Parent health literacy and adherence-related outcomes in children with epilepsy

doi:10.1016/j.yebeh.2015.12.036

Epilepsy & Behavior

Volume 56, March 2016, Pages 73-82

https://doi.org/10.1016/j.yebeh.2015.12.036 Get rights and content

Highlights

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This study examined the relationship between parent health literacy and adherence-related outcomes in children with epilepsy.
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Parent health literacy was an overall significant predictor of missed doses and seizure frequency.
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Higher health literacy scores were associated with fewer missed medication doses and seizure occurrences.
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Household income was the only other predictor associated with fewer missed doses.
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None of the study variables, including health literacy, was associated with missed medical appointments.

Abstract

Background

The relationship between parent health literacy and adherence to treatment in children with epilepsy has not been fully explored. The purpose of this study was to determine whether parent health literacy and other variables predicted factors associated with adherence, such as missed medication doses, missed medical appointments, and seizure frequency, in children with epilepsy between 1 and 12 years old.

Methods

It was hypothesized that parents with adequate parent health literacy would report fewer missed doses, missed appointments, and seizure occurrences. Using a nonexperimental, cross-sectional study design, interviews were conducted with 146 parents and guardians of children with epilepsy who resided in rural communities. Univariate analyses, including ANOVA, and multiple linear regressions were conducted.

Results

Results indicated that parent health literacy was the strongest predictor of two of the adherence-related factors. Higher health literacy scores were associated with fewer missed medication doses and seizure occurrences. However, health literacy was not associated with missed medical appointments. Among other study variables, higher household income was also predictive of fewer missed doses.

Conclusion

The study findings suggest that inadequate health literacy among parents may serve as an independent risk factor for adherence-related outcomes among children with epilepsy. Further research, as well as effective, targeted parent health literacy strategies used to improve epilepsy management and care in children, is recommended.

Introduction

Nearly one-half of all American adults, including parents, have difficulty comprehending health information, which makes it difficult for many to use information effectively [1]. A national, representative sample of 6100 parents found that 39% had basic and below basic health literacy [2]. At least 70% of the parents in the study had difficulty filling out a health insurance form. Health literacy is defined as the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions to prevent or treat illness [3]. It involves one's ability to effectively act on and use health information and health-care services [1]. Health literacy impacts the ability of parents to navigate through health-care systems, obtain medical resources, and adequately manage the care of themselves and their children.

Parent health literacy has been associated with child health outcomes [2], [4], [5]. Parents with inadequate health literacy tend to have difficulty understanding basic health information and performing health-related activities for their children (e.g., reading a digital thermometer and understanding a growth chart) [2]. Compared with parents with adequate health literacy, those with inadequate skills tend to commit more medication dosing errors and have higher rates of emergency department visits and hospitalizations among their children [4], [6], [7]. They are more likely to have children with unmet health-care needs, even when adjusting for income, age, and English proficiency [2], [8].

Parent health literacy has also been linked to adherence to medical treatment. For instance, inadequate parent health literacy has been associated with poor adherence among children with asthma and in adolescents with insulin-dependent diabetes [9], [10]. Adherence is defined as the extent to which a patient's treatment-related behaviors (e.g., taking medication, following a prescribed diet, modifying health habits, and attending clinic appointments) correspond to a health professional's advice or treatment plan [11], [12]. Consequences for nonadherence include increased mortality, morbidity, use of health-care services, and medical costs [13]. Nonadherence is higher among those with chronic diseases, such as epilepsy, than among those without chronic illnesses [9].

Epilepsy is a neurological disorder operationally defined as two or more episodes of unprovoked seizures occurring at least 24 h apart [14]. It is one of the most common, disabling neurological conditions [14], [15]. It is estimated that between 6 and 7 children per 1000 in the U.S. have epilepsy [14], [15]. In a recent study, the prevalence of epilepsy in two rural U.S. counties was 17 per 1000 [16].

Adherence has been examined in patients with epilepsy. For instance, in the U.S., nonadherence has been associated with inadequate knowledge about epilepsy and treatment among parents as well as in adolescents 12 to 17 years of age [17]. Research has also found a relationship between adherence and family support, mother's age, number of family members, and greater seizure frequency among adolescents 13–18 years of age in Saudi Arabia [18] Adherence to epilepsy treatment has also been associated with socioeconomic status in children [19], [20].

