Changes to Family Caregiving of Older Adults and Adults with Disabilities during COVID-19

Abstract

The strict restrictions to reduce the spread of COVID-19 have disrupted the lives of many at-risk people and their family caregivers. This study explored how family caregivers perceived that family caregiving had changed during COVID-19 and the strategies they used to cope with these changes. We conducted 52 semi-structured interviews with family caregivers of adults over age 65 or adults with disabilities and analyzed the data through an inductive thematic analysis. Caregivers perceived the largest COVID-19-related caregiving changes to be limited social and physical contacts, changed caregiving tasks, reduced services and supports, and a new focus on vigilance and safety. Caregivers made numerous changes to caregiving, including keeping connected, keeping relatives occupied, getting support and services in new ways, and reducing caregiver stress.

Informal Caregiving During the COVID-19 Pandemic in the US: Background, Challenges, and Opportunities

“…For example, a recent qualitative study found that caregivers are reporting added challenges of caregiving during the pandemic, which included keeping connected with the care recipient and social supports, keeping care recipients occupied despite reduced social stimulation, and seeking support and services in new ways, primarily through technology. 43 However, not all informal caregivers had the financial and technological capabilities of seeking additional supports, which presents the potential for COVID-19 to widen further existing gender, racial/ethnic, socioeconomic, and geographic disparities among informal caregivers. A study comparing the experiences of rural caregivers to urban and suburban caregivers during the pandemic found that rural caregivers were more than twice as likely to report a substantial increase in caregiver burden due to COVID-19 than urban caregivers.…”

Care Challenges Due to COVID-19 and Mental Health Among Caregivers of U.S. Adults With a Chronic or Disabling Condition

“…While the pandemic-specific challenges and support items developed for the National Poll on Healthy Aging are not an exhaustive list of all challenges or enhanced supports caregivers experienced during the pandemic, they do align with themes from recent in-depth qualitative interviews conducted with family caregivers during the pandemic. Lightfoot et al’s qualitative work found caregivers placed a new primary focus on safety and prevention of exposure, for example, which changed the caregiving role and responsibilities ( Lightfoot, Moone et al, 2021 ; Lightfoot, Yun et al, 2021 ). Additionally, as examined in our study, they found less availability of supports and services and reduced social contacts and isolation to be common pandemic care challenges.…”

“…The poll format utilizes brief items with simple response scales across multiple domains. The caregiving measures described below stem from this measurement perspective and align with emerging qualitative work on challenges caregivers encountered during the COVID-19 pandemic ( Lightfoot, Moone et al, 2021 ; Lightfoot, Yun et al, 2021 ).…”

“…Large surveys from both Germany and the United Kingdom suggested caregiver burden was particularly difficult for those caregivers who usually relied on professional help and had difficulty accessing social services, suggesting the limitation of this resource had a large impact on family caregivers ( Budnick et al, 2021 ; Giebel, 2021 ). In-depth qualitative interviews with caregivers during the pandemic expound upon challenges caregivers identified which may affect their stress including social isolation, reduced social contacts, care recipient’ health declines, changes in focus to safety and COVID-19 prevention, lack of supports and services, and new caregiving responsibilities ( Lightfoot, Moone et al, 2021 ; Lightfoot, Yun et al, 2021 ). However, benefits of providing care during a pandemic were also detailed such as care innovations (e.g., enhanced technology, relationship building with the care recipient, and slowing the pace of life and responsibilities).…”

A cross-sectional study of the mismatch between telecommuting preference and frequency associated with psychological distress among Japanese workers in the COVID-19 pandemic

“…Providing such care would typically take up a substantial amount of time, and going to work may offer these workers some respite that would no longer be available if they were to telecommute. In addition, attendance at nursery schools and elderly care facilities was likely interrupted during the COVID-19 pandemic, 20–25 making such care impossible to avoid while telecommuting.…”