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

Publisher: Academic Press Country of Publication: United States NLM ID: 100892858 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1525-5069 (Electronic) Linking ISSN: 15255050 NLM ISO Abbreviation: Epilepsy Behav Subsets: MEDLINE

Original Publication: San Diego, CA : Academic Press, c2000-

Caregiver Burden*/psychology ; Caregivers*/psychology ; COVID-19*/epidemiology ; Epilepsy* ; Psychological Distress*; Humans ; Adult ; Pandemics ; Mental Health ; Middle Aged ; Cross-Sectional Studies ; Male ; Female ; Adolescent ; Aged

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.
Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: None.
(Published by Elsevier Inc.)

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IK6 BX004208 United States BX BLRD VA

Keywords: COVID-19; Caregiver Burden; Epilepsy; Family Caregivers

Date Created: 20230312 Date Completed: 20230823 Latest Revision: 20230823

20231215

PMC9968611

10.1016/j.yebeh.2023.109151

36907084