Health Literacy, Self-Efficacy and Knowledge of Sickle Cell Disease Among Caregivers

Sickle cell disease (SCD) is a hereditary blood disorder in which abnormal haemoglobin leads to severe anaemia, painful crises and organ failure. Caregivers' health literacy (HL) - their ability to assess, understand and apply information, and interact with healthcare professionals - is crucial for managing children with SCD, yet insight into these skills is limited.

This study examines HL levels of caregivers of children with SCD, including performance-based HL, self-reported HL, disease knowledge and perceived self-efficacy, and their independent relationships.

A cross-sectional study was conducted at the Erasmus MC Sophia Children's Hospital (April-October 2019) among Dutch-speaking caregivers of children (≤12 years) with SCD. Data were collected on demographics, socio-economic status, performance-based HL (short assessment of health literacy in Dutch [SAHL-D]), self-reported HL (set of brief screening questions in Dutch [SBSQ-D]), self-efficacy (Perceived Self-Efficacy in Caregiver-Physician Interactions [PECPI]), and SCD-specific knowledge (SCD-K). Relationships between performance-based HL and self-reported HL, self-efficacy and SCD knowledge were analysed using ANOVA and linear regression.

Of 59 caregivers (mean age 34 years; 85% mothers; 59% born outside the Netherlands), 22% had adequate performance-based HL, while 97% had adequate self-reported HL; agreement was poor (r = 0.42). Disease knowledge was limited overall and unrelated to HL. Perceived self-efficacy was high overall and unrelated to HL.

Inadequate performance-based HL is common, and disease knowledge is limited among caregivers of children with SCD. Healthcare professionals should recognise HL barriers and tailor health information to the needs of families managing SCD.