Depression commonly co-occurs in people with epilepsy (PWE). Reducing depression in PWE may contribute to improved quality of life and outcomes. Project UPLIFT, a distance-delivered, mindfulness-based cognitive therapy program has reduced depressive symptoms among PWE. Little is known about the acceptability of the program among African Americans with epilepsy. Thus, we conducted a formative evaluation to assess African Americans' cultural adaptation needs and to identify any associated required changes. METHODS:Focus groups of African Americans with epilepsy and support persons to African Americans with epilepsy were conducted to elicit suggestions for program adaptation. Participants received the intervention materials prior to the focus group. Using a semi-structured guide, we asked about their perceptions of Project UPLIFT. The focus groups were recorded and transcribed. We used thematic analysis to explore acceptability of Project UPLIFT for African Americans with epilepsy. RESULTS:There were 6 focus groups with 4 of PWE (n = 22) and 2 of support persons (n = 13). Participants affirmed the acceptability and perceived effectiveness of Project UPLIFT. With affirming acceptability, they liked aspects of the program and suggested minimal changes. Participants were willing to try the activities and identified the content as true to their experience. With perceived effectiveness, they described variations in experiences and highlighted the value of group-based delivery. CONCLUSIONS:Project UPLIFT, as presented in previous trials, appears acceptable, and of interest, to African Americans with epilepsy. These results support testing the efficacy of this intervention in reducing depression among African Americans with epilepsy.
Background Despite high rates of anxiety and depression, research regarding the effect of psychological interventions on people with CF (pwCF) is limited. We evaluated the impact of UPLIFT (Using Practice and Learning to Increase Favorable Thoughts), a group telehealth intervention using mindfulness-based cognitive behavioral therapy (MBCT), on symptoms of anxiety and depression in pwCF. Methods This multicenter randomized trial compared changes in symptoms of anxiety and/or depression in adult pwCF who participated in the 8-week UPLIFT intervention to a treatment-as-usual (TAU) group. Follow up assessments occurred immediately after and 6- and 12-months post-intervention. Primary outcome measures were change in Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder (GAD-7) scores modeled in separate linear mixed-effects models. Results Sixty-six pwCF participated. At baseline, 43 (65.15%) had some minimal symptoms of depression (PHQ-9≥5) and 44 (66.67%) had some minimal symptoms of anxiety (GAD-7≥5). During the 12 month follow up period, the overall change in PHQ-9 was greater in the UPLIFT group compared to TAU (p = .049). Analysis of individual time points showed a statistically significant difference between groups in change from baseline immediately post-treatment (-2.321, SD 0.684 vs 0.362, SD 0.656, p = .005); differences persisted but were not statistically significant at 6 and 12 months. Similar trends for changes in GAD-7 were non-significant. Conclusions Participation in UPLIFT, a group telehealth intervention using MBCT, provides short-term improvement in symptoms of depression, as measured by changes in PHQ9. Improvement in symptoms of anxiety were suggested but could not be statistically confirmed.
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, adop-tion, 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 train-ing 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 recruit-ment (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 mainte-nance 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 dissem-ination trainees. Implementation benefits from program champions, strong partnerships, and sustained funding. Continued refinement of implementation support, such as developing a sustained referral sys-tem, maintaining relationships with trainees, supporting evaluation activities, and exploring opportuni-ties for program updates to further enhance adoption, implementation, and maintenance.(c) 2022 Elsevier Inc. All rights reserved.
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.(c) 2022 Elsevier Inc. All rights reserved.
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. (C) 2021 Elsevier Inc. All rights reserved.
•This is the first published use of a realist evaluation approach to identify underlying causal mechanisms of a chronic-care treatment model implemented in a low- or middle-income country.•This paper focuses on context as an implementation leverage point that enables the transferability of integrated diabetes and depression care models to alternative care settings in India and other low-resource settings.•Findings from this evaluation highlight the resource and training gaps that hinder the implementation and sustainability of a multi-component, team-based intervention aimed at integrating depression treatment into routine diabetes care.
