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

Abstract

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 self-management 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).

Conclusion

Identification of facilitators and barriers at multiple levels provides insight into disease-specific factors that influence implementation and adoption of self-management programs for individuals with epilepsy. Our findings indicate that involving individuals with epilepsy and their caregivers in intervention development, and then tailoring intervention content during the intervention, can help ensure the content is relevant to intervention participants. Our findings also indicate the role of the clinician (i.e., the individual who provides self-management education) is important to intervention implementation, and key issues with clinicians were identified as barriers and opportunities for improvement. Overall, our findings have practical value for those seeking to implement and adopt self-management interventions for epilepsy and other chronic illnesses.

Systematic review registration

PROSPERO registration number is CRD42018098604.

Department

Description

Provenance

Subjects

Epilepsy, Qualitative research, Self-management

Citation

Published Version (Please cite this version)

10.1186/s13643-020-01322-9

Publication Info

Lewinski, Allison A, Abigail Shapiro, Jennifer M Gierisch, Karen M Goldstein, Dan V Blalock, Matthew W Luedke, Adelaide M Gordon, Hayden B Bosworth, et al. (2020). Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods. Systematic reviews, 9(1). p. 92. 10.1186/s13643-020-01322-9 Retrieved from https://hdl.handle.net/10161/22412.

This is constructed from limited available data and may be imprecise. To cite this article, please review & use the official citation provided by the journal.

Scholars@Duke

Lewinski

Allison A. Lewinski

Associate Research Professor in the School of Nursing

I am a health services researcher and implementation scientist with a joint appointment at the Duke University School of Nursing (DUSON) and the Durham Veterans Affairs Health Care System (VHA). My expertise spans diabetes distress, qualitative research methods, and virtual care delivery (including telehealth and digital health).

My research examines how virtual care interventions can reduce distress, improve self-management, expand access to evidence-based care, and enhance patient and population health outcomes. I focus on patient-, provider-, and system-level factors that influence the use and effectiveness of virtual care. This work has been funded by competitive grants, published in high-impact journals, presented at national conferences, and used to inform health system decision-making. I am frequently sought by colleagues locally and nationally for expertise in diabetes distress, qualitative methods, and virtual care strategies for grants, projects, and manuscripts.

I strive to improve outcomes for individuals with chronic illness by developing equitable, sustainable virtual care solutions and evaluating their implementation. To optimize these interventions, I apply qualitative and implementation science approaches to ensure alignment among patient needs, care modalities, disease states, and social contexts. My work addresses critical questions: for whom and for what purposes are these interventions effective, in which contexts, and at what points in the care continuum. Ultimately, my research advances the implementation and adoption of virtual care to reduce psychosocial distress and improve health outcomes through patient-clinician interactions and system-level innovations.

Gierisch

Jennifer M. Gierisch

Associate Professor in Population Health Sciences

Jennifer Gierisch, PhD,  is behavioral scientist and health services researcher. She is an Associate Professor in the Department of Population Heath Sciences and the Department of Medicine at Duke University. She is a core investigator with the Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT)  where she serves as the leader of the Partnered Research Methods Core (PRESTO)  and Director of the VA OAA Health Services Research Postdoctoral Fellowship. Dr. Gierisch also is the Co-Director of the Evidence Synthesis Program (VA ESP) at the Durham Veteran Affairs Health Care System. She also served as a faculty director of the Duke Clinical Translational Science Institute's  Community Engaged Research Initiative (CeRi) for five years

Dr. Gierisch’s research focuses on three overarching areas: 1) behavioral research on the psychosocial factors that influence appropriate uptake and maintenance of complex health behaviors (eg., weight management, smoking cessation, cancer screening); 2) evidence synthesis on key health and healthcare topics to enhance uptake of evidence-based interventions to improve patient and health system outcomes; and 3) participatory and  community engaged research approaches.

