Caregiver Health Literacy Research Articles

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

ABSRACTWe interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.

Health literacy of caregivers of adult care recipients: A systematic scoping review.

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English-language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight-item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut-off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self-management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.

Health Literacy in Parkinson's Disease Caregivers (P1.021)

Health Literacy in Parkinson's Disease Caregivers (P1.021)

Health literacy and disease-specific knowledge of caregivers for children with sickle cell disease

ABSTRACTThis study was conducted to measure the health literacy (HL) and disease-specific knowledge (DSK) of caregivers for children with sickle cell disease (SCD) and relate them to their child's health care utilization. The authors conducted a cross-sectional study of caregiver-child dyads attending an urban pediatric sickle cell clinic. Caregivers were administered the Shortened Test of Functional Health Literacy (S-TOFHLA) and a locally developed DSK questionnaire. Retrospective review of the child's electronic medical record (EMR) was performed to determine annual emergency department (ED) visits and hospitalizations. A total of 142 caregiver-child dyads were recruited for the study. Less than 5% of caregivers had limited HL, with less education (P =.03) and primary language other than English (P =.04) being the only risk factors. Although caregiver HL was not associated with ED visits or hospitalizations, surprisingly DSK was. Caregivers with higher DSK scores had children with higher annual rates of ED utilization (P =.002) and hospitalizations (P =.001), and these children were also more likely to be classified as high ED utilizers (≥4 visits per year; P =.01). Further, caregiver adherence to medication and clinic visits was associated with their child's age (P =.01). Although HL and DSK are both constructs that measure basic health understanding, they differently affect caregivers' ability to navigate and understand the health care system of children with chronic illnesses. This study suggests that the DSK/health care utilization relationship may be a more important measure than HL for programs following children with sickle cell disease and could also have applications in other pediatric chronic diseases.

Associations Between Caregiver Health Literacy and Preschool Children's Secondhand Smoke Exposure.

Examine the associations between caregiver health literacy (HL) and smoking-related outcome expectancies, implementation of home/car smoking bans (H/CSBs), and child secondhand smoke exposure (SHSe). Caregivers of Head Start children residing with a smoker(s) completed measures assessing HL, outcome expectancies, and H/CSB implementation. Biomarkers of child SHSe included home air nicotine monitors and child salivary cotinine. Caregivers with lower HL had higher levels of home air nicotine and child salivary cotinine in the full sample and among smokers. After controlling for child age and number of smokers in the home, lower HL was associated with higher endorsement of negative smoking expectancies in the full sample and in smokers. HL was not associated with H/CSB implementation across groups. Caregiver HL is associated with child SHSe and is important in shaping smoking-related beliefs. HL is not directly related to adoption of SHSe-reduction behaviors such as H/CSBs.

Using pictograms to assist caregivers in liquid medication administration: a systematic review.

It has been reported that more than 80% of out-of-hospital medication errors among the young children involve liquid formulations. The usefulness of pictorial aids to improve communication of medication instructions has not been extensively investigated for child health. The objective of this study was to determine the effectiveness of pictorial aids used to assist caregivers in the administration of liquid medications. MEDLINE, CINAHL, PsycINFO, ScienceDirect, Scopus and the Cochrane Library were searched for articles published up to February 2015. Studies that used pictorial aids with liquid medications and measured at least one of the following outcomes were included: dosing accuracy, comprehension of medication instructions, recall of information and adherence of caregivers. Two authors independently selected studies, extracted data and assessed methodological quality of studies using the Cochrane Collaboration's tool. Five experimental studies (four hospital based and one community based) with a total of 962 participants were included. A wide range of liquid formulations were studied, including both prescription and over-the-counter medications. The existing findings suggest that pictographic interventions reduced dosing errors, enhanced comprehension and recall of medication instructions and improved adherence of caregivers. Incorporating pictorial aids into verbal medication counselling or text-based instructions was more beneficial than using the single approach alone. Mixed results were identified for the relationship between health literacy of caregivers and effectiveness of pictorial aids. The evidence remains limited due to the small number of studies found and variations in methodological quality. This review suggests that pictorial aids might be potential interventions, but more high-quality studies are needed to support the routine use of any pictogram-based materials with liquid medications in the clinical settings.

