Caregiver Health Literacy Research Articles

Disease-Specific Knowledge Assessment of Caregivers Is a Better Predictor of Health Care Utilization Than Caregiver Functional Health Literacy Among Children with Sickle Cell Disease

Abstract 4240 Background:Recent data suggests 20–30% of parents of young children in the United States have low health literacy. Caregiver health literacy has implications for recognizing illness and can affect child health outcome. We used the Short Test of Functional Health Literacy in Adults (S-TOFHLA), a 36-item validated measure of functional health literacy (FHL) that can be administered in a short period of time, to identify caregivers of children with sickle cell disease that had inadequate or marginal FHL. We further sought to identify caregivers’ disease-specific knowledge (DSK) deficits by administering our own unique questionnaire. We then determined if FHL and DSK were related to emergency department (ED) visits and hospitalizations. Methods:We conducted a cross-sectional study of caregiver-child dyads from a sample of children aged 12 months to 18 years that presented to routine visits in a comprehensive sickle cell clinic at an urban teaching hospital. Caregivers were administered the S-TOFHLA and also given a 22-item questionnaire assessing both demographic data and also qualitative and quantitative measures of DSK. A 12-month retrospective review of the child's electronic medical record was then performed to determine number of annual emergency room visits and hospital admissions at our institution. Results:A total of n=85 caregiver-child dyads were enrolled in the study during one year of recruitment. On the S-TOFHLA, only 3/85 caregivers (3.5%) had inadequate or marginal FHL. Of all 85 caregivers, 82% identified themselves as mothers to the patient, while 6% were fathers. Nearly 97% graduated from high school. We selected 12 unique items assessing DSK on our questionnaire and gave each item a value of 1 point. Caregivers were divided based on correct answers to these 12 items using a median split, with 49/85 caregivers (n1) scoring between 9–12 and 36/85 caregivers (n2) scoring 8 or less. Although there was no difference in FHL outcome between the two groups, those in n1 scored slightly higher on the 36-item S-TOFHLA than those in n2 (average 33/36 vs. 34/36, p=0.01). Group n1 was more likely to have attended college (p=0.03) and children of caregivers in this group were younger (average age 9 years vs. 12 years, p=0.008). Children of caregivers in n1 were nearly twice as likely to visit the ED than those in n2 (p<0.01). Rates of hospitalizations were similar between the two groups, but the ratio of hospitalizations to ED visits for group n1 was 1.3 times that of n2. Conclusion:Only 3.5% of caregivers of children with sickle cell disease had inadequate or marginal FHL. Our data suggests caregivers with more DSK were more educated and more likely to identify illness in their children. Knowledge-based questionnaires for chronic childhood illnesses such as sickle cell disease may be more useful than standard measurements of FHL to assess caregivers' ability to identify and react to illness. Disclosures:No relevant conflicts of interest to declare.

The Association of Acculturation and Health Literacy, Numeracy and Health-Related Skills in Spanish-speaking Caregivers of Young Children

Little is known about the relationship among acculturation, literacy, and health skills in Latino caregivers of young children. Latino caregivers of children < 30 months seeking primary care at four medical centers were administered measures of acculturation (SASH), functional health literacy (STOFHLA), numeracy (WRAT-3) and health-related skills (PHLAT Spanish). Child anthropomorphics and immunization status were ascertained by chart review. Caregivers (N = 184) with a median age of 27 years (IQR: 23-32) participated; 89.1% were mothers, and 97.1% had low acculturation. Lower SASH scores were significantly correlated (P < 0.01) with lower STOFHLA (ρ = 0.21), WRAT-3 (ρ = 0.25), and PHLAT Spanish scores (ρ = 0.34). SASH scores predicted PHLAT Spanish scores in a multivariable linear regression model that adjusted for the age of child, the age and gender of the caregiver, number of children in the family, the type of health insurance of the caregiver, and study site (adjusted β: 0.84, 95% CI 0.26-1.42, P = 0.005). This association was attenuated by the addition of literacy (adjusted β: 0.66, 95% CI 0.11-1.21, P = 0.02) or numeracy (adjusted β: 0.50, 95% CI -0.04-1.04, P = 0.07) into the model. There was no significant association between acculturation and up-to-date child immunizations or a weight status of overweight/obese. Lower acculturation was associated with worse health literacy and diminished ability to perform child health-related skills. Literacy and numeracy skills attenuated the association between acculturation and child health skills. These associations may help to explain some child health disparities in Latino communities.

