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

Objective

Assess accuracy of caregiver understanding of children's prescribed medications and examine factors associated with accurate recall.

Methods

Cross-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.

Results

Analyses 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.

Conclusion

Unperceived medication instruction understanding gaps exist at physician visits for caregivers of all literacy levels. Communication and care delivery practices need further evaluation.

Practice implications

Clinicians should be aware of the frequency of caregiver medication misunderstanding.     

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes

Objective

To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes.

Methods

A qualitative study, 13 caregivers participated in semi-structured interviews.

Results

Professional caregiver support in diabetes care is almost solely directed towards administering medication and controlling food intake. Caregivers want to provide person-centered care but are hindered by a conflict between protecting a client's health and at the same time respecting autonomy. None of the caregivers had received training in supporting self-management; their knowledge about diabetes is limited. The few that engaged their client in self-management stressed the importance of a positive and collaborative approach.

Conclusion

This study provides a first insight into the challenges that professional caregivers experience when a client with ID has diabetes. More education for caregivers seems needed. Self-management support is likely to benefit from consensus among caregivers about what comprises person-centered care and self-management in people with ID who have a chronic disease.

Practice implications

Increasing caregivers’ awareness of the importance of supporting self-management in people with ID and a chronic disease is essential. Discussing practice examples in the light of existing knowledge about developing autonomy will contribute to their awareness.     

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

Objective

The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.

Methods

Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data.

Results

Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities.

Conclusion

Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers.

Practice implications

Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.     

Does social support help limited-literacy patients with medication adherence?: A mixed methods study of patients in the Pharmacy Intervention for Limited Literacy (PILL) Study

Objective

To explore whether social support helps patients with limited health literacy adhere to their medication regimens.

Methods

We interviewed 275 pharmacy patients and assessed social support's influence on medication adherence for those with limited vs. adequate health literacy. We talked with patients (n = 26) and pharmacists (n = 7) to explore possible explanations for the quantitative findings.

Results

Social support was associated with better medication adherence for patients with adequate health literacy but not those with limited health literacy (p < 0.05). When individual subscales for social support were analyzed, having a trusted confidant was the only type of social support associated with better medication adherence for limited-literacy patients (p < 0.05). Comments from patients and pharmacists suggest that limited-literacy patients were less likely to ask the pharmacists questions and infrequently brought relatives with them to the pharmacy.

Conclusion

Unless they have a trusted confidant, limited-literacy patients might be reluctant to ask others for the kind of help needed to take their medicines correctly.

Practice implications

Pharmacists need training to increase their awareness of limited health literacy and to communicate effectively with all patients, regardless of their literacy skills. To succeed, pharmacists also need the support of the health care systems where they work.     

Verbal communication among Alzheimer's disease patients, their caregivers, and primary care physicians during primary care office visits

Objective

Primary care visits of patients with Alzheimer's disease (AD) often involve communication among patients, family caregivers, and primary care physicians (PCPs). The objective of this study was to understand the nature of each individual's verbal participation in these triadic interactions.

Methods

To define the verbal communication dynamics of AD care triads, we compared verbal participation (percent of total visit speech) by each participant in patient/caregiver/PCP triads. Twenty-three triads were audio taped during a routine primary care visit. Rates of verbal participation were described and effects of patient cognitive status (MMSE score, verbal fluency) on verbal participation were assessed.

Results

PCP verbal participation was highest at 53% of total visit speech, followed by caregivers (31%) and patients (16%). Patient cognitive measures were related to patient and caregiver verbal participation, but not to PCP participation. Caregiver satisfaction with interpersonal treatment by PCP was positively related to caregiver's own verbal participation.

Conclusion

Caregivers of AD patients and PCPs maintain active, coordinated verbal participation in primary care visits while patients participate less.

Practice implications

Encouraging verbal participation by AD patients and their caregivers may increase the AD patient's active role and caregiver satisfaction with primary care visits.     

Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study

Background

Patient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online.

Objective

To explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital.

Methods

We conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers.

Results

We interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care.

Conclusions

Despite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.     

The relationship between caregiver functional oral health literacy and child oral health status

Objective

To describe the relationship between caregivers’ oral health literacy (OHL) and the oral health status of their children in an Asian population.

Methods

A random sample of 301 child/caregiver dyads was recruited from kindergartens in Hong Kong. Two locally-developed and validated OHL assessment tasks were administered to caregivers with Hong Kong Rapid Estimate of Adult Literacy in Dentistry-30 (HKREALD-30) assessing word recognition and Hong Kong Oral Health Literacy Assessment Task for Paediatric Dentistry (HKOHLAT-P) assessing comprehension. Their children's oral health status was assessed [dental caries experience – decayed, missing, filled teeth index – (dmft) and oral hygiene status – Visible Plaque Index (VPI)].

