Published online January 2, 2007
PEDIATRICS
Vol. 119
No. 1
January 2007, pp.
e86-e92
(doi:10.1542/peds.2005-1738)
Caregiver Health Literacy and the Use of Child Health Services
Lee M. Sanders, MD, MPH,
Valerie T. Thompson, MD and
James D. Wilkinson, MD, MPH
Department of Pediatrics, University of Miami School of Medicine, Miami, Florida
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ABSTRACT
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OBJECTIVES. Eighty million US adults have low health literacy, a risk factor for increased health care use among adults. The purpose of this work was to assess the association between caregiver health literacy and the use and cost of child health services.
METHODS. We conducted a cross-sectional study of caregiver-child dyads from a sample of children aged 12 months to 12 years presenting to the pediatric emergency department of an urban, public hospital. Caregiver health literacy was measured by the Short Test of Functional Health Literacy in their preferred language (English or Spanish). Child health care use was measured by a 12-month retrospective review of the public hospital system's electronic database and of state Medicaid billing records for 4 types of visits: preventive care, urgent care, emergency care, and hospital care. Cost of child health care use was provided by Medicaid billing records. Multivariate analysis included caregiver education, age, and language proficiency, as well as child age, special health care needs, ethnicity, and health-insurance coverage.
RESULTS. A total of 290 dyads were enrolled in the study. Twenty-two percent of caregivers had low (inadequate or marginal) health literacy. Caregivers with low health literacy were more likely to have less than a high school education, to have limited English proficiency, and to have been born outside the United States. There were no differences in health care use or cost between children of caregivers with low health literacy and children of caregivers with adequate health literacy. Three caregiver characteristics were associated with increased use of child health care services: born outside the United States, age at child’s birth <24 years, and limited English proficiency.
CONCLUSIONS. One in 5 caregivers of young children has low health literacy. Caregiver health literacy, however, was not associated with disparities in the use of child health services in this inner-city, ethnic minority population.
Key Words: health literacy • primary caregiver • use of pediatric health services
Abbreviations: RA—research assistant • OR—odds ratio • CI—confidence interval
Health literacy is defined by the Institute of Medicine as "the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions."1 More than 80 million US adults have low health literacy.2,3 Adults with low health literacy skills are unable to use basic health materials, such as appointment slips, patient-education brochures, or instructions to take medication on an empty stomach.4,5,6 In the pediatric setting, many patient education materials are written at or above the grade 8 level, the median reading level of caregivers of young children.7–10 Controlling for age, race, and socioeconomic status, adults with limited health literacy have a significantly increased risk of hospitalization and decreased rates of adherence to chronic illness regimens.11–15 Limited health literacy is estimated to cost the US health care system more than $50 billion per year.16–18
The association between caregiver health literacy and child health outcomes, however, is not as well studied. Studies in both the United States and developing nations have noted that low maternal educational attainment is independently associated with higher risks of infant mortality and other negative child health outcomes.19,20 Few published studies, however, have sought to assess the role of health literacy, a skill set distinct from educational attainment, in explaining child health outcomes. Adolescents who read below grade level are significantly more likely to experience significant injury or to have been exposed to violence.21 Several studies have suggested associations between maternal literacy skills and maternal factors that are important for infant health, such as smoking and breastfeeding.22,23 Only 2 studies have described a relationship between caregiver health literacy and child health outcomes, both in the context of chronic illness management.24,25
The aim of this study was to describe the relationship between caregiver health literacy and the use of child health care services. We hypothesized that, compared with children of caregivers with adequate health literacy, children of caregivers with inadequate health literacy would have increased health care use, increased use of urgent care services, and decreased access to primary care. We further hypothesized that, despite measuring literacy skills in each adult's native language, some of this disparity would be explained by English language proficiency.
