Project UPLIFT: Adoption and implementation experiences of an epilepsy self-management program.

RATIONALE: Project UPLIFT is an evidence-based epilepsy self-management program shown to prevent and treat depression through an 8-session, group telehealth intervention. Since 2012, the program has been disseminated by training community-based providers to deliver UPLIFT to people with epilepsy (PWE). Limited research has described the adoption, implementation, and practice-based maintenance of self-management programs like UPLIFT. We sought to gain a better understanding of this process from trained program adopters. METHODS: A cross-sectional evaluation of adoption and implementation experiences was conducted. An online survey with closed- and open-ended questions was distributed to 120 UPLIFT program adopters to collect information about reasons for being trained and experiences implementing the program. Survey items were developed based on the RE-AIM model to assess program reach, effectiveness, adoption, implementation, and maintenance. For closed-ended responses, frequencies and cross-tabs were calculated. Open-ended responses were reviewed and grouped by theme. RESULTS: 41 respondents completed the survey (34% response rate). Respondents were from a variety of organizations including clinical (39%, n = 16), educational/research (17%, n = 7), and Epilepsy Foundation affiliates/chapters (12%, n = 5), among others. The most frequently endorsed reason for training in UPLIFT was an interest in supporting PWE (73%, n = 30). Most respondents rated delivering UPLIFT as very important (49%, n = 20) or important (32%, n = 13) to the organization. Sixty-one percent (n = 25) of respondents reported implementing (implementors) UPLIFT. Of those who had not yet implemented UPLIFT, 50% (n = 8) planned on implementing it at some point. Among program implementors, the most frequently reported implementation facilitators included participant interest (68%, n = 17), training (68%, n = 17), and organizational support (64%, n = 16). Program implementors indicated having program champions (80%, n = 20). The most frequently reported implementation challenge reported was recruitment (72%, n = 18). In open-ended responses, funding was a key theme that would facilitate continued implementation, but 48% (n = 12) responded that did not have access to resources and/or funding to help continue offering UPLIFT. Developing partnerships was recommended to improve the reach and maintenance of the program. Despite challenges, implementors agreed (44%, n = 11) or strongly agreed (36%, n = 9) that UPLIFT was effective in addressing mental health problems among program participants, and 76% (n = 19) plan on continuing to offer UPLIFT. CONCLUSION: Implementation surveys increase understanding of program adoption and impact for dissemination trainees. Implementation benefits from program champions, strong partnerships, and sustained funding. Continued refinement of implementation support, such as developing a sustained referral system, maintaining relationships with trainees, supporting evaluation activities, and exploring opportunities for program updates to further enhance adoption, implementation, and maintenance.

A realist process evaluation of the INtegrating DEPrEssioN and Diabetes treatmENT (INDEPENDENT) randomized controlled trial in India.

Aims: We aimed to determine what key resources, mechanisms, and contextual factors are necessary to integrate depression and diabetes treatment into low-resource settings. Methods: A realist evaluation framework was employed to conduct a comparative case study. Data were collected through document review, key informant interviews (n = 4), activity logs, and interviews with implementing health care providers (n = 11) to test and refine program theories for collaborative care. Results: Efforts to enhance patient care coordination (i.e., adapting clinics' patient flow and resources, on-going trainings, and on-site support for care coordinators) improved implementation of depression treatment by usual care diabetes physicians. Clinician's avoidance of the term depression was identified as a barrier to mental health counseling and treatment. Conclusions: The variations in organizational features and processes linked to implementation activities across two clinics provided an opportunity to examine how and why different contextual factors help or hinder the implementation process. Findings from this study demonstrate that successful implementation of an integrated depression and diabetes care model is feasible in a low-resource setting, while the revised program theories provide an explanatory framework of coordinated care implementation processes that can inform future efforts to disseminate and scale this care model.

Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI).

