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.     

Inadequate Health Literacy Is Associated With Suboptimal Health Beliefs in Older Asthmatics

Objectives. To examine the relationship between suboptimal asthma beliefs and inadequate health literacy among older adults with asthma. Methods. The authors interviewed 100 English- and Spanish-speaking asthmatics (ages ≥50 years) in a New York City primary care clinic (response, 83%). Outcomes included the belief that one does not have asthma when symptoms are absent (no symptoms–no asthma), that asthma is temporary, is curable, and that medications work better if not used all the time. Health literacy was measured using the Short Test of Functional Health Literacy in Adults. Belief and health literacy associations were measured with multivariable logistic regression adjusting for age, sex, and race. Results. The mean age was 61 years; 35% had inadequate health literacy. Those with inadequate literacy were more likely than those with adequate or marginal literacy to have suboptimal beliefs: no symptoms–no asthma, 60% versus 34%, p = .01; temporary, 23% versus 9%, p = .07; curable, 54% versus 25%, p = .004; medication use, 44% versus 21%, p = .03. These relationships remained statistically significant in multivariable analyses that adjusted for age, sex, and race. Conclusions. Suboptimal asthma beliefs were more common among older asthmatics with inadequate health literacy. Interventions to improve asthma self-management in older adults should address both belief and health literacy barriers.     

Using Information Technology to Reduce Asthma Disparities in Underserved Populations: A Pilot Study

Background. Low health literacy has been identified as an independent predictor of poor asthma control. The Institute of Medicine considers the role of information technology (IT) as critical in providing “safe, effective, patient centered, timely, efficient, and equitable” care with the potential to reduce health disparities in underserved populations. The aim of this study was to design and evaluate an interactive computer-based questionnaire to assess asthma symptoms in children of parents with limited health literacy and/or limited English proficiency. Methods. Volunteer caregivers attending a mobile asthma clinic were randomly assigned to complete the electronic or the paper-and-pencil version of an asthma screening questionnaire (ASQ) in their language of choice (English or Spanish). In the electronic version, a tablet computer was used to present the ASQ questions as video clips and to collect information through the touchscreen. Participants also completed a demographic questionnaire, a brief health literacy questionnaire, and a system usability and satisfaction questionnaire. Reliability of the paper and electronic self-assessments was evaluated by comparing each participant's answers to information they provided during a nurse-guided structured interview (gold standard). Results. A total of 48 parents participated in the study, 26 completed the electronic ASQ and 21 the paper-and-pencil form. Thirty-five percent of the children had well-controlled asthma (n = 17). Most participants were Spanish speaking (67%) Hispanic (n = 44) mothers (n = 43) with a median age of 32 years. More than half had ≤8 years of education (n = 25) and earned <$20,000 per year (n = 27). The median health literacy score was 32 (range 0–36). The correlation between health literacy scores and years of education was significant (ρ = .47, p < .01). Concordance between the electronic ASQ and the nurse interview was significantly higher than concordance between the paper ASQ and the nurse interview (68% versus 54%; p < .01). All parents who completed the electronic questionnaire reported being satisfied; 96% felt comfortable using it, and found it simple to use. Conclusions. By facilitating the assessment of asthma symptoms at manageable cost, interactive information technology tools may help reduce barriers to access due to inadequate levels of English proficiency and health literacy.     

The relationship between caregivers' subjective social status and asthma symptoms and management for urban children

