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1.
Epilepsy Behav ; 138: 109001, 2023 01.
Article in English | MEDLINE | ID: mdl-36495799

ABSTRACT

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.


Subject(s)
Epilepsy , Self-Management , Telemedicine , Humans , Cross-Sectional Studies , Epilepsy/therapy , Surveys and Questionnaires , Program Evaluation
2.
Epilepsy Behav ; 140: 109111, 2023 03.
Article in English | MEDLINE | ID: mdl-36804716

ABSTRACT

RATIONALE: The promotion of evidence-based self-management support for people living with chronic conditions such as epilepsy is a public health priority. Epilepsy self-management encompasses three general areas: (1) treatment management, (2) seizure management, and (3) lifestyle management. Interventions focusing on self-management have increased quality of life and adherence to treatment. This study assesses and synthesizes the Managing Epilepsy Well Network (MEWN) program implementation experiences using the RE-AIM framework. This research informs the quality and rigor of MEWN program dissemination and implementation efforts to assess whether these programs are being implemented and their scalability. METHODS: The study data were derived from a MEWN Self-management Program Survey conducted with currently active MEWN researchers through an online survey and review of program publications and archival documents. Survey data were obtained from either the principal investigator or study team for the UPLIFT, HOBSCOTCH, SMART, MINDSET, TIME, and PACES programs. The survey questionnaire included 6 sections consisting of 68 questions and focused on the RE-AIM dimensions and respondent characteristics. The RE-AIM dimensions included: (1) Reach, (2) Effectiveness, (3) Adoption (number of and type of adopting sites), (4) Implementation (retention rate, barriers to implementation), and (5) Maintenance. RESULTS: Across the MEWN programs, participation (44-120 individuals) and delivery methods (community, clinic, or asynchronous; group or individual) ranged with most programs predominantly reaching White or African American participants. Common program outcome measures included clinical outcomes (e.g., depression, quality of life, seizure frequency) and indicators of self-management behaviors (e.g., problem-solving; self-efficacy). Initial efficacy trials suggested programs were effective in changing some of their targeted outcomes (effectiveness). Most programs were implemented in clinical settings and several programs are being replicated or adapted to different geographical (e.g., urban, rural, suburban) or demographic (e.g., race, age) settings (adoption). Program delivery methods involved a mixture of program staff, peer educators, and researchers. Implementation enabling factors included partnerships with local epilepsy organizations and the inclusion of peer educators. Retention rates for all programs averaged 83.6%. Internal barriers included recruitment and lack of sufficient resources for participants. External barriers included clinical staff buy-in, staffing, and insufficient funding for support staff. Despite uncertain funding, all programs offered next steps to sustain their initiatives such as packaging their programs, initiating adoption with regional organizations, and supporting organizational readiness (maintenance). Dissemination efforts included partnering with other organizations, provision of training and technical assistance, and partnering with national organizations on grant opportunities to scale up existing programs. CONCLUSION: These data showcase the impact of the MEWN self-management interventions on health and quality of life. These programs are employing training, readiness assessment, technical assistance, and development of partnerships to increase program scalability. Finally, program adaptations are being conducted to expand the interventions to other populations to address health inequalities. The lessons learned are critical for other interventions attempting to increase the translation of their programs to other settings.


Subject(s)
Epilepsy , Self-Management , Humans , Quality of Life , Life Style , Epilepsy/therapy , Seizures
3.
Epilepsy Behav ; 131(Pt A): 108692, 2022 06.
Article in English | MEDLINE | ID: mdl-35526460

ABSTRACT

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.