Managing one's own symptoms, medications, treatments, lifestyle, and psychological and social aspects of chronic disease is known as self-management. The Institute of Medicine has identified three categories of epilepsy self-management, including medication management, behavior management, and emotional support. Overall, there has been limited research of interventions measuring epilepsy self-management behaviors. The present study aimed to develop an abbreviated version of the full, previously published, Adult Epilepsy Self-Management Measurement Instrument (AESMMI) using confirmatory factor analysis. Data come from a cross-sectional survey of people with epilepsy. The sample included adults with epilepsy (n = 422), who reported that a clinician diagnosed them with epilepsy or a seizure disorder. We ran confirmatory factor analyses in testing the abbreviated scale. The scale was reduced using a theory-driven data-informed approach. The full AESMMI length was reduced by 40% (from 65 to 38 items) with an overall internal consistency of 0.912. The abbreviated AESMMI retained the 11 subdomains, with Cronbach's alphas from 0.535 to 0.878. This reduced item scale can be useful for assessing self-management behaviors for people with epilepsy or measuring outcomes in self-management research.

A pilot study assessing the feasibility and acceptability of Project UPLIFT adapted for patients with psychogenic nonepileptic seizures.

BACKGROUND: People with psychogenic nonepileptic seizures (PNES) are at elevated risk of multiple psychiatric comorbidities. Current treatment gaps highlight the need for time-limited, distance-delivered interventions that can be cost-effectively delivered to patients with PNES. Project UPLIFT is a self-management program addressing mood problems in epilepsy that has not previously been adapted for PNES. The purpose of this study was to assess the feasibility and acceptability of UPLIFT for patients with PNES. METHODS: Project UPLIFT was minimally adapted by a multidisciplinary research group at Dartmouth-Hitchcock Medical Center. Participants were recruited into a nonrandomized pilot study and were assessed at baseline, after completing the intervention, and at 1-month follow-up. RESULTS: The intervention was adapted and delivered without additional modification. A total of eight participants enrolled in the trial, and six participated in the first session. All six participants who started UPLIFT completed the intervention, with a 98% attendance record across the eight sessions. At follow-up, 100% reported that UPLIFT provided useful tools for daily life. All participants continued using UPLIFT after completing the program, and 83% felt it helped with seizure management. Preliminary results provide proof-of-concept for future efficacy trials. CONCLUSION: This study provides initial support for the feasibility and acceptability of Project UPLIFT, minimally adapted for patients with PNES. As a time-limited program that can be distance-delivered to groups of patients, UPLIFT may be well-suited for the healthcare environment brought on by the COVID-19 pandemic.

Factors that facilitate patient activation in the self-management of diabetes and depression among participants enrolled in an integrated chronic care model in India.

BACKGROUND: The aim of this study was to identify factors that influence patients' motivation and ability to self-manage their diabetes and depressive symptoms. METHODS: From 2016 to 17, in-depth interviews were conducted with 62 patients receiving the INDEPENDENT care model across two clinics in India. Using a realist evaluation approach, a hypothesized program theory for patient activation was tested and refined. FINDINGS: The refined theory demonstrates that motivation, education, and engagement cumulatively contribute to patient activation. CONCLUSION: The results indicate that positive and sustained patient-provider relationships drive patient motivation and enhance implementation of the care model.

Epilepsy self-management behaviors among African Americans with epilepsy.