Objective: Subjective social status (SSS) is a person's perception of his/her social standing among others. We explored the relationship between caregivers' SSS and asthma symptoms, visits, and medication use among children with persistent asthma. Methods: We analyzed baseline data of children (3–10 years) from the SB-TEAM trial in Rochester, NY. Using a modified MacArthur Scale of SSS, caregivers rated themselves “a lot worse off” to “a lot better off” compared to 4 groups (e.g., neighbors). “Low SSS” was defined by a response of “a lot worse off” or “somewhat worse off” for any of the referent groups. Caregivers reported their child's asthma symptoms, healthcare visits for asthma, and medication use. Bivariate and multivariate statistics were used. Results: We found that, of the 230 children enrolled (participation rate:78%, 62% Black, 72% Medicaid), 29% of caregivers had low SSS. Caregivers with low SSS had more depressive symptoms (46% vs. 28%) and lower social support (69.1 vs. 77.7). In multivariable analyses, children of caregivers with low SSS had fewer symptom-free days/2 weeks (5.8 vs. 7.9, p = .01). While they were more likely to have a routine asthma visit in the past year (35% vs. 23%, adjusted p = .03), there was no difference in their use of preventive medication. Conclusions: Many caregivers of children with persistent asthma report low SSS. While children of these caregivers had fewer symptom-free days, they were not more likely to use preventive medications. Efforts are needed to support these caregivers to ensure optimal preventive care and reduce morbidity.     

Limited Health Literacy is a Barrier to Medication Reconciliation in Ambulatory Care

Background Limited health literacy may influence patients’ ability to identify medications taken; a serious concern for ambulatory safety and quality. Objective To assess the relationship between health literacy, patient recall of antihypertensive medications, and reconciliation between patient self-report and the medical record. Design In-person interviews, literacy assessment, medical records abstraction. Participants Adults with hypertension at three community health centers. Measurement We measured health literacy using the short-form Test of Functional Health Literacy in Adults. Patients were asked about the medications they took for blood pressure. Their responses were compared with the medical record. Results Of 119 participants, 37 (31%) had inadequate health literacy. Patients with inadequate health literacy were less able to name any of their antihypertensive medications compared to those with adequate health literacy (40.5% vs 68.3%, p = 0.005). After adjusting for age and income, this difference remained (adjusted odds ratio [OR] = 2.9, 95% confidence interval [95%CI] = 1.3–6.7). Agreement between patient reported medications and the medical record was low: 64.9% of patients with inadequate and 37.8% with adequate literacy had no medications common to both lists. Conclusions Limited health literacy was associated with a greater number of unreconciled medications. Future studies should investigate how this may impact safety and hypertension control. Presented in part at the American Medical Association/AMA Foundation Health Literacy and Patient Safety Conference, November 16, 2006, Chicago. IL.     

Health literacy and the risk of hospital admission

OBJECTIVE: To determine the association between patient literacy and hospitalization. DESIGN: Prospective cohort study. SETTING: Urban public hospital. PATIENTS: A total of 979 emergency department patients who participated in the Literacy in Health Care study and had completed an intake interview and literacy testing with the Test of Functional Health Literacy in Adults were eligible for this study. Of these, 958 (97.8%) had an electronic medical record available for 1994 and 1995. MEASUREMENTS AND MAIN RESULTS: Hospital admissions to Grady Memorial Hospital during 1994 and 1995 were determined by the hospital information system. We used multivariate logistic regression to determine the independent association between inadequate functional health literacy and hospital admission. Patients with inadequate literacy were twice as likely as patients with adequate literacy to be hospitalized during 1994 and 1995 (31.5% vs 14.9%, p<.001). After adjusting for age, gender, race, self-reported health, socioeconomic status, and health insurance, patients with inadequate literacy were more likely to be hospitalized than patients with adequate literacy (adjusted odds ratio [OR] 1.69; 95% confidence interval [CI] 1.13, 2.53). The association between inadequate literacy and hospital admission was strongest among patients who had been hospitalized in the year before study entry (OR 3.15; 95% CI 1.45, 6.85). CONCLUSIONS: In this study population, patients with inadequate functional health literacy had an increased risk of hospital admission. Preliminary results of this study were presented at the National Health Literacy Conference in Washington, D.C., on June 3, 1997.     

