A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons.

Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 persons with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both persons with epilepsy and their support persons and how the experiences of persons with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. Persons with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. Persons with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for persons with epilepsy and their supporters.

A mixed methods analysis of support for self-management behaviors: perspectives of people with epilepsy and their support providers.

Social support is associated with improved self-management for people with chronic conditions, such as epilepsy; however, little is known about the perceived ease or difficulty of receiving and providing support for epilepsy self-management. We examined patterns of epilepsy self-management support from the perspectives of both people with epilepsy and their support persons. Fifty-three people with epilepsy and 48 support persons completed a survey on epilepsy self-management support. Of these individuals, 22 people with epilepsy and 16 support persons completed an in-depth interview. Rasch measurement models were used to evaluate the degree of difficulty of receiving or providing support often for nine self-management tasks. We analyzed model-data fit, person and item location along the support latent variable and differential person and item functioning. Qualitative methods were used to provide context and insight into the quantitative results. The results demonstrated good model-data fit. Help with seizures was the easiest type of support to receive or provide more often, followed by rides to a doctor's appointments and help avoiding seizure triggers. The most difficult types of support to receive or provide more often were reminders, particularly for taking and refilling medications. While most participants' responses fit the model, responses of several individuals misfit the model. Person misfit generally occurred because the scale items did not adequately capture some individuals' behaviors. These results could be useful in designing interventions that use support as a means of improving self-management. Additionally, the results provide information to improve or expand current measures of support for epilepsy self-management to better assess the experiences of people with epilepsy and their support persons.

Perspectives of adults with epilepsy and their support persons on self-management support.

Social support is an important mechanism for improving self-management, although little is known about its role in epilepsy self-management. We examined the type of support provided to people with epilepsy and its influence on self-management. We conducted in-depth interviews with 22 people with epilepsy and 16 support persons, representing 14 pairs and 10 unpaired individuals. We analyzed the data using principles of grounded theory. Supporters, who were mainly parents and spouses, aided people with epilepsy in every dimension of self-management. Support for self-management occurred along a continuum from person with epilepsy-led management to support person-led management. Where the pairs fell on the continuum depended on developmental stage, relationship type, and relationship dynamics. Seizure control shaped individuals' experiences with self-management and support within each group. The self-management continuum provides a new aspect that can be integrated into existing models of self- and family management.

Social support for self-management behaviors among people with epilepsy: a content analysis of the WebEase program.

Social support is an important component in managing epilepsy; however little is known about support provided to people with epilepsy. This study examined whom people with epilepsy identify as supportive, and how those individuals support people with epilepsy's self-management efforts. Data come from the WebEase project, an effective online epilepsy self-management program. People with epilepsy who participated in the pilot (n=35) and efficacy trials (n=118) were included. A content analysis was conducted on responses to open-ended questions related to support. The majority of participants provided information about their supporters. The number of support providers ranged from 0 to 6, with about 12% indicating no support. Parents and significant others were most commonly listed as supporters. Support providers mainly offer emotional and instrumental support, reminders and aid for taking medication, and support for self-management strategies. These results could be useful for interventions aimed at bolstering support in order to improve self-management.

Group motivational interviewing to promote adherence to antiretroviral medications and risk reduction behaviors in HIV infected women.

We present the results of a clinical trial that tested the efficacy of using motivational interviewing (MI) in a group format to promote adherence to antiretroviral medications and risk reduction behaviors (RRB) in 203 predominately African American HIV infected women. It was compared to a group health promotion program. Participants were followed for 9 months. Adherence was measured by MEMS(®); and RRB by self-report. Controlling for recruitment site and years on ART, no significant group by time effects were observed. Attendance (≥7/8 sessions) modified the effects. Higher MI attendees had better adherence at all follow-ups, a borderline significant group by time effect (p = 0.1) for % Doses Taken on Schedule, a significantly larger proportion who reported abstinence at 2 weeks, 6, and 9 months, and always used protection during sex at 6 and 9 months. Though not conclusive, the findings offer some support for using MI in a group format to promote adherence and some risk reduction behaviors when adequate attendance is maintained.

Results of a research study evaluating WebEase, an online epilepsy self-management program.

