Parent/caregiver health literacy among children with special health care needs: a systematic review of the literature

BACKGROUND Children with special health care needs (CSHCN) are children with medical or behavioral diagnoses that require services beyond those generally needed by pediatric populations. They account for a significant portion of pediatric health care expenditures and often have complicated treatment regiments. Health literacy has recently been recognized as a key indicator of quality chronic disease self-management and parental/caregiver health literacy of CSHCN is an understudied area. The purpose of this systematic review was to assess the available evidence of studies investigating parent/caregiver health literacy of CSHCN. METHODS Databases were searched to retrieve relevant articles for inclusion (dating from 1998 to 2014). Only studies that assessed the relationship between parent/caregiver health literacy on outcomes pertinent to CSHCN were included. Because of the limited number of studies, there were no restrictions placed on type of outcome. RESULTS Thirteen studies were included in the final review with a range of health literacy assessments and outcome ascertainment. The majority of studies; (1) focused on the relationship between parental/caregiver health literacy and asthma outcomes, (2) were cross-sectional study designs, and (3) included samples recruited from pediatric clinics in academic medical settings. CONCLUSIONS There were several gaps in the literature where future research is needed including; (1) direct assessment of child/adolescent health literacy, (2) inclusion of children with co-morbid conditions, (3) further assessment of the relationship between health literacy and health care utilization and cost, and (4) assessment of parental/caregiver health literacy in the inpatient care setting.