Oral health of Alzheimer's patients in São José dos Campos,Brazil

Aim: Neglecting oral health can negatively affect the quality of life of Alzheimer's patients. This work evaluates the oral health of Alzheimer's patients in São José dos Campos, Brazil. Methods: Brazilian versions of the Oral Health Risk Assessment and Index to dental management of patients with Alzheimer's disease questionnaires were given to 50 patients (14 men, 36 women) diagnosed with Alzheimer's disease, with an average age of 79.7 years (SD = 9.2 years). Alternatively, the questionnaire was given to patients' caregivers. Cronbach's alpha test was applied to validate the Brazilian versions of these tests. Non‐parametric tests were applied to test for possible associations. Results: Cronbach's alpha was 0.677. Nearly half of the patients (42%) presented with mild Alzheimer's disease, 38% moderate, and 20% severe. Most of the patients did not have their natural teeth (74%), had no oral health problems (64%), were on medication (92%), had not visited the dentist in the last year (70%), and had no need for urgent dental treatment (92%). Of the 42% of patients who used dentures, 76.2% had been wearing the same dentures for over 5 years. There was no association between severity of disease and the presence of natural teeth (P = 0.346), use of removable dentures (P = 0.233), and the presence of oral health problems (P = 0.066). Conclusions: Patients with Alzheimer's disease have unmet oral health needs, but there was no association between severity of their disease and the presence of oral health problems. Geriatr Gerontol Int 2012; 12: 265–270.     

Caregiver's depressive symptoms and asthma control in children from an underserved community

Caregiver's or maternal depression has been associated with increased asthma morbidity in children from prosperous nations, but little is known about this link in low and middle-income countries. Objective: To examine if caregiver's depressive symptoms are associated with poor asthma control and abnormal immune responses in school-aged children. Methods: Case-control study of 87 asthmatic children (aged 4–11 years) attending a primary care clinic in an underserved area of Santiago (Chile). Cases were children with poor asthma control (Child Asthma Control Test [cACT] <20 points) and controls were children with adequate asthma control (cACT ≥20 points). The Beck Depression Inventory-II (BDI) and a locally validated family health vulnerability test (SALUFAM) were used to assess caregivers’ depression and family health vulnerability. Serum from participating children was assayed for IFN-γ, IL-4, IL-13, TGF-β, cortisol, and total IgE. Results: The mean (SD) age of study participants was 8.23 (2.15 years), and 55.2% were females. Use of inhaled corticosteroids (ICS), family health vulnerability, and caregiver's depressive symptoms were significantly more common in cases than in controls (65.4% vs. 34.6%, p = 0.003; 41.3% vs. 24.8%, p = 0.07; and 39.1% vs. 19.5%, p = 0.04, respectively). There was no significant difference in the level of any serum biomarkers between groups. In a multivariate analysis, only ICS use was significantly associated with better asthma control (OR = 3.56 [1.34–9.48], p = 0.01). Conclusions: Presence of caregiver's depressive symptoms is associated with poor asthma control among children from an underserved community, but this association was no longer significant after accounting for ICS use.     

Caregiver versus self-reported activities of daily living among HIV-positive persons in Rakai,Uganda

Assessment of an individual’s functional status, as measured by activities of daily living (ADL), is an essential element in the diagnosis of HIV-associated neurocognitive disorders (HAND) but individuals with cognitive impairment may not accurately report ADL. We assessed agreement between self- and caregiver-reported ADL in HIV-positive persons. Antiretroviral therapy (ART)-naïve HIV-positive persons (n?=?321) and HIV-negative controls (n?=?134) in Rakai, Uganda, completed neurocognitive tests and an ADL questionnaire. Co-resident relatives (“caregivers”) were independently administered the ADL questionnaire to determine their perception of the participant’s ADL. The relationship between neurocognitive impairment and participant-caregiver agreement was assessed using kappa statistics. Regression was used to estimate adjusted prevalence ratios (AdjPR) of participant-caregiver agreement on disability scores. Relative to HIV-negative adults, HIV-positive participants scoring at least 1 standard deviation (SD) below the norm on 2 or more neurocognitive tests were classified as having mild neurocognitive impairment and those scoring at least 2 SD below the norm on 2 or more neurocognitive tests were classified as having moderate-to-severe. Mean age was 36 years (SD 8.9), and 53% of participants were male. The rate of ADL agreement between participants and caregivers was 77% for HIV-positive and 87% for HIV-negative participants (AdjPR?=?0.89, 95% CI 0.81–0.97, p?=?.01). Among HIV-positive participants, 41% had moderate neurocognitive impairment, 15% had severe neurocognitive impairment, and 44% were normal. For moderate neurocognitive impairment, the rate of ADL agreement was 69% and for severe neurocognitive impairment, it was 66%. Compared to non-impaired HIV-positive participants (86% ADL agreement), ADL agreement was lower with moderate impairment (AdjPR?=?0.89, 95%CI 0.81–0.98, p?=?.023) and severe impairment (AdjPR?=?0.77, 95%CI 0.63–0.95, p?=?.014). Gender, education and CD4 count were not associated with ADL agreement. HIV-positive persons with neurocognitive impairment have lower agreement with caregivers’ reports of ADL than HIV-positive persons without cognitive impairment.     