PURPOSE: Although self-management practices are heavily studied in the general population of adults with epilepsy, African American people with epilepsy (PWE) have been understudied. Improving understanding about epilepsy self-management among African Americans is warrantedbecause of the significantly greater mortality rates among this population compared withPWE from other racial/ethnic groups. The purpose of this study was to assess the reliability and validity of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI) for Black/African American adults and describe their self-management behaviors. METHODS: This study was a cross-sectional survey of self-identified Black/African American adults who reported that a health provider diagnosed them as having epilepsy or a seizure disorder. Participants completed a cross-sectional survey between spring 2017 and fall 2018. The survey measured self-management behaviors (65-itemAESMMI), quality of life, depression, seizure severity, epilepsy history, and demographics. We ran descriptive analyses, computed scales, and ran reliability statistics for the AESMMI. Correlations were run between total AESMMI score and depression symptoms and quality of life to assess construct validity. RESULTS: Generally, participants (N = 114) were male (58.6%), from urban/suburban settings (90.5%), at least high school graduates (86.4%), and of lowerincome (90.3%). Their ages ranged from 19 to 64 years with a mean age of 53 years (standard deviation [SD] = 10.9). Participants had general (72.8%) and focal seizures (55.3%) primarily. Many were diagnosed at a young age (M = 10.9), were on antiepileptic medications (91.2%), and had seen a primary care doctor (68.4%) or general neurologist for treatment (54.4%). Sixty percent had visited a neurologist in the past year. African American participants had a low score on quality of life (Quality of Life in Epilepsy [QOLIE], M = 1.86) and low depression symptoms (Patient Health Questionnaire [PHQ-8], M = 3.13). Participants reported conducting self-management behaviors in the following domains more frequently: proactivity (M = 4.11), medication adherence (M = 3.92), healthcare communications (M = 3.91), and social support (M = 3.90). In contrast, they performed self-management behaviors related to treatment (M = 3.34), stress management (M = 3.56), and safety (M = 3.58) less frequently. The overall reliability of the AESMMI was 0.88. Adult Epilepsy Self-Management Measurement Instrument score was correlated with quality of life (r = 0.151). CONCLUSION: Findings are clinically relevant as knowing patients'self-management behaviors enables healthcare clinicians to support and encourage adults to improve the management of their epilepsy. Services or interventions related to coping with stress, safety, and adherence with treatment and medication may be warranted for African Americans with epilepsy.

Understanding the pros and cons of organ donation decision-making: Decisional balance and expressing donation intentions among African Americans.

Increasing public commitment to organ donation is critical to improving donor kidney availability for end-stage renal disease patients desiring transplant. This study surveyed (N = 1339) African Americans, measuring perceived pros relative to cons of organ donation, to evaluate an existing Transtheoretical Model decisional balance scale and associations between decisional balance and expressing donation intentions. Findings supported the existing scale structure. More positive decisional balance ratios were associated with 1.76 times the odds of expressing intentions (95% confidence interval = 1.52-2.04). Pros were more strongly linked to donation intentions than cons. Greater understanding of organ donation decision-making is valuable for informing interventions that encourage donation.

The impact of a depression self-management intervention on seizure activity.

PURPOSE: Seizures have a variety of significant physical, cognitive, and social effects upon the individual. Depression has been linked to an increase in seizure activity, and Project Using Practice and Learning to Increase Favorable Thoughts (UPLIFT) was shown to reduce depressive symptoms. Project UPLIFT, based upon mindfulness-based cognitive therapy (MBCT), provides distance delivery of depression management skills to groups of people with epilepsy. Because Project UPLIFT reduces depression and depression is linked to seizure activity, the current analysis was designed to determine the impact of Project UPLIFT upon seizure frequency and severity. METHOD: Participants (n = 107) were adults ages 21-70 with epilepsy and mild-to-moderate depressive symptoms from the states of Georgia, Michigan, Texas, and Washington. The eight-session Project UPLIFT intervention was group-delivered weekly via the web or telephone. Participants were randomly assigned to condition (i.e., Project UPLIFT or a treatment-as-usual [TAU] waitlist) and assessed at baseline, and after intervening in the Project UPLIFT group (~10 weeks). Assessments included valid self-report measures of seizure frequency and severity and depression. RESULTS: Mediation analysis found that there was a significant negative direct relationship between condition and number of seizures at posttest; the mean number of seizures decreased by 3.2 in the Project UPLIFT group, but increased by 2.3 in the TAU group. The indirect path from condition to number of seizures through change in depression was not significant. Conversely, there was no significant negative direct relationship between condition and seizure severity at posttest, although the seizure severity decreased by 2.2 points in the UPLIFT group and increased by 2.7 points in the TAU group. The indirect path from condition to seizure severity through depression was significant, however, demonstrating that change in depression mediated the effect of Project UPLIFT on seizure severity. CONCLUSIONS: This study found that participating in Project UPLIFT directly reduced the number of seizures experienced by participants with epilepsy. This was not mediated by the change in depression. Participation in Project UPLIFT also reduced their perceived seizure severity indirectly, through reducing their depressive symptoms. This suggests Project UPLIFT may have the potential to impact the health, healthcare costs, and well-being of people with epilepsy.

Depression self-management in people with epilepsy: Adapting project UPLIFT for underserved populations.