Subject(s)
Epilepsy , Self-Management , Adult , Cross-Sectional Studies , Epilepsy/psychology , Epilepsy/therapy , Factor Analysis, Statistical , Humans , Psychometrics , Reproducibility of Results , Self-Management/psychology , Surveys and Questionnaires
4.
Dev Psychobiol ; 64(7): e22303, 2022 11.
Article in English | MEDLINE | ID: mdl-36282745

ABSTRACT

Parental emotion regulation plays a major role in parent-child interactions, and in turn, neural plasticity in children, particularly during sensitive developmental periods. However, little is known about how parental emotion dysregulation is associated with variation in children's brain structure, which was the goal of this study. Forty-five Black American mother-child dyads were recruited from an intergenerational trauma study; emotion regulation in mothers and their children (age 8-13 years) was assessed. Diffusion-weighted images were collected in children; deterministic tractography was used to reconstruct pathways of relevance to emotion regulation. Metrics of white matter connectivity [fractional anisotropy (FA), mean diffusivity (MD)] were extracted for pathways. Socio-economic variables were also included in statistical models. Maternal emotion dysregulation was the strongest predictor of child fornix MD (r = .35, p = .001), indicating that more severe emotion dysregulation in mothers corresponded with lower fornix connectivity in children. Maternal impulsivity was a strong predictor of child fornix MD (r = .51, p < .001). Maternal emotion dysregulation may adversely influence connectivity of the child.s fornix, a hippocampal-striatal pathway implicated in reward processes; these associations remained even after accounting for other socio-environmental factors. Dysregulated maternal emotions may uniquely impact children's adaptation to trauma/stress by affecting networks that support appetitive processing.


Subject(s)
Emotional Regulation , White Matter , Female , Humans , Child , Adolescent , White Matter/diagnostic imaging , Mothers/psychology , Emotions , Mother-Child Relations/psychology
5.
Epilepsy Behav ; 109: 107098, 2020 08.
Article in English | MEDLINE | ID: mdl-32376207

ABSTRACT

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.


Subject(s)
Black or African American/psychology , Epilepsy/psychology , Epilepsy/therapy , Self-Management/methods , Self-Management/psychology , Surveys and Questionnaires , Adaptation, Psychological/physiology , Adult , Anticonvulsants/therapeutic use , Cross-Sectional Studies , Epilepsy/epidemiology , Female , Humans , Male , Medication Adherence/psychology , Middle Aged , Quality of Life/psychology , Reproducibility of Results , Social Support , Young Adult
6.
Epilepsy Behav ; 103(Pt A): 106504, 2020 02.
Article in English | MEDLINE | ID: mdl-31648928

ABSTRACT

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.


Subject(s)
Cognitive Behavioral Therapy , Depression/therapy , Epilepsy/psychology , Epilepsy/therapy , Seizures/psychology , Seizures/therapy , Self-Management , Adult , Aged , Female , Humans , Male , Middle Aged , Mindfulness , Quality of Life , Young Adult
7.
Healthc Q ; 22(SP): 40-45, 2020 Feb.
Article in English | MEDLINE | ID: mdl-32049614

ABSTRACT

When presented with the opportunity to provide a commentary on this Special Issue of Healthcare Quarterly on patient safety, we thought it would be particularly powerful to bring together those with intimate lived experience of patient safety incidents. As such, this submission is being brought to you by two patients whose lives have been irrevocably altered by medical mishaps, along with a physician who has spent a considerable portion of his career advancing and integrating the patient voice on patient safety issues.


Subject(s)
Medical Errors/adverse effects , Patient Participation , Patient Safety , Physicians/psychology , Family , Humans , Medical Errors/psychology
8.
Epilepsy Behav ; 94: 301-306, 2019 05.
Article in English | MEDLINE | ID: mdl-30975571

ABSTRACT

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.