Health Literacy and Heart Failure Management in Patient-Caregiver Dyads

BackgroundOlder adults with heart failure (HF) often need caregivers to assist with care, yet little is known about the health literacy of both patients and their caregivers. The objective of this study was to assess health literacy and the relationship between health literacy and HF self-care in HF patient-caregiver dyads.Methods and ResultsSeventeen patient-caregiver dyads were recruited. Dyads completed a measure of HF self-care and 2 measures of health literacy: 3 validated questions and a nutrition label reading task. Patients were older than caregivers and the majority of both patients and caregivers were female. Caregivers had higher health literacy by both the health literacy questions (P = .001) and label-reading measure (P = .001). All caregivers had adequate health literacy as assessed by the 3 questions, but 29% had inadequate health literacy according to the label-reading task. Caregivers and patients scored adequately in HF maintenance but inadequately in management and confidence domains.ConclusionsCaregivers had better health literacy than patients; however, the task-oriented label-reading measure revealed poorer health literacy than the self-report measure. Measures of health literacy that reflect day to day tasks may be more illuminating than the 3 questions.     

School‐Based Asthma Disease Management

Background. Asthma is the most common chronic childhood illness and the leading cause of missed school days. School is a potential location for establishing an asthma education program for children and their parents/caregivers designed to improve disease management. Objective. To determine whether a comprehensive, school‐based asthma management program, in addition to a conventional disease management program, can reduce measures of asthma control, student absenteeism, and caregiver lost workdays. Methods. School nurses recruited parents/caregivers of students with asthma from three urban elementary and middle schools. Children were identified as having asthma by a previous diagnosis from their personal physician. Parents were invited to attend educational sessions about the program. Students received peak flow meters and training in their use and had access to an interactive asthma diary to record symptoms, peak flow, and medicine usage. They received monthly asthma education at school and had access to an online asthma education program and additional handouts. Parents received several educational calls regarding asthma and had a 24‐hour, 7‐days‐a‐week emergency number to call if problems arose. Results. At 6 months, missed school days and unscheduled doctor visits were reduced by two thirds (n = 41; p < 0.01 for each). Caregivers' perception of children's activity level increased by 11% (n = 26; p = 0.037). Daytime and nighttime frequency of symptoms dropped by 62% and 34%, respectively (n = 32; p < 0.007 and p < 0.03 for each). These trends continued at 12 months, although only reduction in frequency of symptoms attained statistical significance. Conclusions. A comprehensive, school‐based asthma management program can successfully improve asthma control and reduce absenteeism in elementary and middle school students and caregiver lost workdays.     

Asthma Patients' Assessments of Health Care and Medical Decision Making: The Role of Health Literacy

The objectives of this cross-sectional study were to measure health literacy and its associations with asthma patients' assessments of care and their desire to participate in making decisions about their treatment. A total of 175 patients completed the Test of Functional Health Literacy in Adults and questions about satisfaction with asthma status, access to care, quality of care, and the desire to participate in treatment decisions. Patients' mean age was 42 years and 83% were women. Lower literacy was associated with less satisfaction with asthma status and worse assessment of quality of care received for asthma and other medical conditions (p ≤. 005). Patients with lower literacy also were more likely not to want to participate in decisions about their care (OR. 29, 95% CI. 13,. 65). These relationships persisted after controlling for demographic and asthma characteristics. These results provide additional incentives for physicians to find better ways to explain asthma treatments to low literacy patients.     

