Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods.
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BackgroundEpilepsy 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.
MethodsWe 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.
ResultsThe 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).
ConclusionIdentification 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 registrationPROSPERO registration number is CRD42018098604.
Published Version (Please cite this version)
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.
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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.
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.
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.
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