Subject(s)
Black or African American/ethnology , Databases, Factual , Depression/ethnology , Depressive Disorder/ethnology , Epilepsy/ethnology , Quality of Life , Adult , Comorbidity , Female , Humans , Male , Middle Aged , Self-Management
9.
Epilepsy Behav ; 81: 62-69, 2018 04.
Article in English | MEDLINE | ID: mdl-29494935

ABSTRACT

Mobile health app developers increasingly are interested in supporting the daily self-care of people with chronic conditions. The purpose of this study was to review mobile applications (apps) to promote epilepsy self-management. It investigates the following: 1) the available mobile apps for epilepsy, 2) how these apps support patient education and self-management (SM), and 3) their usefulness in supporting management of epilepsy. We conducted the review in Fall 2017 and assessed apps on the Apple App Store that related to the terms "epilepsy" and "seizure". Inclusion criteria included apps (adult and pediatric) that, as follows, were: 1) developed for patients or the community; 2) made available in English, and 3) less than $5.00. Exclusion criteria included apps that were designed for dissemination of publications, focused on healthcare providers, or were available in other languages. The search resulted in 149 apps, of which 20 met the selection criteria. A team reviewed each app in terms of three sets of criteria: 1) epilepsy-specific descriptions and SM categories employed by the apps and 2) Mobile App Rating Scale (MARS) subdomain scores for reviewing engagement, functionality, esthetics, and information; and 3) behavioral change techniques. Most apps were for adults and free. Common SM domains for the apps were treatment, seizure tracking, response, and safety. A number of epilepsy apps existed, but many offered similar functionalities and incorporated few SM domains. The findings underline the need for mobile apps to cover broader domains of SM and behavioral change techniques and to be evaluated for outcomes.


Subject(s)
Epilepsy/therapy , Mobile Applications , Self Care/methods , Self-Management/methods , Chronic Disease , Humans , Patient Satisfaction , Seizures/therapy
10.
Death Stud ; 40(2): 80-7, 2016.
Article in English | MEDLINE | ID: mdl-26207438

ABSTRACT

The purpose of this qualitative study was to understand how college students have responded, at any point in their lifetime, to a suicidal friend or family member. College students completed an online survey in which they described, in their own words, what they have done when a friend or family member disclosed being suicidal. These responses included providing social support, information, telling someone, and crisis support. Future studies are needed to determine how common these responses are, identify factors that predict certain responses, and examine the impact responding to a suicidal person can have on college student wellbeing.


Subject(s)
Helping Behavior , Students/psychology , Suicidal Ideation , Adolescent , Adult , Family/psychology , Female , Friends/psychology , Help-Seeking Behavior , Humans , Male , Qualitative Research , Social Support , Universities , Young Adult
11.
Epilepsy Behav ; 53: 1-9, 2015 Dec.
Article in English | MEDLINE | ID: mdl-26515151

ABSTRACT

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.


Subject(s)
Epilepsy/psychology , Interpersonal Relations , Quality of Life , Seizures/psychology , Adult , Chronic Disease , Epilepsy/therapy , Female , Humans , Interviews as Topic , Qualitative Research , Self Care , Sickness Impact Profile
12.
Epilepsy Behav ; 50: 184-9, 2015 Sep.
Article in English | MEDLINE | ID: mdl-26264465

ABSTRACT

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.


Subject(s)
Disease Management , Epilepsy/therapy , Self Care/standards , Surveys and Questionnaires/standards , Adaptation, Psychological , Adult , Epilepsy/psychology , Factor Analysis, Statistical , Female , Health Status , Humans , Male , Medication Adherence/psychology , Middle Aged , Quality of Life/psychology , Reproducibility of Results , Self Care/methods , Self Care/psychology , Social Support
13.
Epilepsy Behav ; 50: 172-83, 2015 Sep.
Article in English | MEDLINE | ID: mdl-26303037

ABSTRACT

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.


Subject(s)
Disease Management , Epilepsy/psychology , Epilepsy/therapy , Quality of Life/psychology , Self Care/psychology , Self Care/trends , Adolescent , Adult , Aged , Aged, 80 and over , Female , Health Behavior , Humans , Male , Middle Aged , Self Care/methods , Social Stigma , Social Support , Surveys and Questionnaires , Young Adult
14.
Prev Chronic Dis ; 12: E38, 2015 Mar 19.
Article in English | MEDLINE | ID: mdl-25789499

ABSTRACT

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.