The relationship of health literacy to diabetes status differs by sex in older adults

Objective

Lower health literacy is associated with higher rates of mortality and chronic disease. It remains unclear whether health literacy is associated with diabetes and/or hyperglycemia in older adults, and if this relationship differs by sex.

Orphan/vulnerable child caregiving moderates the association between women's autonomy and their BMI in three African countries

Enhancement of women's autonomy is a key factor for improving women's health and nutrition. With nearly 12 million orphan and vulnerable children (OVC) in Africa due to HIV/AIDS, the study of OVC primary caregivers' nutrition is fundamental. We investigated the association between married women's autonomy and their nutritional status; explored whether this relationship was modified by OVC primary caregiving; and analyzed whether decision-making autonomy mediated the association between household wealth and body mass index (BMI). This cross-sectional study used the data from Demographic Health Surveys collected during 2006–2007 from 20- to 49-year-old women in Namibia (n = 2633), Swaziland (n = 1395), and Zambia (n = 2920). Analyses included logistic regression, Sobel, and Goodman tests. Our results indicated that women's educational attainment increased the odds for being overweight (Swaziland and Zambia) and decreased the odds for being underweight (Namibia). In Zambia, having at least primary education increased the odds for being overweight only among child primary caregivers regardless of the OVC status of the child, and having autonomy for buying everyday household items increased the odds for being overweight only among OVC primary caregivers. Decision-making autonomy mediated the association between household wealth and OVC primary caregivers' BMI in Zambia (Z = 2.13, p value = 0.03). We concluded that depending on each country's contextual characteristics, having education can decrease the odds for being an underweight woman or increase the odds for being an overweight woman. Further studies should explore why in Namibia education has an effect on women's overweight status only among women who are caring for a child.     

Depression,anxiety, stress and stigma in informal caregivers of People Living with HIV (PLHIV)

Informal caregivers are unpaid individuals who help friends or family members who cannot fully care for themselves. However fulfilling the act of helping debilitated individuals, exposure to another person’s traumatic experiences often results in psychological distress. Caregiver’s stigma towards HIV worsens this. Hence, this study aims to assess the effect of stigma on the mental health of caregivers so that their needs for support can be determined. A cross sectional hospital based study was carried out in Mangalore, India on 150 informal caregivers of PLHIV. The HIV Stigma Scale was used to assess stigma and DASS-21 was used to assess depression, anxiety and stress. Of the 150 caregivers, 20% marked one or more items on the stigma scale. Frequency of depression, anxiety and stress was 46%, 27% and 8% respectively. Most caregivers who had stigma and anxiety were of those patients diagnosed for a shorter duration of time (≤5 years) n?=?20, p?=?0.05 and n?=?26, p?=?0.03 respectively. Spouses of PLHIV (n?=?31, p?=?0.005), sero-positive caregivers (n?=?25, p?=?0.03) and those living with patients (n?=?39, p?=?0.01) suffered most from anxiety. Stress was significantly associated with depression (83%, p?=?0.007) and anxiety (66.6%, p?=?0.001) in caregivers. In conclusion, more of depression and anxiety was observed among the participants than stress. Stigma was seen in 20% of the participants. Stigma was not significantly associated with depression anxiety and stress.     