Area of expertise: health behavior, community-engaged research, evidence synthesis, intervention development,  qualitative research

Goldstein

Karen M. Goldstein

Associate Professor of Medicine

Dr. Goldstein's research interests include women's health, cardiovascular risk reduction, evidence synthesis methodology and peer support.

Blalock

Daniel Blalock

Medical Associate Professor in the Department of Psychiatry and Behavioral Sciences

I am a research scientist and Licensed Clinical Psychologist with a background in health services research, clinical psychology, and experimental psychology. My research interests include 1) the evaluation of current integrated behavioral health settings in health care systems to optimize future implementation efforts, 2) the development of novel integrated behavioral health strategies tailored to specific populations and healthcare system needs, 3) broad processes of behavior change and self-regulation, and 4) psychometric measurement of patient reported outcomes and research methods/statistics.

These interests have taken the form of specific research endeavors involving: a) large nonrandomized investigations of electronic health records data, b) development and evaluation of telehealth interventions to improve self-management of mental and physical health behaviors, and c) evaluation of patient-reported outcomes through telehealth modalities and in primary care, specialty care, and higher level of care settings.

To date, the content domains of most of my research have involved substance use (specifically alcohol, opioids, and tobacco), health behaviors (specifically medication adherence), mental health (specifically anxiety, depression, PTSD, and eating disorders), and health services utilization.

Luedke

Matthew William Luedke

Associate Professor of Neurology

I have diverse research interests and collaborations.  Clinical research interests include epilepsy quality-of-life interventions and therapeutics and acute care neurological issues like post-cardiac arrest management and quality-of-care issues.  I work with the Duke hyperbaric chamber team on clinical neurophysiological monitoring of ketone-related research.  

Drake

Connor David Drake

Assistant Professor in Population Health Sciences

Connor Drake is a health services researcher and implementation scientist. His research interests are at the intersection of primary care, population health management, social determinants of health, chronic illness care redesign, and virtual care. He has experience with policy analysis, electronic health record data, mixed and multi methods, community engaged research, and implementation and dissemination methods. Dr. Drake's research projects include leveraging telemedicine and other clinical informatics to improve chronic illness care and population health management; developing and implementing behavioral interventions and 'whole-person' care models for patients with cardiovascular disease and metabolic disorders; and studying social care interventions to respond to social risk factors by promoting food security, housing stability, and social support to improve health outcomes.

Dr. Drake currently studies care models that feature food and nutrition security interventions (i.e., ‘Food is Medicine’) for patients at risk of food insecurity and at heightened cardiometabolic risk. This includes developing and testing scalable models for integrating food-based interventions—such as produce prescriptions—into clinical settings, investigating the relationships between food security and cardiometabolic health outcomes, and implementing social needs screening and response programs that promotes food security alongside other social determinants of health. Dr. Drake's research emphasizes implementation science approaches to understand how these ‘Food is Medicine’ programs can be best integrated and scaled across diverse healthcare settings, particularly in Veteran care settings and safety-net systems serving vulnerable populations.

Husain

Aatif Mairaj Husain

Professor of Neurology
Tran

Tung T Tran

Assistant Professor of Neurology
Williams

John Wiley Williams

Professor Emeritus of Medicine

John Williams, MD, MHS, is a Professor of Medicine at Duke University Medical Center and a past recipient of VA Health Services Career Development and a Robert Wood Johnson Foundation Generalist Faculty Scholar Awards. He received his bachelor and MD degrees from the University of North Carolina. Dr. Williams completed residency training at the University of Iowa and a research fellowship at Duke University. He is a primary care internist who is trained in epidemiology, biostatistics, and literature synthesis. Dr. Williams’ topical interests include depression, mental health services, dementia and implementation of best practices. He is a medical editor for the Patient Centered Outcomes Research Institute and the Evidence-base Practice Program. Dr. Williams is Senior Science Advisor to the Durham VA Evidence Synthesis Program and has led numerous systematic reviews, many focusing on mental health services. Dr. Williams is board certified in Internal Medicine and active in clinical practice and resident physician education at the Durham VAMC.


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