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Table 2 Included studies in systematic review of parent/caregiver health literacy of CSHCN

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

Author, year Design Disease/Sample Assessment of HL Outcomes Notable findings (HL-specific) Quality assess-ment
DeWalt et al., 2007 [15] Retrospec-tive cohort Asthma REALM ED visits Children from parents with low health literacy had greater incidence of ED visits (IRR 1.4; 0.97-2.0), hospitalizations (IRR 4.6; 1.8-12) and days missed from school (IRR 2.8; 2.3-3.4) even after adjusting for asthma-related knowledge, disease severity, medication use, and other socio-demographic factors IIIA
N = 150 24 % of parents had low HL Hospitalizations
Children (age 3–12 years) and parents from University pediatric clinic, USA Days missed from school
Farber et al., 1998 [16] Cross-sectional survey Asthma REALM Asthma care practices, knowledge asthma medications, management plans, prior hospitalizations and previous ED visits for asthma All descriptive findings on frequency of asthma exacerbations and practices; not correlated with HL levels so HL interpretation limited. Not one participant had a written self-management plan. IIIC
N = 46 49 % of adults had HL 8th grade level or below; 20 % of adults had lower than 6th grade HL (low HL)
Children (age 2–6 years) and adults accompanying them in an inner-city emergency department (mother in 91 % of cases), all adults were African-American, USA
Freedman et al., 2008 [17] Prospec-tive observa-tional Glaucoma REALM Adherence to eye drops, dosing errors, proportion of doses taken on schedule Decreased parental health literacy associated with decreased medication adherence in multivariable regression model (p = 0.01) IIIB
N = 46 Overall HL assessments not provided
Children (age 5–17 years) and parents (majority mothers, percent not specified) from an academic pediatric ophthalmology clinic, USA
Gandhi et al., 2013 [18] Cross-sectional survey Asthma S-TOFHLA Asthma control, asthma-specific HRQoL HL-related path analysis (from HL to perceived self-efficacy with patient-physician interaction to asthma control and asthma-specific HRQoL) not statistically significant. Parents with higher HL and greater self-efficacy with patient-physician interaction had higher satisfaction with shared decision making (β = 0.38, p < 0.05) IIIB
N = 160 6.26 % of parents had inadequate or marginal HL
Children (age 8–17 years) and their parents (91 % female parent/guardian) from academic pediatric clinic, USA
Harrington et al., 2013 [19] Cross-sectional survey Asthma REALM and TOFHLA Provider estimates of parental HL; perceptions influence on treatment recommendations Providers perceptions of HL influenced asthma treatment recommendations (p = 0.001) and how treatment instructions were given (p = 0.001). Pediatric providers had low concordance between perceptions and actual parental assessment of HL. IIIA
N = 281; 14
Children (age 6–12 years) and their parents; 14 providers from pediatric clinic, USA 35 % of parents had either marginal or inadequate HL
Hassan et al., 2010 [20] Cross-sectional survey Type 1 Diabetes NVS Glycemic control via mean hemoglobin A1c (HbA1c) After controlling for race, language, income, education there was a significant relationship between HL and glycemic control (p, 0.004; R2 0.23) IIIA
N = 200 17 % of parents had limited or possibly limited HL
Children (diagnosed at least 1 year prior) and their caregivers from academic pediatric clinic, USA
Janisse et al., 2010 [21] Cross-sectional survey Type 1 Diabetes S-TOFHLA Glycemic control via mean hemoglobin A1c (HbA1c); Diabetes Management Scale (DMS) HL not significantly related to DMS or HbA1c for total sample. For adolescents on intensive insulin regimen (n = 65), parental HL correlated with DMS adherence (p < 0.01). IIIC
N = 93 All caregivers screened as adequate HL
Adolescents (age 10–17 years) in poor metabolic control and their primary caregivers (89 % female) from a pediatric clinic, USA
Macy et al., 2011 [22] RCT Asthma REALM Asthma knowledge Randomized to either video (intervention) or written materials (control). Among low HL parents, improvement in knowledge regardless of education type (p < 0.001) IB
N = 129 31 % of parents had low HL
Children (age 2–14 years) with parents who presented to the ED, USA
Porter et al., 2012 [23] RCT ADHD TOFHLA Report of sufficient and accurate clinical data Randomized to either paper-based or computer-based data collection. Parents with adequate HL had increased odds of reporting sufficient and accurate data (sufficiency for ADHD screening: OR 8.0; 2.0-32.1; accuracy of medication report OR: 4.4; 0.5-37.4) IB
N = 182 5.6 % of parents had inadequate or marginal HL
Children (age 5–12 years) with parents (86 % female) from advertisement in a city, USA
English and Spanish-speaking participants
Pulgaron et al., 2014 [24] Cross-sectional survey Type 1 Diabetes S-TOFHLA Glycemic control via mean hemoglobin A1c (HbA1c) Parental numeracy and HL positively correlated (r = 0.37, p = 0.02). Parent numeracy (r = −0.52, p <0.01,), but not HL (r = −0.25, p = NS) were inversely correlated to their child’s HbA1c. IIIB
N = 70 PDNT (numeracy)
Children (age 3–9 years) with caregivers (84 % mothers) from diabetes clinics, USA Overall HL assessments not provided
English and Spanish
Shone et al., 2009 [25] Cross-sectional survey Asthma REALM Number of symptom free days over 2 weeks; use of urgent care in the past year; parent experiences with filling out medical forms; parent perception of asthma control; HRQoL using PACQLQ Low parental HL was independently associated with perceiving child’s health as fair/poor (OR 3.96; 2.4-6.4), greater parent worry (OR 1.85; 1.2-2.8), needing help to read forms (OR 2.03; 1.3-3.1) and lower HRQoL (β = −0.097; p = 0.047). Measures of health care use were not associated with parent HL. IIIA
N = 499 33 % of parents had low HL
Children age (3–10 years) with persistent asthma and parents from an urban school district, USA
Wittich et al., 2007 [26] Cross-sectional survey Asthma TOFHLA Provider perception of parental HL Moderate agreement between provider perception of caregiver HL (kappa = 0.5095). Inadequately assessed HL for 16 % of caregivers. IIIC
N = 51 14 % of caregivers had inadequate or marginal HL
Adult caregivers (96 % female; 86 % mothers) of pediatric patients from a university-asthma clinic, USA
Wood et al., 2010 [27] Cross-sectional survey Asthma NVS Perceived self-efficacy to manage their child’s asthma; frequency of physician visits, visits to ED, number of times admitted to hospital for asthma; asthma control Significant relationship between HL and perceived self-efficacy to manage asthma symptoms (r = 0.155, r2 = 0.02). There were no significant differences in HL by utilization variables or asthma control. IIIB
N = 196 44.4 % possibility of limited HL; 20.8 % high likelihood of limited HL
African-American children (age 5–12 years) with caregivers (84 % mothers) in urban pulmonology clinics, USA
  1. ADHD attention deficit hyperactivity disorder, ED emergency department, HL health literacy, HRQoL health related quality of life, NS non-significant, NVS Newest Vital Sign, PACQLQ Pediatric Asthma Caregiver’s Quality of Life Questionnaire, PDNT Parental Diabetes Numeracy Test, REALM Rapid Estimate of Adult Literacy in Medicine, RCT randomized control trial, S-TOFHLA Shortened Test of Functional Health Literacy in Adults, TOFHLA Test of Functional Health Literacy in Adults