Healthy patients who perceive poor health and their use of primary care services

Objective:To determine what proportion of patients who have poor health perceptions are physically healthy and to explore why some patients perceive a healthy state while others perceive illness. Design:A prospective consecutive series of office patients completed the Rand Corporation’s General Health Perceptions Questionnaire, and their physicians rated their physical health. Their use of health care services was determined for the following 12 months. Setting:A rural teaching office practice. Patients:Of 243 adult patients asked to complete the questionnaire, 32 were excluded, for dementia (8), illiteracy (4), illness (8), incomplete questionnaires (6), and other reasons (6). 208 patients (86%) formed the final study group. Measurements and main results:62 of 208 patients had poor health perception scores. 39 of the 62 were rated by physicians as physically healthy and were not statistically different in physical health ratings or numbers of prescribed medications from the 146 patients who had higher health perception scores. However, these 39 patients had significantly more health-related worry, acute pain, and depression than did the other 146 patients. They also made more office visits and telephone calls and had higher total primary care charges. Conclusions:This study suggests that 21% of adult primary care patients (39 of 208) have health perceptions lower than expected for their levels of physical health. These low health perceptions are correlated with increased emotional distress and higher utilization of health care resources. Strategies to identify these patients and interventions to improve their views of their health could reduce utilization.     

Modifying factors of the health belief model associated with missed clinic appointments among individuals with sickle cell disease

ABSTRACT

Objectives: Outpatient care is critical in the management of chronic diseases, including sickle cell disease (SCD). Risk factors for poor adherence with clinic appointments in SCD are poorly defined. This exploratory study evaluated associations between modifying variables from the Health Belief Model and missed appointments.

Methods: We surveyed adults with SCD (n?=?211) and caregivers of children with SCD (n?=?331) between October 2014 and March 2016 in six centres across the U.S. The survey tool utilized the framework of the Health Belief Model, and included: social determinants, psychosocial variables, social support, health literacy and spirituality.

Results: A majority of adults (87%) and caregivers of children (65%) reported they missed a clinic appointment. Children (as reported by caregivers) were less likely to miss appointments than adults (OR:0.22; 95% CI:(0.13,0.39)). In adults, financial insecurity (OR:4.49; 95% CI:(1.20, 20.7)), health literacy (OR:4.64; 95% CI:(1.33, 16.15)), and age (OR:0.95; 95% CI:(0.91,0.99)) were significantly associated with missed appointments. In all participants, lower spirituality was associated with missed appointments (OR:1.83; 95%CI:(1.13, 2.94)). The most common reason for missing an appointment was forgetfulness (adults: 31%, children: 26%). A majority thought reminders would help (adults: 83%, children: 71%) using phone calls (adults: 62%, children: 61%) or text messages (adults: 56%, children: 51%).

Conclusions: Our findings demonstrate that modifying components of the Health Belief Model, including age, financial security, health literacy, spirituality, and lacking cues to action like reminders, are important in missed appointments and addressing these factors could improve appointment-keeping for adults and children with SCD.     

Family caregivers' reported nonadherence to the controller medication of asthma in children in Casablanca (Morocco): Extent and associated factors

Objective: Recent statistics show a relatively high prevalence of asthma among Moroccan children and a weak control over their symptoms. To our knowledge, no research has been carried out to document adherence to the controller treatment in this population. This study aims 1) to assess the extent of children's nonadherence to the controller treatment of asthma in an urban region of Morocco as reported by a family caregiver, and 2) to identify the associated factors. Methods: We conducted a cross-sectional study among caregivers of asthmatic children (2–12 years old) in different health and education facilities of Casablanca-Settat. We administered face-to-face questionnaires incorporating validated instruments (Medication Adherence Rating Scale-Asthma (MARS-A), Beliefs about Medicines Questionnaire (BMQ), Asthma Knowledge Questionnaire). Univariate and multivariate log-binomial regressions evaluating the association between several factors and reported nonadherence were performed (prevalence ratios (PR) and 95% confidence intervals (CI)). Results: Through two public hospitals, three private medical clinics, and one private school, 103 caregivers were recruited. Low adherence to the controller treatment of asthma was reported by 48% of the caregivers (MARS-A <45). In the multivariate model, caregivers with the lowest level of knowledge about asthma were almost three times more likely to report low adherence compared to caregivers with the highest level (PR = 2.93; 95% CI: 1.14–7.52). Conclusions: This study highlights the finding that low adherence is widespread in this context and also the importance of targeting caregivers' knowledge of asthma for interventions.