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

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

Assistant Research Professor in the School of Nursing

As a nurse scientist and health services researcher, with a joint appointment between the Duke University School of Nursing (DUSON) and the Durham Veterans Affairs Health Care System (VHA), I have acquired expertise in the areas of diabetes distress, qualitative research methods, and virtual care (e.g., telehealth, digital health) as a method of care delivery. My research focuses on the current and potential ability of virtual care interventions to reduce distress, improve self-management, increase access to evidence-based care delivery, and improve patient and population health outcomes. My collaborative and interdisciplinary research focuses on how patient-, provider-, and system-level factors influence virtual care use and outcomes. As evidence of its growing significance and impact at DUSON and the VHA, my work has been well funded, published in high-impact journals, presented at select conferences, and used to guide health system decision-making. I am a sought-after teacher and mentor because I connect my research interests to teaching students and mentees rigorous and systematic research approaches. I am frequently asked by local and national colleagues to provide guidance on distress, qualitative research methods, and virtual care approaches used in grants, projects, and manuscripts.  

My research contributions have focused on alleviating psychosocial distress, developing and implementing multi-level virtual care interventions, and enhancing qualitative methods. As a staff nurse, I witnessed the psychosocial distress of patients who experience challenges in obtaining care which led to my interest in diabetes distress. I aspire and work to improve health outcomes for individuals with chronic illness by developing equitable and sustainable multi-level virtual care interventions and assessing their implementation and adaptation. Virtual care describes any remote interaction between a patient and/or members of their care team. To achieve these goals, I use qualitative methods and implementation science approaches to enhance alignment between patient, modality, disease state, and social and environmental context; my collective assessments address for whom and what purposes, in what situations and contexts, when in a disease course or clinical activity, and in what specific ways such interventions are effective. My focus on the uptake and adoption of virtual care to address psychosocial distress considers interactions with patients, between patients and clinicians, and within health care systems and the larger population.

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

Associate Consulting Professor in the Department of Psychiatry and Behavioral Sciences

I am a behavioral health researcher with a background in Clinical Psychology and Experimental Psychology.  My research interests include broad processes of behavior change and self-regulation as well as psychometric measurement and research methods/statistics.  My specific research endeavors include 1) the measurement and behavior change applicability of constructs related to self-control, 2) measurement and interventions to improve self-regulatory health behaviors including medication adherence and substance use, and 3) measure development and psychometrics as related to self-reported and patient-reported outcomes.

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.  

Bosworth

Hayden Barry Bosworth

Professor in Population Health Sciences

Dr. Bosworth is a health services researcher and Deputy Director of the Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT)  at the Durham VA Medical Center. He is also Vice Chair of Education and Professor of Population Health Sciences. He is also a Professor of Medicine, Psychiatry, and Nursing at Duke University Medical Center and Adjunct Professor in Health Policy and Administration at the School of Public Health at the University of North Carolina at Chapel Hill. His research interests comprise three overarching areas of research: 1) clinical research that provides knowledge for improving patients’ treatment adherence and self-management in chronic care; 2) translation research to improve access to quality of care; and 3) eliminate health care disparities. 

Dr. Bosworth is the recipient of an American Heart Association established investigator award, the 2013 VA Undersecretary Award for Outstanding Achievement in Health Services Research (The annual award is the highest honor for VA health services researchers), and a VA Senior Career Scientist Award. In terms of self-management, Dr. Bosworth has expertise developing interventions to improve health behaviors related to hypertension, coronary artery disease, and depression, and has been developing and implementing tailored patient interventions to reduce the burden of other chronic diseases. These trials focus on motivating individuals to initiate health behaviors and sustaining them long term and use members of the healthcare team, particularly pharmacists and nurses. He has been the Principal Investigator of over 30 trials resulting in over 400 peer reviewed publications and four books. This work has been or is being implemented in multiple arenas including Medicaid of North Carolina, private payers, The United Kingdom National Health System Direct, Kaiser Health care system, and the Veterans Affairs.

Areas of Expertise: Health Behavior, Health Services Research, Implementation Science, Health Measurement, and Health Policy

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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