Perceived Barriers to Care and Attitudes Towards Shared Decision-making Among Low Socioeconomic Status Parents: Role of Health Literacy

ObjectiveAlthough low parent health literacy (HL) has been linked to poor child health outcomes, it is not known whether differences in perceptions related to access to care and provider–parent partnership in care are potential contributing factors. We sought to assess whether parent HL is associated with differences in perceived barriers to care and attitudes regarding participatory decision-making with the provider. MethodsThis was a cross-sectional analysis of data collected from parents presenting with their child to an urban public hospital pediatric clinic in New York City. Dependent variables were caregiver-reported barriers to care (ability to reach provider at night/on weekends, difficult travel to clinic) and attitudes towards participatory decision-making (feeling like a partner, relying on doctor’s knowledge, leaving decisions up to the doctor, being given choices/asked opinion). The primary independent variable was caregiver HL (Short Test of Functional Health Literacy in Adults [S-TOHFLA]). ResultsA total of 823 parents were assessed; 1 in 4 (27.0%) categorized as having low HL. Parents with low HL were more likely to report barriers to care than those with adequate HL: trouble reaching provider nights/weekends, 64.9% vs. 49.6%, (p < 0.001, adjusted odds ratio [AOR] 1.7, 95% confidence interval [95% CI] 1.2–2.4); difficult travel, 15.3% vs. 8.0%, (p = 0.004, AOR 1.8, 95% CI 1.1–3.0). Low HL was also associated with not feeling like a partner (28.8% vs. 17.1%; AOR 2.0; 95% CI 1.4–3.0), preference for relying on the doctor's knowledge (68.9% vs. 52.2%; AOR 1.7; 95% CI 1.2–2.4), and preference for leaving decisions up to the doctor (57.7% vs. 33.3%; AOR 2.2; 95% CI 1.6–3.1). ConclusionsAddressing issues of parent HL may be helpful in ameliorating barriers to care and promoting provider-parent partnership in care.

Use of a Pictographic Diagram to Decrease Parent Dosing Errors With Infant Acetaminophen: A Health Literacy Perspective

Objective Medication dosing errors by parents are frequent. We sought to whether a pictographic dosing diagram could improve parent ability to dose infant acetaminophen, and to determine whether pictogram benefit varies by health literacy level. Methods We conducted an experimental study of parents presenting with their children to an urban public hospital pediatric clinic. Caregivers were randomized to dose infant acetaminophen with a standard dropper using text-only or text-plus-pictogram instructions (pictographic diagram of dose). The primary outcome variable was dosing accuracy (error defined as >20% deviation above/below dose; large overdosing error defined as >1.5 times recommended dose). Caregiver health literacy was assessed by means of the Newest Vital Sign measure. Results A total of 299 parents were assessed (144 text-only instructions; 155 text plus pictogram); 77.9% had limited health literacy (Newest Vital Sign score 0–3). Text-plus-pictogram recipients were less likely to make an error compared to text-only recipients (43.9% vs 59.0%, P = .01; absolute risk reduction, 15.2% [95% confidence interval, 3.8–26.0]; number needed to treat, 7 [4–26]). Of text-plus-pictogram recipients, 0.6% made a large overdosing error compared to 5.6% of text-only recipients (absolute risk reduction, 4.9% [0.9–10.0]; number needed to treat, 20 [10–108]). Pictogram benefit varied by health literacy, with a statistically significant difference in dosing error evident in the text-plus-pictogram group compared to the text-only group among parents with low health literacy (50.4% vs 66.4%; P = .02), but not for parents with adequate health literacy ( P = .7). Conclusions Inclusion of pictographic dosing diagrams as part of written medication instructions for infant acetaminophen may help parents provide doses of medication more accurately, especially those with low health literacy. High error rates, even among parents with adequate health literacy, suggest that additional study of strategies to optimize dosing is needed.

Caregiver health literacy and adherence to a daily multi-vitamin with iron regimen in infants

Objective To determine whether or not limited caregiver health literacy is associated with adherence to a daily multi-vitamin with iron regimen in infants. Methods 110 caregiver/infant dyads were enrolled in a prospective study to assess the relationship between caregiver health literacy and adherence to a daily multi-vitamin with iron regimen for infants. Households were contacted biweekly over a 3-month period. Adherence was based upon caregiver report. High adherence, our primary outcome, was defined as the administration of the multi-vitamin with iron on 5–7 days over the past week. Results As measured by the Short Test of Functional Health Literacy in Adults (S-TOFHLA), 18% of caregivers had limited health literacy skills. Caregivers with limited health literacy skills were more likely to have higher adherence than caregivers with adequate health literacy, after adjusting for a number of possible confounding variables (AOR = 2.13; 95% 1.20–3.78). Conclusion Caregivers with limited health literacy were twice as likely to report high adherence to a daily multi-vitamin with iron regimen in infants as caregivers with adequate health literacy in adjusted analysis. Practice implications Health literacy may exert a differential influence on adherence depending upon the complexity of the desired health behavior.