A Pilot Study: Evaluating the Impact of Health Literacy and Physician Education Needs of Caregivers on the Management of Reproductive Health of Adolescents With Developmental Disability

A Pilot Study: Evaluating the Impact of Health Literacy and Physician Education Needs of Caregivers on the Management of Reproductive Health of Adolescents With Developmental Disability

Health literacy and medication administration performance by caregivers of adults with developmental disabilities

ObjectivesTo measure health literacy (HL) of caregivers of adults with intellectual/developmental disabilities (IDDs); to determine the association between HL and a medication administration task (MAT) assessment; and to identify caregiver characteristics associated with higher HL and MAT scores. DesignCross-sectional study. SettingSoutheastern Michigan. ParticipantsCaregivers, aged 18 years or older, who provided supportive care of adults with IDDs. InterventionsSurvey and demonstration. Main Outcome MeasuresShort Test of Functional Health Literacy in Adults (STOFHLA); a MAT assessment consisting of interpretation of five sets of medication instructions followed by demonstration of understanding using a pill box; and a survey of caregivers’ demographics, medication-related experiences, education, characteristics of persons for whom they provide care, and care-related activities performed. ResultsA total of 47 caregivers provided data. Caregivers had a mean age of 45.7± years; 41 (87.2%) were women and 38 (80.9%) had education beyond high school. Caregivers were involved in obtaining medication from pharmacies, reminded the person with IDD to take medications and/or administered them to the person, documented medication and health information, and accompanied persons with IDD to physician offices. Most did not conduct monitoring procedures. The STOFHLA mean score was 34.5± (median, 35; range, 22–36), while the MAT mean score was 12.0± (median, 12; range, 6–15). Compared with family caregivers, direct support staff more frequently had undergone some medication training and had other people with whom they could discuss medication questions, but they had worked with the person with IDD a significantly shorter amount of time. No significant differences in STOFHLA and MAT scores between the family caregivers and direct support staff were observed. Caregiver education was significantly correlated with the STOFHLA score. MAT scores were not significantly correlated with caregiver characteristics. ConclusionCaregivers are involved in the medication use process for people who have IDD. Ensuring caregiver understanding of medication regimens and/or improving medication-related HL may be an important step to ensure safe and effective use of medications by people with IDD.

Development of a conceptual model of cancer caregiver health literacy.

Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers' capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy. Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model. Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems. The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy.

Health Literacy Affects Likelihood of Radiology Testing in the Pediatric Emergency Department

To test the hypothesis that the effect of race/ethnicity on decreased radiologic testing in the pediatric emergency department (ED) varies by caregiver health literacy. This was a secondary analysis of a cross-sectional study of caregivers accompanying children ≤ 12 years to a pediatric ED. Caregiver health literacy was measured using the Newest Vital Sign. A blinded chart review determined whether radiologic testing was utilized. Bivariate and multivariate analyses, adjusting for ED triage level, child insurance, and chronic illness were used to determine the relationship between race/ethnicity, health literacy, and radiologic testing. Stratified analyses by caregiver health literacy were conducted. Five hundred four caregivers participated; the median age was 31 years, 47% were white, 37% black, 10% Hispanic, and 49% had low health literacy. Black race and low health literacy were associated with less radiologic testing (P < .01). In stratified analysis, minority race was associated with less radiologic testing only if a caregiver had low health literacy (aOR 0.5; 95% CI 0.3-0.9), and no difference existed in those with adequate health literacy (aOR 0.7; 95% CI 0.4-1.3). Caregiver low health literacy modifies whether minority race/ethnicity is associated with decreased radiologic testing, with only children of minority caregivers with low health literacy receiving fewer radiologic studies. Future interventions to eliminate disparities in healthcare resource utilization should consider health literacy as a mutable factor.

Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing.

BackgroundHealth literacy refers to an individual’s ability to engage with health information and services. Cancer caregivers play a vital role in the care of people with cancer, and their capacity to find, understand, appraise and use health information and services influences how effectively they are able to undertake this role. The aim of this study was to develop an instrument to measure health literacy of cancer caregivers.MethodContent areas for the new instrument were identified from a conceptual model of cancer caregiver health literacy. Item content was guided by statements provided by key stakeholders during consultation activities and selected to be representative across the range of cancer caregiver experiences. Content validity of items was assessed through expert review (n = 7) and cognitive interviews with caregivers (n = 16).ResultsAn initial pool of 82 items was generated across 10 domains. Two categories of response options were developed for these items: agreement with statements, and difficulty undertaking presented tasks. Expert review revealed that the majority of items were relevant and clear (Content Validity Index > 0.78). Cognitive interviews with caregivers suggested that all except three items were well understood.ConclusionA resultant 88 item questionnaire was developed to assess cancer caregiver health literacy. Further work is required to assess the construct validity and reliability of the new measure, and to remove poorly performing and redundant items, which will result in a shorter, final measure. The new measure has the potential to inform the development and evaluation of interventions and the improvement of health service delivery to cancer caregivers.

Measuring health literacy in caregivers of children: a comparison of the newest vital sign and S-TOFHLA.

