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.

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.

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.

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.

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.

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.

Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

Epilepsy self-management is the total sum of steps that people perform to maximize seizure control, to minimize the impact of having a seizure disorder, and to maximize quality of life. As part of a phased approach to instrument development, we conducted descriptive analyses of data from epilepsy self-management items covering 10 domains of self-management gathered from 422 adults with epilepsy from multiple study sites. Participants most frequently reported performing sets of behaviors related to managing treatment and stigma, information seeking, managing symptoms, and communicating with providers. Behaviors reported with lower frequency were related to seeking social support and engaging in wellness behaviors. Significant differences for the domains were found for income, gender, and education levels but not for other different demographic variables. A subsequent analytic phase, reported in a companion article, will use factor analysis to identify and validate the subscale structure of the domains.

Unemployment and depression among emerging adults in 12 states, Behavioral Risk Factor Surveillance System, 2010.

INTRODUCTION: The high rate of unemployment among emerging adults (aged 18 to 25 years) is a public health concern. The risk of depression is higher among the unemployed than among the employed, but little is known about the relationship between unemployment and mental health among emerging adults. This secondary data analysis assessed the relationship between unemployment and depression among emerging adults. METHODS: Data from the 2010 Behavioral Risk Factor Surveillance System (BRFSS) were analyzed. Responses to the Patient Health Questionnaire-8 provided data about the prevalence of depression. Bivariate relationships were assessed using χ(2) tests, and multivariable adjusted odds ratios were calculated with logistic regressions. Sociodemographic variables were sex, race/ethnicity, marital status, and education. In addition, logistic regression models adjusted for health insurance status, disability, smoking, and body mass index. The analyses were completed using SAS 9.3 survey procedures to account for the complex sampling design. RESULTS: Almost 12% of emerging adults were depressed (PHQ-8 ≥10) and about 23% were unemployed. Significantly more unemployed than employed emerging adults were classified with depression. In the final model, the odds of depression were about 3 times higher for unemployed than employed emerging adults. CONCLUSION: The relationship between unemployment and depression is significant among emerging adults. With high rates of unemployment for this age group, this population may benefit from employment- and mental-health-focused interventions.

Exploring Donotion-related Knowledge Attitudes, Beliefs and Distrust Among African Americans.

Within the field of organ donation, multiple studies have shown differences in patterns of trust, however, it is unclear which elements are significantly related to donation decision making among African Americans. This study sought to disentangle the construct of trust by parceling out measures related to the healthcare system, the donation/allocation system, and the physician; and determine the relationship of these dimensions to attitudes toward organ and tissue donation. Cross-sectional survey data were gathered from 585 African American adults residing in the Atlanta metropolitan area. Results indicate that varying dimensions of trust function differently in their influence on attitudes toward donation. Our findings suggest that trust is critical to donation decision-making and should be measured with a multidimensional approach, particularly among racial/ethnic groups with complex histories with the healthcare system. This study underlines the need for a more tailored, individualized approach to promoting organ and tissue donation among African Americans. ACKNOWLEDGEMENTS: We also thank Rianot Amzat, Mohua Basu and Rhonda DeLaremore for their assistance with data collection, cleaning, entry, and analysis.

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 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.

Living donor transplant education for African American patients with end-stage renal disease.

CONTEXT: Despite numerous benefits of live donor kidney transplant (LDKT), patient-level barriers often prevent African Americans from considering LDKT. Educational interventions designed to address patient-level barriers may increase willingness among African American patients with end-stage renal disease to explore LDKT as a treatment option. OBJECTIVE: To assess the effectiveness of a culturally sensitive educational intervention called Living ACTS (About Choices in Transplantation and Sharing) that was designed to address patient-level barriers to LDKT among African American patients with end-stage renal disease. DESIGN/PARTICIPANTS: Patients were randomized to intervention (n = 136) or control (n = 132) groups. They completed baseline measures and then viewed either the Living ACTS or control video. Both groups then completed an immediate follow-up measure and a 6-month assessment administered via telephone. MAIN OUTCOME MEASURES: Self-reported knowledge about LDKT, willingness to talk to the patient's family about LDKT, and perceived benefits of LDKT were measured at 3 time points. RESULTS: At 6-month follow-up, intervention participants demonstrated a significantly greater increase in knowledge of LDKT than control participants (F2,229=3.08, P= .05). Intervention participants expressed greater willingness to talk to patients' families about LDKT than did control participants from baseline through 6-month follow-up (F1,230 = 7.11, P= .008). Finally, at immediate follow-up, intervention participants reported greater endorsement of the benefits of LDKT than did control participants (F2,223 = 14.27, P< .001); however, this effect had disappeared by the 6-month follow-up. CONCLUSIONS: Living ACTS is effective at increasing and maintaining knowledge about LDKT among African American patients with end-stage renal disease who are considering transplant.