Understanding the impact of family caregiver cancer literacy on patient health outcomes

Objective Family caregivers play a significant role in the diagnosis, treatment, and recovery of individuals with cancer. This position paper reviews and links the research on family caregiving and health information with the importance of cancer literacy. Method Review of literature obtained through searching in Academic Search Premier, EBSCO, Communication and Mass Media Complete, PsychArticles, PsycInfo, and Health Source: Nursing/Academic Edition library databases. Results Family members are important sources of health information, informal caregivers who learn and enact medical procedures, and influential aspects of patients’ healthcare and treatment decision-making, but are not seriously considered by healthcare practitioners or researchers in terms of assessing and improving health literacy. Further, very few studies have directly examined or acknowledged the potential importance of family caregiver health literacy. Conclusion The extent to which family caregivers can comprehend the health information they receive along with the patient is crucial for the patient to achieve the most successful health outcome. Practice implications To acknowledge the impact that family caregiver health literacy could have on patient health outcomes, targeted practical recommendations for understanding family caregiver health literacy in the cancer context are proposed: (1) family member health literacy should be assessed; (2) close relational partners should be trained as peer health educators; (3) written cancer information should be provided directly to family caregivers; (4) health interactions between family caregivers and patients should be improved; (5) theoretical perspectives into the understanding of family caregiver health literacy should be integrated into practice; and (6) patient and family caregiver health literacy should be improved.

Unconventional Solution: A Marketing Approach to Solving Health Literacy Disparities: In Reply

To the Editor .— We read with interest the recent report from Sanders et al1 in regard to the association between caregiver's health literacy and the use of child health services. Their finding raises an important question about the true role that health literacy plays in health outcomes. A large body of research suggests that health illiteracy does not completely account for suboptimal outcomes. For example, some studies found that illiteracy was associated with reduced knowledge about medications,2 participation in research,3 and compliance with medical regimens,4 which indicates that illiteracy might be an important factor in poor disease management. However, other researchers have failed to identify an association between illiteracy and reduced odds of …

Unconventional Solution: A Marketing Approach to Solving Health Literacy Disparities

To the Editor .— We read with interest the recent report from Sanders et al1 in regard to the association between caregiver's health literacy and the use of child health services. Their finding raises an important question about the true role that health literacy plays in health outcomes. A large body of research suggests that health illiteracy does not completely account for suboptimal outcomes. For example, some studies found that illiteracy was associated with reduced knowledge about medications,2 participation in research,3 and compliance with medical regimens,4 which indicates that illiteracy might be an important factor in poor disease management. However, other researchers have failed to identify an association between illiteracy and reduced odds of …

Association of Low Caregiver Health Literacy With Reported Use of Nonstandardized Dosing Instruments and Lack of Knowledge of Weight-Based Dosing

Caregivers of young children frequently measure doses of liquid medications incorrectly. Use of nonstandardized dosing instruments and lack of knowledge that dosing is weight-based contribute to dosing errors. We sought to assess whether low caregiver health literacy was associated with these outcomes. This was a cross-sectional analysis of caregivers presenting to an urban pediatric emergency room. Dependent variables were caregiver reported use of nonstandardized dosing tools and knowledge of weight-based dosing. The independent variable was caregiver health literacy (Test of Functional Health Literacy in Adults [TOFHLA]). Two hundred ninety-two caregivers were assessed: 23.3% reported use of nonstandardized liquid dosing instruments, and 67.8% were unaware of weight-based dosing. Caregivers who were unaware of weight-based dosing were more likely to use nonstandardized dosing tools (28.3% vs 12.8%; P = .003). In unadjusted analyses, overall health literacy, reading comprehension, and numeracy were all associated with both dependent variables. In analyses adjusting for child age, health care experiences, and caregiver acculturation and education, inadequate/marginal overall health literacy was associated with lack of knowledge of weight-based dosing (adjusted odds ratio [AOR] 2.3; P = .03), whereas lower reading comprehension was associated with both lack of knowledge (AOR 2.0; P = .03) and reported use of nonstandardized instrument (AOR 2.4; P = .007). Low health literacy, in particular reading comprehension, was associated with reported use of nonstandardized dosing instruments and lack of knowledge regarding weight-based dosing. Both caregiver health literacy and sociodemographic factors should be considered in the design of interventions to prevent medication administration errors.

Caregiver Health Literacy and the Use of Child Health Services

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. 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. 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. 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.

A Special Issue: Coding for Children With Special Health Care Needs

A Special Issue: Coding for Children With Special Health Care Needs

Pediatric Asthma: Caregiver Health Literacy and the Clinician's Perception

Health literacy was assessed in pediatric asthma caregivers attending a university-based clinic. The medical provider's perception of caregiver health literacy was also examined. Eighty-six percent of the caregivers had adequate health literacy, 4% and 10% had marginal and inadequate health literacy, respectively. Health literacy was significantly higher for caregivers who were younger (p = 0.039) and had a higher level of education (p = 0.037). An agreement analysis revealed moderate agreement between provider perception of caregiver's health literacy and measured health literacy (Kappa = 0.51). The results suggest that medical providers may not accurately assess caregivers' actual health literacy level.