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METHODS
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Study Population
Participants were child-caregiver dyads. Eligible child participants were children aged 12 months to 12 years who presented for care to the pediatric emergency department of an urban, public hospital between October 1, 2003, and March 31, 2004. Eligible caregiver participants were individuals who reported that they were 1 of the child's primary caregivers (ie, mother, father, grandparent, or legal guardian "who cares for the child most of the time"). Exclusion criteria were child in acute distress, caregiver's inability to speak either English or Spanish, or caregiver age <18 years. Participants were recruited sequentially during five 4-hour shifts over each 7-day period.
One of 2 trained, bilingual research assistants (RAs) invited the eligible caregiver participant to a private booth in the corner of the emergency department registration area. The RA explained the study verbally, according a plain-language script. Informed consent was obtained verbally and in writing, using an informed-consent document written at the fifth-grade level. Informed consent included consent for the investigators to search hospital and Medicaid data files for information about the number and type of health care visits made by the child. Each eligible adult participant who offered informed consent was asked to complete a 10-minute, interviewer-administered survey followed by an 8minute, self-administered test of health-literacy skills. The procedure and the informed consent documents were approved by the Human Subjects Review Office at the University of Miami School of Medicine.
Measures
Health Literacy
The primary independent variable for this study was caregiver health literacy, which was measured with the self-administered Short Test of Functional Health Literacy of Adults.26 This test is available and validated in both English and Spanish. Its components include fill-in-the-blank passages from common health care documents, such as an appointment slip, a typewritten prescription, a financial aid form, and a gastrointestinal contrast study. The test is well validated against other measures of literacy and reading ability. Adults with a score of <17 of a possible 36 are considered to have inadequate health literacy. Those with a score of 17 to 22 are considered to have marginal health literacy. Those with a score of 
23 are considered to have adequate health literacy.
Child Health Care Use
Two methods were used to ascertain each child's use of health care over a 12-month period. For each child, the hospital system's electronic records were accessed to obtain record of all visits to inpatient and outpatient facilities between September 1, 2003, and August 30, 2004. For each child, Florida state records were accessed to obtain record of all of the Medicaid-funded visits to inpatient and outpatient facilities between September 1, 2003, and August 30, 2004. Each visit was categorized as one of the following: preventive care (including subspecialty care visits), urgent care (not in the emergency department), emergency care (emergency department), and use of hospital-based care (inpatient or outpatient).
Cost of Child Health Care Use
Cost data were provided by Florida state records of total dollar amount billed to Medicaid for each child during the same time period. Cost data were segregated by type of care provided: preventive care, acute care, emergency care, or hospital-based care.
Child Access to Care
Access to care was measured by parent report of child health insurance coverage, adult health insurance coverage, and child's usual source of care. An independent measure of adequate access to primary care was determined differentially by age. For children 
2 years of age at study enrollment, adequate access to primary care was defined as 2 visits for preventive care in either the hospital or Medicaid records. For children >2 years of age at study enrollment, adequate access to primary care was defined as 1 visit for preventive care in either the hospital or Medicaid records.
The survey included additional information about family characteristics. Sociodemographic information included questions about age, gender, educational achievement, occupation, ethnicity, and birthplace for all of the household members. For consistency, the term "foreign born" has been used in text and tables to indicate respondents (or children) who indicate that they were born outside the United States. Socioeconomic status was assigned into 1 of 3 categories (upper middle, middle, or lower middle) based on the occupations of primary caregivers in the home, as described previously.27,28 A subject was considered to have limited English proficiency if he or she did not report that they could speak English "very well." Child chronic illness status was assessed through use of the 5-item Children With Special Health Care Needs Screener.29 Each child's health-related quality of life was measured by the PedsQL, a 16-item tool, validated in English and Spanish, to assess the functional health of a child by caregiver report in 4 domains: physical, emotional, school related, and psychosocial.30 Child-centered literacy orientation was assessed with 3 questions that inquired about the child's 3 favorite activities, the caregiver's 3 favorite activities with the child, and the frequency of caregiver reading aloud with the child in the previous week.31
Analysis
We described the prevalence of inadequate, marginal, and adequate health literacy in the sample. For subsequent analyses, we compared the 3 groups with analysis of variance and posthoc analysis. First, we compared the groups for significant differences in individual characteristics known to be associated with child health care use: caregiver education, socioeconomic status, English as primary language, United States as place of birth, child age, caregiver age, child chronic illness, child's usual source of care, child insurance status, and level of satisfaction with pediatric primary care. Second, we compared the 2 groups for differences in mean use of all child health care services, analyzed separately by hospital and Medicaid report. Finally, we examined associations between the dependent variable "high child utilizer of care" (more than median health care use), using multiple logistic regression models. Variables that were significant in the univariate analysis were included in the initial logistic regression models. Parsimonious models were then developed through backward stepwise elimination of variables that did not significantly contribute to the goodness of fit of initial models using the likelihood ratio and Hosmer-Lemeshow statistics. All of the analyses were conducted using SPSS 13.0 (SPSS, Inc, Chicago IL).