We examined the performance of the Newest Vital Sign (NVS) and the Short Test of Functional Health Literacy in Adults (S-TOFHLA) in caregivers of children. Caregivers of children ≤12 years old seeking care for their child in a pediatric emergency department (ED) were tested using the NVS and the S-TOFHLA to measure health literacy. The results were compared with ED use outcomes. The S-TOFHLA was found to have a ceiling effect as compared to the NVS; few caregivers scored in low literacy categories (P < .0001). This finding was demonstrated in both lower (P = .01) and higher (P < .001) educational attainment groups. The NVS was predictive of ED use outcomes (P = .02 and P < .01) whereas the S-TOFHLA was not (P = .21 and P = .11). The measures do not seem to function similarly nor predict health outcomes equally. The NVS demonstrates sensitivity in identifying limited health literacy in younger adult populations.

Caregiver Low Health Literacy and Nonurgent Use of the Pediatric Emergency Department for Febrile Illness

ObjectiveTo examine the association between caregiver health literacy and the likelihood of a nonurgent emergency department (ED) visit in children presenting for fever. MethodsThis cross-sectional study used the Newest Vital Sign to assess the health literacy of caregivers accompanying children with fever to the ED. Visit urgency was determined by resources utilized during the ED visit. Findings were stratified by race and child age. Chi-square and logistic regression analysis controlling for race were conducted to determine the association between low health literacy and ED visit urgency. ResultsA total of 299 caregivers completed study materials. Thirty-nine percent of ED visits for fever were nonurgent, and 63% of caregivers had low health literacy. Low health literacy was associated with a higher proportion of nonurgent ED visits for fever (44% vs 31%, odds ratio 1.8, 95% confidence interval [CI] 1.1, 2.9). Low health literacy was associated with higher odds of a nonurgent visit in white and Hispanic caregivers but not in black caregivers. In regression analysis, children ≥2 years old had higher odds of a nonurgent visit if caregivers had low health literacy (adjusted odds ratio 2.0; 95% CI 1.1, 4.1); this relationship did not hold for children <2 years old (adjusted odds ratio 0.8; 95% CI 0.4, 1.8). ConclusionsNearly two-thirds of caregivers with their child in the ED for fever have low health literacy. Caregiver low health literacy is associated with nonurgent ED utilization for fever in children over 2 years of age. Future interventions could target health literacy skills regarding fever in caregivers of children ≥2 years.

Low Caregiver Health Literacy Is Associated With Higher Pediatric Emergency Department Use and Nonurgent Visits

ObjectiveWe sought to determine the association between low caregiver health literacy and child emergency department (ED) use, both the number and urgency of ED visits. MethodsThis year long cross-sectional study utilized the Newest Vital Sign questionnaire to measure the health literacy of caregivers accompanying children to a pediatric ED. Prior ED visits were extracted from a regional database. ED visit urgency was classified by resources utilized during the index ED visit. Regression analyses were used to model 2 outcomes—prior ED visits and ED visit urgency—stratified by chronic illness. Analyses were weighted by triage level. ResultsOverall, 503 caregivers completed the study; 55% demonstrated low health literacy. Children of caregivers with low health literacy had more prior ED visits (adjusted incidence rate ratio 1.5; 95% confidence interval 1.2, 1.8) and increased odds of a nonurgent index ED visit (adjusted odds ratio 2.4; 95% confidence interval 1.3, 4.4). Among children without chronic illness, low caregiver health literacy was associated with an increased proportion of nonurgent index ED visits (48% vs 22%; adjusted odds ratio 3.2; 1.8, 5.7). ConclusionsOver half of caregivers presenting with their children to the ED have low health literacy. Low caregiver health literacy is an independent predictor of higher ED use and use of the ED for nonurgent conditions. In children without a chronic illness, low health literate caregivers had more than 3 times greater odds of presenting for a nonurgent condition than those with adequate health literacy.

Health literacy and injury prevention behaviors among caregivers of infants.

