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. 2020 Oct:111:107238.
doi: 10.1016/j.yebeh.2020.107238. Epub 2020 Jun 25.

Epilepsy self-management during a pandemic: Experiences of people with epilepsy

Wendy R Miller  1 , Jane Von Gaudecker  2 , Andrea Tanner  2 , Janice M Buelow  2
Affiliations

Epilepsy self-management during a pandemic: Experiences of people with epilepsy

Wendy R Miller et al. Epilepsy Behav. 2020 Oct.

Abstract

The purpose of this descriptive study was to, from the perspective of adult people with epilepsy (PWE) and caregivers of PWE, explore the effects of the current pandemic and resulting societal changes on epilepsy self-management. Ninety-four respondents completed a mixed-methods quantitative and qualitative survey focused on their epilepsy self-management experiences during the coronavirus disease-19 (COVID-19) pandemic. Respondents noted significant disruption in epilepsy self-management. Lack of ability to obtain medications or see epilepsy providers, as well as increased stress, social isolation, and changes in routine were all reported as troublesome, and more than one-third of the sample reported an increase in seizure frequency since the onset of the pandemic. Suggestions are given regarding how to support PWE during future COVID-19 outbreaks and to better prepare PWE and their caregivers for any life-altering events, such as a pandemic, with robust self-management skills that will allow them to maintain the highest level of function possible.

Keywords: COVID-19; Epilepsy self-management; Nursing research; Pandemic.

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Figures

Fig. 1
Fig. 1
Self-management difficulty rankings.
See this image and copyright information in PMC

Comment in

  • Doctors race to understand epilepsy in the time of COVID-19.
    de Almeida AG, Cysneiros RM, Scorza CA, Finsterer J, Scorza FA. de Almeida AG, et al. Epilepsy Behav. 2020 Nov;112:107356. doi: 10.1016/j.yebeh.2020.107356. Epub 2020 Aug 1. Epilepsy Behav. 2020. PMID: 32750636 Free PMC article. No abstract available.

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