Unemployed and underemployed emerging adults (EAs) are at increased risk for depression. However, limited research has examined resilience and coping in this population. This study tested the resilience process by examining whether coping processes mediate the relationship between perceived stress and depression among unemployed and underemployed EAs. Data from 193 unemployed and underemployed EAs (ages 18–25) were collected through an online questionnaire. Path analysis tested the mediation model. Post hoc moderation analyses tested whether coping buffered the impact of stress on depression. The sample was diverse, consisting of Black (37%), White (37%), and other race/ethnicity (26%) participants. The proposed mediating model did not fit the data well. Of four interaction terms tested, one was significant (Perceived Stress × Coping Self-Efficacy [CSE]; p = .043). As CSE increased, the relationship between perceived stress and depression decreased. The interaction results suggest that CSE buffers the relationship between perceived stress and depression.
INTRODUCTIONPerinatal depression occurs in 12% to 18% of childbearing women. Telehealth is a promising platform for delivering perinatal mental health care, particularly during a pandemic when in-person services have been significantly curtailed. However, there is little research to document the feasibility of telehealth to address perinatal depression. This pilot study evaluated the feasibility and preliminary results of an 8-week facilitated group videoconference intervention.METHODSThe study enrolled pregnant and postpartum women into an 8-week group mindfulness-based cognitive behavioral intervention, delivered via videoconference platform. Women receiving care at outpatient clinics who either screened positive for perinatal depression symptoms or had risk factors predictive of perinatal depression were invited to participate. Women attended weekly one-hour group sessions using their own electronic device and completed the Edinburgh Postnatal Depression Scale (EPDS) at several time points. Session attendance and survey completion rates were evaluated.RESULTSA total of 47 women enrolled (8 postpartum; 39 prenatal) into groups of 4 to 6. Twenty-four (51.1%) women were currently experiencing mild to moderate perinatal depression symptoms (EPDS score of 10-20), whereas 23 (48.9%) women had EPDS scores less than 10 but were at high risk for developing perinatal depression due to health history and significant life events. Seventy percent of women attended at least 5 of the 8 sessions. Trajectories of EPDS measures were promising (ie, downward among those with current perinatal depression symptoms and stable among those at high risk for developing perinatal depression).DISCUSSIONThese observational results are promising, suggesting further study of effectiveness for women with symptoms of perinatal depression, as well as for women at high risk for developing perinatal depression. Randomized trials could evaluate the effectiveness of the intervention, compared with standard of care approaches. Telehealth interventions can be tailored to meet the needs of different communities, and increase access to care, regardless of where women live or inability to receive in-person services.
•This study was a cross-sectional survey of African American adults with epilepsy•Sixty percent of African Americans PWE had visited a neurologist in the past year•Participants more frequently conducted behaviors in the areas of proactivity, medication adherence and health communications•They performed behaviors related to treatment, stress management, and safety less frequently
Abstract 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 2016-17, in-depth interviews were conducted with 62 patients receiving the INDEPENDENT care model across two clinics in India. Using a realist evaluationapproach, 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.
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 (similar to 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 32 in the Project UPLIFT group, but increased by 23 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 22 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. (C) 2019 Elsevier Inc. All rights reserved.
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.
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.
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.
Introduction The Department of Veterans Affairs (VA) provides health care to approximately 300,000 patients with dementia. Recognizing the critical role caregivers play in veterans’ health, the Cognitive Disorders Specialty Care Education Center of Excellence (COE) at the Atlanta VA Health Care System implemented a suite of caregiver support services, including formal programs and resource linkages. We evaluated the effectiveness of these services and identified caregiver-perceived gaps in them. Methods We conducted 11 semistructured interviews from November 2016 through February 2017 with caregivers of veterans seen in the COE who had participated in support services. After coding transcripts, we established a codebook of 9 major themes and conducted a thematic analysis of all transcripts. Results Caregivers spoke positively of COE caregiver services that offered information on dementia, social support, an emphasis on caregiver well-being and self-efficacy, and methods for behavioral change. Gaps identified included the need for additional dementia information and practical support in such matters as advanced directives and eligibility for VA benefits. Conclusion Our findings will inform future improvements to COE caregiver support services, such as an expansion of COE’s caregiver educational content and capacity building of existing components such as resource referrals. These results also highlight opportunities for COE to interface with internal and external organizations to enhance existing caregiver services.
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.
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.