WebEase (Epilepsy Awareness, Support, and Education) is an online epilepsy self-management program to assist people with taking medication, managing stress, and improving sleep quality. The primary study aims were to determine if those who participated in WebEase demonstrated improvements in medication adherence, perceived stress, and sleep quality. Participants were randomized to a treatment (T) or waitlist control (WCL) group (n=148). At follow-up, participants in the T group reported higher levels of medication adherence than those in the WLC group. Analyses were also conducted comparing those who had completed WebEase modules with those who had not. Those who had completed at least some modules within the WebEase program reported higher levels of self-efficacy and a trend toward significance was observed for the group×time interactions for medication adherence, perceived stress, self-management, and knowledge. The results highlight the usefulness of online tools to support self-management among people with epilepsy.

Use of complementary and alternative medicine among men with prostate cancer in a rural setting.

UNLABELLED: The purpose of this study was to examine the prevalence and predictors of complementary and alternative medicine (CAM) use among rural patients with localized prostate cancer. The study also examined the participants' disclosure of CAM use to their physicians. Baseline and 6-month follow-up data were taken from a study examining the factors that influence treatment choice and quality of life among men diagnosed with and being treated for localized prostate cancer residing in rural southwest Georgia (N = 321). A total of 291 participants were interviewed at baseline and 6-month follow-up. FINDINGS: At baseline, 26.4% reported ever using CAM. Among them, dietary supplements were the most commonly used (75%), and 56% of patients did not disclose their CAM use to their physicians. At 6-month follow-up, 11% of the study sample reported using CAM since starting treatment (half of these were new users). The proportions of CAM users who reported taking dietary supplements after treatment were significantly lower than the corresponding proportions before treatment. CAM use after treatment was more common among those who selected surgery and watchful waiting. While 44% of the sample disclosed using CAM to their doctors before treatment, 61% after treatment began (P = 0.05). We found that CAM use after cancer treatment in this population was markedly less common than in nationally reported data for cancer patients. In line with national patterns, younger and more educated rural patients were significantly more likely to have ever used CAM and to use it after treatment.

Differences in treatment-based beliefs and coping between African American and white men with prostate cancer.

The purpose of the study was to explore racial differences related to treatment-based beliefs (trust in physician, physician bias, access to care, and self-efficacy) and coping (religious coping and social support). The study was conducted in a 33-county area located in southwest Georgia (SWGA). Men living in SWGA and newly diagnosed with prostate cancer were invited to participate in the study. Men were also required to be 75 years of age or younger at the beginning of the study and free of dementia. In collaboration with the Georgia Cancer Registry, potentially eligible participants were identified through pathology reports. Participants completed three interviews during a 12-month period post-diagnosis. The 320 participants in this analysis ranged in age from 44 to 75 years with a mean age of 63 years, and 42% were African American. After controlling for confounders, African American participants were more likely to report physician bias, financial problems with access to care, and use of religious coping strategies. These results, based on a largely rural patient population, support those of other studies noting differences in perception of care, access to care, and coping strategies between African American and white men with prostate cancer.

Distance delivery of mindfulness-based cognitive therapy for depression: project UPLIFT.

This study evaluated the efficacy of a newly developed, home-based depression intervention for people with epilepsy. Based on mindfulness-based cognitive therapy (MBCT), the eight-session, weekly intervention was designed for group delivery via the Internet or telephone. Forty participants were randomly assigned to intervention or waitlist. Depressive symptoms and other outcomes were measured at baseline, after intervening in the intervention group (~8 weeks), and after intervening in the waitlist group (~16 weeks). Depressive symptoms decreased significantly more in the intervention group than the waitlist group; Internet and telephone did not differ. This effect persisted over the 8 weeks when those waitlisted received the intervention. Knowledge/skills increased significantly more in the intervention than the waitlist group. All other changes, though not significant, were in the expected direction. Findings indicate that distance delivery of group MBCT can be effective in reducing symptoms of depression in people with epilepsy. Directions for future research are proposed.

The prevention research centers' managing epilepsy well network.

The Managing Epilepsy Well (MEW) Network was created in 2007 by the Centers for Disease Control and Prevention's (CDC) Prevention Research Centers and Epilepsy Program to promote epilepsy self-management research and to improve the quality of life for people with epilepsy. MEW Network membership comprises four collaborating centers (Emory University, University of Texas Health Science Center at Houston, University of Michigan, and University of Washington), representatives from CDC, affiliate members, and community stakeholders. This article describes the MEW Network's background, mission statement, research agenda, and structure. Exploratory and intervention studies conducted by individual collaborating centers are described, as are Network collaborative projects, including a multisite depression prevention intervention and the development of a standard measure of epilepsy self-management. Communication strategies and examples of research translation programs are discussed. The conclusion outlines the Network's role in the future development and dissemination of evidence-based epilepsy self-management programs.

