Katherine A. Yeager

The association of stigma with self-management and perceptions of health care among adults with epilepsy

OBJECTIVE The purpose of this study was to examine the perception of stigma among adults with epilepsy including its association with epilepsy self-management and perceptions of health care. METHODS Participants for the study were recruited from two epilepsy centers and a neurology clinic. Individuals agreeing to participate in the study were asked to complete three assessments each 3 months apart. Data were collected from 320 adult men and women with epilepsy; 314 provided responses on stigma and were included in this analysis. RESULTS Participants ranged in age from 19 to 75 years (mean=43). Fifty percent of the sample was female, and 80% was white. The mean age of seizure onset was 22 years, and 76% of participants reported having had a seizure within the past year. Analysis suggests levels of perceived stigma are similar for men and women and across ethnic and age groups. However, participants who were not married or living with a partner, were not working for pay, and had limited income reported higher levels of stigma than did married participants, those working for pay, and those in higher income brackets. Participants reporting higher levels of stigma included those who had their first seizure before the age of 50 and a seizure in the last year. Participants whose seizures interfered more with activities, who rated their seizures as under less control, and who were not legally able to drive also reported higher levels of stigma. Tests of association between stigma and health-related variables revealed that participants reporting higher levels of perceived stigma also reported lower levels of self-efficacy to manage epilepsy; more negative outcome expectancies related to treatment and seizures; and lower levels of medication management, medication adherence, and patient satisfaction. However, they also reported greater management of information related to seizures. In regression analysis, income, age at first seizure, seizures during the past year, lower self-efficacy, negative outcome expectancies for seizures, and less patient satisfaction explained 54% of the variance in perceived stigma. CONCLUSIONS The results of the study suggest that perceived stigma is significant for people with epilepsy and is associated with factors that are known to be important in the management of epilepsy. Understanding who is at greatest risk for feeling stigmatized could lead to the development of preventive measures.

Using motivational interviewing to promote adherence to antiretroviral medications: a pilot study.

This report describes a pilot study of a nursing intervention to increase adherence to combination therapy. The intervention was based on motivational interviewing (MI). Participants completed a baseline assessment using the computer-administered self-interview with audio (ACASI) data collection method and then were randomly assigned to the MI intervention or control condition. Nurse counselors met with participants in the MI intervention group for three adherence sessions. Two months following baseline, participants completed a follow-up assessment. Mean scores on ratings of missed medications were lower for participants in the intervention group than those in the control group. Although there were no significant differences in the number of medications missed during the past 4 days, participants in the MI group reported being more likely to follow the medication regimen as prescribed by their health care provider. The pilot study provided useful information about the acceptability of ACASI and the adequacy of intervention procedures. The results of this pilot study show promise for the use of MI as an intervention to promote adherence to antiretroviral medications.

Behavioral, social, and affective factors associated with self-efficacy for self-management among people with epilepsy

The purpose of the study described in this article was to evaluate the extent to which selected behavioral, social, and affective factors contribute to self-reported epilepsy self-efficacy. Participants completed three assessments 3 months apart, with only those completing both the first and second assessments included in this analysis. Self-efficacy scores at the second assessment were regressed on the behavioral, social, and affective characteristics ascertained at the first assessment. The analysis revealed that self-management, depressive symptoms, and seizure severity explain the most variance in self-efficacy; patient satisfaction and stigma are less important predictors; and social support and regimen-specific support are not significant predictors. The results provide direction for identifying people with low levels of self-efficacy and highlighting areas that might help enhance self-efficacy in persons with epilepsy.

Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy

Epilepsy research efforts have primarily focused on medical treatment and physical management of epilepsy; however, to provide comprehensive care, efforts cannot focus solely on physical manifestations of epilepsy. Research findings show that people with epilepsy face many challenges that can negatively affect quality of life (QOL). In this descriptive study, we examined the individual relationships between depressive symptoms, stigma, social support and regimen-specific support and QOL in adults with epilepsy. Study data were obtained from a subset of patients (N = 147) who participated in a longitudinal study of adult patients with epilepsy. Measures of QOL, depressive symptoms, stigma, social support and regimen-specific support were analyzed to answer the research questions. The results of correlational analyses revealed statistically significant negative correlations between depressive symptoms, stigma and sometimes regimen-specific support and QOL and statistically significant positive correlations between social support and QOL. A hierarchical multiple linear regression model revealed that depressive symptoms accounted for the most variance in QOL. Psychosocial variables measured 3 months prior to QOL were entered into a hierarchical multiple linear regression model, revealing that depressive symptoms, stigma and social support can be used to predict QOL at a later time.

Evaluation of WebEase: an epilepsy self-management Web site

People with epilepsy have various education needs and must adopt many self-management behaviors in order to control their condition. This study evaluates WebEase, an Internet-based, theory-driven, self-management program for adults with epilepsy. Thirty-five participants took part in a 6-week pilot implementation of WebEase. The main components of WebEase are My Log, a behavioral journal, and the Medication, Stress and Sleep Modules, which provide tailored information and feedback designed to prompt participants to assess their status with self-management behaviors, think about their behaviors and make a goal. In this article, we discuss the results of the feasibility, acceptability and usability assessments and the behavioral outcomes. The process results indicate that theoretical components that served as the program framework were successfully integrated into the program and that participants viewed WebEase as relevant, acceptable and easy to use. Additionally, participants showed some improvement in epilepsy self-management, adherence, sleep quality, self-efficacy and social support following the program. The initial results are encouraging and continued development of WebEase has the potential to facilitate education and self-management strategies among people with epilepsy.

