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Epilepsy Self-Management During a Pandemic: Experiences of People with Epilepsy

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Epilepsy Self-Management During a Pandemic: Experiences of People with Epilepsy YEBEH-107238; No of Pages 6 Epilepsy & Behavior 111 (2020) 107238 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh Epilepsy self-management during a pandemic: Experiences of people with epilepsy Wendy R. Miller ⁎, Jane Von Gaudecker, Andrea Tanner, Janice M. Buelow Indiana University School of Nursing, United States of America article info abstract Article history: The purpose of this descriptive study was to, from the perspective of adult people with epilepsy (PWE) and care- Received 25 April 2020 givers of PWE, explore the effects of the current pandemic and resulting societal changes on epilepsy self- Accepted 3 June 2020 management. Ninety-four respondents completed a mixed-methods quantitative and qualitative survey focused Available online xxxx 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 Keywords: Epilepsy self-management see epilepsy providers, as well as increased stress, social isolation, and changes in routine were all reported as COVID-19 troublesome, and more than one-third of the sample reported an increase in seizure frequency since the onset Pandemic of the pandemic. Suggestions are given regarding how to support PWE during future COVID-19 outbreaks and Nursing research to better prepare PWE and their caregivers for any life-altering events, such as a pandemic, with robust self-man- agement skills that will allow them to maintain the highest level of function possible. © 2020 Elsevier Inc. All rights reserved. 1. Introduction some states enacted social distancing during the 1918 Spanish Flu pandemic [3]. The 2020 novel coronavirus SARS-CoV-2 and subsequent coronavirus President Trump has ordered the nation to follow drastic social dis- disease-19 (COVID-19) pandemic has caused unprecedented societal dis- tancing guidelines, which include staying at least six feet apart from ruption worldwide. Social distancing mandates combined with extreme others outside of family, only leaving the house for essential purposes, stress on the United States (US) healthcare system have rendered daily and working from home whenever possible. Universities and schools life in the US nearly unrecognizable. While most Americans' daily lives across the nation have halted in-person classes, transitioning to online and routines have markedly changed during the pandemic, Americans learning, and 80% of Americans are under governor-enacted lockdown with chronic disease, including epilepsy, are at unique risk for health- orders. A majority of states have restricted gatherings and prohibited related disruptions. Both Federal and state mandates put in place to all but essential travel outside the home; some states have formal “shel- quell the spread of COVID-19, and the risk of contracting the virus, have ter-in-place” orders in effect [4]. Even in states beginning to open, daily potentially created unique barriers for those with epilepsy. environments are far from normal. First reported in China, COVID-19 is caused by a novel virus that In the midst of a personal protective equipment and ventilator short- leads to respiratory illness in varying degrees of severity, from asymp- age, governors have halted nonemergent surgeries and procedures, and tomatic to respiratory failure and death. Nearly 3 million cases of many health clinics are closed or only seeing patients in the event of an COVID-19 have been confirmed globally, with the US currently having emergency [5]. These necessary precautions have resulted in not only the most at nearly 1 million confirmed cases; nearly 200,000 people economic collapse but also extreme alterations in a healthcare system [1], including more than 50,000 Americans [2], have died from COVID- on which 3 million Americans rely for treatment and management of 19. Given its novelty, COVID-19 has been especially difficult to contain, their epilepsy, a condition which the Centers for Disease Control and with public health experts scrambling to determine details about the Prevention (CDC) has indicated increases the risk for serious COVID- virus' spread and ability to live on surfaces. The unknown aspects of 19 infection [6]. In the midst of a healthcare crisis focused on preventing the highly contagious virus' spread and effective treatment have caused and treating COVID-19, another question arises—how does the pan- Federal- and state-level government action on a scale not seen since demic affect the health of patients not affected by COVID-19, and espe- cially those managing chronic diseases like epilepsy? This question is especially important to consider given that the nation will likely have ⁎ Corresponding author. to engage in additional rounds of social distancing until a vaccine for E-mail address: [email protected] (W.R. Miller). COVID-19 is available [7]. https://doi.org/10.1016/j.yebeh.2020.107238 1525-5050/© 2020 Elsevier Inc. All rights reserved. 