Attitudes about mental illness and its treatment: validation of a generic scale for public health surveillance of mental illness associated stigma.

The purpose of this study was to test a brief instrument to monitor the U.S. public's attitudes about mental illness. A SAMHSA and CDC-led panel reached consensus through an iterative process to identify generic, multidimensional measures to test using a representative sample of 5,251 adults. Exploratory factor analysis revealed two subscales (Negative Stereotypes [alpha = 0.66]; Recovery and Outcomes [alpha = 0.69]). Confirmatory factor analysis supported the convergent validity of the two subscales. Subscale scores differed by sex, race/ethnicity, and experience with mental illness. Inclusion of these brief subscales on existing population-based surveys can help states and others track attitudes about mental illness.

Adherence to antiretroviral medication regimens: a test of a psychosocial model.

OBJECTIVE: The primary aim of this study was to test a psychosocial model of medication adherence among people taking antiretroviral medications. This model was based primarily on social cognitive theory and included personal (self-efficacy, outcome expectancy, stigma, depression, and spirituality), social (social support, difficult life circumstances), and provider (patient satisfaction and decision-making) variables. DESIGN: The data for this analysis were obtained from the parent study, which was a randomized controlled trial (Get Busy Living) designed to evaluate an intervention to foster medication adherence. Factor analysis was used to develop the constructs for the model, and structural equation modeling was used to test the model. Only baseline data were used in this cross sectional analysis. METHODS: Participants were recruited from a HIV/AIDS clinic in Atlanta, GA. Prior to group assignment, participants were asked to complete a questionnaire that included assessment of the study variables. Results A total of 236 participants were included in the analysis. The mean age of the participants was 41 years; the majority were male, and most were African-American. In the final model, self-efficacy and depression demonstrated direct associations with adherence; whereas stigma, patient satisfaction, and social support were indirectly related to adherence through their association with either self-efficacy or depression. CONCLUSION: These findings provide evidence to reinforce the belief that medication-taking behaviors are affected by a complex set of interactions among psychosocial variables and provide direction for adherence interventions.

Individual, seizure-related, and psychosocial predictors of depressive symptoms among people with epilepsy over six months.

Depression is the most frequently diagnosed psychiatric disorder among people with epilepsy. A variety of risk factors for depression among people with epilepsy have been identified; however, few studies have examined these risk factors over time. The primary purpose of this study was to explore the relationship between demographic characteristics, seizure-related factors, and psychosocial factors and depressive symptoms over 6 months. Three hundred and nineteen adults with epilepsy completed three surveys at 3-month intervals. Multiple linear regression was used with the baseline variables to predict depressive symptoms at baseline, 3 months, and 6 months. Employment status, social support, and stigma emerged as predictors of depressive symptoms at all three time points. Other factors that predicted depression symptoms in one or two time points were self-management, financial strain, and activity restriction due to seizures. The results indicate that multiple factors influence depressive symptoms among people 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.

WebEase: development of a Web-based epilepsy self-management intervention.

People with epilepsy must adopt many self-management behaviors, especially regarding medication adherence, stress management, and sleep quality. In response to the need for theory-based self-management programs that people with epilepsy can easily access, the WebEase Web site was created and tested for feasibility, acceptability, and usability. This article discusses the theoretical background and developmental phases of WebEase and lessons learned throughout the development process. The WebEase research team developed content for the Web site on the basis of social cognitive theory, the transtheoretical model of behavior change, and motivational interviewing. Formative research and development of the WebEase program included a literature search, computer use survey, a focus group, and review by content experts and consumers. The program has 2 main components: 1) the modules, which provide a tailored opportunity for learning, reflection, and goal setting, and 2) MyLog, a place to enter daily information.

Psychosocial predictors of lifestyle management in adults with epilepsy.