Data from the 2015 National Health Interview Survey found that the prevalence of active epilepsy has increased to three million adults. Although findings have been mixed, some research indicates that Blacks and Hispanics share a higher burden of epilepsy prevalence compared with non-Hispanic whites. Moreover, depression is a common comorbid condition among people with epilepsy (PWE), affecting up to 55% of the epilepsy population. Widespread use and increased public health impact of evidence-based self-management interventions is critical to reducing disease burden and may require adapting original interventions into more culturally relevant versions for racial and ethnic minority groups. Project UPLIFT provides access to mental health self-management skills training that is distance-delivered, does not interfere with medication management, and has been shown to be effective in reducing depressive symptoms. This paper presents the process of exploring the adaptation of Project UPLIFT for Black and Hispanic PWE and herein suggests that evidence-based interventions can be successfully adapted for new populations or cultural settings through a careful and systematic process. Additional key lessons learned include the importance of community engagement and that language matters. Ultimately, if the adapted Project UPLIFT intervention produces positive outcomes for diverse populations of PWE, it will extend the strategies available to reduce the burden of depression. Implementing evidence-based interventions such as Project UPLIFT is critical to reducing disease burden; however, their delivery may need to be tailored to the needs and culture of the populations of interest.

Depression and quality of life among African Americans with epilepsy: Findings from the Managing Epilepsy Well (MEW) Network integrated database.

Depression and worse quality of life (QOL) are significantly associated with epilepsy. However, limited descriptive data on depression and quality of life among African Americans with epilepsy are available. This study sought to describe the prevalence of depression among African Americans with epilepsy participating in self-management studies and to examine the relationship between depression and QOL. Using data from the Managing Epilepsy Well (MEW) research network, a subgroup of African Americans with epilepsy were selected for the analytic sample. Descriptive statistics indicated the prevalence of depression (Patient Health Questionnaire-9 [PHQ-9]) and reports of epilepsy-specific QOL (Quality of Life in Epilepsy-10 [QOLIE-10]) in the sample. Multiple linear regression examined the relationship between depression and QOL while controlling for sociodemographic characteristics and seizure frequency. The prevalence of depression (PHQ-9 ≥; 10) was 47.7%. Quality of life was the only variable significantly associated with depressive symptoms in multivariable analyses, suggesting that depressive symptoms have a stronger relationship with QOL than seizure frequency. With the high levels of depression and the significant relationship with QOL, regular screening of depression is needed among African Americans with epilepsy. Self-management programs that improve mood may also play an important role in improving the lives of African Americans with epilepsy.

A Community-Based Study of Giving ACTS: Organ Donation Education for African American Adults.

BACKGROUND: Transplantation continues to be the therapy of choice for people experiencing end-stage organ failure. African Americans (AAs) are overrepresented among those awaiting an available organ for the purpose of a transplant, yet donate at rates lower than other races due to a list of well-studied barriers. The Giving ACTS (About Choices in Transplantation and Sharing) Intervention was developed to provide culturally appropriate messaging to AAs about organ and tissue donation and transplantation (OTDT). The purpose of this community-based study was to test the extent to which the intervention was effective in (1) improving donation-related knowledge and attitudes among AA participants, and (2) increasing registration on the state donor registry. METHODS: Using a single-group, pre-post design, 1,585 participants received the intervention in small groups hosted in community settings. RESULTS: From baseline to immediate follow-up, participants significantly increased in OTDT-related knowledge, beliefs and attitudes, endorsement of the positive consequences of donation, and willingness to donate (all ps < .001). Participants' beliefs about the negative consequences of organ and tissue donation, however, did not significantly change, and registration on the state donor registry was negligible (1.3%). CONCLUSION: Results suggest that Giving ACTS was generally successful in improving attitudes and beliefs; the intervention, however, was not effective in changing participants' beliefs about the negative consequences of OTDT, or increasing actual registration behaviors. Future studies in this area should be conducted to empirically evaluate the role of distrust in healthcare systems among AAs and its possible mediating effect on the relationship between donation-related education and the desired health behaviors.

Perceived peer norms and alcohol use among college students in China.