Despite the rates of epilepsy in children and growing research on adherence, there are significant gaps in our knowledge about adherence in patients with epilepsy as it pertains to health literacy. Former studies examined parents' knowledge of epilepsy and treatment, specifically, but did not explore general health literacy [17], [18], [19]. Health literacy and epilepsy research studies in the U.S. have primarily focused on outcomes in adults and literacy assessments of [21], [22], [23], [24]. Thus, the relationship between parent health literacy and certain outcomes related to adherence among children with epilepsy has not been fully explored. The purpose of the study was to determine whether parent health literacy and other variables predicted factors associated with adherence, such as missed doses, missed appointments, and seizure frequency, among children with epilepsy between 1 and 12 years old.

Section snippets

Study design

Based on previous research, it was hypothesized that parent health literacy would be associated with adherence in children; specifically, parents with inadequate parent health literacy would report lower adherence in children. The study used an observational, cross-sectional study design with interviews to collect data. Purposive sampling was used to recruit parents and guardians of children with epilepsy who resided in rural counties in Alabama. The study protocol was approved by the

Descriptive statistics

One-hundred and fifty parents and guardians were interviewed. However, two participants were excluded from the analysis because of inconsistent responses, and two were excluded because their children had a history of epilepsy but did not have active epilepsy. The resulting sample size was 146 (N = 146). A little over one-half of the sample of children were female (n = 74, 51%), and most were white non-Hispanic (n = 126, 86%). Most of the children were between four to six years old (n = 93, 64%); the

Discussion

Although epilepsy is one of the most common disabling neurological conditions, it has not been adequately addressed as a public health concern [14]. Important research areas such as the association between parent health literacy and adherence-related outcomes in children have been largely overlooked. The current study addressed this gap. The purpose of this study was to determine whether parent health literacy and other variables predicted factors associated with adherence, such as missed

Acknowledgment

This study was funded by the Epilepsy Foundation (Landover, MD) as part of its Targeted Research Initiative for Youth. Grant Number 179734 (pC ID), Award Number 179734.

Conflict of interest

There was no conflict of interest in this research.