Results

Caregivers’ literacy was associated with children's oral health status. The HKOHLAT-P had a stronger association with children's oral health than HKREALD-30. HKOHLAT-P and HKREALD-30 remained associated with dmft in the adjusted negative binomial regression models (accounting for socio-demographics), Incidence Rate Ratio (IRR) 0.97, p = 0.02, and 0.96, p = 0.03, respectively. In the adjusted model, HKOHLAT-P was associated with VPI (IRR 0.90, p < 0.05), but no association between HKREALD-30 and VPI was evident.

Conclusion

The main conclusion of this study was that caregiver oral health literacy was associated with their child's oral health status. A comprehension instrument had a more robust association with children's oral status than a word recognition instrument.

Practice implications

This study has implications for general public health education for designing community-level interventions.     

A health literacy pilot intervention to improve medication adherence using Meducation technology

Objective

To determine whether antihypertensive medication adherence could improve using a Meducation^® technology health literacy intervention.

Methods

We conducted a six-month feasibility study among patients with cardiovascular disease (CVD) risk factors receiving care from hospital-based primary care clinics. All patients received a personalized Meducation^® calendar listing CVD-related medications. We evaluated changes in medication adherence and clinical outcomes at six months.

Results

There was a 42% enrollment rate (n = 23). Forty percent had low health literacy, defined as less than 9th grade reading level. At three months, self-reported medication adherence improved. At six months, medication possession ratio improved 3.2%. Also, at six months there were decreases in patients’ average systolic blood pressure (0.5 mmHg), diastolic blood pressure (1.5 mmHg), and body weight (3.6 pounds) (p > 0.05).

Conclusions

A health literacy intervention may be a feasible mechanism to improve cardiovascular-related medication adherence and outcomes.

Practice implications

Health literacy interventions may improve adherence while requiring relatively few resources to implement.     

Impact of health literacy on outcomes and effectiveness of an educational intervention in patients with chronic diseases

Objective

Study impact of health literacy on educational intervention for patients “Living with Coronary Artery Disease.”

Methods

187 patients were randomized to: VHS/DVD plus printed booklet; or booklet alone prior to scheduled visit. Main outcome measures included CAD knowledge assessment, clinical outcomes (weigh and blood pressure) and health behaviors (diet, exercise, and smoking); while functional health literacy was assessed as a possible predictor variable.

Results

Knowledge scores and health behaviors improved following both interventions. Those receiving the booklet and video also had a significant improvement in exercise, and weight loss. There was a trend (p = 0.07) towards greater improvement in test scores among those receiving the booklet plus video. Patients with lower health literacy benefited as much as higher literacy patients.

Conclusions

Incorporation of an educational program into clinical visits for patients with chronic disease improved disease-specific knowledge and prompted patients to become activated and involved in their care, improving health behaviors and outcomes. Lower health literacy was not a barrier to this beneficial effect.

Practice implications

Patients with lower health literacy may also benefit from educational, shared decision-making interventions.     

Quality of life,health status,and health service utilization related to a new measure of health literacy: FLIGHT/VIDAS

Objective

Researchers have identified significant limitations in some currently used measures of health literacy. The purpose of this paper is to present data on the relation of health-related quality of life, health status, and health service utilization to performance on a new measure of health literacy in a nonpatient population.

Methods

The new measure was administered to 475 English- and Spanish-speaking community-dwelling volunteers along with existing measures of health literacy and assessments of health-related quality of life, health status, and healthcare service utilization. Relations among measures were assessed via correlations and health status and utilization was tested across levels of health literacy using ANCOVA models.

Results

The new health literacy measure is significantly related to existing measures of health literacy as well as to participants’ health-related quality of life. Persons with lower levels of health literacy reported more health conditions, more frequent physical symptoms, and greater healthcare service utilization.

Conclusion

The new measure of health literacy is valid and shows relations to measures of conceptually related constructs such as quality of life and health behaviors.

Practice implications

FLIGHT/VIDAS may be useful to researchers and clinicians interested in a computer administered and scored measure of health literacy.     

A randomized controlled trial of an intervention to reduce low literacy barriers in inflammatory arthritis management

Objective

Test the efficacy of educational interventions to reduce literacy barriers and enhance health outcomes among patients with inflammatory arthritis.

Methods

The intervention consisted of plain language information materials and/or two individualized sessions with an arthritis educator. Randomization was stratified by education level. Principal outcomes included adherence to treatments, self-efficacy, satisfaction with care, and appointment keeping. Secondary outcomes included health status and mental health. Data were collected at baseline, six, and twelve months post.