Unintentional injury is a leading cause of infant mortality. To examine the role of caregiver health literacy in infant injury prevention behaviors. A cross-sectional analysis of data collected in 2010-2012 from a randomized trial at four pediatric clinics was performed in 2012-2013. Caregiver health literacy was assessed with the Short Test of Functional Health Literacy in Adults. Caregiver-reported adherence to American Academy of Pediatrics-recommended injury prevention behaviors was assessed across seven domains: (1) car seat position; (2) car seat use; (3) sleeping safety; (4) fire safety; (5) hot water safety; (6) fall prevention; and (7) firearm safety. Data were analyzed from 844 English- and Spanish-speaking caregivers of 2-month-old children. Many caregivers were non-adherent with injury prevention guidelines, regardless of health literacy. Notably, 42.6% inappropriately placed their children in the prone position to sleep, and 88.6% did not have their hot water heater set <120°F. Eleven percent of caregivers were categorized as having low health literacy. Low caregiver health literacy, compared to adequate health literacy, was significantly associated with increased odds of caregiver non-adherence with recommended behaviors for car seat position (AOR=3.4, 95% CI=1.6, 7.1) and fire safety (AOR=2.0, 95% CI=1.02, 4.1) recommendations. Caregivers with low health literacy were less likely to be non-adherent to fall prevention recommendations (AOR=0.5, 95% CI=0.2, 0.9). Non-adherence to injury prevention guidelines was common. Low caregiver health literacy was significantly associated with some injury prevention behaviors. Future interventions should consider the role of health literacy in promoting injury prevention.

Who is Billy Reuben? Health literacy and patient education.

The issue of health literacy is focused on whether health consumers understand and are able to apply the information provided to them. In the neonatal setting, limited parent and caregiver health literacy can result in increased stress and poor compliance with instructions. Health literacy and patient education go hand in hand. This article includes an overview of health literacy and how it applies to the neonatal setting. Information is provided to assist with assessing for health literacy. Hints and resources are also provided for improving patient and family education.

Health literacy needs related to incontinence and skin damage among family and friend caregivers of individuals with dementia.

The purpose of this study was to describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with Alzheimer disease (AD) and develop supportive and educational materials that address these needs. Descriptive. The sample included 48 family/friend adult caregivers of individuals who had advanced dementia. Caregivers were spouses (44%), daughters (31%), or extended family members/friends (25%) recruited from community-based agencies, with a mean age of 64 ± 14 years (mean ± SD), and 75% were female. Nearly half (48%) had a racially or ethnically diverse background. Focus groups, interviews, and written surveys were conducted to assess health literacy needs of AD caregivers related to incontinence and skin care; verbal responses were audiotaped, transcribed, and summarized. To address these needs, a set of educational and supportive materials was developed, whose content was directed by caregiver responses and supported by a literature review of current evidence and consultation with clinical and research experts. Study procedures were guided by an advisory committee of AD caregivers. Caregivers had numerous health literacy needs related to incontinence and skin care; areas of need were categorized into knowledge, skills, and attitudes. Caregivers expressed a need to validate the health literacy they possessed. Fourteen educational and supportive documents were developed to address these needs. Materials developed in this study are suitable to incorporate into interventions that support caregivers of persons with AD. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with health care providers, and improve health outcomes of care recipients.

Gender differences in mental health literacy of family caregivers of persons with mental illness: an Indian perspective

Research on mental health literacy in India is limited despite increasing growing evidence of mental illness among general population. Therefore, this study aimed to investigate gender differences in mental health literacy of family caregivers of persons with mental illness. A cross-sectional descriptive survey was carried out among 161 randomly selected caregivers of persons with mental illness at outpatient department of a tertiary care centre. Data were collected through face-to-face interview using a structured questionnaire. This study supports the previous research that gender differences exist in mental health literacy of persons with mental illness. Men were less literate than women regarding knowledge of people with mental illness as well women hold better positive attitudes towards persons with mental illness. Hence, gender differences need to be considered in developing mental health literacy programmes for family caregivers of mentally ill and general population.

Exploring caregiver understanding of medications immediately after a pediatric primary care visit

ObjectiveAssess accuracy of caregiver understanding of children's prescribed medications and examine factors associated with accurate recall. MethodsCross-sectional, observational study of English- or Spanish-speaking caregivers of primary care patients aged 0–7 years. Child and visit characteristics and caregiver health literacy (Short Test of Health Literacy in Adults) were assessed. Post-visit, caregivers completed questionnaires on medications prescribed. Caregiver and medical record agreement on medication name and administration (dose and frequency) were examined using chi square and logistic regression. ResultsAnalyses included 68 caregivers (28% low health literacy); 96% of children had public insurance. Caregivers indicated that the doctor provided clear medication information (100%) and they could follow instructions (98%). 101 medicines were prescribed; 6 were recalled by caregiver only. 71% of medications were accurately named; 37% of administration instructions were accurately recalled. Accurate naming was more often found for patients 3–7 years, without conditions requiring repeat visits, and new medications. Accurate administration responses were associated with having only 1 child at the visit. ConclusionUnperceived medication instruction understanding gaps exist at physician visits for caregivers of all literacy levels. Communication and care delivery practices need further evaluation. Practice implicationsClinicians should be aware of the frequency of caregiver medication misunderstanding.

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

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