Use of computers and the Internet for health information by patients with epilepsy

The purpose of this study was to describe computer and Internet use among an online group and a clinic-based group of people with epilepsy. Greater than 95% of the online group and 60% of the clinic group have access to computers and the Internet. More than 99% of the online group and 57% of the clinic group used the Internet to find health information. A majority of people reported being likely to employ an Internet-based self-management program to control their epilepsy. About 43% reported searching for general information on epilepsy, 30% for medication, 23% for specific types of epilepsy, and 20% for treatment. This study found that people with epilepsy have access to computers and the Internet, desire epilepsy-specific information, and are receptive to online health information on how to manage their epilepsy.

The epilepsy medication and treatment complexity index: reliability and validity testing.

&NA; Medications are the most common treatment for epilepsy. Regimens vary from once per day dosing to several pills several times per day. More complex regimens have been associated with lower adherence rates. To date, medication complexity has been measured by the number of pills and the number of times per day the pills are taken. However, complexity also includes special instructions (e.g., take at a separate time than other medications) and the specific administration actions (e.g., take 1/2 pill). This article describes the development of an instrument designed to measure the complexity associated with epilepsy treatment regimens. The medication complexity tool (MCI) was modified to create the Epilepsy Medication and Treatment Complexity Index (EMTCI). The EMTCI comprises four sections: (a) general medication information, (b) frequency of administration, (c) special instructions, and (d) administration actions. Points are given for dosing schedules, special instructions, and administration actions. A total complexity score is calculated by adding points for each section. One form is completed for each medication prescribed for each person. The initial development of the EMTCI included revising the MCI to make it applicable to epilepsy medications. Interrater and intrarater reliability assessments were conducted. The EMTCI was administered to adults with epilepsy as part of a larger study of self‐management in people with epilepsy. Data from that study were used for further assessments of the EMTCI including test‐retest reliability, criterion validity, and construct validity. The EMTCI shows evidence of both reliability and validity. Information from the tool can be used to describe the medication complexity of epilepsy medication regimens in much greater detail than has been done previously for this population. This information is useful in describing the treatment and adherence issues for persons with epilepsy.

A telephone-based self-management program for people with epilepsy.

The study was conducted to test the feasibility of a telephone-based self-management program for adults with epilepsy. The program was based on social cognitive theory and principles of motivational interviewing (MI). Twenty-two adults with epilepsy were recruited from hospital-based epilepsy clinics. The mean age of participants was 43 years, and 68% were men. Participants were randomly assigned to the intervention or control group. Those in the intervention group received a five-session intervention with a nurse trained in MI counseling. Following an in-person introductory session, the remaining four sessions were conducted by phone. Ninety-five percent of the 55 planned MI sessions and the 44 planned courtesy calls for those in the control group were completed, demonstrating high acceptance of the program. Participants were very satisfied with the program and noted the benefits of the telephone delivery method. Analysis of outcomes provided support for continued development and testing of the program.

Cultural humility: essential foundation for clinical researchers.

Cultural humility is a process of self-reflection and discovery in order to build honest and trustworthy relationships. It offers promise for researchers to understand and eliminate health disparities, a continual and disturbing problem necessitating attention and action on many levels. This paper presents a discussion of the process of cultural humility and its important role in research to better understand the perspectives and context of the researcher and the research participant. We discern cultural humility from similar concepts, specifically cultural competence and reflexivity. We will also explore ways to cultivate cultural humility in the context of human subjects research. Mindfulness is one approach that can be helpful in enhancing awareness of self and others in this process. With a foundation in cultural humility, nurse researchers and other investigators can implement meaningful and ethical projects to better address health disparities.

Further standardization of some NES3 tests.

NES3 is a computer-based neurobehavioral testing system designed for use in investigating potential cognitive impairment. Data from NES3 tests employed in a study of epilepsy self-management were analyzed to estimate test-retest reliability for NES3 tests on a large sample and to estimate the effect of some common covariates of test performance. A total of 319 participants in an epilepsy self-management study were examined on three occasions (baseline, 3-month follow-up, and 6-month follow-up) with a set of psychological questionnaires and seven neuropsychological tests from NES3. Test-retest correlations were calculated between measures obtained at baseline and at 3 months. Principal components analysis was performed on the baseline data. The potential effects of covariates (age, education, reading test scores, depression status, and examiner) were investigated in regression models. Three-month test-retest correlations were excellent for Adult Reading Test (ART) (r=0.95), strong for Digit-Symbol (r=0.82), Sequence B (r=0.79), and Sequence A (r=0.76); and modest (rs between 0.56 and 0.67) for Digit Span Forward and Backward, Visual Span Forward and Backward, and Pattern Memory. Alternate-forms correlations were strong for HVLT (rs between 0.71 and 0.82). Principal components analysis yielded four interpretable components. Age and reading score were significant covariates of virtually all of the test summary measures, while education, gender, race, and depression were not generally significant covariates. Changes to the method of calculation of some summary measures, changes to the initial instructions to the subjects, and addition of correctional feedback to subjects during the tests appeared to improve the reliability of some NES3 tests. Implementation of the HVLT and ART in computer-assisted format added breadth of coverage to the battery. NES3 tests may provide reliable, efficient data for use in epidemiologic studies of potential cognitive effects of occupational and environmental exposures.