Engaging stakeholders in the refinement of an evidence-based remotely delivered epilepsy self-management program for rural populations

Carol Blixen; Gena Ghearing; Owen Wade; Kari Colon-Zimmerman; Maegan Tyrrell; Martha Sajatovic

doi:10.1016/j.yebeh.2021.107942

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Engaging stakeholders in the refinement of an evidence-based remotely delivered epilepsy self-management program for rural populations

Journal article

Open access

Peer reviewed

Engaging stakeholders in the refinement of an evidence-based remotely delivered epilepsy self-management program for rural populations

Carol Blixen, Gena Ghearing, Owen Wade, Kari Colon-Zimmerman, Maegan Tyrrell and Martha Sajatovic

Epilepsy & behavior, Vol.118, pp.107942-107942

05/2021

DOI: 10.1016/j.yebeh.2021.107942

PMCID: PMC8107125

PMID: 33845345

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https://www.ncbi.nlm.nih.gov/pmc/articles/8107125View

Open Access

Abstract

A growing body of research supports self-management approaches that can improve outcomes in people living with epilepsy (PLWE). An evidence-based remotely delivered self-management program (SMART) that was successfully delivered in an urban/suburban setting has the potential to be particularly helpful to PLWE who live in rural communities, where heavy stigma burden and limited access to healthcare is common. In this Phase 1 exploratory study, focus groups of key rural stakeholders (PLWE, family members, care providers) were used to: (1) gather information on factors that may impede or facilitate participation in SMART and (2) elicit overall perceptions of the program, as well as suggestions and feedback for refining it for implementation in Phase 2 of the randomized controlled study (RCT). Qualitative data analysis revealed that focus group participants identified geographic and social isolation, and the more limited access to epilepsy care, as the major barriers to epilepsy self-management for rural populations. However, they felt strongly that SMART could fill an epilepsy care gap in rural communities, and provided suggestions for recruitment and retention strategies of subjects, as well as improvement/modifications to the program curriculum for the Phase 2 RCT.

Epilepsy - therapy

Family

Focus Groups

Humans

Rural Population

Self-Management

Details

Title: Subtitle: Engaging stakeholders in the refinement of an evidence-based remotely delivered epilepsy self-management program for rural populations
Creators: Carol Blixen - Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
Gena Ghearing - University of Iowa
Owen Wade - University of Iowa
Kari Colon-Zimmerman - Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
Maegan Tyrrell - University of Iowa
Martha Sajatovic - Case Western Reserve University
Resource Type: Journal article
Publication Details: Epilepsy & behavior, Vol.118, pp.107942-107942
DOI: 10.1016/j.yebeh.2021.107942
PMID: 33845345
PMCID: PMC8107125
NLM abbreviation: Epilepsy Behav
ISSN: 1525-5050
eISSN: 1525-5069
Grant note: U48 DP006389 / NCCDPHP CDC HHS UL1 TR002548 / NCATS NIH HHS UL1 TR000439 / NCATS NIH HHS U48DP006389 / ACL HHS
Language: English
Date published: 05/2021
Academic Unit: Neurology
Record Identifier: 9984302202902771

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