INTRODUCTION: Currently, there has been little research on peer drinking norms with non-English speaking college populations. Using a Chinese college student sample, the present study investigated perceived peer norms and their associations with individual alcohol-related behaviors. METHODS: Past six-month drinkers (n = 436, 50% men, mean age = 20.49) recruited from one college in China took an anonymous paper-and-pencil survey. To examine the differences in alcohol-related behaviors among groups, one-way repeated measures analysis of variance and chi-square tests were conducted. To investigate the associations between perceived peer norms and individual alcohol-related behaviors, sequential linear and logistic regression analyses were conducted. RESULTS: There were overall mean differences in alcohol use among participants, perceived best friends, and perceived average student for both men (F (1.98, 421.06) = 13.12, p < .001) and women (F (1.89, 399.70) = 5.79, p < .01). The proportion of best friends perceived as having had heavy episodic drinking was higher than that of participants who had had heavy episodic drinking (χ2 (1, N = 415) = 61.85, p < .001). So was the proportion of the average student perceived as having had heavy episodic drinking (χ2 (1, N = 414) = 68.17, p < .001). After controlling for demographic variables, perceived peer alcohol use explained 17% of the variance in individual alcohol use; perceived peer heavy episodic drinking contributed to 2.6 to 3.6 times higher odds of participants' reporting heavy episodic drinking. CONCLUSIONS: Replication research is needed to inform social norms interventions for Chinese college students.

Implementation of a Web-Based Organ Donation Educational Intervention: Development and Use of a Refined Process Evaluation Model.

BACKGROUND: The lack of available organs is often considered to be the single greatest problem in transplantation today. Internet use is at an all-time high, creating an opportunity to increase public commitment to organ donation through the broad reach of Web-based behavioral interventions. Implementing Internet interventions, however, presents challenges including preventing fraudulent respondents and ensuring intervention uptake. Although Web-based organ donation interventions have increased in recent years, process evaluation models appropriate for Web-based interventions are lacking. OBJECTIVE: The aim of this study was to describe a refined process evaluation model adapted for Web-based settings and used to assess the implementation of a Web-based intervention aimed to increase organ donation among African Americans. METHODS: We used a randomized pretest-posttest control design to assess the effectiveness of the intervention website that addressed barriers to organ donation through corresponding videos. Eligible participants were African American adult residents of Georgia who were not registered on the state donor registry. Drawing from previously developed process evaluation constructs, we adapted reach (the extent to which individuals were found eligible, and participated in the study), recruitment (online recruitment mechanism), dose received (intervention uptake), and context (how the Web-based setting influenced study implementation) for Internet settings and used the adapted model to assess the implementation of our Web-based intervention. RESULTS: With regard to reach, 1415 individuals completed the eligibility screener; 948 (67.00%) were determined eligible, of whom 918 (96.8%) completed the study. After eliminating duplicate entries (n=17), those who did not initiate the posttest (n=21) and those with an invalid ZIP code (n=108), 772 valid entries remained. Per the Internet protocol (IP) address analysis, only 23 of the 772 valid entries (3.0%) were within Georgia, and only 17 of those were considered unique entries and could be considered for analyses. With respect to recruitment, 517 of the 772 valid entries (67.0%) of participants were recruited from a Web recruiter. Regarding dose received, no videos from the intervention website were watched in their entirety, and the average viewing duration was 17 seconds over the minimum. With respect to context, context analysis provided us with valuable insights into factors in the Internet environment that may have affected study implementation. Although only active for a brief period of time, the Craigslist website advertisement may have contributed the largest volume of fraudulent responses. CONCLUSIONS: We determined fraud and low uptake to be serious threats to this study and further confirmed the importance of conducting a process evaluation to identify such threats. We suggest checking participants' IP addresses before study initiation, selecting software that allows for automatic duplicate protection, and tightening minimum requirements for intervention uptake. Further research is needed to understand how process evaluation models can be used to monitor implementation of Web-based studies.

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

Impact of Georgia's teenage and adult driver responsibility act: 15-year follow-up.