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RESULTS
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A total of 290 dyads were enrolled in the study. By the Short Test of Functional Health Literacy of Adults measure, 1 in 5 caregivers had limited health literacy: 18.1% with inadequate health literacy and 4.7% with marginal health literacy. Low-literacy caregivers were more likely to have less than a high school education, to have low-income socioeconomic status, to have limited English proficiency, and to be foreign born. Adequate-literacy caregivers were also more likely to read aloud with their children (see Table 1). The relationship between caregiver literacy and reading aloud remained significant in multivariate analysis after controlling for socioeconomic status, English language proficiency, and place of birth.
Children of low-literacy caregivers had more health care visits overall when compared with adequate literacy caregivers, but the difference was not statistically significant. The number of visits was similar across all 3 groups of caregiver literacy skills, whether analyzed by Medicaid records (12.4 vs 10.3 vs 10.2; P = .532) or by hospital records (2.3 vs 1.9 vs 2.0; P = .779; see Table 2). Similarly, children's access to care was no different when compared across different levels of caregiver health literacy (see Table 3).
Children of caregivers with low health literacy had increased mean health care costs in each category studied. Children of caregivers with low health literacy had mean annual outpatient health care costs of $1657.90, compared with $1514.74 for children of caregivers with adequate health literacy. This trend toward increasing costs, however, was not statistically significant (see Table 4).
The only caregiver characteristic associated with increased child health care use was limited English proficiency. The relationship between limited English proficiency and increased total child health care use (adjusted odds ratio [OR]: 2.17; 95% confidence interval [CI]: 1.06–4.43) and urgent child health care use (adjusted OR: 2.48; 95% CI: 1.2–5.4) remained significant after controlling for child and caregiver age, caregiver education, family socioeconomic status, child with special health care needs, and caregiver health literacy (see Tables 5 and 6).
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DISCUSSION
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In a middle-income, urban, ethnic minority community, 1 in 5 caregivers of young children have low health literacy. These caregivers (mostly mothers) are unable to read and understand basic written health information. The study also extends findings from a previous study demonstrating that caregivers with low health literacy are less likely to read aloud with their young children32 and suggests that this association extends to older children as well.