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We conducted this study to examine the impact of health literacy on the personal impact of epilepsy in patients with epilepsy.
We conducted this cross-sectional and correlational study with 125 individuals who were admitted to the neurology outpatient clinic of a university hospital in eastern Turkey, who met the research criteria, and who accepted to participate in the study. We collected the data by using the “Descriptive Information Form (DIF)”, “The Personal Impact of Epilepsy Scale (PIES)”, and “Health Literacy Scale (HLS)”.
We found that the mean HLS total score of the participants was 104.84 ± 22.88. We also found the mean PIES total score to be 27.08 ± 18.56. Regression results using PIES as a dependent variable reported that the model created was statistically significant (F (21,83) = 11.398, p < 0.05). Among the variables included in the model, income status and HLS were negative (β = −0.209; β = −0.194; β = −0.364, respectively) predictors of the PIES total score. However, seizure status in the last year, number of drugs used, and seizure type were positive predictors of the PIES total score. We found that the variables included in the analysis explained 74% of the total PIES score.
In conclusion, the health literacy level (HLL) of the participants was sufficient or very good, and the effect of the disease on individuals with epilepsy was low. The effect of the disease on individuals with epilepsy decreased as the level of health literacy increased.
Medication self-management in predominantly African American and Caribbean American people with epilepsy: The role of medication beliefs and epilepsy knowledge
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Suboptimal medication adherence is common in people with epilepsy (PWE) and disproportionally prevalent among racially/ethnically diverse patients. Understanding reasons and risks of suboptimal adherence is critical to developing interventions that reduce negative health outcomes. This cross-sectional study characterized common barriers to medication self-management, prevalence of negative medication beliefs, and gaps in epilepsy knowledge among predominantly African American and Caribbean American PWE and examined their interrelationships.
Sixty-three PWE (Age = 42.1 ± 13.2; 60% female; 79% Black; 19% Hispanic/Latino) completed validated self-report questionnaires about medication self-management, medication beliefs, and epilepsy knowledge. Correlations and t-tests examined interrelationships.
Four barriers to medication self-management were common, including not taking antiseizure medications at the same time every day, forgetting doses, not planning refills before running out, and spreading out doses when running low. More than half the sample believed medications were overused by prescribers. Nearly one-third believed medications were harmful, and nearly a quarter believed their antiseizure medications were minimally necessary with almost half reporting elevated concerns about negative consequences of antiseizure medications. Poorer medication self-management was associated with stronger beliefs that medications in general are harmful/overused by prescribers. Individuals who were “accepting” of their antiseizure medications (i.e., high perceived necessity, low concerns) were less likely to spread out time between doses when running low compared to non-accepting counterparts. Knowledge gaps related to the cause of seizures/epilepsy, chronicity of epilepsy treatment, and seizure semiology/diagnosis were common. Nevertheless, epilepsy knowledge was unrelated to medication self-management and medication beliefs.
In these PWE, the most prevalent reasons for suboptimal medication self-management were behaviorally mediated and potentially modifiable. Negative medication beliefs and misconceptions about epilepsy and its treatment were common. Results further suggest that interventions addressing negative medication beliefs will be more effective than knowledge-based psychoeducation alone to improve medication self-management in this patient population.
Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy—A qualitative study
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Childhood epilepsy is often complicated by neurobehavioral comorbidities, and parents are expected to actively engage in managing the condition. Insufficient parental health literacy (HL) has been associated with reduced health outcomes for children with epilepsy. Little is known about the parents’ experiences of information seeking, social support, navigating the healthcare system, and interactions with healthcare professionals and how these skills may contribute to the development of sufficient HL.
This study explored parents’ experiences of their caregiver responsibility and the development of their HL in relation to caring for their child with epilepsy. Ten parents of children under 12 years of age with epilepsy were purposedly sampled and interviewed individually, using semi-structured interviews. The interviews were analyzed using qualitative content analysis, in line with Graneheim & Lundman.
The analyses resulted in three themes, each comprising two sub-themes. The themes were: (1) Alone with the responsibility, (2) The combat for information and support, and (3) Developing vigilance and distrust in system competence. Lack of flexibility in healthcare services, insufficient multidisciplinary collaboration, and unclear treatment provider responsibility made the parents feel alone in the caregiver’s responsibility. Poor local provider competence related to childhood epilepsy was a barrier to developing sufficient HL. A trusting relationship with professionals and timely access to competent health services were facilitators for developing HL. Higher HL made the parents more critical for the healthcare services, which triggered vigilance and reduced their trust in the professionals’ information.
For the parents, developing and maintaining HL was a continuous emotional, cognitive, and social process. Health information and care support need to be adjusted to the severity of the child’s condition, the resources are available, and the parent’s HL. The results of this study may contribute to the development of future interventions for strengthening parental HL in the childhood epilepsy context.
Parental Factors Affecting Pediatric Medication Management in Underserved Communities
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Citation Excerpt :
We have compiled these suggested interventions in Table 4. LHL is strongly predictive of decreased medication adherence and is associated with poor child health outcomes.29–31 For many underserved families, parents not only have LHL, but also LEP, a combination that may put families at higher risk of making a dosing error than those with only one barrier.32
Medication errors and adverse drug events are common in the pediatric population. Limited English proficiency and low health literacy have been associated with decreased medication adherence, increased medication errors, and worse health outcomes. This study explores parental factors affecting medication management in underserved communities.
Using qualitative methods, we identified factors believed to affect medication management among parents. We conducted focus group discussions between December 2019 and September 2020. We recruited parents and health care professionals from local community partners and a tertiary care children's hospital. Sessions were recorded and transcribed. Three investigators created the coding scheme. Two investigators independently coded each focus group and organized results into themes using thematic analysis.
Eleven focus groups were held (n = 45): 4 English-speaking parent groups (n = 18), 3 Spanish-speaking parent groups (n = 11), and 4 health care professional groups (n = 16). We identified 4 main factors that could impact medication delivery: 1) limited health literacy among parents and feeling inadequate at medication administration (knowledge/skill gap), 2) poor communication between caregivers (regarding medication delivery, dosage, frequency, and purpose) and between providers (regarding what has been prescribed), 3) lack of pediatric medication education resources, and 4) personal attitudes and beliefs that influence one's medication-related decisions.
The compounding effect of these factors – knowledge, communication, resource, and personal belief – may put families living in underserved communities at greater risk for medication errors and suboptimal health outcomes. These findings can be used to guide future interventions and may help optimize medication delivery for pediatric patients.
Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy
2022, Epilepsy and Behavior
Parents of children with epilepsy play a key role in the management of their child’s condition. Their level of health literacy (HL), which refers to their ability to seek, understand, assess, remember, and utilize health information, is essential for handling the child optimally. The aim of this study was to investigate characteristics associated with high and low levels of different dimensions of HL in parents. HL was assessed with the multidimensional Health Literacy Questionnaire (parents’ version) and the electronic Health Literacy Scale, using data from a cohort of 254 parents of children <12 years. Bivariate correlation and multiple hierarchal linear regression (STATA version 16 SE) were used to investigate variables associated with HL. Self-efficacy (St. β = 0.14–0.34) was the only variable that predicted higher scores on every HL scale. Being older than 35 years (St. β = 0.18–0.21), level of education (St. β = 0.16–0.27), and the child having a coordinator of services (St. β = 0.16–0.28) were associated with higher scores, while sick leave due to the child’s epilepsy (St. β = −0.13 to −0.16), child comorbidities (St. β = −0.15 to −0.19), and higher levels of mental distress (St. β = −0.13 to −0.19) were associated with lower scores in several of the different HL dimensions. A total of 44.8% of the parents scored over the cutoff (≥1.85) predicting a mental disorder on the Hopkins symptom checklist. This is the first study to investigate multidimensional parental HL in a childhood epilepsy context. Our results highlight the need to investigate multiple variables, especially mental distress, to determine characteristics that may predict low parental HL. Further qualitative studies are needed to explore the underlying reasons for the parents’ HL scores and to develop inventions tailored to meet different HL needs.
The relationship of parental health literacy to health outcomes of children with medical complexity
2021, Journal of Pediatric Nursing
Citation Excerpt :
Based on a robust literature search examining research within the last 10 years, opportunities remain for understanding the effects of parental health literacy in patients with more than one chronic disease who use several chronic medications (Keim-Malpass et al., 2015). To date, studies have focused solely on pediatric patients with singular chronic diseases such as asthma (Belice et al., 2019), HIV/AIDS (Howard et al., 2014;), and epilepsy (Paschal et al., 2016). In addition, little research attention has been devoted to understanding the health literacy of Spanish-speaking parents whose children are medically complex.
Children with medical complexity experience negative health outcomes despite the high costs associated with their care. There is growing evidence that low parental health literacy is associated with a number of poor child health outcomes, including medication errors. However, less is known about the relationship between parental health literacy and the health outcomes of children with medical complexity, whose care is known to be more complex and demanding of parents.
The challenges faced by parents of children with medical complexity are presented, including those related to communication, care coordination, and medication administration. The historical and theoretical perspectives of health literacy are discussed, and the relationship of parental health literacy to pediatric health outcomes for children with medical complexity is explored.
Remaining knowledge gaps about parental health literacy and its influence on the health of children with medical complexity are outlined. Future research and clinical practice implications of health literacy and its importance to family-centered care are discussed.