Results

Of the 127 patients, half had education beyond high school and three quarters had disease duration greater than five years. There were no differences in the primary outcome measures between the groups. In mixed models controlling for baseline score and demographic factors, the intervention group showed improvement in mental health score at six and twelve months (3.0 and 3.7 points, respectively), while the control group showed diminished scores (−4.5 and −2.6 points, respectively) (p = 0.03 and 0.01).

Conclusion

While the intervention appears to have had no effect on primary outcomes, further studies with continued attention to literacy are warranted. Study site and disease duration must be considered as participants in this study had higher than average health literacy and had established diagnoses for years prior to this study.

Practice implications

The study offers insight into an application of many of the protocols currently recommended to ameliorate effects of limited literacy.     

The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis

Objective

To evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke survivors.

Methods

Electronic English and Chinese bibliographic databases were searched (inception to January 2012) for clinical trials. Two reviewers independently selected and appraised study quality. When possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative summary was used.

Results

Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of two individual psychoeducation programs showed a small effect on improving family functioning (SMD: −0.12; 95% CI: −0.23 to −0.01; p = 0.03). Caregivers receiving psychoeducation that aimed at equipping caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more positive influence on the caregivers’ psychosocial wellbeing and a reduced use of healthcare resources by stroke survivors.

Conclusion

Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted psychoeducation programs are needed to further examine the optimal dose and format.

Practical implications

To support caregivers across the stroke trajectory, the core skills of problem-solving and stress-coping should be included in the psychosocial interventions.     

Low literacy is associated with uncontrolled blood pressure in primary care patients with hypertension and heart disease

Objectives

To evaluate the association between low literacy and uncontrolled blood pressure (BP) and their associations with medication adherence.

Methods

Cross-sectional study of 423 urban, primary care patients with hypertension and coronary disease. The relationship between low literacy (Rapid Estimate of Adult Literacy in Medicine ≤ 44) and uncontrolled BP (≥140/90 mmHg, ≥130/80 mmHg for patients with diabetes) was evaluated by crude and adjusted logistic regression. Relationships with self-reported adherence and refill adherence were explored using adjusted linear and logistic regression.

Results

Overall, 192 (45%) subjects had low literacy and 227 (52.9%) had uncontrolled BP. Adjusting for age, gender, race, employment, education, mental status, and self-reported adherence, low literacy was associated with uncontrolled BP (OR 1.75, 95% CI 1.06–2.87). Lower self-reported adherence was associated with uncontrolled BP; the relationship between refill adherence and uncontrolled BP was not statistically significant.

Conclusion

Low literacy is independently associated with uncontrolled BP.

Practice implications

Awareness of the relationships among patient literacy, BP control, and medication adherence may guide healthcare providers as they communicate with patients.     

Health literacy and its association with perception of teratogenic risks and health behavior during pregnancy

Objective

Investigate the association between health literacy and perception of medication risk, beliefs about medications, use and non-adherence to prescribed pharmacotherapy during pregnancy, and whether risk perception and beliefs may mediate an association between health literacy and non-adherence.

Methods

This multinational, cross-sectional, internet-based study recruited pregnant woman between 1 October 2011 and 29 February 2012. Data on maternal socio-demographics, medication use, risk perception, beliefs, and non-adherence were collected via an on-line questionnaire. Health literacy was measured via a self-assessment scale. Mann–Whitney U test, Spearman's rank correlation, Generalized Estimating Equations and mediation analysis were utilized.

Results

4999 pregnant women were included. Low-health literacy women reported higher risk perception for medications, especially penicillins (Rho: −0.216) and swine flu vaccine (Rho: −0.204) and more negative beliefs about medication. Non-adherence ranged from 19.2% (high-health literacy) to 25.0% (low-health literacy). Low-health literacy women were more likely to be non-adherent to pharmacotherapy than their high-level counterparts (adjusted OR: 1.30; 95% CI: 1.02–1.66). Risk perception and beliefs appeared to mediate the association between health literacy and non-adherence.

Conclusion

Health literacy was significantly associated with maternal health behaviors regarding medication non-adherence.

Practice implications

Clinicians should take time to inquire into their patients’ ability to understand health information, perception and beliefs, in order to promote adherence during pregnancy.     

Health literacy and cancer screening: A systematic review

Objective

To evaluate published evidence about health literacy and cancer screening.

Methods

Seven databases were searched for English language articles measuring health literacy and cancer screening published in 1990–2011. Articles meeting inclusion criteria were independently reviewed by two investigators using a standardized data abstraction form. Abstracts (n = 932) were reviewed and full text retrieved for 83 articles. Ten articles with 14 comparisons of health literacy and cancer screening according to recommended medical guidelines were included in the analysis.

