Longitudinal feasibility of MINDSET: A clinic decision aid for epilepsy self-management

Begley, Charles E.; Shegog, Ross; Harding, Angelique; Goldsmith, Corey E.; Hope, Omotola A; Newmark, Michael

doi:10.1016/j.yebeh.2014.12.031

Cited by 20 publications

(19 citation statements)

References 16 publications

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“…We identified 13 studies addressing facilitators and barriers to implementing self-management interventions for persons with epilepsy ( Fig. 1) [22,[40][41][42][43][47][48][49][50][51][52][53][54]. Study designs in this analysis included semi-structured interview (n = 5) [22,[40][41][42][43]; cross-sectional survey (n = 5) [47,48,50,53,54]; longitudinal survey (n = 1) [52], mixed-methods including group semi-structured interview, cross-sectional survey, and records review (n = 1) [49], and a discrete choice experiment (n = 1) [51].…”

Section: Resultsmentioning

confidence: 99%

“…1) [22,[40][41][42][43][47][48][49][50][51][52][53][54]. Study designs in this analysis included semi-structured interview (n = 5) [22,[40][41][42][43]; cross-sectional survey (n = 5) [47,48,50,53,54]; longitudinal survey (n = 1) [52], mixed-methods including group semi-structured interview, cross-sectional survey, and records review (n = 1) [49], and a discrete choice experiment (n = 1) [51]. Study respondents included patients with epilepsy, caregivers, and health care clinicians together [42,49,[52][53][54], patients and caregivers only [22,40,41,43,47,48,51], and health care clinicians [50].…”

Section: Resultsmentioning

confidence: 99%

“…At the program level, facilitators included involving family members in the intervention [49], using an empowerment approach to help the patient develop self-management skills [41,54], and the format of the intervention (e.g., group format that included both the patient and caregiver) [42]. Additional program level factors include the ability to personalize materials to each patient [42,48,54], the availability of written materials [41,42,52], the ability to interact with a group [22,49], the provision of peer support [22,49], and the length and duration of the intervention sessions [22,49]. At the site/system level, facilitators included developing intervention materials using uniform program standards to ensure program fidelity across intervention sites [42].…”

Section: Intervention Componentsmentioning

confidence: 99%

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Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

et al. 2020

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Background: Epilepsy affects nearly 50 million people worldwide. Self-management is critical for individuals with epilepsy in order to maintain optimal physical, cognitive, and emotional health. Implementing and adopting a selfmanagement program requires considering many factors at the person, program, and systems levels. We conducted a systematic review of qualitative and mixed-methods studies to identify facilitators and barriers that impact implementation and adoption of self-management programs for adults with epilepsy. Methods: We used established systematic review methodologies for qualitative and mixed-methods studies. We included studies addressing facilitators (i.e., factors that aided) or barriers (i.e., factors that impeded) to implementation and adoption of self-management interventions for adults with epilepsy. We conducted a narrative thematic synthesis to identify facilitators and barriers. Results: The literature search identified 2700 citations; 13 studies met eligibility criteria. Our synthesis identified five themes that categorize facilitators and barriers to successful implementation epilepsy self-management: (1) relevance, intervention content that facilitates acquisition of self-management skills; (2) personalization, intervention components that account for the individual's social, physical, and environmental characteristics; (3) intervention components, components and dosing of the intervention; (4) technology considerations, considerations that account for individual's use, familiarity with, and ownership of technology; and (5) clinician interventionist, role and preparation of the individual who leads intervention. We identified facilitators in 11 of the 13 studies and barriers in 11 of the 13 studies and classified these by social-ecological level (i.e., patient/caregiver, program, site/system).

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Intervention Componentsmentioning

confidence: 99%

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Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

et al. 2020

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“…This could then be followed up with structured coaching by phone to facilitate self-management goal attainment. Currently NTHP are being trained at the University of Texas to help adults with epilepsy use MINDSET (Management and Information Decision Support for Epilepsy Tool), another promising MEW Network intervention designed to facilitate self-management assessment and the selection of goals and strategies for improvement [59]. In this case, the NTHPs follow-up with phone calls to check in on patients’ progress and to provide supportive coaching and access to informational support, if necessary.…”

Section: How Can Self-management Techniques Be Put Into Your Practmentioning

confidence: 99%

Self-management in epilepsy: Why and how you should incorporate self-management in your practice

Helmers

Kobau

Sajatovic

et al. 2017

Epilepsy & Behavior

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“…A tablet-based decision support system is being tested to assist clinicians in assessing patient self-management behaviors and setting goals for improvement (MINDSET). 15 In all studies, input from PWE or caregivers is solicited to produce programs that integrate patient cultural norms to maximize their appeal, usefulness, and impact. Associated research activities include continued validation of a new epilepsy self-management instrument and an integrated database initiative that will facilitate aggregate secondary data analysis.…”

Section: New Interventions and Adaptation For Vulnerable Groupsmentioning

confidence: 99%

The Managing Epilepsy Well Network:

Sajatovic

Jobst

Shegog

et al. 2017

American Journal of Preventive Medicine

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Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003), and a 2012 Institute of Medicine Report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention (CDC) translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people’s homes, healthcare providers’ offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline which spans efficacy, effectiveness and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research Network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 41 scientific journal articles, 2 study reports, 7 book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation (EF), state EF affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

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Longitudinal feasibility of MINDSET: A clinic decision aid for epilepsy self-management

Cited by 20 publications

References 16 publications

Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

Self-management in epilepsy: Why and how you should incorporate self-management in your practice

The Managing Epilepsy Well Network:

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