Subject(s)
Depression/epidemiology , Employment/statistics & numerical data , Insurance Coverage/statistics & numerical data , Unemployment/statistics & numerical data , Adolescent , Adult , Behavioral Risk Factor Surveillance System , Body Mass Index , Case-Control Studies , Cross-Sectional Studies , Data Interpretation, Statistical , Depression/etiology , Disability Evaluation , Employment/psychology , Ethnicity/psychology , Ethnicity/statistics & numerical data , Female , Humans , Male , Puerto Rico/epidemiology , Smoking/epidemiology , Socioeconomic Factors , Surveys and Questionnaires , Unemployment/psychology , United States/epidemiology , United States Virgin Islands/epidemiology , Young Adult
15.
Epilepsy Behav ; 31: 152-9, 2014 Feb.
Article in English | MEDLINE | ID: mdl-24413284

ABSTRACT

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.


Subject(s)
Epilepsy/psychology , Epilepsy/therapy , Self Care/methods , Adolescent , Adult , Aged , Depression/etiology , Epilepsy/complications , Female , Humans , Male , Middle Aged , Social Support , Young Adult
16.
Qual Health Res ; 24(11): 1553-66, 2014 Nov.
Article in English | MEDLINE | ID: mdl-25192759

ABSTRACT

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.


Subject(s)
Epilepsy/psychology , Self Care/psychology , Social Support , Adult , Female , Grounded Theory , Humans , Interpersonal Relations , Interviews as Topic , Male , Middle Aged , Young Adult
17.
J Investig Med ; 71(6): 577-585, 2023 08.
Article in English | MEDLINE | ID: mdl-37085987

ABSTRACT

To provide a foundation for mentoring, junior faculty participated in a mentor training workshop informed by the Mentoring Clinical and Translational Researchers curriculum. The goal was to develop skills and behaviors that engender more rewarding and inclusive mentoring practices. Attendees responded to baseline and follow-up surveys assessing perceived mentoring skills. Follow-up surveys included closed- and open-ended questions about the value and satisfaction of the training, and intended behavior changes. Junior faculty respondents (n = 39) reported significantly higher overall mentoring skills after the training (t = -2.6, p = 0.012) with a medium effect size (Cohen's D = 0.59). Domains with statistically significant improvement from baseline to follow-up included aligning mentor-mentee expectations and assessing understanding. Thirty-eighty (97%) found the training valuable, and 32 (82%) indicated they would change mentoring-related behaviors because of the training. Intended behavior changes described in open-ended responses aligned with mentoring skills assessed (e.g., aligning expectations). An additional competency domain of evaluating mentoring relationships was also described. A mentor training workshop for junior faculty appeared to contribute to changes in mentoring skills and intended behaviors. Mentor training has the potential to enhance mentorship, which is critical to strengthening a diverse pipeline of clinical and translational science researchers.


Subject(s)
Mentors , Translational Science, Biomedical , Humans , Georgia , Program Evaluation , Faculty
18.
Curr Oncol ; 30(11): 9392-9405, 2023 Oct 24.
Article in English | MEDLINE | ID: mdl-37999100

ABSTRACT

The second Early-Age-Onset Colorectal Cancer Symposium, convened in October 2022, sought solutions to the barriers to early detection and care for colorectal cancer in Canada. This meeting built on a previous symposium, held in 2021 and reported in this journal. Early-age-onset colorectal cancer (EAOCRC) affects increasing numbers of people under the age of 50 in Canada and throughout the developed world. Two main themes emerged from the meeting: the importance of timely detection, and the need for a tailored approach to the care of EAOCRC. Early detection is crucial, especially in light of the later stage at diagnosis and unique tumour characteristics. Symposium participants were strongly in favour of reducing the age of eligibility for screening from 50 to 45, and promoting the development of non-invasive screening techniques such as testing for circulating tumour DNA and biomarkers. Leading approaches to care were described and discussed, which meet the unique treatment needs of younger CRC patients. Multidisciplinary practices within and outside Canada address such factors as fertility, family roles, education, careers and financial responsibilities. These models can be applied in treatment centres across the country.