View all citing articles on Scopus

View full text

Parent health literacy and adherence-related outcomes in children with epilepsy

Highlights

Abstract

Background

Methods

Results

Conclusion

Introduction

Section snippets

Study design

Descriptive statistics

Discussion

Acknowledgment

Curr Probl Pediatr Adolesc Health Care

Geriatr Nurs

Epilepsy Res

Epilepsy Behav

Saudi Pharm J

Int J Epilepsy

Seizure

Epilepsy Behav

Epilepsy Behav

Seizure

Epilepsy Behav

Epilepsy Behav

Seizure

Epilepsy Behav

J Surg Res

Clin Ther

Prim Care

Psychiatry Res

Key concepts and features of the 2003 National Assessment of Adult Literacy (NCES 2006-471)

The health literacy of parents in the United States: a nationally representative study

Pediatrics

Healthy People 2020

Health literacy and child health outcomes: a systematic review of the literature

Pediatrics

Literacy and child health: a systematic review

Arch Pediatr Adolesc Med

Parental misinterpretations of over-the-counter pediatric cough and cold medicine labels

Pediatrics

Parents' medication administration errors: role of dosing instruments and health literacy

Arch Pediatr Adolesc Med

Promoting medication in children

Am Fam Physician

Brief report: parent's health literacy among high-risk adolescents with insulin dependent diabetes

J Pediatr Psychol

Interventions to enhance patient adherence to medication prescriptions: scientific review

JAMA

Adherence to medication

NEJM

Standards for epidemiologic surveillance of epilepsy

Epilepsia

How common are the “common” neurologic disorders?

Neurology

Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy

JAMA

Alabama: population and housing unit counts