Internet use and health literacy among pediatric chronic kidney disease patients and their caregivers

Management of pediatric chronic kidney disease (CKD) is complex for affected youth and their families. Treatment requires a high level of family engagement to successfully manage medical appointments, inpatient hospital stays, and daily medication regimens. Health literacy has been identified as a possible contributor to health inequities and unsuccessful chronic disease management. This study sought to explore the perceived health literacy, health-related internet use, and provider trust of children with CKD and their caregivers compared to those without chronic health conditions to inform clinical care.

Caregivers and children completed self-report surveys during routine specialty nephrology and general pediatrics clinic visits. In total, 85 caregivers and 46 youth participated. Statistical analyses included exploration of distributional properties, population differences, and group differences based on self-reported perceived health literacy.

Caregiver demographics did not significantly vary across samples. Patient demographics varied significantly across samples with regard to ethnicity. Internet use to find health information was low across samples, and caregivers of children without chronic health conditions endorsed significantly higher perceived health literacy compared to caregivers of children with CKD.

Implications for practice include consideration of health literacy when treating children with CKD and patient preparedness for transition to adult care.