The purposes of the work described in this article were to (1) describe a model of predictive relationships among psychosocial variables and lifestyle management, and (2) test the model among people with epilepsy. The variables selected for the model were based on social cognitive theory and the results of previous studies examining psychosocial predictors of self-management among people with chronic physical health conditions. Variables included in the model were self-efficacy, outcome expectancies, depressive symptoms, and social support. Participants for the study were recruited from epilepsy treatment facilities in Boston, MA, and Atlanta, GA, USA. Half of the participants were female, 81% were white, and their mean age was 43.1 years. As predicted by social cognitive theory, self-efficacy was related to lifestyle management and explained 23% of its variation. Depressive symptoms were related to both self-efficacy and social support. Social support was related to self-efficacy. These findings suggest that lifestyle management is influenced by a number of relationships between psychosocial variables, particularly by self-efficacy.

REAL men: a group-randomized trial of an HIV prevention intervention for adolescent boys.

OBJECTIVES: We tested the efficacy of an intervention among 11- to 14-year-old adolescent boys to promote delay of sexual intercourse, condom use among those who were sexually active, and communication on sexuality between fathers (or father figures) and sons. METHODS: Sites were randomly assigned to the intervention and control groups. Assessments were conducted prior to the intervention and at 3-, 6-, and 12-month follow-up interviews. RESULTS: A total of 277 fathers and their sons completed baseline assessments. Most participants were African American, and most fathers lived with their sons. Significantly higher rates of sexual abstinence and condom use and of intent to delay initiation of sexual intercourse were observed among adolescent boys whose fathers participated in the intervention. Fathers in the intervention group reported significantly more discussions about sexuality and greater intentions to discuss sexuality than did control-group fathers. CONCLUSIONS: The study demonstrates that fathers can serve as an important educator on HIV prevention and sexuality for their sons.

Implementation of audio computer-assisted interviewing software in HIV/AIDS research.

Computer-assisted interviewing (CAI) has begun to play a more prominent role in HIV/AIDS prevention research. Despite the increased popularity of CAI, particularly audio computer-assisted self-interviewing (ACASI), some research teams are still reluctant to implement ACASI technology because of lack of familiarity with the practical issues related to using these software packages. The purpose of this report is to describe the implementation of one particular ACASI software package, the Questionnaire Development System (QDS; Nova Research Company, Bethesda, MD), in several nursing and HIV/AIDS prevention research settings. The authors present acceptability and satisfaction data from two large-scale public health studies in which they have used QDS with diverse populations. They also address issues related to developing and programming a questionnaire; discuss practical strategies related to planning for and implementing ACASI in the field, including selecting equipment, training staff, and collecting and transferring data; and summarize advantages and disadvantages of computer-assisted research methods.

Advancing nursing science in vulnerable populations: measurement issues.

This study examined measurement practices of researchers in relation to vulnerable population research published in four general nursing research journals in 2004. The purpose was to identify issues and imperatives in the measurement of research variables with vulnerable populations that warrant attention. A total of 133 articles were eligible for inclusion in the study, and 428 measurement instruments were used in the studies. A content analysis of the 133 eligible articles indicated that most samples included to a greater extent more Whites than predominantly minority populations, and more adults than children. Most of the articles did not specify socioeconomic status of samples. Of the 133 eligible articles, 83 (62.4%) included samples that were comprised of a majority of racial and ethnic minorities; however, percentages of studies that focused predominately on a specific minority group were below 10% in more than 80% of studies. Major findings related to measurement practices indicated inadequate specification of the measurement framework employed; lack of adequate specification of the conceptual base of measurement tools; and, a heavy reliance on the use of self-report data, attitudinal and perceptual measures, and the use of questionnaires and rating scales. There was also inadequate attention to the metric qualities of laboratory physiological measures, and to reliability and validity in general. It was concluded that inadequate attention is given to measurement practices by researchers when studying vulnerable populations.

Initial testing of the Antiretroviral Medication Complexity Index.

This article describes the initial development and testing of the Antiretroviral Medication Complexity Index (AMCI), an instrument to measure complexity of antiretroviral medications and regimens. Data were derived from a pilot study and the main study of an intervention designed to promote adherence to antiretroviral medications. Interrater reliability coefficients ranged from .74 to 1.0 for project staff and from .33 to 1.0 for nurse clinicians. Test-retest coefficients ranged from .297 to .988 for forms completed by the same interviewer and from .200 to .922 for different interviewers. Strong relationships existed between rankings of the medications by clinical judgment and rankings of the medications using the AMCI, providing support for criterion validity. Complexity as measured by the AMCI was associated with some measures of adherence, providing partial support for construct validity. Results provide evidence for the reliability and validity of the AMCI when used for research purposes.