02; 95% CI: −0.12–0.08).
The team concluded that visits to the ED were associated with higher parental ACE scores and lower resiliency in parents of children with SCD. These results emphasise the need for screening in caregivers in order to provide better trauma-informed care.
Reference:
Wilson DK et al. Parental adverse childhood experiences and health care use among children with sickle cell disease. JAMA. 2025;8(7):e2519793.