Nonetheless, when compared with caregivers with adequate health literacy, caregivers with limited health literacy are no more or less likely to access health services for their children. This nonassociation between child health services use and adult health literacy runs counter to repeated findings of strong associations between adult health care use and adult health literacy skills. It is consistent, however, with 1 recent study that found no relationship between caregiver reading skills and the ability to understand child health information.33
Several theories may explain the finding that low literacy skills is not a significant barrier to care in pediatrics. Children's health needs may be fewer and less demanding than adults' health needs. However, this is an unlikely explanation; within the subsample of children with special health care needs (n = 39), caregiver health literacy was still not associated with health care use. Another explanation may be that caregivers accessing care for young operate in a different environment than adults accessing their own care. When confronted with an urgent health problem for a child, caregivers may be more likely to seek information through a network of other caregivers who have knowledge of child health or health systems. The health system may also be more welcoming to child caregivers than to adults seeking their own care. This combination of communal assets may afford a child and his/her caregiver with the benefits of a greater "collective" health literacy than that available to an adult seeking care for his/her own condition.31
A final possibility is that the study design may have biased the findings toward the null hypothesis. The primary dependent variables, measuring child health care use over a 12-month period, were subject to selection bias. Hospital-reported data excluded visits outside the public hospital system; although this system provides the primary or only health care services for all uninsured and most publicly insured children in the county, some of these children receive some of their primary and urgent care at clinics and hospitals outside the public hospital system. Medicaid-reported data were also subject to selection bias, because data were unavailable for subjects who were uninsured or privately insured. The primary independent variable, caregiver health literacy, may have served in this study as a proxy for caregiver acculturation. Strong relationships were between inadequate caregiver health literacy, on the one hand, and both foreign-born status and limited English proficiency, on the other. Inclusion of caregivers with limited literacy skills was also subject to selection bias. Although the RAs were trained to provide informed consent information verbally in a careful, clear, and sensitive manner, some individuals with very low literacy skills may have been less likely to enroll in the study because of their inability to understand the informed consent information. Finally, because this was a cross-sectional study, no inferences about causation may be made.
Nonetheless, disparities in the use of child health care service persist. This study further substantiates the known associations between child health care use and caregiver acculturation (as measured in this study by place of birth and English language proficiency). Navigating the child health care system may be particularly challenging for caregivers who have grown up with health care systems outside the United States or who have limited English proficiency. This continues to be true even in a health care environment such as Miami-Dade County, Florida, where a majority of residents speak Spanish in their homes and where more than one third were born outside the United States.
This study is the first attempt, to our knowledge, to assess the relationship between caregiver literacy and child health care use in a community-based sample of children with and without special health care needs. Although inadequate health literacy remains a significant, underrecognized problem affecting health disparities, its influence may not be felt at the level of child health resource use. Understanding the relationship between caregiver health literacy and child health outcomes, however, bears reflection and further study, particularly in populations of children with the greatest health care needs. Poor health literacy among caregivers may impair child health care more directly and more intimately than at the health systems level. It may impair the ability of pediatric providers to deliver useful health education and anticipatory guidance for underserved families. It may limit a family's access to printed information about medication use, healthy behaviors, and available medical services.34 As an economic handicap, poor literacy compounds the problems of poverty and income inequality, further limiting access to better jobs, safer living conditions, and an expanded social support network.35 As a source of low self-esteem, poor literacy diminishes a person's self-efficacy for disease self-management and preventive care practices.36 As a culture, the world of poor health literacy is poorly understood and rarely considered by health care practitioners.37 Understanding poor health literacy is necessary to develop effective patient education materials, improve cultural competence in patient-doctor communication, provide adequate structures for informed consent, improve adherence to chronic illness management, and eliminate ethnic disparities in health care access and quality.
Future scholarship in pediatric health literacy can help improve child health by fostering efforts to improve the health literacy of children and families by providing guidelines for health systems to develop more effective health education programs for families and by increasing awareness and improving the communication skills of pediatric providers. Interventions that the Institute of Medicine has recommended to address health literacy, such as reducing the literacy level of pediatric health information and providing better health education at critical points of care, may still contribute significantly to efforts to reduce child health disparities.
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ACKNOWLEDGMENTS
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This research was funded with a grant from the Robert Wood Johnson Generalist Physician Scholars Program. We are also grateful to the Florida Agency for Health Care Administration for their support.
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FOOTNOTES
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Accepted Jul 31, 2006.
Address correspondence to Lee M. Sanders, MD, MPH, Department of Pediatrics, University of Miami School of Medicine, 1601 NW 12th Ave, Suite 4063, Miami, FL 33136. E-mail: leesanders@miami.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
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PEDIATRICS (ISSN 1098-4275). ©2007 by the American Academy of Pediatrics
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ABSTRACT
METHODS