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.

Understanding African American's religious beliefs and organ donation intentions.

African Americans are overrepresented on the organ transplant waiting list and underrepresented among organ and tissue donors. One of the most highly noted reasons for lack of donation is the perception that donation is contrary to religious beliefs. The purpose of this cross-sectional study is to explore the complexities of religion (beliefs, religiosity, and religious involvement) and its association with willingness to donate and the written expression of donation intentions. Findings from a sample of 505 African American participants suggest that religion is a multidimensional construct and results differ depending on how the construct is measured and operationalized.

Understanding the relationship between trust in health care and attitudes toward living donor transplant among African Americans with end-stage renal disease.

Transplantation is the favored therapy for patients with end-stage renal disease (ESRD). Unfortunately, demand for available organs far outpaces the supply. African Americans are disproportionately affected by the ever-widening gap between organ supply and demand. Additionally, structural, biological, and social factors contribute to feelings of unease some African Americans may feel regarding living donor transplant (LDT). The present research examines the relationship between trust in health care and attitudes toward LDT among African American ESRD patients. We hypothesized that lower trust in health care would be significantly associated with negative attitudes toward LDT, and that this relationship would be moderated by patient attitudes toward dialysis. Data were collected from August 2011 to April 2012 as part of a larger study. Measures included trust (of doctors, racial equity of treatment, and hospitals) and attitudes toward both LDT and dialysis. Bivariate analysis revealed that trust in one's doctor, hospital, and in racial equity in health care was significantly correlated with attitudes toward LDT (r = 0.265; r = 0.131; and r = 0.202, respectively). Additionally, attitudes toward dialysis moderated the relationships between Trust in Doctors/Attitudes toward LDT and Trust in Racial equity of treatment/Attitudes toward LDT. Findings suggest a strong relationship between trust in health care and attitudes toward LDT. These findings also shed light on how dialysis experiences are related to the relationship between trust in health care and attitudes toward LDT.

Project ACTS II: organ donation education for African American adults.

OBJECTIVE: Project ACTS "About Choices in Transplantation and Sharing" is a culturally sensitive intervention designed to address organ donation concerns among African American adults. Our study sought to evaluate the efficacy of two versions of the Project ACTS intervention and to determine whether reviewing materials in a group setting would be more effective at increasing participants' interest in organ and tissue donation than allowing participants to review the materials at home with friends and family. DESIGN: A pre-post simple factorial experimental design was used to assess differences between intervention package (Project ACTS I vs II) and mode of delivery (group vs take home). METHODS: Participants completed a baseline and 1-year follow-up assessment of donation-related knowledge, attitudes, and interest. MAIN OUTCOME MEASURES: A summed score that represents participants' interest in being recognized as an organ donor on their driver's license, via donor card, and by talking to family. RESULTS: From baseline to follow-up, participants increased their knowledge, attitudes, and interest in being recognized as an organ donor regardless of intervention package (Ps<.05). Regarding setting, participants who reviewed materials in a group setting demonstrated greater increase from baseline to follow-up in interest in organ donation (beta=.22, P<.01) and positive attitudes toward donation (beta=.22, P<.05) than those who were allowed to review materials at home with friends and family. CONCLUSION: Project ACTS I and II are equally efficacious; reviewing the intervention in a group setting may be necessary for low vested interest/high ambivalence health behaviors such as organ donation.