Results

Most articles measured health literacy using the S-TOFHLA instrument and documented cancer screening by self-report. There is a trend for an association of inadequate health literacy and lower cancer screening rates, however, the evidence is mixed and limited by study design and measurement issues.

Conclusion

A patient's health literacy may be a contributing factor to being within recommended cancer screening guidelines.

Practice implications

Future research should: be conducted using validated health literacy instruments; describe the population included in the study; document cancer screening test completion according to recommended guidelines; verify the completion of cancer screening tests by medical record review; adjust for confounding factors; and report effect size of the association of health literacy and cancer screening.     

Using computer agents to explain medical documents to patients with low health literacy

Objective

Patients are commonly presented with complex documents that they have difficulty understanding. The objective of this study was to design and evaluate an animated computer agent to explain research consent forms to potential research participants.

Methods

Subjects were invited to participate in a simulated consent process for a study involving a genetic repository. Explanation of the research consent form by the computer agent was compared to explanation by a human and a self-study condition in a randomized trial. Responses were compared according to level of health literacy.

Results

Participants were most satisfied with the consent process and most likely to sign the consent form when it was explained by the computer agent, regardless of health literacy level. Participants with adequate health literacy demonstrated the highest level of comprehension with the computer agent-based explanation compared to the other two conditions. However, participants with limited health literacy showed poor comprehension levels in all three conditions. Participants with limited health literacy reported several reasons, such as lack of time constraints, ability to re-ask questions, and lack of bias, for preferring the computer agent-based explanation over a human-based one.

Conclusion

Animated computer agents can perform as well as or better than humans in the administration of informed consent.

Practice implications

Animated computer agents represent a viable method for explaining health documents to patients.     

Missed opportunity? Caregiver participation in the clinical encounter. A videographic analysis

Objective

Although the assistance of caregivers is critical to patients undertaking self-care, little is known about their participation in visits and involvement in decision making. We sought to examine this caregiver participation in shared decision making through videographic analysis.

Methods

We identified video recordings from outpatient visits in which a healthcare professional, patient, and caregiver participated, drawn from five practice-based randomized trials testing the efficacy of decision aids vs. usual care. Two reviewers, working independently, coded videos to explore caregiver engagement in the clinical encounter, clinician facilitation of that engagement, and the influence of decision aids in the engagement process.

Results

In most of the 37 videos coded, caregivers’ participation was self-triggered. We saw no impact of the use of decision aids on caregiver participation. Clinicians did not address the caregivers’ preferred level of involvement in decision making in any of the video recorded encounters analyzed.

Conclusion

In this analysis, most clinicians did not engage caregivers in outpatient visits for chronic care. While the use of decision aids improves communication between patient and clinician, they do not appear to affect caregiver involvement during consultations.

Practice implications

Research on the comparative effectiveness of ways to engage caregivers to optimize patient-important outcomes, including enhancing the shared decision making process is necessary.     

Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review

Introduction

Dementia caregivers suffer a considerable care burden. More than in comparable groups of caregivers or peers, they are confronted with feelings of depression and decreased physical health. Although many studies are set up to determine the link between the stressors in dementia care-giving and the impact on the family caregiver, the results remained inconclusive. Others, depression in caregivers remains the main cause of a premature or acute ending of home care.

Method

The aim of this systematic literature review was to analyse what factors determine the development of depression in caregivers of elderly patients with dementia. Depression was taken as primary outcome as it is shown to be the main reason for caregivers to abandon home care.

Results

Depression occurs in one in three of caregivers and it occurs more frequently in those who care for patients with dementia than in caregivers of patients with other chronic illnesses.

Conclusion

Caregiver characteristics rather than objective care needs of the patients tend to be responsible for the onset of depression. Future research should concentrate on demonstrating links between negative feelings in caregivers and the way the care situation evolves. This can have important implications in home care support.     

Which women patients have better health literacy in Serbia?

Objective

To evaluate health literacy among female primary care patients and the possible factors which contribute to better health literacy.

Methods

A cross-sectional study was conducted among 824 female primary health care patients. Functional health literacy was measured by the Serbian version of the Short Test of Functional Health Literacy in Adults (STOFHLA). Chi-square testing and logistic regression analyses were applied.

Results

We found that inadequate or marginal health literacy was present in 363 participants (44.1%) and adequate health literacy was present in 461 participants (55.9%). Functional health literacy was significantly different by age, marital status, employment, education, material status, self-perception of health, and health status. Based on multivariate analysis, health literacy was significantly associated with participant age, employment status, level of education, and perception of health.

Conclusion

Better health literacy existed among younger, employed participants with a higher education and better self-perception of health.

Practice implications

Strengthening the knowledge and evidence base for measuring and assessing health literacy are action points for health strategies to decrease the ill effects of low health literacy.