Subject(s)
Colorectal Neoplasms , Humans , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/therapy , Colorectal Neoplasms/genetics , Biomarkers , Canada
19.
Pilot Feasibility Stud ; 8(1): 107, 2022 May 21.
Article in English | MEDLINE | ID: mdl-35597972

ABSTRACT

BACKGROUND: African American (AA) adults are 60% more likely to be diagnosed with diabetes mellitus (DM) and experience more complications than non-Hispanic White adults. Cognitive behavioral therapy (CBT) has shown to be an effective modality for helping patients improve health behaviors and regulate emotional states. Motivational interviewing (MI) addresses participant engagement and motivation. Therefore, MI was combined with CBT as an approach to the process of learning using CBT skills to promote healthy lifestyle choices. We aimed to assess the effects of a culturally tailored CBT/MI intervention on glycemic control in AA participants and understand their perspectives, attitudes, and experiences while participating in this intervention. METHODS: Using a randomized, parallel design pilot study (web-based group vs in-person group), 20 participants aged ≥ 18 years, identifying as AA and having a glycosylated hemoglobin (HbA1c) > 8%, were recruited. A CBT/MI intervention was administered in six sessions over 3 months. Participants completed baseline and follow-up assessments on measures for diabetes control (HbA1c), self-efficacy, generalized anxiety, depression, perceived stress, health-related quality of life, and cognitive ability. Post-CBT/MI intervention focus groups were conducted to determine patient perspectives regarding the intervention. RESULTS: Fourteen participants completed the study, their mean HbA1c improved from 10.0 to 8.9% (t(26) = 0.5, p-value = 0.06). The Diabetes Distress Scale demonstrated decreased distress overall (t(26) = 2.6; p-value = 0.02). The Generalized Anxiety Disorder Scale demonstrated decreased generalized anxiety for all participants (t(26) = 2.2; p = 0.04). Themes identified in focus groups included (1) intervention group social support through information sharing, (2) mental health and personal identities in diabetes understanding and management, and (3) receptivity to CBT/MI intervention positively impacts self-efficacy through improved health literacy. CONCLUSION: This group-based, culturally tailored CBT/MI intervention for type 2 DM care was positively received by AA participants and helped improve diabetes control, as demonstrated by the change in HbA1c. There were additional benefits of social support through group interactions and a stronger sense of self-efficacy due to health education. A comprehensive treatment plan using a CBT/MI intervention may be useful in promoting healthy diabetes self-management. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03562767 . Registered on 19 June 2018.

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J Atten Disord ; 12(4): 341-52, 2009 Jan.
Article in English | MEDLINE | ID: mdl-18596299

ABSTRACT

OBJECTIVE: Investigated the relationship between selective and sustained attention and social behavior in children with different degrees of attentional disturbance. METHOD: Participants were 101 6- to 12-year-old children, including 18 who were diagnosed with Attention Deficit Hyperactivity Disorder (AD/HD), 61 who were clinically referred for attentional difficulties but did not meet criteria for ADHD, and 22 typically developing children. Two groups of children completed either a sustained attention task or a selective attention task. Task performance was compared with teacher reported social behavior. RESULTS: In support of the investigator's hypothesis poor performance on the sustained attention task correlated with social behavior problems. However, contrary to expectation, poor performance on the selective attention task was not correlated with teacher reported social problems. Results are discussed with specific emphasis on the need to identify underlying cognitive contributions to social dysfunction. CONCLUSION: The findings support a growing body of research highlighting the negative relationship between inattention and social functioning.


Subject(s)
Attention Deficit Disorder with Hyperactivity/diagnosis , Social Behavior , Child , Diagnostic and Statistical Manual of Mental Disorders , Female , Humans , Male , Neuropsychological Tests , Predictive Value of Tests , Prospective Studies , Severity of Illness Index , Visual Perception
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