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

Abstract

BackgroundChildren 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.MethodsDatabases 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.ResultsThirteen 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.ConclusionsThere 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.

Health literacy in children with asthma: A systematic review

“…Our review is similar to a previous systematic review on parental HL. 10 The present review clearly indicates that parents require effective skills to appropriately assess and prevent the exacerbation of their children's asthma symptoms. However, children's HL is yet to be completely understood.…”

“…Increasing evidence emphasizes the role of HL among adults 7 and parents of children in asthma care quality and control 9,18 and has revealed that HL is a valuable indicator of the outcomes of health education and self-management programs. 10,11 However, the relationship between children's HL and asthma remains unclear. A systematic literature review (1980e2014) revealed several research gaps in the direct assessment of children's HL.…”

“…A systematic literature review (1980e2014) revealed several research gaps in the direct assessment of children's HL. 10 In addition, while developing self-management programs and approaching children, children's HL should be assessed to provide optimally tailored programs to target groups. Therefore, this systematic review explored current evidence to elucidate the relationship between HL and asthma among children.…”

Does attachment to parents and peers influence health literacy among adolescents in Malaysia?

“…For instance, a study by Heath et al [14] on Australian adolescents revealed that families with low educational and socio-economic status, a family history of language/ literacy difficulty, and low phonological awareness in parents could lead to poor literacy outcomes in children. Studies by Keim-Malpass et al [15] and DeWalt and Hink [16] reported that children whose parents had low literacy often had worse health outcomes and these findings reaffirmed Manganello's view [12].…”

The Eye of the Beholder: A Discussion of Value and Quality From the Perspective of Families of Children and Youth With Special Health Care Needs

“…Their conclusion: "Parental/caregiver health literacy is an understudied area." 23 Almost universal access to the Internet has brought previously unimagined kinds and amounts of information to families of CYSHCN, with wide variability in its quality and reliability. Access to the Internet has its benefits, including facilitating families' connections to professional and family resources and organizations of many kinds at many levels, and importantly, to other families in similar situations, many willing to share information, support, strategies, tips, and resources.…”