COVID-19 Pandemic Experiences among People with Epilepsy: Effect on Symptoms of Co-Occurring Health Conditions and Fear of Seizure

Objective The Coronavirus disease 2019 (COVID-19) pandemic profoundly affected people worldwide, but little is known about how it impacted people with epilepsy (PWE). We examined the associations between COVID-19 stressors and health outcomes including increases in other health symptoms and fear of seizure among PWE. Methods This cross-sectional study used data from an online survey which asked about demographic characteristics, health conditions, and potential life stressors during COVID-19. Data were collected from October 30-December 8, 2020. COVID-19 stressors were anger, anxiety, stress, healthcare access, fear of seeking healthcare, social isolation, sense of control over their lives, and alcohol consumption. A binary variable was created for each of these measures to indicate whether PWEs experienced a negative change versus a neutral or positive change. We used multivariable logistic regression to assess the associations of COVID-19 stressors with primary outcomes: exacerbated co-occurring health conditions and increasing fear of seizure during the pandemic. Results Of the 260 PWE included in the study, 165 (63.5%) were women;the average age was 38.7 years. During the survey administration period, 79 (30.3%) of the respondents reported exacerbated co-occurring health conditions, and 94 (36.2%) reported an increased fear of seizures. Regression results indicated that the fear of seeking healthcare during COVID-19 was associated with both exacerbated co-occurring health conditions (aOR 1.12;95%CI 1.01-1.26) and increasing fear of seizure (aOR 2.31;95%CI 1.14–4.68). Social isolation was associated with exacerbated co-occurring health conditions during COVID-19 (aOR 1.14;95%CI 1.01-1.29). Reduced access to physical healthcare was associated with increasing fear of seizure (aOR 2.58;95%CI 1.15-5.78). Conclusion A considerable number of PWE experienced more symptoms of existing health conditions and fear of seizure during the initial year of the pandemic (2020). Fear of seeking healthcare services was associated with both negative outcomes. Assuring access to health care and reducing social isolation could potentially reduce negative outcomes for PWE. It is necessary to provide adequate support for PWE to reduce risks as COVID-19 continues to be a health concern.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Introduction Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy for those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden. Methods Caregivers of adults with epilepsy (n=261) were recruited through Qualtrics Panels to participate in an online survey examining health, wellbeing, COVID-19 experiences, and caregiver burden from October-December, 2020. Burden was measured using the Zarit 12-item measure;clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. Results Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. Discussion Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. Conclusion Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.

INTRODUCTION: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences - namely those related to their health, healthcare access, and well-being - were associated with their caregiving burden. METHODS: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. RESULTS: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DISCUSSION: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. CONCLUSION: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Post-9/11 veterans perceptions of the pandemic: Areas of greatest impact on health and well-being.

Objective: Assess potential impacts of the COVID-19 pandemic on a subset of Post-9/11 U.S. Veterans included in a study of post-traumatic epilepsy (PTE). Methods: Two measures were added to a structured health interview for Veterans during temporary pandemic research shutdown: a validated health questionnaire [1] previously completed by survey, and a semi-structured instrument developed to assess whether pandemic conditions affected responses to the health questionnaire and identify unique impacts. Interviews were conducted between August 2020 - February 2021. Scaled items were calculated and t-tests used to compare results. Open-ended items were coded using thematic analyses. Results: Veterans identified eight major areas of impact with negative and positive impacts: mental health, family, social, work/employment, access to resources, physical health, finances, and education. Innovation: The temporary shut-down of a large health study for Post-9/11 Veterans provided an opportunity to devise an instrument to assess COVID-19's impact on health and well-being. The instrument was accepted as of the first Veteran instrument in a pandemic SDOH research repository [2], and is being used in other studies. Conclusion: This study highlights the need to assess and understand interrelated relationships of factors impacting health and well-being, especially as COVID-19 moves from pandemic to endemic with reverberating effects across multiple social determinants of health (SDOH).

Leveraging anthropological expertise to respond to the COVID-19 global mental health syndemic.

This commentary asks anthropologists to work within communities to actively address the global mental health impact of COVID-19 and contribute to the pandemic response. Multiple social and physical losses, worsened by numerous factors, have produced syndemic traumatic stress and suffering across populations, highlighting persistent inequalities further amplified by the effects of COVID-19. Specifically, anthropologists can work to contribute to the development of mental health programs; confront the racialization of COVID-19 alongside marginalized communities; support real-time policy making with community responses; and innovate transparent collaborative research methods through open science. This pandemic can serve as an opportunity to prioritize research endeavors, public service, and teaching to better align with societal needs while providing new opportunities for synergy and collaborations between anthropologists in and outside the academy. Anthropologists collaborating directly with mental health clinicians and the public can contribute to knowledge specifically through direct program development and implementation of interventions designed to improve mental well-being. Innovating to find impactful solutions in response to the unprecedented mental health challenges exacerbated by the COVID-19 pandemic has the potential to promote more equitable recovery around the world.