2 W.R. Miller et al. / Epilepsy & Behavior 111 (2020) 107238 Epilepsy self-management is key to achievement of epilepsy-related Table 1 outcomes [8] and refers to a patient managing the treatments and day- Demographic information, N = 94. to-day lifestyle changes associated with epilepsy. Specifically, epilepsy Sex – Male n = 47 (50%) self-management is the process during which patients incorporate mul- – Female n = 47 (50%) tidimensional strategies that meet their self-identified needs to manage Age Mean = 36, range: 19–88 – and cope with epilepsy within the context of their daily living; success- Caregiver/PWE Caregiver n = 16 (17%) – PWE n = 78 (83%) ful management of both functioning in day-to-day life along with man- Ethnicity – White n = 75 (80%) agement of chronic illness requires the individual to continually – African American n = 9 (9%) monitor health and functional status and take appropriate actions dur- – American Indian/Alaskan native n = 4 (4%) – fi ing acute phases, and this management often involves a familial care- Native Hawaiian/Paci c Islander n = 3 (4%) – Asian n = 2 (2%) giver [9]. The COVID-19 pandemic creates a rare opportunity to – Other n = 1 (1%) explore how epilepsy self-management is altered when societal, eco- Area of United – Midwest n = 28 (30%) nomic, and healthcare structures do not exist in their usual forms in States – Northeast n = 18 (19%) the US. The purpose of this descriptive study was to, from the perspec- – Mid-Atlantic n = 17 (18%) – tive of adult people with epilepsy (PWE) and caregivers of PWE, explore West n = 16 (17%) – Northwest n = 6 (7%) the effects of the current pandemic and resulting societal changes on – Southeast n = 6 (6%) epilepsy self-management. Specifically, we sought to explore how man- – Southwest n = 3 (3%) dated isolation, social distancing orders, closure of many businesses, Annual income – b$10,000 n = 5 (5%) – – and COVID-19 infections have affected PWE and their caregivers' ability $10K $19,999 n = 6 (6%) – $20K–$29,999 n = 2 (3%) to self-manage (control seizures, access medications, manage triggers, – $30K–$39,999 n = 10 (11%) and communicate with providers). Further, we explored the frequency – $40K–$49,999 n = 15 (16%) and severity of affective symptoms, as well as other PWE- and – $50K–$59,999 n = 12 (13%) caregiver-identified difficulties that have arisen during the pandemic. – $60K–$69,999 n = 7 (7%) – $70K–$79,999 n = 13 (14%) – $80K–$89,999 n = 7 (7%) 2. Materials and methods – $90K–$99,999 n = 3 (3%) – $100K–$149,999 n = 11(12%) The study was submitted to the Indiana University IRB and deemed – N$150,000 n = 3 (3%) – exempt. Using social media, an advertisement for the survey was shared Employment Employed full-time n = 72 (77%) status – Employed part-time n = 13 (14%) via various epilepsy-related Facebook pages and via Twitter with the – Unemployed/looking for work n = 2 (2%) appropriate hashtags to render it searchable (#COVID-19, #epilepsy, – Unemployed/not looking for work n = 2 (2%) #pandemic, and #research). Organic sharing of the advertisement – Student n = 3 (3%) from members of these groups also occurred. All participants self- – Disability n = 2 (2%) – referred to the study via the link embedded in the online advertisement. Education High school graduate n = 4 (4%) – Some college n = 7 (7%) Inclusion criteria were the following: age 18 years or older, a person – 2-Year college degree n = 10 (10%) diagnosed with epilepsy taking antiseizure medication OR the caregiver – 4-Year college degree n = 60 (65%) of a child/loved one with epilepsy currently taking antiseizure medica- – Master's degree n = 12 (13%) – tion for epilepsy, fluent in English, reliable access to the Internet, and Doctoral degree n = 1 (1%) Relationship – Married n = 70 (74%) currently living in the US. Participants lacking these criteria were ex- status – Widowed n = 3 (3%) cluded and automatically directed to the end of the survey. The survey – Divorced n = 10 (10%) included a total of 65 questions, 50 of which were relevant to this man- – Separated n = 1 (1%) uscript, and included questions related to demographics, perceived – Single/never married n = 5 (6%) – changes in epilepsy self-management, social distancing, and affective Partnered or dating but not married n = 5 (6%) Seizure – Well-controlled, periods of seizure freedom one year or greater symptoms since the pandemic began. The data were collected over a frequency n = 28 (30%) three-day period, from March 27 to March 30, 2020. During this three – Somewhat well-controlled, with periods of seizure freedom six day period, 31 states were under some version of stay-at-home orders. months to one year n = 47 (50%) Using SPSS version 26, descriptive statistics were run on all quantita- – Uncontrolled, with periods of seizure freedom three to six months n = 10 (11%) tive variables. Paired t-tests were used to detect statistically significant – Very uncontrolled, with periods of seizure freedom less than differences on items that involved respondents providing a pre- and three months n = 6 (6%) postpandemic score.
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