OBJECTIVE: This study was designed to investigate the 15-year impact of Georgia's graduated drivers' licensing (GDL) law, the "Teenage and Adult Driver Responsibility Act" (TADRA), on fatality crashes among young drivers. METHODS: Fatality Analysis Reporting System (FARS) data for Georgia and Census denominators were used to determine fatal crash rates (FCRs) of drivers ages 16 through 19 who passed through the Georgia GDL system during the 5.5 years prior to through 15.5 years after TADRA's implementation. FCRs of younger drivers were compared to those of drivers ages 20-54 and 55-75 and compared by gender. Attention was given to speeding- and alcohol-related crashes, 2 foci of TADRA. RESULTS: The decline in FCRs has been maintained and even increased through 15.5 years after passage of the law. Extending the curfew and further limiting passengers (passed in 2001) and driver's education and supervised driving requirements (added in 2007) may have contributed. The greatest declines were among 16- and 17-year-olds; most of the gains were among male drivers. The changes were greatest for alcohol- and speeding-related crashes. Those 18 and 19 years old did not demonstrate an increase in FCR over the period studied. CONCLUSION: Georgia's graduated licensing law, TADRA, has maintained and in some instances increased in effectiveness over the 15.5 years since its inception. Though national research suggests that GDL laws are associated with increased crash rates among 18- to 19-year-old drivers, this has not occurred in Georgia; 18- and 19-year-olds demonstrated no change or reductions in FCR over the 20.5-year period evaluated. Declines were greatest for those driving behaviors targeted by the law.

An Exploration of the Four-Factor Structure of the Drinking Motives Questionnaire-Revised Among Undergraduate Students in China.

BACKGROUND: College drinking has become a significant health issue in China; the current study addressed the gap that no prior research has investigated drinking motives among Chinese undergraduate students. OBJECTIVES: This study aimed to replicate the four-factor structure of the Drinking Motives Questionnaire-Revised (DMQ-R) reported for Western populations. Additionally, the relationships between drinking motives and alcohol use were investigated. METHODS: In 2012, 436 participants (mean age = 20.49 and SD = 1.49; 50% male) recruited from a college in China completed a self-administered survey in their classroom setting. Drinking motives were measured by the Chinese version of the DMQ-R; three indicators of alcohol use were assessed. Factor analysis was conducted to examine the factor structure of the DMQ-R, followed by regression analysis to investigate the associations between drinking motives and alcohol-related outcomes. RESULTS: Confirmatory factor analysis failed to replicate the measurement model tested, but exploratory factor analysis identified a similar four-dimensional factor structure. Reliability and convergent and discriminant validity of the four factors were acceptable. The results also showed that social motives were related to alcohol use and heavy drinking; conformity motives were related to alcohol use and alcohol-related problems. Enhancement motives were the strongest correlates of alcohol use; coping motives were the strongest correlates of heavy drinking and alcohol-related problems. CONCLUSIONS/IMPORTANCE: The DMQ-R was a reliable and valid scale measuring four types of drinking motives among Chinese college students. Findings suggested that the motivational model of alcohol use may apply to studying college drinking in China.

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.

Factor analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

The purpose of this study was to test the psychometric properties of an enhanced Adult Epilepsy Self-Management Measurement Instrument (AESMMI). An instrument of 113 items, covering 10 a priori self-management domains, was generated through a multiphase process, based on a review of the literature, validated epilepsy and other chronic condition self-management scales and expert input. Reliability and exploratory factor analyses were conducted on data collected from 422 adults with epilepsy. The instrument was reduced to 65 items, converging on 11 factors: Health-care Communication, Coping, Treatment Management, Seizure Tracking, Social Support, Seizure Response, Wellness, Medication Adherence, Safety, Stress Management, and Proactivity. Exploratory factors supported the construct validity for 6 a priori domains, albeit with significant changes in the retained items or in their scope and 3 new factors. One a priori domain was split in 2 subscales pertaining to treatment. The configuration of the 11 factors provides additional insight into epilepsy self-management behaviors. Internal consistency reliability of the 65-item instrument was high (α=.935). Correlations with independent measures of health status, quality of life, depression, seizure severity, and life impact of epilepsy further validated the instrument. This instrument shows potential for use in research and clinical settings and for assessing intervention outcomes and self-management behaviors in adults with epilepsy.