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.